Latest messages for CancerCompass discussion http://www.cancercompass.com/message-board/message/all,63755,0.htm Sat, 18 May 2013 00:00:00 GMT Sat, 18 May 2013 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ JohnnyO At what stage are you at now? Have you finished treatments? I read your first post and not sure how you are making out since it was ayear ago. I am 2 months out from treatments and so far after second pet scan am free of cancer. I had it in base of tongue.   gary gr0619064 Wed, 06 Feb 2013 00:00:00 GMT Hey Randall55! Good to hear from you, and congrats on being 14 months post-treatment! Thanks for your input on diet and exercise; it confirms what I was thinking, but it's always good to hear it again and again.  We all want to make sure we're doing the right thing and giving ourselves the best shot at cure.  Thanks for the prayers, as always, and I will offer some prayers for you, as well.  JohnnyO Wed, 06 Feb 2013 00:00:00 GMT Hey John - Many, many thanks for your detailed response to my question about P90x.  I think my instincts must be pretty good, because I decided not to do the low carb diet of the first 2 phases (anytime one food group is over- or under- emphasized is a red flag, in my opinion).  I figured that my increased metabolism from the program would ultimately take care of the extra carbs as I progress through the program. Much of what you mention about complex and simple carbs and when to eat them is covered in the program's materials, so it appears that whomever developed the program knew what they were doing.  So, for example, I follow-up my strength workouts with a carb/protein recovery drink, according to the program's advice.  I've also added a daily protein supplement (whey) to assist in building muscle. So far, so good with my workouts; I'm being careful to avoid injury, and I seem to be bouncing back pretty fast.  Hopefully I'll be able to achieve what you have in ovewrall fitness and cardio health (congrats there!). JohnnyO Wed, 06 Feb 2013 00:00:00 GMT On Feb 06, 2013 3:52 PM JohnnyO wrote: Thanks Diana, I'll look for Mark. God bless you for being cured.  It brings tears to my eyes to hear about it.  Thank you.Mark is live40mr In my five years on this site I believe he is the best person for you to talk to.  Johnny - God did bless me when I was diagnosed with a cancer that is cureable.  You will do great as well!!! Diana Dlynn1210 Wed, 06 Feb 2013 00:00:00 GMT Diana and Dave - I don't like sweet things, so staying away from sweets, natural or otherwise, is not difficult.  I have been eating fruit as part of my nutrition (and frankly, I don't like it all that much because it is sweet), but one can't completely remove sugars from their diet. Thanks for the advice, my friends. JohnnyO Wed, 06 Feb 2013 00:00:00 GMT Thanks Diana, I'll look for Mark. God bless you for being cured.  It brings tears to my eyes to hear about it.  Thank you. JohnnyO Wed, 06 Feb 2013 00:00:00 GMT To clarify - by "their" website, I meant Truvia's website. Diana Dlynn1210 Wed, 06 Feb 2013 00:00:00 GMT  Cancer loves sugar so I stay away from it as much as possible. The rare occasions I now eat pancakes, I use crushed berries intead of syrup. I switched to using Truvia, an all natural sweetener, after undergoing treatment because they offered it at CTCA.  I know CTCA is very nutrition orientated so thought they had to be making a statement.  I copied the below from their website.  From their website: Truvía®natural sweetener is natural, great-tasting sweetness born from the leaves of the stevia plant. Use it to add zero-calorie sweetness to your favorite foods and beverages like coffee, tea, fruit, yogurt, cereal and baked goods. Truvía® natural sweetener is available in sachet form in 40-ct, 80-ct, 140-ct, and 300-ct packages. In addition, Truvía® natural sweetener is available in a 9.8 oz spoonable jar which has the equivalent Truvía® natural sweetener as an 80-ct box. Diana Dlynn1210 Wed, 06 Feb 2013 00:00:00 GMT SUGAR: I had tonsil cancer 5 years ago. 1 year ago my wife had breast cancer, voluntary double mastectomy/reconstruction. Only had and takes an oral chemo pill. Doing fine   But........... We all 4 other clsoe friends have always used spelnda or sweet and low. Never Egual as it has aspartaime, known bad stuff.   Two months ago a freind of my wife's husband told us about their trip to MD Anderson.  The wife last year had breast cancer treatment there. After surgery the surgeon takes the husband to caefteria to chat about the wifes recovery (doing fine now). Hubby picks up a Splenda to sweeten his coffee and the doctor removes it from him and tosses it back.   The doctor told him   "If you have any kind of tumor in your body, good or bad, even small, using artificial sweetners is like putting fertilizer on a weedm it will enahnce its grwoth greatly" All of our freinds dropped artifical sweetners imediately, gone to sugar. I use Agarve in my coffee for sweetner. I'm 64, wife is 61. We both used artificial sweeters since out 20's. David   Diamond_David Wed, 06 Feb 2013 00:00:00 GMT On Feb 05, 2013 3:53 PM JohnnyO wrote: Hey there everyone!  Johnnyo here, still kickin' and just passed the year mark since they cut that lousy tumor out (on which, as you may remember, I would have stomped if they would have allowed me).  Hope that those of you who are post-treatment are doing well, and that those who are recently diagnosed and/or going through treatments are hanging tough and forging ahead with life as best as you can. Quick question for the sages out there:  I'm about 2 weeks into the P90x workout program, which is designed to cut fat and build muscle.  Part of the program is a reasonable meal plan involving high calories (low fat), high protein, and a balance of carbs, dairy, and vegetables.  I've read that exercise has been proven to help prevent recurrence, but I also know that the docs have always emphasized keeping my weight up.  My intention is to maintain my weight by replacing fat pounds with muscle pounds.  Has anyone heard that excess fat is preferable to muscle in providing energy reserves for recurrence?  I'd like to get rid of my pot belly and give my back a break, but I'd rather be a little chubby with a bad back than deal with getting sick again.  Thanks in advance for your opinions.  JohnnyoHi JohnnyVery glad you're progressing with recovery and doing well! The first thing one should do for recurrence prevention is ceasing or eliminating anything in their lifestyle or environment that are **scientifically** linked to their cancer. May or may not reduce their current risk level, but will prevent increasing it. There's a lot of mumbo-jumbo with misguided speculation, misinformation, and disinformation about what does or does not cause (or contribute to) cancer in general, or a specific cancer. A classic is the one about sugar causing cancer to grow faster; outright specious. Even in the scientific community, some studies are poorly done secondary research performed by culling through data gathered by other primary researchers (not a Bad Thing in itself if it's done properly, but the method has numerous pitfalls). In short, I trust what's been rigorously peer reviewed; most other claims I take with a grain of salt and some are specious on their face. Presuming you already did that (hopefully when you were diagnosed and began treatment), what you're doing now is the next step. In general, being overweight is not good for overall health. Neither is a high BMI (body mass index) even if one is not "classed" overweight (weight for a specific height, age and gender). A person's actual BMI is more definitive about whether they are overweight or underweight, but it requires an immersion test to calculate. On-line BMI calculators are only approximations. A high BMI isn't so much the problem. It's the dietary intake and typically sedentary lifestyle that maintain a high BMI, and how they affect the cardiovascular and immune systems. High BMI overweight and obese are higher risk for a variety of chronic diseases which drags the immune system down. The immune system is the first line of your body's natural defense for fending off recurrence. As difficult and imperfect as it may be for that task, every bit helps. The extreme immune system suppression for transplant patients has been linked to measurably higher occurrence rates of *some* cancers. You're after a stronger immune system and a high level of fitness strengthens it. Not only does it help prevent recurrence, it also helps speed up treatment recovery. I've pursued achieving a high fitness level since June 2010, about six weeks after finishing radiotherapy. Following is what I've learned in the past 30 months. Had to look up the P90x program to see what it is. The description in Wikipedia shows it to be a form of interval strength training with a combination of strength, endurance and cardiovascular workouts. Doesn't ignore endurance or cardio, but has more emphasis on strength building compared to interval systems for building endurance. WebMD characterized it as intense and aggressive, and not for those who are (outright) obese, have chronic disease (cardiovascular in particular) or physical limitations. I agree with their assessment after reading more details about some of the workouts. I don't want to discourage pursuing a high level of interval training, but do this program with some caution in the beginning so you do not hurt yourself in the process of trying to get there, having to stop to recover from that before resuming. You might try resting about a minute between the sets as you perform the circuit to allow some recovery time and stronger performance on the next set. Adding that interval element to your workout could build muscle mass a little more quickly. It's something to try doing until you get stronger. Not adding it works a little more on building endurance. Either will continue to push the cardio if done properly. Interval training will also gradually increase your metabolic rate, which helps with weight loss and maintenance. WebMD advises the diets in phases 1 and 2 should not be followed long term as they're too low in carbs (low carb is OK for a while). The system eventually shifts the protein to carb ratio. Be sure to follow that. Understanding the difference between simple and complex carbs is important. Simple carbs are basically sugars (natural and processed) that the body absorbs quickly and can provide very quick energy, but they're not much more than pure calories. Moderating simple carb intake is key. Consuming them is appropriate when rapid energy replenishment is needed with other nutrients and electrolytes during long endurance sports (e.g. marathons or triathlons). Complex carbs digest more slowly, won't spike your blood sugar as easily, are found in foods that typically contain other good nutrients, and are generally better for you at mealtime. Be careful about eliminating too much fat in your diet. Your body needs some to process other essential nutrients. There is a time window of about 30-60 minutes after a strenuous workout during which the body craves what it has burned and needs for recovery: a combination of carbs and protein with a *little* fat (to help process other nutrients). Within 30 minutes is ideal, but not always possible. Protein is needed to (re)build muscle fiber and carbs are needed to replenish depleted muscle glycogen. Provide an appropriate amount of each within this time window and your body will use most of it directly for a faster and more effective recovery. Marathon endurance activities have nutrition needs before and *during* the event to prevent "bonking" being scooped up by a broom wagon. Has same time window for recovery nutrition afterward as shorter events and interval training. The first principle for losing weight is controlling how much one consumes. What one consumes follows closely behind that, but eat too much of a proper diet and one will still gain weight (been there, done that). Be patient with the weight loss. You don't want to lose too much too quickly or you'll find it comes back much too easily because your body will not have adjusted itself yet to a new "norm" for weight and increased metabolic rate. Three years ago I had been a cigarette smoker for 35 years. The irony is all those years of smoking are not related to the origin of my cancer. Wasn't entirely sedentary, nor was I considered "overweight" (compared to the midwest's obesity and morbid obesity epidemic). Cholesterol was OK (a genetic blessing) and at rest BP was generally 128-130 / 80-85 with heart rate 75-80. BP and heart rate had been very slowly climbing though. Started pursuing endurance training, continually increasing in intensity as the cardiovascular system improved with some additional muscle mass. Converted some of that to interval training last Fall. That has increased aerobic endurance at a higher level of output, and the ability to go anaerobic longer with faster recovery. Just had my annual physical with my primary care doc. At rest BP 118 / 72 with a 63 heart rate (the same as I routinely measure at home). BMI is in the low 20's. Not bad for a 60 year-old former smoker; that's better than the average 21 year-old male. It can be done. With patience and persistence, you can do it too. Keep after it and increase the intensity levels as your strength grows and your cardio improves. Best Wishes for Success!John jalind Wed, 06 Feb 2013 00:00:00 GMT On Feb 05, 2013 3:53 PM JohnnyO wrote: Hey there everyone!  Johnnyo here, still kickin' and just passed the year mark since they cut that lousy tumor out (on which, as you may remember, I would have stomped if they would have allowed me).  Hope that those of you who are post-treatment are doing well, and that those who are recently diagnosed and/or going through treatments are hanging tough and forging ahead with life as best as you can. Quick question for the sages out there:  I'm about 2 weeks into the P90x workout program, which is designed to cut fat and build muscle.  Part of the program is a reasonable meal plan involving high calories (low fat), high protein, and a balance of carbs, dairy, and vegetables.  I've read that exercise has been proven to help prevent recurrence, but I also know that the docs have always emphasized keeping my weight up.  My intention is to maintain my weight by replacing fat pounds with muscle pounds.  Has anyone heard that excess fat is preferable to muscle in providing energy reserves for recurrence?  I'd like to get rid of my pot belly and give my back a break, but I'd rather be a little chubby with a bad back than deal with getting sick again.  Thanks in advance for your opinions.  JohnnyoHey JohnnyO !!! Glad to hear the news! I am now 14 months post treatment and all is good. Excercise, I am told is the absolute best way to fight off reacurrence. Excercise does include diet. My saving grace was that I was designated a nutritionist when I was going through all of this and she helped me understand my food intake as well. One of the things I have found out is that replacing fat with muscle is the optimum and is the way to go. Eating right and excercise is the ticket!! I have finally got myself into a regime .. the first to conquer was eatinmg habits. Right foods, cereals, grains, fruits, veggies and YES meant! Chicken fish and a littlke lower intake if any of the red meats. As i got this into mangment I staryted with light excercise and lkight weights. This took a good 12 months of adjustment and through it all I basically manitained my weight numbers give or take a pound. I have most recently now taken up running. The muscle tone is starting to come back now and proofg in the pudding was the fact that on my last check-up I had gained 10lbs!! Yet there was not fat gain ..it was all muscle and you can now start to see that on me. My legs are stronger, even my arms are more defined and my heart rate is incredible. Excercise is the ticket for sure. Glad to hear your doing well ... oh by the way ... the excercise is tgreat for your brain too ... maybe I'm nort any smarter but I sure can manage better, think straighter and have WAY less stress!! Keep up the good work. IU still pray for you so you know! God Bless! Randall55 Tue, 05 Feb 2013 00:00:00 GMT On Feb 05, 2013 3:53 PM JohnnyO wrote: Hey there everyone!  Johnnyo here, still kickin' and just passed the year mark since they cut that lousy tumor out (on which, as you may remember, I would have stomped if they would have allowed me).  Hope that those of you who are post-treatment are doing well, and that those who are recently diagnosed and/or going through treatments are hanging tough and forging ahead with life as best as you can. Quick question for the sages out there:  I'm about 2 weeks into the P90x workout program, which is designed to cut fat and build muscle.  Part of the program is a reasonable meal plan involving high calories (low fat), high protein, and a balance of carbs, dairy, and vegetables.  I've read that exercise has been proven to help prevent recurrence, but I also know that the docs have always emphasized keeping my weight up.  My intention is to maintain my weight by replacing fat pounds with muscle pounds.  Has anyone heard that excess fat is preferable to muscle in providing energy reserves for recurrence?  I'd like to get rid of my pot belly and give my back a break, but I'd rather be a little chubby with a bad back than deal with getting sick again.  Thanks in advance for your opinions.  JohnnyoThe perfect person to respond to you if he sees this is Mark.  He bikes in marathons, trianthalons, and is an avid exercise buff.  I remember my oncologist saying that "other than having cancer, you are in great shape".  That seemed a strange thing to say at the time but I now understand - I was a good weight (maybe 5 or 6 pounds over) and exercised regularly.  I was in better health than most to begin with and would hold up against treatment.  I am five years post treatment and told last Oct that my oncologist now considers me cured of head and neck cancer.  Diana    Dlynn1210 Tue, 05 Feb 2013 00:00:00 GMT Hey there everyone!  Johnnyo here, still kickin' and just passed the year mark since they cut that lousy tumor out (on which, as you may remember, I would have stomped if they would have allowed me).  Hope that those of you who are post-treatment are doing well, and that those who are recently diagnosed and/or going through treatments are hanging tough and forging ahead with life as best as you can. Quick question for the sages out there:  I'm about 2 weeks into the P90x workout program, which is designed to cut fat and build muscle.  Part of the program is a reasonable meal plan involving high calories (low fat), high protein, and a balance of carbs, dairy, and vegetables.  I've read that exercise has been proven to help prevent recurrence, but I also know that the docs have always emphasized keeping my weight up.  My intention is to maintain my weight by replacing fat pounds with muscle pounds.  Has anyone heard that excess fat is preferable to muscle in providing energy reserves for recurrence?  I'd like to get rid of my pot belly and give my back a break, but I'd rather be a little chubby with a bad back than deal with getting sick again.  Thanks in advance for your opinions.  Johnnyo JohnnyO Tue, 05 Feb 2013 00:00:00 GMT Hi Johnny O! I'm six years out from stage 4, and like others also figured that it might be the end, but finally decided I just wanted to find docs that would help me kill it off.  Modified RND, (4) types of chemo and 33 rads - so far so good.  Treatment was a bitch but will the help of many I'm still around to irritate people!!  Nobody can be sure of the outcome, but with the advances in the last few years the odds are much better.  Lots of research related to HPV, new treatments, etc. Don't know if you are aware of SPOHNC, they are a support organization that was very helpful - in fact my wife and I are part of their support network (usually me with the patient and my wife with the caregiver(s).  Take a look at the link below (it's a campaign I started recently to help raise funds for the organization; there is a link to SPOHNC lower in the page - please pass on to those that might have an interest). SPOHNC can link you up with someone that shared your diagnosis, someone who has been there and understands your feelings and concerns. http://www.indiegogo.com/head-and-neck?a=1034285 Hang tough!! Willc Sat, 15 Sep 2012 00:00:00 GMT love it:0)) Randall55 Thu, 06 Sep 2012 00:00:00 GMT On Sep 06, 2012 7:56 PM Randall55 wrote: On Sep 06, 2012 7:50 PM Diamond_David wrote: On Sep 06, 2012 7:31 PM Dlynn1210 wrote: On Sep 06, 2012 7:18 PM JohnnyO wrote: Dave - Thanks for the advice.  I  think I'll pass on the drugs. Diana - Thanks for the attitude adjustment.  It's hard to adjust to the fact that I'll never be "normal" again, so I'm at least trying to feel as normal as possible.  I hear you, though; it is so good to be alive.Johnny - Take it from me - you are normal.  Naturally we consider "normal" what we are living when we are diagnosed but we have to readjust our thinking and wrap our minds around a new normal post treatment.  It really helps to keep in mind that we are very very very fortunate individuals.  Every once in a while, I moan over it taking me longer to eat than it used to but then I remember my grandmother's words.  Whenever she thought I was feeling sorry for myself over something she would encourage me to look around me because "I would always find someone in worse shape".  She was one very smart lady.  Patience, sweetie, patience - you will improve and one day be able to look back on this as a very distant memory.  Diana     My mother in law had a good aying   "If eberyone put their troubles on a clothes line and you had to pick one to take back with you, you'd take yours and run like hell" DavidLove that one .... JUst spoke to my Mom ... she buried her first daughter (my sister) 8 years ago at 52 (breast cancer) and lost her husband of 62 years (my father) to prostate cancer 1 year ago this past Father's Day ... she's 82 and told me, when I asked how she was doing this morning, that she woke up and saw that nobody had thrown the sod over her so all was good!!!!  You just gotta have the attitude ... now when people ask how I'm doing I tell them all "way better than I deserve!!" Just keep going and never look back ... you can't change history, but you sure can make it!! R Randall - Another really good one! Life lessons that the older generation can teach us is priceless. My Dad had a smiliar saying as your mother. He said when he woke up every morning and found he wasn't listed in the obituary section of the newspaper, he knew it was going to be a good day. It ALL has to do with our attitude - it can make or break you. I also like "your" saying because it is so true - we can't change history but we can make it. I work each and every day in an attempt to make someone's life a little better - to make the most of the additional time that God has given me while here on Earth. Diana Dlynn1210 Thu, 06 Sep 2012 00:00:00 GMT On Sep 06, 2012 7:56 PM Randall55 wrote: On Sep 06, 2012 7:50 PM Diamond_David wrote: On Sep 06, 2012 7:31 PM Dlynn1210 wrote: On Sep 06, 2012 7:18 PM JohnnyO wrote: Dave - Thanks for the advice.  I  think I'll pass on the drugs. Diana - Thanks for the attitude adjustment.  It's hard to adjust to the fact that I'll never be "normal" again, so I'm at least trying to feel as normal as possible.  I hear you, though; it is so good to be alive.Johnny - Take it from me - you are normal.  Naturally we consider "normal" what we are living when we are diagnosed but we have to readjust our thinking and wrap our minds around a new normal post treatment.  It really helps to keep in mind that we are very very very fortunate individuals.  Every once in a while, I moan over it taking me longer to eat than it used to but then I remember my grandmother's words.  Whenever she thought I was feeling sorry for myself over something she would encourage me to look around me because "I would always find someone in worse shape".  She was one very smart lady.  Patience, sweetie, patience - you will improve and one day be able to look back on this as a very distant memory.  Diana     My mother in law had a good aying   "If eberyone put their troubles on a clothes line and you had to pick one to take back with you, you'd take yours and run like hell" DavidLove that one .... JUst spoke to my Mom ... she buried her first daughter (my sister) 8 years ago at 52 (breast cancer) and lost her husband of 62 years (my father) to prostate cancer 1 year ago this past Father's Day ... she's 82 and told me, when I asked how she was doing this morning, that she woke up and saw that nobody had thrown the sod over her so all was good!!!!  You just gotta have the attitude ... now when people ask how I'm doing I tell them all "way better than I deserve!!" Just keep going and never look back ... you can't change history, but you sure can make it!! R Randall - Another really good one!  Life lessons that the older generation can teach us is priceless.  My Dad had a smiliar saying as your mother.  He said when he woke up every morning and found he wasn't listed in the obituary section of the newspaper, he knew it was going to be a good day.  It ALL has to do with our attitude - it can make or break you.  I also like "your" saying because it is so true - we can't change history but we can make it.  I work each and every day in an attempt to make someone's life a little better - to make the most of the additional time that God has given me while here on Earth.      Diana Dlynn1210 Thu, 06 Sep 2012 00:00:00 GMT On Sep 06, 2012 7:50 PM Diamond_David wrote: On Sep 06, 2012 7:31 PM Dlynn1210 wrote: On Sep 06, 2012 7:18 PM JohnnyO wrote: Dave - Thanks for the advice.  I  think I'll pass on the drugs. Diana - Thanks for the attitude adjustment.  It's hard to adjust to the fact that I'll never be "normal" again, so I'm at least trying to feel as normal as possible.  I hear you, though; it is so good to be alive.Johnny - Take it from me - you are normal.  Naturally we consider "normal" what we are living when we are diagnosed but we have to readjust our thinking and wrap our minds around a new normal post treatment.  It really helps to keep in mind that we are very very very fortunate individuals.  Every once in a while, I moan over it taking me longer to eat than it used to but then I remember my grandmother's words.  Whenever she thought I was feeling sorry for myself over something she would encourage me to look around me because "I would always find someone in worse shape".  She was one very smart lady.  Patience, sweetie, patience - you will improve and one day be able to look back on this as a very distant memory.  Diana     My mother in law had a good aying   "If eberyone put their troubles on a clothes line and you had to pick one to take back with you, you'd take yours and run like hell" DavidDavid - I absolutely love it - and I will quote that along with my grandmother's saying in the future although I will change one word.  I absoltuely love it - did I say that already?  But it was worth repeating.  Thank you for sharing! Diana    Dlynn1210 Thu, 06 Sep 2012 00:00:00 GMT On Sep 06, 2012 7:50 PM Diamond_David wrote: On Sep 06, 2012 7:31 PM Dlynn1210 wrote: On Sep 06, 2012 7:18 PM JohnnyO wrote: Dave - Thanks for the advice.  I  think I'll pass on the drugs. Diana - Thanks for the attitude adjustment.  It's hard to adjust to the fact that I'll never be "normal" again, so I'm at least trying to feel as normal as possible.  I hear you, though; it is so good to be alive.Johnny - Take it from me - you are normal.  Naturally we consider "normal" what we are living when we are diagnosed but we have to readjust our thinking and wrap our minds around a new normal post treatment.  It really helps to keep in mind that we are very very very fortunate individuals.  Every once in a while, I moan over it taking me longer to eat than it used to but then I remember my grandmother's words.  Whenever she thought I was feeling sorry for myself over something she would encourage me to look around me because "I would always find someone in worse shape".  She was one very smart lady.  Patience, sweetie, patience - you will improve and one day be able to look back on this as a very distant memory.  Diana     My mother in law had a good aying   "If eberyone put their troubles on a clothes line and you had to pick one to take back with you, you'd take yours and run like hell" DavidLove that one .... JUst spoke to my Mom ... she buried her first daughter (my sister) 8 years ago at 52 (breast cancer) and lost her husband of 62 years (my father) to prostate cancer 1 year ago this past Father's Day ... she's 82 and told me, when I asked how she was doing this morning, that she woke up and saw that nobody had thrown the sod over her so all was good!!!!  You just gotta have the attitude ... now when people ask how I'm doing I tell them all "way better than I deserve!!" Just keep going and never look back ... you can't change history, but you sure can make it!! R Randall55 Thu, 06 Sep 2012 00:00:00 GMT On Sep 06, 2012 7:31 PM Dlynn1210 wrote: On Sep 06, 2012 7:18 PM JohnnyO wrote: Dave - Thanks for the advice.  I  think I'll pass on the drugs. Diana - Thanks for the attitude adjustment.  It's hard to adjust to the fact that I'll never be "normal" again, so I'm at least trying to feel as normal as possible.  I hear you, though; it is so good to be alive.Johnny - Take it from me - you are normal.  Naturally we consider "normal" what we are living when we are diagnosed but we have to readjust our thinking and wrap our minds around a new normal post treatment.  It really helps to keep in mind that we are very very very fortunate individuals.  Every once in a while, I moan over it taking me longer to eat than it used to but then I remember my grandmother's words.  Whenever she thought I was feeling sorry for myself over something she would encourage me to look around me because "I would always find someone in worse shape".  She was one very smart lady.  Patience, sweetie, patience - you will improve and one day be able to look back on this as a very distant memory.  Diana     My mother in law had a good aying   "If eberyone put their troubles on a clothes line and you had to pick one to take back with you, you'd take yours and run like hell" David Diamond_David Thu, 06 Sep 2012 00:00:00 GMT On Sep 06, 2012 7:31 PM Dlynn1210 wrote: On Sep 06, 2012 7:18 PM JohnnyO wrote: Dave - Thanks for the advice.  I  think I'll pass on the drugs. Diana - Thanks for the attitude adjustment.  It's hard to adjust to the fact that I'll never be "normal" again, so I'm at least trying to feel as normal as possible.  I hear you, though; it is so good to be alive.Johnny - Take it from me - you are normal.  Naturally we consider "normal" what we are living when we are diagnosed but we have to readjust our thinking and wrap our minds around a new normal post treatment.  It really helps to keep in mind that we are very very very fortunate individuals.  Every once in a while, I moan over it taking me longer to eat than it used to but then I remember my grandmother's words.  Whenever she thought I was feeling sorry for myself over something she would encourage me to look around me because "I would always find someone in worse shape".  She was one very smart lady.  Patience, sweetie, patience - you will improve and one day be able to look back on this as a very distant memory.  Diana     Great words of advice and encouragement Diana. I am now 265 days post treatment and can assure everuyone that the appetite dioes come back. Maybe not to where it was but it does happen. I am sooooo thankful for being given a second chance as well ... through my treatmenst and recovery I have lost several friends to this illness and am so ever thankful that I am still here. Even more thankful that I am seeing progress daily  ... even when I have  aday that isn't quite as great as I would wish, it is better than the day I just had. Blessings to all and just keep positive ... the grass is only greener if you let be ... be thankful where you (we) are !!! God Bless Randall Randall55 Thu, 06 Sep 2012 00:00:00 GMT On Sep 06, 2012 7:18 PM JohnnyO wrote: Dave - Thanks for the advice.  I  think I'll pass on the drugs. Diana - Thanks for the attitude adjustment.  It's hard to adjust to the fact that I'll never be "normal" again, so I'm at least trying to feel as normal as possible.  I hear you, though; it is so good to be alive.Johnny - Take it from me - you are normal.  Naturally we consider "normal" what we are living when we are diagnosed but we have to readjust our thinking and wrap our minds around a new normal post treatment.  It really helps to keep in mind that we are very very very fortunate individuals.  Every once in a while, I moan over it taking me longer to eat than it used to but then I remember my grandmother's words.  Whenever she thought I was feeling sorry for myself over something she would encourage me to look around me because "I would always find someone in worse shape".  She was one very smart lady.  Patience, sweetie, patience - you will improve and one day be able to look back on this as a very distant memory.  Diana      Dlynn1210 Thu, 06 Sep 2012 00:00:00 GMT Dave - Thanks for the advice.  I  think I'll pass on the drugs. Diana - Thanks for the attitude adjustment.  It's hard to adjust to the fact that I'll never be "normal" again, so I'm at least trying to feel as normal as possible.  I hear you, though; it is so good to be alive. JohnnyO Thu, 06 Sep 2012 00:00:00 GMT On Sep 06, 2012 6:41 PM JohnnyO wrote: Hello all, Johnnyo here, and still kickin'!  Just had my first post-treatment PET scan and everything is clean.  How great to hear the doc say "no cancer." I'm feeling about 95% normal with one main issue: my appetite still sucks, and I still have to force myself to eat.  This is an improvement over no appetite plus nausea, but it would be nice to feel the sensation of hunger again.  I'm thinking of smoking reefer or asking for the prescription drug that is derived from it.  Anybody have success with this or some other appetite increaser?  I'm tired of downing (and paying for) Ensures. As always, thanks in advance! JohnJohnny I told you that you would make it.  Now I have a question for you - why in the world when you have been given another chance at life, a healthy life, why would you even consider smoking an illegal drug, or ingesting drugs, just because you have a poor appetite.  My appetite sucks as well - 5 years after treatment but you know something, it is a blessing because I don't have to worry about gaining more weight than I should.  Think about it, it is only food.  Americans take a way too much pleasure in eating - it should be about sustaining us rather than entertaining us.  I'm sure Ensures are not any more expensive than apettite increasing drugs or marijuana - and better for you.  Sweet pea, you need to start thanking God you were fortunate enough to have a cancer that was cureable and that you are now clean rather than looking at the negatives.  Patience is a virtue - give it time.  Your appetite will pick up some naturally but things will be different.  I still don't have hunger pains the same as I used to that tip off it's time to eat.  Start working on your new normal rather than looking back and expecting your old normal and ask youself - was it worth it?  I'm sure you will agree that our new normal is definitely worth putting up with to be cancer free.  Some patients on CC are not as fortunate as we were - and whenever I start to feel a little sorry for myself (eating, dry mouth, etc), I go to their section and read their posts, like the ones on the brain cancer board, and suddenly my little inconveniences are just that - small petty inconveniences. Give it time - things will improve slowly but naturally.  Diana                      Dlynn1210 Thu, 06 Sep 2012 00:00:00 GMT On Sep 06, 2012 6:41 PM JohnnyO wrote: Hello all, Johnnyo here, and still kickin'!  Just had my first post-treatment PET scan and everything is clean.  How great to hear the doc say "no cancer." I'm feeling about 95% normal with one main issue: my appetite still sucks, and I still have to force myself to eat.  This is an improvement over no appetite plus nausea, but it would be nice to feel the sensation of hunger again.  I'm thinking of smoking reefer or asking for the prescription drug that is derived from it.  Anybody have success with this or some other appetite increaser?  I'm tired of downing (and paying for) Ensures. As always, thanks in advance! JohnJohnny I told you that you would make it.  Now I have a question for you - why in the world when you have been given another chance at life, a healthy life, why would you even consider smoking an illegal drug, or ingesting drugs, just because you have a poor appetite.  My appetite sucks as well - 5 years after treatment but you know something, it is a blessing because I don't have to worry about gaining more weight than I should.  Think about it, it is only food.  Americans take a way too much pleasure in eating - it should be about sustaining us rather than entertaining us.  I'm sure Ensures are not any more expensive than apettite increasing drugs or marijuana - and better for you.  Sweet pea, you need to start thanking God you were fortunate enough to have a cancer that was cureable and that you are now clean rather than looking at the negatives.  Patience is a virtue - give it time.  Your appetite will pick up some naturally but things will be different.  I still don't have hunger pains the same as I used to that tip off it's time to eat.  Start working on your new normal rather than looking back and expecting your old normal and ask youself - was it worth it?  I'm sure you will agree that our new normal is definitely worth putting up with to be cancer free.  Some patients on CC are not as fortunate as we were - and whenever I start to feel a little sorry for myself (eating, dry mouth, etc), I go to their section and read their posts, like the ones on the brain cancer board, and suddenly my little inconveniences are just that - small petty inconveniences. Give it time - things will improve slowly but naturally.  Diana                      Dlynn1210 Thu, 06 Sep 2012 00:00:00 GMT On Sep 06, 2012 6:41 PM JohnnyO wrote: Hello all, Johnnyo here, and still kickin'!  Just had my first post-treatment PET scan and everything is clean.  How great to hear the doc say "no cancer." I'm feeling about 95% normal with one main issue: my appetite still sucks, and I still have to force myself to eat.  This is an improvement over no appetite plus nausea, but it would be nice to feel the sensation of hunger again.  I'm thinking of smoking reefer or asking for the prescription drug that is derived from it.  Anybody have success with this or some other appetite increaser?  I'm tired of downing (and paying for) Ensures. As always, thanks in advance! JohnAPPETITEI had some problem, they gave me a pill.  DID NOT WORK and gave me a problem.   I used to sleep ALL NIGHT, the appetite enhance made me go to the bathroom 2-3 times at night. NEVER GOT BETTER. I now take a medicein from my urologist that MOSTLY does the trick. Don't take it-pee at night.   Force yourself on eating, try milk shakes, it will come back. Did for me David Diamond_David Thu, 06 Sep 2012 00:00:00 GMT Hello all, Johnnyo here, and still kickin'!  Just had my first post-treatment PET scan and everything is clean.  How great to hear the doc say "no cancer." I'm feeling about 95% normal with one main issue: my appetite still sucks, and I still have to force myself to eat.  This is an improvement over no appetite plus nausea, but it would be nice to feel the sensation of hunger again.  I'm thinking of smoking reefer or asking for the prescription drug that is derived from it.  Anybody have success with this or some other appetite increaser?  I'm tired of downing (and paying for) Ensures. As always, thanks in advance! John JohnnyO Thu, 06 Sep 2012 00:00:00 GMT You will Johnny - it just takes a little time.  Diana Dlynn1210 Sat, 23 Jun 2012 00:00:00 GMT Hey Susan - Thanks for this message; if it's only the bills that worry you, you're in a great place!  "One step at a time" is the mental approach that I and my wife are striving for; the upcoming scans definitely make that a little harder.  I sure hope that we can get to the same mental state as you as we move forward. Johnny JohnnyO Sat, 23 Jun 2012 00:00:00 GMT On Jun 20, 2012 3:18 PM JohnnyO wrote: Hi Susan - Actually, I'm not that young; I'm 50. My issue with a support group is not that I expect that the people there would be older than me, per se; but that they would be in a different place in their lives than me:  retired, single, no young children.  Aside from that, my anxiety is best handled by going on with my life, being there as usual for my wife and kids.  A support group or therapy would just call attention to that which, frankly, I'm trying to forget. The lingering side effects of treatment just call attention to my cancer, and the best way for me to handle those is to find out how best to treat them and make them part of my regular routing.  So, right now, my issue is this new side effect: lymphedema.  I just need to know what to do about it, how to avoid it; I don't need to talk about it.  Everything else, so far, is pretty much under control, and I shield my kids from all signs of my anxiety. Yes, I fear the PET scans - they don't keep me up at night or anything like that - but doesn't everyone? Hi Johnny - I honestly believe that as you get farther down the road, your opinion about support groups will change.  You are still like a deer who is just regaining your sight after being caught in headlights.  Sweetie - two questions.  Have we (CC residents) helped you?  I think it is safe to say we have (that was our intention).  Do you think it has been easy on us to relive our experiences?  No, in fact, it has been difficult at times because none of us really love looking back at those dark days.  I do it because of Mark - the survivor on CC who was there for me every step of the way.  There were many others but Mark was my strength.  He had undergone treatment two years before and told me what to expect - and cheered me on telling I could do it.  He was able to forego chemo so bounced back quicker but he was preparing for a bike marathon two years post treatment.  This did wonders for my morale.  I come here for every other person who is diagnosed with this horrible disease - letting them know brighter days are ahead.  You will learn to live with a new normal - your food intake will change a little, I've had three throat dilations to help with eating, I eat and drink a little slower now (which is a good thing), and I have a little lisp when I speak but all and all - I look at these side effects as war wounds - wounds I wear proudly because they are what I have to show for going through a battle - one that I won! As for fearing scans - I wouldn't use the word fear (moreso one year and two years post treatment) but I do feel a little anxious when it gets close to the time for my yearly checkups.  I honestly experienced new symptoms the first couple of years post treatment which disappeared after I got my clean scan results.  Go figure - mind over matter!    You may want to reconsider shielding your kids from all anxiety .  We learn how to walk and how to talk by watching our parents.  They will also learn how to deal with the bad things in life by watching how we deal with them.  Do we face them head on or do we hide from them.  I learned by watching my grandmother - she faced all trials head on with such a dignity and grace.  I felt her presence throughout my treatment even though she passed many years before.  I just read a comment on the brain cancer section that says so much about the cancer patient.  Follow the below link and read Josh's response - how he is dealing with his cancer and how he is handling things with his 8 son & 11 yr old daughter.  Now there is a man I hugely admire - and one who is setting a tremendous example for his children.    They are too young to fully understand so he and his wife have kept the final outcome from them but they are learning how to deal with the bad times when they come.  Johnny, I mention this only because it is how we treat adversities - and how our children see us handle them, that they will remember when they experience trials in the future.  As parents, we want to shield them from anything bad but when we can't, we can teach them how to deal with the bad times when thrown at us.  I have often expressed how much I admire the people on the brain cancer blogs on CC - they are facing such a horrific disease but do it with such strength.  Josh is one of many that I have often quoted.  Their type of responses keep me going if I ever begin to feel sorry for myself.  It is a reminder that I only have things to be eternally grateful for.  Diana      http://www.cancercompass.com/message-board/message/all,66694           Dlynn1210 Sat, 23 Jun 2012 00:00:00 GMT On Jun 20, 2012 3:18 PM JohnnyO wrote: Hi Susan - Actually, I'm not that young; I'm 50. My issue with a support group is not that I expect that the people there would be older than me, per se; but that they would be in a different place in their lives than me:  retired, single, no young children.  Aside from that, my anxiety is best handled by going on with my life, being there as usual for my wife and kids.  A support group or therapy would just call attention to that which, frankly, I'm trying to forget. The lingering side effects of treatment just call attention to my cancer, and the best way for me to handle those is to find out how best to treat them and make them part of my regular routing.  So, right now, my issue is this new side effect: lymphedema.  I just need to know what to do about it, how to avoid it; I don't need to talk about it.  Everything else, so far, is pretty much under control, and I shield my kids from all signs of my anxiety. Yes, I fear the PET scans - they don't keep me up at night or anything like that - but doesn't everyone? Johnny, The only thing I fear about PET or CT scans is the copay and the "patient's obligation" on the insurance statement.  Well, that and reconciling the statements with the bills.  I am still having throat dilations, too, so I get bills from the docs--ENT, RO, GI, PCP, anesthesiologist--as well as the labs and pathology and imaging.  They are so hard to decipher!  When I was in treatment and later, trying to recover from the treatment, my husband handled all the medical paperwork, but now that I'm so much better I can.  And I do not like what all the costs are doing to our finances!  (But ever so grateful for the group insurance that makes the costs so much less!) But I have no anxiety about the scans.  I have chosen to take things one step at a time during this whole ordeal, and to plan but not fret about what is coming up.  I view the scans as just the next step on this long journey, which will reach its first destination (at two years post treatment) next February, and its final one three years after.  In a way I look forward to them as each one marks another success and tells what the next step will be.  And so far, so good, so if anything my optimism is growing. Sdurnell Sat, 23 Jun 2012 00:00:00 GMT Hey David, Yes, I can see how a support group would be great for getting quick answers and answers to follow-up questions during treatment.  And once I feel recovered enough, I would be interested in attending a support group to help others going through treatment.  But at this point, I'm hoping that this long thread will be helpful to those recently diagnosed; there's a lot of good stuff here! (aside from my whining) JohnnyO Thu, 21 Jun 2012 00:00:00 GMT On Jun 20, 2012 6:23 PM nwwoman wrote: Thought I'd chime in here on support groups.  I have been following your posts Johnny0 but as my hubby died not long after this tumor/neck diagnosis, I've thought it best to avoid comment -- until now.  I have had three experiences with support groups as a result of this head/neck cancer.  Two for myself (grief groups) and one that was more of a sneak attack, I guess you'd call it, for my departed husband.  I resisted and resisted going to the grief groups, thinking thoughts similar to yours.  After all, most widows are far more aged than I, are retired, don't have a 21-year-old (or close to it) son/child (yes, he's a child to me!) and I figured I'd get through the grieving process with a stiff upper lip, some posts to this site and a carefully measured drink or two at night.  I got nudged and nudged and more nudged to attend, so I agreed to one session.  I was silent that evening.  I did not participate.   I figured these were weak people and, hey, I am not part of that group of humanity.  Long story short -- I stuck it out and discovered that despite the differences, the benefit was far more than I imagined or expected.  There is something cathartic about being with those who "get it" ....who have experienced a loss of mate or child, which is so different from losing parents, that bonding began in a way I never planned.  Now, I have friends who because they have not walked this path believe that all is well with me, the grieving period is done, and it's time to move on.  There's no more talk/questions about my husband.  His name is not mentioned.  My support group ended but we decided to keep our group alive by phone and by biweekly meets at our homes.  This is now my private group of people who I don't have to explain anything to, apologize to, keep a stiff upper lip with or keep silent about anything I'm feeling or dealing with.  We work problems out together, which is so cool.  I think the benefits apply in all situations, not just in a grieving one.  I also know that Bob was someone who would have run fast away from the mere mention of a support group at any stage of his cancer treatment.  He's (was) not a church-going person and didn't show any feminine side either...lol.   Loved that guy.  :-))  And, like you, he didn't want to be talking "cancer, cancer, all day long."  Those were his words, many times. But I had a sneaky suspicion that he'd benefit from talking to someone -- deeply -- other than me.  I had a hospice chaplain come visit who did not tell him he was a chaplain.  We kept it secret for some time.  I was delighted to see those two slowly connect more and more.  I then introduced a social worker, again without fanfare or identification -- just friends I'd met, I'd tell him.  Soon, we had a support group! And I am here to tell you that the support group was an amazing gift to him.  These folks had answers that I could not provide...that doctors did not discuss.  These folks had experience I did not have.  The sharing of life with people who had already walked the path, in this case with others, gave him answers and peacefulness and a place to pour out frustrations with folks who responded differently than a loving best friend/wife. It was worth it to both of us in both instances.  That's all I know.  My original post for the cancer support group was not at ALL to have like people who LOVED talking about cancer. I went and continued to go until they disbanded because UNLIKE THIS SCREEN, if I said "i have this problem" immediately 7 people told me what they did to elveiate it and I could ask another question IMMEDIATELY.   I'm telling you the doctors won't tell you evreything because if they did (one nurse told me this>>>) "if you knew what was coming you might not show up for all treatments." I have never met anyone who had their tonsil cancer return but I have spoken to a few spouses where they died. I only knew one guy and the doctors did terrible things to him. Like removed HALF of his lower JAw. He had heart problems, was hospitalized for 6 weeks before he died. But everyone esle survives, gets beat up and moves on. In talking about "it coming back" one nurse at the radiology clinic told me that 1/2 of thsoe that cancer coems back (this clicnic did all kinds of cancer teatment, not just tonsils) do not finsih the second round of treatments. I'm not sure I would either. But again the reason to go to a support group WHILE getting treatment is to get real life answers form those who are on the other side. The group had 3 people like me-in the middle of treatment and 12 people who were 3-10 years out. One lady had cancer of teh mouth, back of the tongue. They removed her tongue! Now they would just radiate. David Diamond_David Wed, 20 Jun 2012 00:00:00 GMT Thought I'd chime in here on support groups.  I have been following your posts Johnny0 but as my hubby died not long after this tumor/neck diagnosis, I've thought it best to avoid comment -- until now.  I have had three experiences with support groups as a result of this head/neck cancer.  Two for myself (grief groups) and one that was more of a sneak attack, I guess you'd call it, for my departed husband.  I resisted and resisted going to the grief groups, thinking thoughts similar to yours.  After all, most widows are far more aged than I, are retired, don't have a 21-year-old (or close to it) son/child (yes, he's a child to me!) and I figured I'd get through the grieving process with a stiff upper lip, some posts to this site and a carefully measured drink or two at night.  I got nudged and nudged and more nudged to attend, so I agreed to one session.  I was silent that evening.  I did not participate.   I figured these were weak people and, hey, I am not part of that group of humanity.  Long story short -- I stuck it out and discovered that despite the differences, the benefit was far more than I imagined or expected.  There is something cathartic about being with those who "get it" ....who have experienced a loss of mate or child, which is so different from losing parents, that bonding began in a way I never planned.  Now, I have friends who because they have not walked this path believe that all is well with me, the grieving period is done, and it's time to move on.  There's no more talk/questions about my husband.  His name is not mentioned.  My support group ended but we decided to keep our group alive by phone and by biweekly meets at our homes.  This is now my private group of people who I don't have to explain anything to, apologize to, keep a stiff upper lip with or keep silent about anything I'm feeling or dealing with.  We work problems out together, which is so cool.  I think the benefits apply in all situations, not just in a grieving one.  I also know that Bob was someone who would have run fast away from the mere mention of a support group at any stage of his cancer treatment.  He's (was) not a church-going person and didn't show any feminine side either...lol.   Loved that guy.  :-))  And, like you, he didn't want to be talking "cancer, cancer, all day long."  Those were his words, many times. But I had a sneaky suspicion that he'd benefit from talking to someone -- deeply -- other than me.  I had a hospice chaplain come visit who did not tell him he was a chaplain.  We kept it secret for some time.  I was delighted to see those two slowly connect more and more.  I then introduced a social worker, again without fanfare or identification -- just friends I'd met, I'd tell him.  Soon, we had a support group! And I am here to tell you that the support group was an amazing gift to him.  These folks had answers that I could not provide...that doctors did not discuss.  These folks had experience I did not have.  The sharing of life with people who had already walked the path, in this case with others, gave him answers and peacefulness and a place to pour out frustrations with folks who responded differently than a loving best friend/wife. It was worth it to both of us in both instances.  That's all I know.  nwwoman Wed, 20 Jun 2012 00:00:00 GMT Hi Susan - Actually, I'm not that young; I'm 50. My issue with a support group is not that I expect that the people there would be older than me, per se; but that they would be in a different place in their lives than me:  retired, single, no young children.  Aside from that, my anxiety is best handled by going on with my life, being there as usual for my wife and kids.  A support group or therapy would just call attention to that which, frankly, I'm trying to forget. The lingering side effects of treatment just call attention to my cancer, and the best way for me to handle those is to find out how best to treat them and make them part of my regular routing.  So, right now, my issue is this new side effect: lymphedema.  I just need to know what to do about it, how to avoid it; I don't need to talk about it.  Everything else, so far, is pretty much under control, and I shield my kids from all signs of my anxiety. Yes, I fear the PET scans - they don't keep me up at night or anything like that - but doesn't everyone? JohnnyO Wed, 20 Jun 2012 00:00:00 GMT On Jun 18, 2012 6:12 PM JohnnyO wrote: Hey mamab - I think you misunderstood the sentiment of my previous post; it's not that I have anything against older folks, it's that I feel like I've been cheated out of a good part of my youth.  If I were 70 and my kids were all grown and out of the house, I'd feel a lot less anxious and upset about my situation.  Sitting and talking with a bunch of folks older than me would just remind me of how most people don't have to deal with this until they are older.  Me feeling sorry for myself again, but that's how I feel.Johnny, I have to appologize, as all this time I thought you were middle aged, around 40 or so.  Didn't know that you were so young.  There is a beautiful weekly post on the NYT Well blog by a young lady who has, I believe, lymphoma and who is very young--20's.  She is a great writer, even during her treatments.  You might identify with her, as she is perhaps nearer your age than some of us old fogies here. Now about feeling sorry for yourself.  The salient point to remember when thinking about your cancer is that you have available to you treatment that will allow you to save your youth, not to mention middle and old age.  This uncomfortable period--at a year or two, it's short as compared to a life span--can enable you to be there for your kids and see them grow up.  Treatment is horrible;  it truly sucks.  I get this, as mine did too.  But I feel like I've been given a reprieve here and will be able to have productive, enjoyable years ahead, even as an oldster (I'm 61).  We live in an amazing time and place, and we have the benefit of so many who've gone before.  No one is forcing you to encounter old people with cancer if you don't want to.  If you don't want to go to a cancer support group, maybe private counseling would be a better fit.  But the fear and anxiety I hear in your post can't be good for you or your family.  I know you have kids, and I worry about what the effect might be on them. Best of luck to you as you make your way down this path. Susan Sdurnell Wed, 20 Jun 2012 00:00:00 GMT Thanks DIANNA reading what everyone has posted sure makes me fill better. i was up till 6am this morning reading all the post on here.it is good to have a site so people can go to and see that they are not alone. teresa04 Tue, 19 Jun 2012 00:00:00 GMT On Jun 19, 2012 11:22 AM Diamond_David wrote: On Jun 19, 2012 4:28 AM teresa04 wrote: just reading this has made me fill so much better i also have cancer .and i fill it will kill me also  but maybe not .my cancer head and neck had 8 chemos and 35 radation treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they "" target="_blank" rel="nofollow">http://treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they "" target="_blank" rel="nofollow">http://treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they "" target="_blank" rel="nofollow">http://treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they "" target="_blank" rel="nofollow">http://treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they "" target="_blank" rel="nofollow">http://treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they "" target="_blank" rel="nofollow">http://treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they "" target="_blank" rel="nofollow">http://treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they "" target="_blank" rel="nofollow">http://treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they "" target="_blank" rel="nofollow">http://treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they "" target="_blank" rel="nofollow">http://treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they "" target="_blank" rel="nofollow">http://treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they "" target="_blank" rel="nofollow">http://treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they "" target="_blank" rel="nofollow">http://treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they " target="_blank" rel="nofollow">treaments.they call today to schueld my pet scan and that scars me also because if there is any caner i will  no longer be able to eat and i will have a track mine is also hpv Tonsil cancer is so curable I'd rather talk about surviving the treatment rather than the disease. I think as an almost 5 year survivor of TREATMENT I can say: 1. The treatment for sure is much worse than the disaease. 2. Our treatment is almost the worst you can go thru to cure cancer (my doctor says that). 3. Just hold on, the beatings will end soon. 4. 2 weeks after your last treatment you will feel worse than during. 5. A feeding tube will be your friend. 6. Drinking is imperative to keeping your throat open. 7. Milkshakes are cooling, soothing and will help to keep your weight on. 8. 4 weeks after treatment you will start to feel much better. 9. 4 months after treatment you will be pretty darn normal. 10. 1 year later you will be normal. 11. You'll have 6 month cat scans to check  up on your cancer, make sure nothing pops up. 12. You will carry a water bottle with you everywhere as your saliva glands will be 50% off and you'll now have to eat medium rare meats. Most terrible sypmtoms during treatment will be "grin and bear it" But you'll get thru it DavidDavid I am sure you will agree that almost five years post treatment (diagnosed July 2007, treatment ended Oct, 2007) we have to actively think about it in order to relay information to those traveling down the road we have already traveled.  Like you, I concentrate on the fact I survvived  - making each day count for something.  To do otherwise would mean cancer monopolizing more of my life than necessary.  We all share life experiences with our fellow man (or woman) and survivor's sharing and supporting cancer patients are all part of what we are all about.    Diana Dlynn1210 Tue, 19 Jun 2012 00:00:00 GMT On Jun 19, 2012 4:28 AM teresa04 wrote: just reading this has made me fill so much better i also have cancer .and i fill it will kill me also  but maybe not .my cancer head and neck had 8 chemos and 35 radation treaments.they "" target="_blank" rel="nofollow">http://treaments.they " target="_blank" rel="nofollow">treaments.they call today to schueld my pet scan and that scars me also because if there is any caner i will  no longer be able to eat and i will have a track mine is also hpvTeresa - Trust me, the eight weeks after treatment ended was worse than the previous 8 weeks BUT once you get to the top and head downward, you are beginning to return to normal (slow but sure journey).  As someone said, the treatment for head and neck cancer is brutal but ten years ago, it was a death sentence - today it is totally cureable.  I go to other blogs where people with other types of cancer are living with a cancer that is terminal - or have little percentage chances for a cure.  They amaze me as to how they handle everything with such dignity and grace.  When I feel like complaining (and all I have to complain about these days is not being able to eat everything I want - almost but not quite), I look to them and instead of complaining I thank God once more that I had a type of cancer that is 100% cureable.  I thank Him for being with me throughout treatment as He promised.  God didn't promise we would never face tribulations, He promised to be with us throughout any trial.  I can still remember the day I got my all clean scan results - and remember my oncology nurse saying "Now you know why we kicked your butt all those months".  AND it was worth everything I went through to hear those beautiful words "ALL CLEAR"! Diana Dlynn1210 Tue, 19 Jun 2012 00:00:00 GMT On Jun 19, 2012 4:28 AM teresa04 wrote: just reading this has made me fill so much better i also have cancer .and i fill it will kill me also  but maybe not .my cancer head and neck had 8 chemos and 35 radation treaments.they "" target="_blank" rel="nofollow">http://treaments.they " target="_blank" rel="nofollow">treaments.they call today to schueld my pet scan and that scars me also because if there is any caner i will  no longer be able to eat and i will have a track mine is also hpv Tonsil cancer is so curable I'd rather talk about surviving the treatment rather than the disease. I think as an almost 5 year survivor of TREATMENT I can say: 1. The treatment for sure is much worse than the disaease. 2. Our treatment is almost the worst you can go thru to cure cancer (my doctor says that). 3. Just hold on, the beatings will end soon. 4. 2 weeks after your last treatment you will feel worse than during. 5. A feeding tube will be your friend. 6. Drinking is imperative to keeping your throat open. 7. Milkshakes are cooling, soothing and will help to keep your weight on. 8. 4 weeks after treatment you will start to feel much better. 9. 4 months after treatment you will be pretty darn normal. 10. 1 year later you will be normal. 11. You'll have 6 month cat scans to check  up on your cancer, make sure nothing pops up. 12. You will carry a water bottle with you everywhere as your saliva glands will be 50% off and you'll now have to eat medium rare meats. Most terrible sypmtoms during treatment will be "grin and bear it" But you'll get thru it David Diamond_David Tue, 19 Jun 2012 00:00:00 GMT just reading this has made me fill so much better i also have cancer .and i fill it will kill me also  but maybe not .my cancer head and neck had 8 chemos and 35 radation treaments.they call today to schueld my pet scan and that scars me also because if there is any caner i will  no longer be able to eat and i will have a track mine is also hpv teresa04 Tue, 19 Jun 2012 00:00:00 GMT Hello Johnny O, Below is a post that I have posted in the past on this subject of Lymphedema. Like you, I suddenly had tightness in my face and neck. This post is worth repeating again, it is a bit long, but I hope helpful...... A simple neck stretch exercise the Cancer Therapist taught me was to sit or stand and not move my shoulders. Keeping my mouth closed, look up at the ceiling as far as possible and hold for a count of 10. Return to facing forward and then look to the left and again count to 10, then the right. Next, look straight ahead and tilt your head to the left as if trying to get your left ear to touch your left shoulder, again count to 10, then the right side. That is the exercise she taught me and it has helped over the yrs. Try to do these 3 times during your day if you can. Next, the massage for the Lymph system. It is a gentle massage starting at the front of your chin. Using 2-3 fingers make small circular movements for 6-8 circles and then slowly move up in sections along your jaw on one side, working up toward the front of your ear. Continue to massage and work over the top of your ear and then slowly behind your ear and down toward the jugular vein and to your collar bone. Do both sides this way, either one side at a time or using both hands, do both sides at the same time. Then starting under your chin and by the Adam's apple, make circles again and work under your jaw bone and towards the ear area. Next part is, place your right hand in the center of your chest so your hand can work from the center of your chest to your left shoulder just below the collar bone and push gently to the left shoulder 6-8 times and repeat on the right side with your left hand. After that, raise your left arm straight up towards the ceiling, place your right arm across the front of your body, reaching to touch your shoulder blade, slowly run your hand down along your side to your waist 6-8 times, repeat on the other side. Next, we have a lymph system reservoir located in the general area of our belly button and to the left, but a few inches down near the left hip bone. Near this area, press a little more firmly and make 6-8 circular motions. Work across the lower stomach area making a smiley face (or a U shape) across to your right hip area and then back again. This stimulates the reservoir and helps move the lymph node system. We also have the benefit of gravity working on our side, after this stretching and massage, by walking for a short period, gravity takes over and the fluids start to move down towards the reservoir. Cutting down on salt helps and drinking roughly 64 ozs of fluid a day helps flush our bodies. If you do this properly, you will start to make more trips to the bathroom to urinate. It took just a few visits for me to catch on and it started working for me in several weeks. I was swelling up in my face and neck, causing tightness and difficulty turning my neck and eating . Again, you will do this massage 2-3 times a day if needed. Sometimes, I only do it once a day and other days I don't need to. You will know when to do it. Also, if we do any type of heavy lifting, picking something up that weighs more then 25 pounds, our blood and lymph node fluid move to the area doing the work (shoulders and neck) which in turn causes us to swell. Sleeping flat will cause us to swell also. Once the Lymph node system repairs itself. We will have to do less of this massage and stretching exercises. If the swelling flares up, we can do something about it. If it continues, I would ask to be taught by a Cancer Physical Therapist, they can show you the proper technique. Hopefully, this will be helpful. My apologies for such a long post. My Best to You and Everyone Here PopPop Tue, 19 Jun 2012 00:00:00 GMT On Jun 18, 2012 6:20 PM JohnnyO wrote: Hey Rand55 - Glad to hear your swelling went down.  Here's hoping that mine does; I did some gentle massage techinques that I found on the internet and it has susbided significantly already.  I guess that looking like Dizzy Gillespie wouldn't be that bad, though!At least I 'm looking like something! LOL ... but all kidding aside I must confess that there were times even after my treatments that I felt like I was still losing it. Like I was still going to die ... the emotional and mental healing has been is is still as tough as the medical treatments for me. BUt I can tell you one thing for certain. There are better days ahead. I am strarting to take 3 to 4 and sometimes even a whole week of going forward before I have a couple of setbacks. Even then the setbacks don't seem to last as long as before. I am starting to excercise now, getting some muscle back. Peole that see me now and knew me from before tell me I am looking fantastic. I know its not a sympathetic statement, they really mean it.  I've also taken a long look at the illness of cancer in whole and have realized that as much as it has taken some of my life a way, there is only as much of my life taken as I allow to be taken. It is as much a mental battle as a physical one. Keep up the fight JohnnyO, I'm here to tell ya IT DOES GET BETTER!!!  Randall55 Mon, 18 Jun 2012 00:00:00 GMT JohnnyO - I think you should quit while you're ahead on the age thing... :) I do understand your comments. I avoided talking about cancer while I was under treatment, and the only time I discuss it is with my fellow patients either her or in my support group. I subscribe to Christopher Hitchen's description of the existence of two worlds - Tumor Town and Wellville. Both speak their own languages and have great difficulty communicating with each other. I also avoided support groups completely for the first two years after treatment. I just wanted done with cancer and side effects. But then, I just felt there were some things I wanted to "talk out" - some things that an online forum discussion, as helpful as it is, fell short on. That was human contact with active patients and their caregivers. I'm now a volunteer providing whatever insight and experience I can provide to other head and neck cancer patients. I have no hesitation talking about it with them - they're absolutely hungry for information. But not all are - and I understand that. No one wants advice on them like so much oversweetened dough. Don't feel sorry for yourself - and don't feel shortchanged. We live in a time when treatment options are available - as little as ten years ago, these options weren't available. We're lucky in that we've been given these options and second chances. Maybe we'll do a little better this time around, yes? :) But then again, I'm old...doesn't really bother me that much...heh... :) - Jeff ErthWlkr Mon, 18 Jun 2012 00:00:00 GMT Hey Rand55 - Glad to hear your swelling went down.  Here's hoping that mine does; I did some gentle massage techinques that I found on the internet and it has susbided significantly already.  I guess that looking like Dizzy Gillespie wouldn't be that bad, though! JohnnyO Mon, 18 Jun 2012 00:00:00 GMT Hey mamab - I think you misunderstood the sentiment of my previous post; it's not that I have anything against older folks, it's that I feel like I've been cheated out of a good part of my youth.  If I were 70 and my kids were all grown and out of the house, I'd feel a lot less anxious and upset about my situation.  Sitting and talking with a bunch of folks older than me would just remind me of how most people don't have to deal with this until they are older.  Me feeling sorry for myself again, but that's how I feel. JohnnyO Mon, 18 Jun 2012 00:00:00 GMT On Jun 18, 2012 1:39 PM JohnnyO wrote: Hi everyone - As promised by my rad/onc, I have developed a double-chin from lymphedema.  It literally seemed to happen over night, and I and my wife separately noticed its sudden onset.  At my check-up last week I was told to make an appointment with someone who will teach me how to drain the fluid to reduce the swelling. Has anyone else experienced this, and what treatment are you doing for it?  Has it worked? Also, the sudden appearance of this for me happened the night after I went out to dinner.  Is it possible that something I ate spurred this or exacerbated it? I'm trying to keep my chin up, literallly and figuratively, as I deal with the setbacks and changes that this illness brings me.   It gets harder as I talk to friends and hear about all the great things they're doing for the summer, and I'm making plans to drain the fluid in my neck.  {:( Hope everyone here is doing well, and thanks for your input and support! Me again - The entire left side of my face swelled up while undergoing treatment (cancer in left tonsil - area radiated).  I had a visiting nurse coming by checking on me because I was giving myself liquid infusions and she had to check my pick line and change it out once a week.  When she saw the swelling, it scared her to death.  She wanted to call an ambulance to take me to the hospital immediately.  My husband was on a business trip but due back in a few hours but she didn't want to wait - she told me it could interfere with my breathing.  I went on Cancer Compass and asked if anyone else had this problem - and quickly received two replies back telling me not to worry because it was common.  Also, that it would subside after a time.  I chose to wait on my husband and then he took me to the emergency room - and then onto CTCA.  It was perfectly normal and went away after a time all by itself.  There was never any mention of draining it. As for feeling normal, I believe you may find yourself responding differently post treatment.  You are so focused on getting through this now that the before and after cease to exist (or so it was with me).  Once I was through it and had received my all clean results, I truly began to realize just how lucky I was.  I had a type of caner that was cureable!!!!  Too many others are not as fortunate as we were. Hang tough - you will get through it.  If I can, anyone can.   Diana        Dlynn1210 Mon, 18 Jun 2012 00:00:00 GMT On Jun 18, 2012 2:37 PM MamaB wrote: On Jun 18, 2012 2:03 PM JohnnyO wrote: Hi David - Thanks for your reply.  I'm surprised you never heard about this, and I'm guessing that it's because it is something more common in those of us who had lymph nodes surgically removed, as opposed to (the majority here?) having just chemo/rad. I and my wife have been avoiding others who have cancer; it help us to feel normal when we just go on as we had before.  We're a little on the younger side, too, and I suspect the support groups are older folks.  My only contact with other patients has been here, which, incidentally, has been immensely helpful. Hi Johnny O, I just happened to see your post and thought it was interesting. I am from the RCC forum; there is 'no cure' for RCC.  I have been able to be off chemo for over two years and I give God all the praise.  I am 75 years young, and I try to give out as much inspiration as I can to 'old people' or 'young people!' Johnny, I wish you the best and hope 'you will continue to feel normal when you just go on as you did before.'  If you do see someone with cancer, I hope you can at least smile as you pass by. May God bless you. BB I totally agree with you!  I do not avoid cancer patients - I embrace friends or family who have been diagnosed because by the grace of God, I fought the battle and won.  I remember all too well how I felt when others avoided me.  They didn't make it apparent on purpose but it was noticeable to me.  I arrived at the airport in Chicago to have a limo driver waiting to take us to CTCA.  She was holding up a sign that said CTCA - a gentleman walked up laughing and said "What does that stand for "Come to Chicago Again".  We told him no, it stood for Cancer Treatment Center of America.  I will never forget the look on his face as he backed away from us.  I assured him it wasn't catching.  Love you B - and cancer patients like you are my inspiration.  Johnny - cancer patients/survivors know more than most that cancer does not care how old you are.  I was 60 when I was diagnosed but there are babies and children who are diagnosed with it.  I not only have come to terms with the fact I had cancer, but I thank God every day for having a type of cancer that was cureable.  I appreciate life so much more now - I took it for granted before.      Diana   Dlynn1210 Mon, 18 Jun 2012 00:00:00 GMT On Jun 18, 2012 1:39 PM JohnnyO wrote: Hi everyone - As promised by my rad/onc, I have developed a double-chin from lymphedema.  It literally seemed to happen over night, and I and my wife separately noticed its sudden onset.  At my check-up last week I was told to make an appointment with someone who will teach me how to drain the fluid to reduce the swelling. Has anyone else experienced this, and what treatment are you doing for it?  Has it worked? Also, the sudden appearance of this for me happened the night after I went out to dinner.  Is it possible that something I ate spurred this or exacerbated it? I'm trying to keep my chin up, literallly and figuratively, as I deal with the setbacks and changes that this illness brings me.   It gets harder as I talk to friends and hear about all the great things they're doing for the summer, and I'm making plans to drain the fluid in my neck.  {:( Hope everyone here is doing well, and thanks for your input and support! Hi JohnnyO ... I too had this "overnite" swelling in my neck which gave me my new double chin. I panicked immediaytely as did my wife. When I went in to see my Oncologist he told me that it was nothing but fluid and would eventually disappear. HE was right ... it took a feew weeks (3 I think) but strangely enough it comes back the odd time, not quite as bad as the original appearence. I looked this morning and it is still not there. What I have been told by my Oncologist is that eventually, after a year or so it will be all but be gone forever. Never at any time did he say that we must drain it or suggest that I could drain it myself! He told me it was quite common ... even though I did look like Dizzie Gillespe blowing a Trumpet ...!!! So far it has been reacting exactly as he has told me. Randall55 Mon, 18 Jun 2012 00:00:00 GMT On Jun 18, 2012 2:03 PM JohnnyO wrote: Hi David - Thanks for your reply.  I'm surprised you never heard about this, and I'm guessing that it's because it is something more common in those of us who had lymph nodes surgically removed, as opposed to (the majority here?) having just chemo/rad. I and my wife have been avoiding others who have cancer; it help us to feel normal when we just go on as we had before.  We're a little on the younger side, too, and I suspect the support groups are older folks.  My only contact with other patients has been here, which, incidentally, has been immensely helpful. Hi Johnny O, I just happened to see your post and thought it was interesting. I am from the RCC forum; there is 'no cure' for RCC.  I have been able to be off chemo for over two years and I give God all the praise.  I am 75 years young, and I try to give out as much inspiration as I can to 'old people' or 'young people!' Johnny, I wish you the best and hope 'you will continue to feel normal when you just go on as you did before.'  If you do see someone with cancer, I hope you can at least smile as you pass by. May God bless you. B MamaB Mon, 18 Jun 2012 00:00:00 GMT Hi David - Thanks for your reply.  I'm surprised you never heard about this, and I'm guessing that it's because it is something more common in those of us who had lymph nodes surgically removed, as opposed to (the majority here?) having just chemo/rad. I and my wife have been avoiding others who have cancer; it help us to feel normal when we just go on as we had before.  We're a little on the younger side, too, and I suspect the support groups are older folks.  My only contact with other patients has been here, which, incidentally, has been immensely helpful. JohnnyO Mon, 18 Jun 2012 00:00:00 GMT Hi Johhny O   I have never heard about this at all. BTW, my hospital had a Head & Neck cancer support group. I suggest you see fiyour hospital or anotehr near by has one and go to soem meetings. I did and I've got to tell you I learned MORE from 15 people around a table than I did from my doctors.David Diamond_David Mon, 18 Jun 2012 00:00:00 GMT Hi everyone - As promised by my rad/onc, I have developed a double-chin from lymphedema.  It literally seemed to happen over night, and I and my wife separately noticed its sudden onset.  At my check-up last week I was told to make an appointment with someone who will teach me how to drain the fluid to reduce the swelling. Has anyone else experienced this, and what treatment are you doing for it?  Has it worked? Also, the sudden appearance of this for me happened the night after I went out to dinner.  Is it possible that something I ate spurred this or exacerbated it? I'm trying to keep my chin up, literallly and figuratively, as I deal with the setbacks and changes that this illness brings me.   It gets harder as I talk to friends and hear about all the great things they're doing for the summer, and I'm making plans to drain the fluid in my neck.  {:( Hope everyone here is doing well, and thanks for your input and support! JohnnyO Mon, 18 Jun 2012 00:00:00 GMT Sorry, Johnny, last sentence in the second paragraph should read: But it should NOT be dominating your life anymore now that treatment is over and you are beginning to feel better. Sdurnell Thu, 31 May 2012 00:00:00 GMT Johnny, I am delighted to hear that you are out of treatment and recovering so well!  In my eyes you are a star! Now, as for your state of mind:  get help.  It sounds like your wife might need to consider doing the same.  Cancer is such a loaded diagnosis you can feel like you are never really over it.  But it should be dominating you life anymore now that treatment is over and you are beginning to feel better. I had a lot of mental health issues during and especially right after treatment, and I am not the only one.  It often comes with the territory.  See your doctor about antidepressants, and/or get some counseling.  You simply can't live your life in fear of each next scan.  There is no evidence at all that worry promotes cancer recurrence, but it can mess with other aspects of your health.  So don't jeopardize your physical self by denying your mental/emotional needs. You owe it to yourself, but I know a lot of the time that's not enough.  So let me tell you that you also owe it to the four girls in your life who've been your support all this time.  It's not healthy for any of you for you to put your life on hold.  Living in fear is not a good life for any of you.  I am not a religious person at all.  But I do have hopes for the future, especially concerning my handicapped adult daughter.  And I had strong faith in my medical and social support systems.  I believed what they told me (after research and lots and lots of questions), and I did what they told me to get well, physically and emotionally.  Please let your "team" help you get what you need to go on with your life without excess fear and worry. I say get on with the 6-month projects as soon as you're feeling up to it. And all the best to you and your family! Susan Sdurnell Thu, 31 May 2012 00:00:00 GMT On May 27, 2012 7:28 PM Diamond_David wrote: Johnny   Good going, glad to hear you're past the exit sign of cancer City. Do me a fvaor, give up on the depression and waiting on pins and needles. Tonsil/throat canser has a 90% cure rate. You have a better chance of now of dying now by lightening or a frat party with girls and booze! 90% cure rate, match that with high chlorestereal, etc. Come Sept you'll feel 90% tip top. DavidGreat Going JOHNNY!!!! You've now broken the treatment finish line!!! You have a great opportunity now ... a second chance as you might say! A clearer perspective on things of importance vesus things you thought were important. As far as the wiating game is concerned, that is all it is ... a game! A game that you can choose to play or not! You have a 90% chance in success and that is what you now should focus on .... that 90% is a 90% chance to see everything in your life in a different light! A much more positive light I suspect. I am now, as of today's date 173 days post treatment. The first intervals of Scans and meetings all coordinated and done and future ones all cordinated as well. These things are now part of my life and will be for sometime  ... but it is only as big a part of my life as I let it be. My perspective on day to day life is now changed dramatically. I will not let anything take away moments of life that I cherish. Time with God, time with my Wife and family. This challenge and journey has now given me the opportunity to live life differently, no matter what time is left, it is MY time and I choose to LIVE it!!! You can too ... Keep the faith, keep focused, eat right, endure what events may come your way through this healing process as I can tell you from all of my heart, it only gets better.  Well done, God Bless!!!! Randall Randall55 Sun, 27 May 2012 00:00:00 GMT Johnny, The immediate post-treatment "depression" (as you characterized it) is entirely normal. A big part of what you're feeling now is related to the fact there isn't much you can control at this point. Treatment decisions were made and the treatments executed. Very nearly everyone feels this as there's nothing more to be done but wait and watch, wait some more, and watch some more. You will fatigue more easily for a while, likely for some months to a year, but don't let that stop you from getting on with living. I've found a balance between living more vertically than I did before - not procrastinating on the important things in my life - and planning and doing things for the future which cannot be entirely ignored. Bottom line:There isn't much you can do, or quit doing at this point to influence ultimate outcome much. If there were any "unhealthy lifestyle" choices or habits going on before the Big C disrupted your life, I hope you've changed that by now. At best it's the most you can do, beyond having some vigililance for signs or symptoms of recurrence, and some of the potential treatment side effects, much as you would for any other known medical condition. The uncertainty of the future is no different than any other risks you take every day, by merely walking across a street or driving to work. Came to the realization that I could control some things, but many other things I could not, that no amount of worry or fretting about the latter would influence or affect them, and a greater calm entered my life . . . not just surviving, but thriving. John jalind Sun, 27 May 2012 00:00:00 GMT P.S.  Start those six months projects and even those years long projects.  Trust me, you will see them through.  Dlynn1210 Sun, 27 May 2012 00:00:00 GMT Hi Johnny - Yahoo!!!!!  We told you that you would make it!  You've done everything you were supposed to do and in the words of my oncology nurse after I got my first all clean scan results, "Now you know why we kicked your butt all those months?"  AND it was worth every thing I went through to hear those words.   We are human and I know every time I got close to a checkup I would actually start to have symptoms.  Talk about mind over matter - my checkups have been perfect for 4 1/2 years now.  Johnny, don't let cancer rob you of one more day out of your life - or your wive's life.  Our type of cancer is only a period not a sentence!  Whenever I begin to feel depressed, I think about the many who are living with a type of cancer that is just palatable.  We are so blessed to have a type of cancer that is totally cureable.  We do have a few residual effects from the treatment but I know I appreciate life so much more today than I did 5 years ago.  Each day is a gift from God - and I work at making the extra time He gave me count. Now - go enjoy the rest of your life. Diana    Dlynn1210 Sun, 27 May 2012 00:00:00 GMT David - So glad to hear from you.  Thanks for the words of encouragement!  Frat party with girls and booze, eh? JohnnyO Sun, 27 May 2012 00:00:00 GMT Johnny   Good going, glad to hear you're past the exit sign of cancer City. Do me a fvaor, give up on the depression and waiting on pins and needles. Tonsil/throat canser has a 90% cure rate. You have a better chance of now of dying now by lightening or a frat party with girls and booze! 90% cure rate, match that with high chlorestereal, etc. Come Sept you'll feel 90% tip top. David Diamond_David Sun, 27 May 2012 00:00:00 GMT Hi everyone! Well, for those of you still paying attention, and I do appreciate those of you who are, I decided to go with the third chemo treatment despite the fact that I suffered some hearing loss from the second dose.  The literature (read: "God" for research doctors) says that 200 mg/m2 is the threshold dose above which there is no proof of more effectiveness or not; and I had received the 200 after my first 2 doses.  So the the 3rd dose was in the eyes of my doc, an emotional, as opposed to a scientific, choice.  That is, since there is no proof that it will help anymore, it doesn't scientifically make sense to get it; yet, there is no proof that it DOESN'T help either, so I said that you gotta play to win.  And he agreed that that was a valid approach which he would not discourage. So, I'm now 3 days post-treatment, and this is the last treatment before my first 3-month post-treatment scan.  My side effects are good and resolving fast, thank God.  Back on solid food with Ensure supplements (just holding my nose when I drink them), no throat pain, a little tired and light-headed from the last chemo, and some ear ringing that I'm pretty sure will resolve to a tolerable level in the upcoming weeks. So now my wife and I are in depression mode as the treatment is done and all we can do is wait, and wait, and wait, and face the fact that we will be waiting with dread for the foreseeable future. 3 months, 3 months, 3 months, 3 months,  6 months, 6 months, 6 months, I don't even know the schedule, but it sucks and it is going to be a hard adustment.  My current approach is to live each day as if it's my last, not look to the future, but geez, I have some 6-month projects around the house that I'd like to start but am afraid to consider.  I imagine that some sort of survival/adjustment mode kicks in at some point, but I honestly don't see how the uncertainty can't dominate out lives when there so much at stake with three young children. JohnnyO Sun, 27 May 2012 00:00:00 GMT Hey Johnny .... Tawny's message rang a few bells with me as well ... I think we have all been there several times through this journey! I was fortunate to not get the feeding tube. I was literally 24hrs away from haviong it implanted when everything started to turn around for me!! I will never forget that morning when I was supposed to have the procedure done, I had been putting it off and fighting it and fighting it! I had personal reasons and was just not prepared to get it done. But when you reach that point, when everything is so sore and your weight keeps falling and you're not getting ANY nutrition, its at that point you surrender. So The night before all of a sudden I could swallow. I hadn't swallowed anything in almost 10 days ... and then all I wanted was toast and peanut butter ... two slices... my wife couldn't believe it! But it was the next morning when I sat with the Dr wo was to do the procedure and I told him what had happened. He told me two things ..1) some people get to that point and then break the thresh-hold ... I happened to be that one of a few but more importantly it was the second thing he told me that made me realized the challenge I was going through and would still be facing ... he said the treatment for your cancer, "throat cancer" is the most barbarrick of all the cancer treatments. He went on to explain how at the early stages we don't realize just how important that pathway is .... but as it gets increasingly sore to the point where your ability to swallow is all but gone, you realize that this is the gateway to everything that your body requires. That's when it set in or me.  But like I have said previously, it DOES and it WILL get better. I am here as living proof. I am actually back singing and ;leading worship at my church, 181 days after my last chemo and radiation treatment!!!! Keep up the good work, positive thoughts and clear mindset .... I'll keep up the prayers! God Bless Randy Randall55 Wed, 16 May 2012 00:00:00 GMT On May 15, 2012 10:09 PM tawny111 wrote: Hi Johnny! Also, KUDO'S for doing without the feed-tube. My husband is post treatment 4 months, he's relying on his peg tube way too much, yet the one thing he likes, is KFC mashed potatoes with tons of gravy. He can't even drink an ensure.....says it's too thick, so don't feel bad, at least you are trying! On Mother's Day, I went out to KFC, once again, ordered large mashed potatoes and gravy....came home after a hectic day, and the potatoes were in the bag, NO GRAVY!  I lost my cool, i suppose, called the place and told them off ( I'm not that type of person!), the girl casually said, you can come back out and get your gravy! I was exhausted, and just laughed at her comment and hung up. Next morning, got in my car, and saw something on the passenger side rollin around on the rug....omg, the gravy, of course! Ughh, what a mess, yet, as you stated, ya want to put a bag over your head, it made me laugh! May I add a good note: hubby is back to work, full time, getting stronger by the week, I look back a couple months ago, and never thought it would happen!  Back then, I was with a very frustrated, depressed person.....The hardest thing I ever had to go thru with him...! Fast Forward....Forge onward.....you will be fine! xo Johnny If any of our emails shows you that there is life after treatment, it has to be tawny's.  I got a good laugh just thinking about her expression when she found the gravy the next morning.   Tawny - It took me a year to get off the tube but it is now a very distant memory-  and I am now a proud member of the two belly button club.    Diana Dlynn1210 Wed, 16 May 2012 00:00:00 GMT JohnnyO: I've been reading your post from time to time & only posted to you maybe twice but still want to say, HANG IN THERE.  That Boost, Ensure can taste like anything you want it to taste like.  Here's a real quick actual thing I went through two years ago that has nothing to do with Cancer but it proves that the mind does play a major role in our taste & satisfying our hunger. Went to PCP Dr with major discomfort in the abadomon right below the soleplex.  Get to ER ASAP, your appendex is getting ready to burst.  Spent next four days in hospital while they ran $52,000.00 worth of very unsually test.  Couldn't eat anything just IV of fluids.  They found nothing wrong with appendex & focused on gall bladder.  Put me under so many different domes & shot dye into me.  These things wouldn't show anything until they made me think about all the food I was going to eat when I got out and bam, that got the creative juices rolling in my gall bladder and what they found was my gall bladder was taking a little break and not functioning property - it seemed that when I thought about the food, the juices got rolling as the brain thought about it and sure enough the pictures before me being taken from that dome truly showed the connection between the brain & the gall bladder.  Other than the slow actions of the gall bladder, I had passed gall stones & the adhesions they left while traveling through me lite up like a star. So much for that - drink that Ensure/Boost and think it's the best darn thing in the world. Keep up the great work - stay focused - and lots of strength & prayers being sent your way.  Broken   Broken Wed, 16 May 2012 00:00:00 GMT Hi Johnny! Also, KUDO'S for doing without the feed-tube. My husband is post treatment 4 months, he's relying on his peg tube way too much, yet the one thing he likes, is KFC mashed potatoes with tons of gravy. He can't even drink an ensure.....says it's too thick, so don't feel bad, at least you are trying! On Mother's Day, I went out to KFC, once again, ordered large mashed potatoes and gravy....came home after a hectic day, and the potatoes were in the bag, NO GRAVY!  I lost my cool, i suppose, called the place and told them off ( I'm not that type of person!), the girl casually said, you can come back out and get your gravy! I was exhausted, and just laughed at her comment and hung up. Next morning, got in my car, and saw something on the passenger side rollin around on the rug....omg, the gravy, of course! Ughh, what a mess, yet, as you stated, ya want to put a bag over your head, it made me laugh! May I add a good note: hubby is back to work, full time, getting stronger by the week, I look back a couple months ago, and never thought it would happen!  Back then, I was with a very frustrated, depressed person.....The hardest thing I ever had to go thru with him...! Fast Forward....Forge onward.....you will be fine! xo tawny111 Tue, 15 May 2012 00:00:00 GMT On May 14, 2012 5:35 PM JohnnyO wrote: OK, 2 days post-treatment and I am in the worst condition I've been in since this all started.  Razor blades in the throat, no appetite, and the Ensures are starting to nauseate me.  For those of you who experienced these symptoms much earlier in their treatment, you are much stronger than I am.  I'm ready to wrap my head in a plastic bag.  Ok, so I won't do that.... I can deal with the pain.  What I'm really struggling with is the lack of appetite and forcing the Ensures down my throat.  The smell of the Ensures is starting to nauseate me.  Trying new flavors today, which is kinda funny  because I can't taste anything anyway.  I know the pain will go away, I know my  taste will return, at least somewhat.  When will my appetite return?Johnny, I'm so happy you are out of treatment!  I don't know how much time it took out of your day (for me, about 5 hours), but it's so nice not to have to do it! I know it's really bad now, but as your doctors no doubt told you, things continue to get worse ("cook") for a couple of weeks after radiation is over, and then they stabilize for another couple, and then the start to improve.  So what you're experiencing is completely normal.  I am still struggling with appetite 15 months out, but I too attribute it to my feeding tube.  I have gained about 10 # back and am at a happy weight.  I was not a big ice cream person before, but now rarely go a day without it.  It was very easy to eat (I like vanilla with pureed fruit--slides right down!).  Good luck with the eating.  You should be very proud that you managed without a tube.  I know I'm impressed!  Hang in there--you are almost over the hump now. Susan Sdurnell Tue, 15 May 2012 00:00:00 GMT On May 14, 2012 5:35 PM JohnnyO wrote: OK, 2 days post-treatment and I am in the worst condition I've been in since this all started.  Razor blades in the throat, no appetite, and the Ensures are starting to nauseate me.  For those of you who experienced these symptoms much earlier in their treatment, you are much stronger than I am.  I'm ready to wrap my head in a plastic bag.  Ok, so I won't do that.... I can deal with the pain.  What I'm really struggling with is the lack of appetite and forcing the Ensures down my throat.  The smell of the Ensures is starting to nauseate me.  Trying new flavors today, which is kinda funny  because I can't taste anything anyway.  I know the pain will go away, I know my  taste will return, at least somewhat.  When will my appetite return?John; if you can't get the pain under control ask for the Actiq pops. Our "friend" is very stingy & doesn't like to give it; so ask your other doc if you like them better. Hub didn't like magic mouthwash; prefered the baking soda. Have you tried Mucinex yet? You may slide down the next 2 weeks but please try to remember it is not going to last long. If it start getting depressed; it could prolong it; so speak to your Dr & they will prescribe something. Your taste should start to return soon. With hub; it was almost instant after he had the peg tube out; since you did not have one; hopefully someone else can give you a better time-line. He made sure he ate 3 times a day whether he felt hungry or not & is actually heavier now by a few pounds then when he started. If you don't like ensure & feel you can handle poached eggs; give it a try. That's what he swore by at 1st. You will get there. They didn't do this damage over-night. Hubs throat scabs didn't fully heal until month 8. Be patient. Roselvr Mon, 14 May 2012 00:00:00 GMT Just keep focused and know that many people are praying for you ... and it DOES get better!!! God Bless! Randall55 Mon, 14 May 2012 00:00:00 GMT Hey Diana -  Loved the mask story.  A fitting end to those nasty devices. No feeding tube for me, so hopipng that will make a difference with my appetite.  Interesting point about our brains being powerful tools for taste; I can "make" the Ensures taste better with my mind, but it would be better if they just did taste better. I'm not a big ice cream eater, which has been a challenge because I know that ice cream is often encouraged here.  May be time to try it. Thanks for your advice, and yes, I'll try to avoid the plastic bags, lol. JohnnyO Mon, 14 May 2012 00:00:00 GMT Thanks Randy.  "Old people;" I think that's exactly what the Ensures smell like to me.  Carnation Instant Breakfast seems to be a favorite here.    And the magic mouthwash.  Boy, am I looking forward to those days when the pain starts to subside. Congrats on being 6 months post-treatment. Thank you for your prayers; so important to me. JohnnyO Mon, 14 May 2012 00:00:00 GMT Hey Diamond D - Oh, yeah, I remember you posted me about the 2 weeks after treatment.  I was just waiting for you to post "I told you so!"  And here you are, and yes, you were right! I always forget the Carnation Instant Breakfast, which is funny because for soem reason I remember drinking that as a kid!  Well, if there ever was a time to try it again, now is it.  Thanks DD, and thanks for the words of encouragement. JohnnyO Mon, 14 May 2012 00:00:00 GMT I have been tracking your progress and can tell you that you are so right on track. You can see for yourself if you want to read my series of blogsra.1life2live.blogspot.comas I am now on day 180 post treatment. I can SO relate to the ensures!! I told my wife that every time I opened one all I could smell was "OLD PEOPLE" .... it was awful! The Carnation instant breakfast works ... although one day it will taste one way and the next another. It is all an experiment. You definitely want to keep the Magic Mouthwash going ... it is a great relief. What I can assure you of is that it DOES get better. it takes a couple weeks and then you start tp notice a difference ... a relief ... the razor blade feeling starts to dwindle and you learn to start cope with the internal swelling. Things definitely do get better. There is a light at the end of this tunnel and I guarantee you it is NOT a train!!! God Bless ... I will continue to pray for your recovery! Randy Randall55 Mon, 14 May 2012 00:00:00 GMT On May 14, 2012 5:35 PM JohnnyO wrote: OK, 2 days post-treatment and I am in the worst condition I've been in since this all started.  Razor blades in the throat, no appetite, and the Ensures are starting to nauseate me.  For those of you who experienced these symptoms much earlier in their treatment, you are much stronger than I am.  I'm ready to wrap my head in a plastic bag.  Ok, so I won't do that.... I can deal with the pain.  What I'm really struggling with is the lack of appetite and forcing the Ensures down my throat.  The smell of the Ensures is starting to nauseate me.  Trying new flavors today, which is kinda funny  because I can't taste anything anyway.  I know the pain will go away, I know my  taste will return, at least somewhat.  When will my appetite return?You may or may not remmeber, I posted for you a while back, you'll feel WORSE 2 weeks after teatment. You should be gargling and swallowing the magic mouthwash. I didn't use ensure, tastes bad. You can only get this gatorade product online, not in stores, its like a milkshake, 360 calaries ALL vitamins you need   Gatiorade recover shake amazon http://www.amazon.com/Gatorade-Performance-Recover-Chocolate   ALSO< my chemo doctor told me to do this, you'll like it. 1. Buy Carnation instant breakfast (lots of nutrients) and use vanilla frozen yogurt and some whole milk, blend it up and drink it. 2. Go BUY a milsake at a store, bring home and put the Carnation instant breakfast in it, mix. Keep extra for later. Tastes a lot better. Good luck, I promsie, you're over the hill  they are just still shooting bullets at you. Soon you'll be out of range David Diamond_David Mon, 14 May 2012 00:00:00 GMT On May 14, 2012 5:35 PM JohnnyO wrote: OK, 2 days post-treatment and I am in the worst condition I've been in since this all started.  Razor blades in the throat, no appetite, and the Ensures are starting to nauseate me.  For those of you who experienced these symptoms much earlier in their treatment, you are much stronger than I am.  I'm ready to wrap my head in a plastic bag.  Ok, so I won't do that.... I can deal with the pain.  What I'm really struggling with is the lack of appetite and forcing the Ensures down my throat.  The smell of the Ensures is starting to nauseate me.  Trying new flavors today, which is kinda funny  because I can't taste anything anyway.  I know the pain will go away, I know my  taste will return, at least somewhat.  When will my appetite return?Johnny I'm sorry but I don't remember if you have a feeding tube or not.  I put the Prosure right down my tube.  What I can tell you is for my mother who was told to drink Ensure during her illness, I made her shakes with the Ensure.  Cool is soothing on our throats as well.  She could taste the flavors but didn't like certain ones.  She loved chocolate but didn't like the taste of their chocolate.  I also played around with certain flavors of Ensure and other flavors of ice cream.  Like strawberry Ensure in vanilla ice cream and vanilla Ensure in strawberry ice cream.  It did make a difference for her.  My appetite was way off for a couple of years but I attribute that to the tube feeding.  I would have to remind myself to eat - my stomach wouldn't tell me.  It actually has come back closer to normal this past year.  When I first started eating, someone on CC recommended going to a smorgasboard - it gives a better idea of what we can and cannot eat - or what tastes good to us.  It worked for me - then I knew what to fix at home.  Baked ham was the first meat that went down well.  I had it for my Mother's Day dinner and still tastes really good.    It may sound strange but our brains are powerful tools for telling us what we like and don't like - and it doesn't always depend on taste buds.  I don't ever like to be a bearer of bad news but I also believe we have to know what is coming.  The two months after treatment were by far the worst for me (for some, it is less).  The mucous was horrible - and I mean absolutely horrible.  BUT the good news is that you WILL reach a day when this will be is as bad as it gets and it is all downhill from there.  The day you hear "You are clean" after your first scan - as one of my oncology nurses said "Now we know why we kicked your butt all those months."  Oh, how true - and it was worth it all to hear those three beautiful words. You have just been on a very tough journey and there is light at the end of the tunnel.  Been there - done that - so you can too.  Take care of yourself and stay away from plastic bags.  Diana         Dlynn1210 Mon, 14 May 2012 00:00:00 GMT On May 14, 2012 5:27 PM JohnnyO wrote: Hi Diana -  "The Mask!"  that made me laugh.  I brought it home with me as a conversation piece, but I intend to step on on it many times once I've had a chance to show it to everyone. I'll give the baking soda gargle a try, thanks!  And I willlook in to Produre.  Thanks again, and congrats on 6 months to go!Johnny All I can say is you are a glutton for punishment.  I actually had two masks because once I lost weight they had to redo mine.  I told them to throw them away but my hubby thought they would be good conversation pieces.  About a year later, we left on a mission trip and I asked my husband to turn off the water before we left at 4 AM.  He forgot - and the one time he forgot to turn off the water when we were leaving on an extended trip, the hose behind the washer blew and flooded our basement.  It was in the middle of summer and when we came home, it was to a moldy mess in the lower level.  Serpro threw out everything on the lower level - and guess what was down there.  It didn't bother me one bit to see them headed to the dumpster.  Prosure is a great product and has less of certain ingredients as cancer patients we don't need and has others that we do need. I hope the baking soda rinse works as well for you as it did for me.  Just swish it around in your mouth several times a day - it acts like a scraping agent and really worked well.  I kept a box on the bathroom vanity for a few months.  Diana     Dlynn1210 Mon, 14 May 2012 00:00:00 GMT OK, 2 days post-treatment and I am in the worst condition I've been in since this all started.  Razor blades in the throat, no appetite, and the Ensures are starting to nauseate me.  For those of you who experienced these symptoms much earlier in their treatment, you are much stronger than I am.  I'm ready to wrap my head in a plastic bag.  Ok, so I won't do that.... I can deal with the pain.  What I'm really struggling with is the lack of appetite and forcing the Ensures down my throat.  The smell of the Ensures is starting to nauseate me.  Trying new flavors today, which is kinda funny  because I can't taste anything anyway.  I know the pain will go away, I know my  taste will return, at least somewhat.  When will my appetite return? JohnnyO Mon, 14 May 2012 00:00:00 GMT Hi Diana -  "The Mask!"  that made me laugh.  I brought it home with me as a conversation piece, but I intend to step on on it many times once I've had a chance to show it to everyone. I'll give the baking soda gargle a try, thanks!  And I willlook in to Produre.  Thanks again, and congrats on 6 months to go! JohnnyO Mon, 14 May 2012 00:00:00 GMT On May 12, 2012 3:34 PM JohnnyO wrote: Hello everyone - Just checking in with my status update and new worries.  I finished radiation on Wednesday (Yay!), and managed to put on two pounds since I started this whole thing.  My throat did get a good bit more sore at the beginning of this week and continues to bug me, but the pain killers are working, although I have started to use the oxycodone at bedtime.  Opting for Ensures more often now, as I found that eating regular food was making my throat more painful.  Neck seems to be healing already, using Aquaphor to keep it from drying out and scabbing. My issue now is hearing loss from the Chemo.  I was scheduled for 3 chemos, and I have had two so far.  Had a hearing test after the first and hearing was normal.  After the second chemo, I experienced some hearing loss in the right ear, and my ears continue to ring which is annoying.  So the question is whether to do the third chemo.  The doc said that with the first two chemos I have met the "threshold dose," which means that the research literature shows that people who did not get the 200mg dose do not do as well as those who received 200mg or more.  There is not data to suggest that more than 200mg is any more effective than 200mg.  Of course, I want to hit this thing with everything possible, but the doc did not seem concerned and even recommended with my hearing loss that he would not encourage me to do the 3rd treatment.  Part of that is a quality of life issue; that is, if you're going to live for another 25-30 years, which is likely, you don't want to have even more hearing loss which might or might not occur with the next dose. Still dealing with heavy saliva (mucinex didn't work, but thanks for suggesting, Rosel), but like everything else, I'm learning to tolerate it.  Appetite still stinks and I'm forcing the Ensures down. Hi Johnny We're certainly not doctors and can only encourage you to follow your doctos advice regarding the number of chemo treatments.  No one forewarned me about the hearing loss that goes along with the chemo - or the ringing in the ears.  I found it out on my own.  I am 4 1/2 years post treatment and I do have a noticeable hearing loss - and the ringing drives me nuts at times but all in all - I am alive so I am not complaining.  As for the mucous - my heart goes out to you because that is my very worst memory all these years post treatment - that and the mask!  The only thing that helped me was baking soda in water.  Have you tried gargeling with this mixture?  It doesn't last long but I was grateful for any relief.  I went through more kleenex in the first two months after treatment ended that I should have bought shares in one of the companies.  I used 1 T of baking soda in a glass of water.  There was a produce made by the same people that make Ensure - called Prosure.  It is specifically for cancer patients.  You can order online from Walgreens. Diana    Dlynn1210 Sat, 12 May 2012 00:00:00 GMT On May 12, 2012 3:34 PM JohnnyO wrote: Hello everyone - Just checking in with my status update and new worries.  I finished radiation on Wednesday (Yay!), and managed to put on two pounds since I started this whole thing.  My throat did get a good bit more sore at the beginning of this week and continues to bug me, but the pain killers are working, although I have started to use the oxycodone at bedtime.  Opting for Ensures more often now, as I found that eating regular food was making my throat more painful.  Neck seems to be healing already, using Aquaphor to keep it from drying out and scabbing. My issue now is hearing loss from the Chemo.  I was scheduled for 3 chemos, and I have had two so far.  Had a hearing test after the first and hearing was normal.  After the second chemo, I experienced some hearing loss in the right ear, and my ears continue to ring which is annoying.  So the question is whether to do the third chemo.  The doc said that with the first two chemos I have met the "threshold dose," which means that the research literature shows that people who did not get the 200mg dose do not do as well as those who received 200mg or more.  There is not data to suggest that more than 200mg is any more effective than 200mg.  Of course, I want to hit this thing with everything possible, but the doc did not seem concerned and even recommended with my hearing loss that he would not encourage me to do the 3rd treatment.  Part of that is a quality of life issue; that is, if you're going to live for another 25-30 years, which is likely, you don't want to have even more hearing loss which might or might not occur with the next dose. Still dealing with heavy saliva (mucinex didn't work, but thanks for suggesting, Rosel), but like everything else, I'm learning to tolerate it.  Appetite still stinks and I'm forcing the Ensures down. John; do not do the 3rd dose. Hub had 100; then 75 & 75. I don't understand why they didn't cut yours down on #2 when you started having issues. Congrats on being done! Roselvr Sat, 12 May 2012 00:00:00 GMT On May 02, 2012 11:55 PM Roselvr wrote: On May 02, 2012 9:07 PM JohnnyO wrote: Hi Rosel - Just wanted to get back to you on your comment.  Right now, I have too much saliva and it is thick; I'm actually taking something to reduce my saliva.  The dry mouth, they tell, me follows later on, and that's what I'm worried about.  Thanks for your suggestions. I'm not doing fluoride trays; I asked about them but the dental surgeon says they don't bother to give them because the complaince rate is so low.  Just doing the fluoride treatments with a toothbrush.  Doesn't seem to cause dry mouth. I ended up laying into my doc about not offering me the amifostine - the drug that's supposed to stop salivary glands from getting destroyed by the radiation.  He claims to have never heard of anyone using it.  The nurse practioner said she knew of one patient who insisted on trying it, and he had to stop halfway through his treatments because of severe side effects.  They both believed that it was likely used 8 years ago and earlier when the didn't have the ability to direct the radiation beams as they do now, and the raditation ended up killing both salivary glands.  These days, they end up killing one salivary gland on the cancer side, and avoiding the salivary gland on the no-cancer side of the neck, which, they claim is better than subjecting people to an injection before each radiation treatment and knowing that a majoirty of people are not going to be able to tolerate it.  Still, I think I'm tougher than the average patient, and would like to maybe have given it a try.... Thanks for the offer to talk to my wife; I'll mention it to her, but my guess she's like me: wants to deal with it herself and close family, but much appreciates the posts here. Johnny; I would insist on the fluoride trays. Hub did not use them because of the mint burning his tongue & drying out his mouth & he paid for it after rads was over. His teeth started rotting until he started using them again & now he hasn't had any issues. It's rare he misses one night now. Have they suggested using mucinex for the thick saliva? Hub found that it helped. Hey JohnnyO!!  I found that the thick saliva was infact nto really saliva but a muucous that is formed by the body to try and repair a damaged area is the mouth....in this case the radiation!  I promise you that this will pass .....eventually! I now use Biotene products to help my dry mouth and the dry mouth spray moisturiser is great.  Hang in there!! yvonnestewart Sat, 12 May 2012 00:00:00 GMT Hello everyone - Just checking in with my status update and new worries.  I finished radiation on Wednesday (Yay!), and managed to put on two pounds since I started this whole thing.  My throat did get a good bit more sore at the beginning of this week and continues to bug me, but the pain killers are working, although I have started to use the oxycodone at bedtime.  Opting for Ensures more often now, as I found that eating regular food was making my throat more painful.  Neck seems to be healing already, using Aquaphor to keep it from drying out and scabbing. My issue now is hearing loss from the Chemo.  I was scheduled for 3 chemos, and I have had two so far.  Had a hearing test after the first and hearing was normal.  After the second chemo, I experienced some hearing loss in the right ear, and my ears continue to ring which is annoying.  So the question is whether to do the third chemo.  The doc said that with the first two chemos I have met the "threshold dose," which means that the research literature shows that people who did not get the 200mg dose do not do as well as those who received 200mg or more.  There is not data to suggest that more than 200mg is any more effective than 200mg.  Of course, I want to hit this thing with everything possible, but the doc did not seem concerned and even recommended with my hearing loss that he would not encourage me to do the 3rd treatment.  Part of that is a quality of life issue; that is, if you're going to live for another 25-30 years, which is likely, you don't want to have even more hearing loss which might or might not occur with the next dose. Still dealing with heavy saliva (mucinex didn't work, but thanks for suggesting, Rosel), but like everything else, I'm learning to tolerate it.  Appetite still stinks and I'm forcing the Ensures down. JohnnyO Sat, 12 May 2012 00:00:00 GMT On May 05, 2012 8:36 PM Sdurnell wrote: Johnny, My regular dentist insisted on the trays.  We have dental insurance, and they were covered.  But my ENT wasn't satisfied and sent me to an oral surgeon with experience with oral cancers.  Both they and my RO told me lots of stories about people with terrible tooth problems after radiation--teeth breaking off, jaw infections that won't heal after dental work, folks needing artifical jaws or bone grafts, and folks whose grafts failed, leaving them with no jaw. All that stuff really does happen to people who have radiation to the throat.  In the end, because of the poor condition of my gums and the fact that all my molars have very old fillings that were liable to need replacing or worse, root canals, I opted to have my teeth pulled.  Too bad I can't give the trays to someone else! But all those docs put a great emphasis on dental care after radiation.  My ENT says that historically throat cancer patients were older men who drank and smoked to excess--that could have something to do with the low compliance rate in the past.  He says he always makes guys like that have their teeth pulled, because they do not take any better care of their teeth than of the rest of their bodies.  (I am old--61--but not a guy, nor a drinker or smoker, just the bad teeth.) If you are interested, and I would be in your shoes, I'd ask again;  your doctors should be treating you like a person, not a statistic or an average.  If you feel like you can keep up with the regimen, I'd try it.  I think my dentist recommended doing it, as others have described, at least twice a day.  I'm sure any dentist can make the trays for you after getting an impression (which you wouldn't want to do now probably, but maybe after everything heals). In the year plus that I've been here I've seen many folks discuss the problems with teeth post radiation.  (Broken teeth, jaw infections that refuse to heal, 30+ sessions in a hyperbaric chamber in order to have any dental work done, etc.)  I'd really consider getting the trays. SusanSusan; thank you for adding what you did; I never thought of it that way with them just pulling the teeth because they didn't think the men would do the trays. It's no secret what I went through with my own hub & the trays; he fought tooth & nail because of the mint fluoride burning his mouth; he also started with decent teeth & didn't think he would have issues. While our RO DID explain the trays; I do not feel he did a good enough job of it (John; did you read that?) & I learned way more by coming here & reading posts by other caregivers & patients who actually explained it better then the RO could.. wish I could remember what he said- along the line of it will protect your teeth from decay. Do not remember it being involved about the saliva changing & all of the other issues. About 5 months after treatment hub went to the dentist & got a root canal which did not take; they wanted $750 to retreat or they wanted to do a reverse by cutting in the gum & going through the bottom of the root. I was highly against that & pushed him to see the oral surgeon in Philly who put him on antibiotics & told us that he may need a few tries with it; but it should clear up. He did not need to retreat. I was so insistant because the same dentist retreated mine & I just had it pulled; the filling didn't stay in & the tooth broke at the gums. I dislike the dentist & knew we needed another opinion. Since hub has started using the trays; his teeth have been fine. As far as brushing verses trays; I would think that in the beginning & after rads that the trays would "soak" the teeth in fluoride better then just brushing. John; I have an email set up with all sorts of info on teeth; that's another reason I said to have your wife email me. It's details like this that are just easier to email then post. Roselvr Sat, 05 May 2012 00:00:00 GMT Johnny, My regular dentist insisted on the trays.  We have dental insurance, and they were covered.  But my ENT wasn't satisfied and sent me to an oral surgeon with experience with oral cancers.  Both they and my RO told me lots of stories about people with terrible tooth problems after radiation--teeth breaking off, jaw infections that won't heal after dental work, folks needing artifical jaws or bone grafts, and folks whose grafts failed, leaving them with no jaw. All that stuff really does happen to people who have radiation to the throat.  In the end, because of the poor condition of my gums and the fact that all my molars have very old fillings that were liable to need replacing or worse, root canals, I opted to have my teeth pulled.  Too bad I can't give the trays to someone else! But all those docs put a great emphasis on dental care after radiation.  My ENT says that historically throat cancer patients were older men who drank and smoked to excess--that could have something to do with the low compliance rate in the past.  He says he always makes guys like that have their teeth pulled, because they do not take any better care of their teeth than of the rest of their bodies.  (I am old--61--but not a guy, nor a drinker or smoker, just the bad teeth.) If you are interested, and I would be in your shoes, I'd ask again;  your doctors should be treating you like a person, not a statistic or an average.  If you feel like you can keep up with the regimen, I'd try it.  I think my dentist recommended doing it, as others have described, at least twice a day.  I'm sure any dentist can make the trays for you after getting an impression (which you wouldn't want to do now probably, but maybe after everything heals). In the year plus that I've been here I've seen many folks discuss the problems with teeth post radiation.  (Broken teeth, jaw infections that refuse to heal, 30+ sessions in a hyperbaric chamber in order to have any dental work done, etc.)  I'd really consider getting the trays. Susan Sdurnell Sat, 05 May 2012 00:00:00 GMT On May 03, 2012 10:33 PM JohnnyO wrote: Wow, Rosel.  You know, I specifically asked about the fluoride trays because that seemed to be obviously more effective, but the dental surgeon didn't give any hint that it would make that much of a difference from brushing (even the gel instructions talk about brishing it on).  What is it, 10 minutes that the trays are used?  I would do that if it makes that much of a difference.  I'll bring that up with the dental surgeon.  Thanks. Nobody's mentioned mucinex.  The gave me glycopyrylate to reduce my saliva output.  It sorta works, but I wouldn't mind a little thinning to get it outa my throat. We had the same problem; no one told us anything. Seemed like we had to figure things out on our own. Not sure who suggested the Mucinex at one point but it worked. I have 2; not sure which one he liked better; I think it was the DM version. I'll grab the boxes next time I get up. The one who told us to get the flouride trays was rads. He wrote a script for the dentist; it was not covered under insurance; cost was $250. He also wrote the script for fluoride. I don't know what the difference is between brushing & trays Roselvr Sat, 05 May 2012 00:00:00 GMT JohnnyO, If I may add to what Rose mentioned and you spoke of, the Flouride Trays. I have used them for the first 5 years and had good results. I was instructed to use 1-2 drops of Flouride per tooth in the trays, insert the trays and let them stay on your teeth for roughly 10 minutes. Remove trays and spit any loose fluid out. Let the Flouride remain on your teeth for 30 minutes before rinsing and spitting. The down side of this is the initial cost of the Trays, mine were about $400 in 2004. Your insurance may pay for them, some do, others don't. I have since stopped seeing my Cancer Dentist as I was told that my home care is very good in their eyes and I also see the VA Dentist. The VA Dentist has me using the brush on Flouride Gel which I use the same procedure, but without the tray. I brush the Gel on, spit any extra out and let it set on my teeth for 30 minutes and rinse, spit. I have a tendency to over do things, so many times I let the Flouride set for an hour on my teeth then rinse. I have been doing the brush on flouride gel now for roughly 2 1/2 years with the same results, no cavities. I do indulge in cake and ice cream at Birthday parties, etc. I just make sure I have my Biotene toothpaste handy so I can go off to brush after eating sweets. The Cancer Dentist had me using Perio-Check Flouride and my teeth turned brown, I thought it was the coffee I was drinking. The VA Dentist told me that the Perio-Check was causing the teeth to brown and has me using PerviDent 5000, Spearmint. It doesn't burn my mouth. My teeth have lightened up some now. My Best to You and Everyone Here   PopPop Fri, 04 May 2012 00:00:00 GMT On May 03, 2012 10:33 PM JohnnyO wrote: Wow, Rosel.  You know, I specifically asked about the fluoride trays because that seemed to be obviously more effective, but the dental surgeon didn't give any hint that it would make that much of a difference from brushing (even the gel instructions talk about brishing it on).  What is it, 10 minutes that the trays are used?  I would do that if it makes that much of a difference.  I'll bring that up with the dental surgeon.  Thanks. Nobody's mentioned mucinex.  The gave me glycopyrylate to reduce my saliva output.  It sorta works, but I wouldn't mind a little thinning to get it outa my throat. My dentist gave me a prescription flouride toothpatse.   I have bought and used a Waterpick and it does great, my dentist is happy   I've had good dental results. The thick stuff will just stop all at once. Don't know hy, but it will.   This is like 6 weeks of bootcamp in the service. At the end, life is good.   Stick in there. David Diamond_David Fri, 04 May 2012 00:00:00 GMT Wow, Rosel.  You know, I specifically asked about the fluoride trays because that seemed to be obviously more effective, but the dental surgeon didn't give any hint that it would make that much of a difference from brushing (even the gel instructions talk about brishing it on).  What is it, 10 minutes that the trays are used?  I would do that if it makes that much of a difference.  I'll bring that up with the dental surgeon.  Thanks. Nobody's mentioned mucinex.  The gave me glycopyrylate to reduce my saliva output.  It sorta works, but I wouldn't mind a little thinning to get it outa my throat. JohnnyO Thu, 03 May 2012 00:00:00 GMT On May 02, 2012 9:07 PM JohnnyO wrote: Hi Rosel - Just wanted to get back to you on your comment.  Right now, I have too much saliva and it is thick; I'm actually taking something to reduce my saliva.  The dry mouth, they tell, me follows later on, and that's what I'm worried about.  Thanks for your suggestions. I'm not doing fluoride trays; I asked about them but the dental surgeon says they don't bother to give them because the complaince rate is so low.  Just doing the fluoride treatments with a toothbrush.  Doesn't seem to cause dry mouth. I ended up laying into my doc about not offering me the amifostine - the drug that's supposed to stop salivary glands from getting destroyed by the radiation.  He claims to have never heard of anyone using it.  The nurse practioner said she knew of one patient who insisted on trying it, and he had to stop halfway through his treatments because of severe side effects.  They both believed that it was likely used 8 years ago and earlier when the didn't have the ability to direct the radiation beams as they do now, and the raditation ended up killing both salivary glands.  These days, they end up killing one salivary gland on the cancer side, and avoiding the salivary gland on the no-cancer side of the neck, which, they claim is better than subjecting people to an injection before each radiation treatment and knowing that a majoirty of people are not going to be able to tolerate it.  Still, I think I'm tougher than the average patient, and would like to maybe have given it a try.... Thanks for the offer to talk to my wife; I'll mention it to her, but my guess she's like me: wants to deal with it herself and close family, but much appreciates the posts here. Johnny; I would insist on the fluoride trays. Hub did not use them because of the mint burning his tongue & drying out his mouth & he paid for it after rads was over. His teeth started rotting until he started using them again & now he hasn't had any issues. It's rare he misses one night now. Have they suggested using mucinex for the thick saliva? Hub found that it helped. Roselvr Wed, 02 May 2012 00:00:00 GMT Hey Pop-Pop - Boy, that was a bad day that I previously posted on; doing better now, though there are ups and downs.  Thanks for tolerating my venting. Despite my misery, I am eating all of the cardboard and supplementing with Ensures.  Actually put on 2 pounds since my last visit.  Interestingly, it is the lack of appetite, not hte pain, that is hindering my eating.  In fact, at this point, I'm just drinking 2 Ensures for lunch.  I'm still eating regular food for breakfast and dinner.  5 treatments to go as of today.  That's 5/6ths of the way through treatments, but I still have a dreaded chemo at the end that I'm not sure I want to endure because of my ear ringing.  Going to see the audiologist again beforehand. Good to hear from you. John JohnnyO Wed, 02 May 2012 00:00:00 GMT Hi Rosel - Just wanted to get back to you on your comment.  Right now, I have too much saliva and it is thick; I'm actually taking something to reduce my saliva.  The dry mouth, they tell, me follows later on, and that's what I'm worried about.  Thanks for your suggestions. I'm not doing fluoride trays; I asked about them but the dental surgeon says they don't bother to give them because the complaince rate is so low.  Just doing the fluoride treatments with a toothbrush.  Doesn't seem to cause dry mouth. I ended up laying into my doc about not offering me the amifostine - the drug that's supposed to stop salivary glands from getting destroyed by the radiation.  He claims to have never heard of anyone using it.  The nurse practioner said she knew of one patient who insisted on trying it, and he had to stop halfway through his treatments because of severe side effects.  They both believed that it was likely used 8 years ago and earlier when the didn't have the ability to direct the radiation beams as they do now, and the raditation ended up killing both salivary glands.  These days, they end up killing one salivary gland on the cancer side, and avoiding the salivary gland on the no-cancer side of the neck, which, they claim is better than subjecting people to an injection before each radiation treatment and knowing that a majoirty of people are not going to be able to tolerate it.  Still, I think I'm tougher than the average patient, and would like to maybe have given it a try.... Thanks for the offer to talk to my wife; I'll mention it to her, but my guess she's like me: wants to deal with it herself and close family, but much appreciates the posts here. JohnnyO Wed, 02 May 2012 00:00:00 GMT Hey Susan - A little tough love can work wonders for one's attitude.  I'm glad you decided to send your post. Ah, but to hear about survivors doing well, well those are the posts that really make me happy!  So  glad to hear you're looking great, eating well, and are well! Stay tuned for my next meltdown! John JohnnyO Mon, 30 Apr 2012 00:00:00 GMT On Apr 27, 2012 9:15 PM JohnnyO wrote: Hey Susan - Thanks for your comment.  Yeah, I was pretty tired when I posted my rant; you're right, I need to get some sleep.  Last night I went into another room, laid on the couch and watched a movie alone; and you know what?  Everybody was just fine; so your advice is well taken. "Buck up!" Now that's what I need to hear!  I'm almost embarrassed at my last post because my approach to this has always been to push forward and not let this thing get me down.  Today is a much better day, and I'm even thinking of giving the doctors a little benefit of the doubt (but not much!).  I'll sniff a lemon before my next radiation treatment, lol. My wife is just fabulous.  I know she feels sad for me, but she also knows that I do better when we're all doing our regular thing.  She asks me if I need a ride to treatment, I say, "no,"and off she goes to do what she would normally do.  On the one hand, I feel alone; on the other hand, what, am I going to drag her to treatment so she can feel bad?  She came and sat with me last night, and that was just wonderful, the two of us just relaxing for a bit with the kids in another room.  Very therapeutic. I'm going to envision myself bending over and you kicking me where the sun don't shine; thanks for your motivating  and kind words.  Much thanks for understanding my rant. Johnny Johnny, I'm so glad you're feeling better and more optimistic!  This treatment stuff really can play havoc with your moods and outlook from day to day.  I really hesitated to send my post, but I realized that at certain points I have needed a little "tough love" myself. During the last two days I've had a CT scan and visited with three of my doctors.  Fourteen months out of treatment, they are all telling me how great I look (at least compared to a year ago), and are all happy at how well I can now eat.  It's a great thing to make your doctors happy!  Just think, you will probably be hearing the same thing in a year or so.  All the best to you and your wife, who sounds very wise and I'm sure is being a trouper. Susan Sdurnell Sun, 29 Apr 2012 00:00:00 GMT Dear Child, It's probably OK for your mom to be watching the kids now if she's up to it, as a normal routine is comforting and won't leave her too much time to worry.  But once her treatment starts, whatever it is, it might be a good idea to monitor how she is doing pretty closely.  The options are usually some combination of surgery, radiation, and chemo, and each of them can have pretty serious, and tiring, side effects.  I could barely take care of myself during the second week of radiation onward.  Taking care of children would have been out of the question--I felt rotten and needed too many naps. Best of luck to you and especially your mother. Susan Sdurnell Sun, 29 Apr 2012 00:00:00 GMT Your husband story sounds a lot like my mothers.  She has complained for a number of years that she had trouble swalloing.  Her doctor sent her to an ENT and nothing was done.  She got sick between Christmas and New Years 2011 and went to PrimeCare and they are the ones that found the mass in her lung, but it was thought to be from the neuphomia that she was suffering from.  It was not a couple of weeks ago when she changed doctors due to insurance that all of this started.  We have a biospy on Monday and should learn the results no later than Wednesday to see what we are going to do next.  My mother is facing this monster head on, but the rest of the family really does not want to talk about it.  My brother is still dropping his three kids off for her to watch, my son and daugther-in-law still have her watch their two kids and I very concerned that she is not going to be able to keep this up once treatment starts and she is not one to say no when it comes to her grandchildren and great grandchildren. Since your husband started his treatment how has he health amd mental status become? God speed to you and your husband - prayers coming your way. childofcancerpt Sat, 28 Apr 2012 00:00:00 GMT My husband was where you were just a month ago.  He had not sore throat or trouble swallowing.  He gad a lump on the L side of his neck which he thought was just swollen glands from a bad cold he had had.  He mentioned the lump to his Dr. sho sent him for an ultra sound, and then to an ENT.  I will probably always remember trying to stay busy waiting for the biopsy results, and the numbness and shock that followed hearing the dreaded "C" word.  Now we're in the middle of chemo and radiation treatments and it's still scary.  Now that the shock and panic have passed we're dealing with it one day, and one problem at a time.  Educating yourself and asking questions was what helped me the most.  It's so much easier to deal with the know than the unknown.  This forum is an invaluable resource, so take advantage of it.  Best wishes to you, and God bless. pineconepeg Sat, 28 Apr 2012 00:00:00 GMT Hey Susan - Thanks for your comment.  Yeah, I was pretty tired when I posted my rant; you're right, I need to get some sleep.  Last night I went into another room, laid on the couch and watched a movie alone; and you know what?  Everybody was just fine; so your advice is well taken. "Buck up!" Now that's what I need to hear!  I'm almost embarrassed at my last post because my approach to this has always been to push forward and not let this thing get me down.  Today is a much better day, and I'm even thinking of giving the doctors a little benefit of the doubt (but not much!).  I'll sniff a lemon before my next radiation treatment, lol. My wife is just fabulous.  I know she feels sad for me, but she also knows that I do better when we're all doing our regular thing.  She asks me if I need a ride to treatment, I say, "no,"and off she goes to do what she would normally do.  On the one hand, I feel alone; on the other hand, what, am I going to drag her to treatment so she can feel bad?  She came and sat with me last night, and that was just wonderful, the two of us just relaxing for a bit with the kids in another room.  Very therapeutic. I'm going to envision myself bending over and you kicking me where the sun don't shine; thanks for your motivating  and kind words.  Much thanks for understanding my rant. Johnny JohnnyO Fri, 27 Apr 2012 00:00:00 GMT I have been away for a while, and am so happy to see that you are doing so well!  I am very impressed that you continue to be able to eat at this late date in your treatment.  I don't know if it's any consolation to you that, as lousy as you feel, you are really ahead of the game in comparison to many of us, and that really does bode well for your recovery, when the recovery time comes. I asked my RO about saliva-saving drugs, and he said that there was not good evidence they worked;  he said sniffing a lemon just prior to radiation seemed to work as well.  You sound really tired--why are you awake when you're exhausted?  Sleep is a great healer, and cancer treatment is very tiring. Try to get plenty of it;  you will likely need a lot more than usual. I would think you don't need to be happy all the time for your kids.  While it's important to spare them scary details if they are very young, kids can understand being sick and not feeling happy about it.  As long as they know that nothing is their fault, and as long as they are reminded that you are getting better, you should be able to act sick!  You are sick! While I was undergoing treatment, my husband did everything.  All his regular chores, plus all of mine, plus earning a living and health insurance so I could be treated, plus handling my crises.  It was extremely stressful for him.  Later, after things got better, I asked him how he stood it.  He said that however bad things got for him, he figured they were much worse for me.  I'm sure your wife feels the same way. I know that this is a very stressful time for both you and your wife.  You both have to try to be brave for each other, and that's hard.  One of the things we enjoyed was my husband reading to me.  Maybe your wife would feel better if you could think of little things for her to do for you.  I spent a lot of time alone, but I remember how comforting it was to have my daughter there after school, and especially my husband after work.  Maybe you could just tell her how much it means to have her there.  Also, do both of you have outside support systems?  Are there other people who can be there for you?  And does she have a chance to get out and do things with others too? I'm sorry your doctors are letting you down.  It must be a terrible feeling to think that you can't completely trust them.  Be sure that you are asking them any and all questions that occur to you, and have your wife ask too if she goes with you.  Don't let them off the hook.  The truth is that some side effects can be from either chemo or radiation, and the combination can be particularly brutal.    And now, at the risk of sounding uncaring, I am going to tell you something my OB nurse said to me when I got to something like your state in my son's difficult birth.  She told me that I could not "lose it" at that point, because it was only going to get worse and I had to buck up for what was to come.  It was actuallly great advice for me, and I managed to pull myself together, and the eventual outcome was so worth it! Now, I don't mean to equate the suffering of throat cancer treatment with that of labor.  It's much, much worse than childbirth!  But in my experience and according to everyone else, things will be getting worse before they get better.  You have gone through four weeks of hell so far, and survived pretty well.  Visualize those cancer cells being zapped to oblivion!  Get yourself through one day, even one hour, at a time.  Know that a better day is coming, that there is a light at the end of this particular tunnel, no matter how dark or dismal things seem along the way.  The outcome--a life, and one free of cancer--is possible, and at some point in the future will seem so worth it! But of course it's completely fine to "lose it" and rant here.  That's one the reasons we are all here.  As you know, you will always find sympathetic, understanding ears for your misery. Best of luck to you and your family. Susan Sdurnell Fri, 27 Apr 2012 00:00:00 GMT JohnnyO, I am glad to see you take a few minutes to check in and let us know how you are doing. We hear you loud and clear, frustration,venting, uncertainty, and fatigue, and trying to put on the happy face are all working on you and your family. Vent away, as we will listen. As much as you don't feel like eating and I know the feeling, at least try and get in 3/4 of the calories you need now. As mentioned, it is going to get worse before it gets better and you are headed into the rough waters now. As DiamondD mentioned, we "Cook" for a few weeks past the final treatment. After that, we slowly improve weekly, not daily as we hope we will. Of course, the montra here is, each person is different and we recovery differently. You may be the type that bounces back quickly, I hope you do. Your wife is like many people trying to help, not knowing what is the best thing for you to be comfortable. I mentioned to my wife, just having her in the next room when I needed something was a huge comfort to me. I am normally a very quiet person and don't talk much anyway. With the radiation beating me up and I could only talk at a whisper, I spoke sparingly.  Just let her know that you appreciate her being there for you. The Caregivers are sometimes overlooked during all this. Give me a shout if you want to. My Best to You, Your Family and Everyone Here PopPop Fri, 27 Apr 2012 00:00:00 GMT After 2 weeks it gets worse and will be for about 2 weeks, then you're coming back. I had lost my appetite and they gave me a pill to increase my appitite. 1. It didn't work.2. Came back 4 months alter3. That pill made me get up and PEE all night. They didn't tell me, looked it up, was a side effect. Couldn't stop going, still can't, had to go to a urologista nd try 3 pills to finally get one that HELPS. I used to sleep all night long, SOME nights I sleep all night, because of that pill. David   ------------------------------------------------------- Thanks DiamondD - Hangin' in. I'm ok with the water bottle - would have been better that I never heard about that other drug - but I get so pissed off that these docs are so freaking cocky, and they don't know much except "what the literature says." And they assume that their patients are ignorant, and they look at you humorously if you question them on whether their radiation fields are correct and whether the radiation techs know what they're doing. Yeah, well, so I'll walk around with the water bottle for the rest of my life because these "smart guys" did me a favor by sparing me the short-term side effects (hypotension - and my BP borders on high) of this drug during the few months of treatment. Hey, I hope you meant "downhill" after the two weeks post-treatment. It's got to go downhill at some point to return to feeling better????? Keepin' on, David. Thanks again. Diamond_David Thu, 26 Apr 2012 00:00:00 GMT On Apr 26, 2012 8:46 PM JohnnyO wrote: Thanks DiamondD - Hangin' in.  I'm ok with the water bottle - would have been better that I never heard about that other drug - but I get so pissed off that these docs are so freaking cocky, and they don't know much except "what the literature says."  And they assume that their patients are ignorant, and they look at you humorously if you question them on whether their radiation fields are correct and whether the radiation techs know what they're doing.  Yeah, well, so I'll walk around with the water bottle for the rest of my life because these "smart guys" did me a favor by sparing me the short-term side effects (hypotension - and my BP borders on high) of this drug during the few months of treatment. Hey, I hope you meant "downhill" after the two weeks post-treatment.  It's got to go downhill at some point to return to feeling better????? Keepin' on, David.  Thanks again. I'll share a secret with you; a lot of the nurses couldn't stand me because I speak up. Hub used to tell me -"doesn't it bother you when they shoot you the evil eye?" I told him no; & that if this was their loved one; they would not sit back with their mouth shut. You wouldn't believe how many would look at my hub waiting for him to say how he was but I was the one talking! LMAO! too bad.. Roselvr Thu, 26 Apr 2012 00:00:00 GMT On Apr 26, 2012 6:17 PM JohnnyO wrote: 21 radiation treatments down, 9 to go.  So tired of this shit (there, I said it).  My ears feel like they've been boxed from the chemo, and the ear ringing is disturbing.  I feel in a daze most of the time (not even on narcotics yet), and my appetite is shot.  Seems like it's always time to eat and I am never hungry.  ARGGHGHGHHHGH!  And everything tastes like nothing, which is so freaking disappointing when my wife make some of my favorite foods.  And force it down I do, seemingly constantly.  I just want to feel normal again, and every freaking day I hop in the car to go the freaking hospital; not a very normal feeling.  And I feel so alone.  My wife just looks at me pitifully, asking me what she can do for me.  It's as hard for her, for sure; and there's nothing, really, she can do that I can think of, except pick up stuff that I think I might be able to eat.  We're suffering differently; I'm having a pity party for myself, but she's dealing with the bigger picture, I think. And I'm done with the doctors.  The chemo guys blame the rads guys for some of my side effects; and the rads guys blame the chemo guys.  I'm not sure these guys know as much as they'd like us to believe they do. And another thing:  AMIFOSTINE.  This is a drug that apparently protects the salivary glands during rads and the kidneys during chemo, and none of the docs ever brought it up to me.  I found about it from a post here a couple of days ago; nurse practioner says risks outweigh benefits.  Now, I believe it's too late to start.  Why wasn't I given the option???? This whole thing sucks.  Acting happy for the kids, trying to stay awake when I'm exhausted....Calgon, take me away!!! John; you're almost at the finish line! You've done amazing with no peg tube. There are a few things they can give for saliva; guess what? Hub didn't have it either & I felt the same as you.. cheated that we were not offered to at least try it to judge for ourselves.I was not at this board back then & learned after the fact. One is a mouth rinse; Caphosol; but some didn't feel that it worked; while others did. It's hard to know; especially if you've been on it during most of treatment & still suffer from dry mouth. Biotene actually makes a mouth rinse too. Ask the wife to go to CVS or Walgreens to see what they sell over the counter for dry mouth. Hub felt that gum was the best solution. He liked Stride; the dark blue (think it's peppermint) & spearmint. Did they give you the fluoride trays? Did you get the berry fluoride or mint? Hub said the mint fluoride was more drying then berry. Once he was done; the ENT put him on Evoxac; then he switched to Salagen which is cheaper. Have your wife look up your medications; some of the side effects are dry mouth. On the positive side; hub's saliva is decent & he's not using anything for almost a year now. Hub finished everything 12/24. The 1st 2-4 weeks after were rough; especially emotionally because he expected to start healing quickly & felt so run down. If you'd like me to look at my digital calendar I can. I think you're younger then he was plus he had Lupus; so you may not be as exhausted as he was. And; if your wife needs an ear; tell her to make a new email acct just so she can email me. I'm here if she wants to talk. http://live.caphosol.com/us/PAT/Home.aspx Roselvr Thu, 26 Apr 2012 00:00:00 GMT Thanks DiamondD - Hangin' in.  I'm ok with the water bottle - would have been better that I never heard about that other drug - but I get so pissed off that these docs are so freaking cocky, and they don't know much except "what the literature says."  And they assume that their patients are ignorant, and they look at you humorously if you question them on whether their radiation fields are correct and whether the radiation techs know what they're doing.  Yeah, well, so I'll walk around with the water bottle for the rest of my life because these "smart guys" did me a favor by sparing me the short-term side effects (hypotension - and my BP borders on high) of this drug during the few months of treatment. Hey, I hope you meant "downhill" after the two weeks post-treatment.  It's got to go downhill at some point to return to feeling better????? Keepin' on, David.  Thanks again. JohnnyO Thu, 26 Apr 2012 00:00:00 GMT Johnny Actually most of us know how you feel. Doctors? They don't know everything. if you're like me you'll be carrying a water bottle everywhere. Too late now but keep on truck'n. There's nothing wife can do but wait on you. I was told and its true, will be WORSE 2 weeks after last treatment, then uphill from there. Another 90 days to feel better. One year from start its a memeory. All you can do is keep on keep'n on. David Diamond_David Thu, 26 Apr 2012 00:00:00 GMT 21 radiation treatments down, 9 to go.  So tired of this shit (there, I said it).  My ears feel like they've been boxed from the chemo, and the ear ringing is disturbing.  I feel in a daze most of the time (not even on narcotics yet), and my appetite is shot.  Seems like it's always time to eat and I am never hungry.  ARGGHGHGHHHGH!  And everything tastes like nothing, which is so freaking disappointing when my wife make some of my favorite foods.  And force it down I do, seemingly constantly.  I just want to feel normal again, and every freaking day I hop in the car to go the freaking hospital; not a very normal feeling.  And I feel so alone.  My wife just looks at me pitifully, asking me what she can do for me.  It's as hard for her, for sure; and there's nothing, really, she can do that I can think of, except pick up stuff that I think I might be able to eat.  We're suffering differently; I'm having a pity party for myself, but she's dealing with the bigger picture, I think. And I'm done with the doctors.  The chemo guys blame the rads guys for some of my side effects; and the rads guys blame the chemo guys.  I'm not sure these guys know as much as they'd like us to believe they do. And another thing:  AMIFOSTINE.  This is a drug that apparently protects the salivary glands during rads and the kidneys during chemo, and none of the docs ever brought it up to me.  I found about it from a post here a couple of days ago; nurse practioner says risks outweigh benefits.  Now, I believe it's too late to start.  Why wasn't I given the option???? This whole thing sucks.  Acting happy for the kids, trying to stay awake when I'm exhausted....Calgon, take me away!!! JohnnyO Thu, 26 Apr 2012 00:00:00 GMT To add to what Jeff is saying; this is a really good post. The person that made it is supposedly a rad oncologist in Georgia http://www.cancercompass.com/message-board/message/all,10245 RE: Radiation Burns bysxcavanaughon Sun Nov 01, 2009 05:40 PM Quote |Reply Hello- I am very sorry for your pain and suffering. I am going to offer some information, but it is important to me that you understand I am not arguing about what you have been through or trying to minimize it- just helping you with the terminology.  Radiation wounds are not really burns, and they are not rated by degree. Medical professional who are trained in radiation usage will generally not use degrees to rate the wounds. Instead, they will use "grades" from the internationally accepted CTC (Common Toxicity Criteria) that is used by all major cancer research organizations (that is why it is call "common"). The reason you can't use degrees is that burns start at the top, and spread downward, and the "degree" of the burn has to do with how far through the skin thickness it caused damage. That isn't at all what happens with radiation- therefore the degree system isn't very useful.  With regard to some of the advice in this thread- all I can say it that it is well intended, but perhaps not exactly accurate. I do not, in any way, discourage patients from forming communities and sharing information- but sadly that information is sometimes not accurate. Although we can't stop people from passing around bad information, we (physicians) can minimize that aspect of cancer care by slowly and patiently explaining what we are doing to your body and why- and of course, what you should expect as side effects. As a Radiation Oncologist, my consults generally go well over an hour, with an additional 15 minutes once a week during therapy, and 20 minutes at each follow up. So, for even the most routine case (which are never routine to the patient) I will spend several hours over the course of three months sharing information, explaining, listening, and responding to concerns. I am not a saint- I am paid to do that. The problem is not that physicians are lazy or greedy (some are) but instead perhaps the problem is that physicians often do not understand that their job is more than the performing of the service- their job is also the teaching, comforting, and true healing of the patient. I do not think that the accurate and safe delivery of radiation is good enough- it is only a small part of the job, and if you aren't going to do the whole job, send the patient to someone who will. I don't think I apply radiation with any more skill than other doctors, but perhaps I spend a little more time helping my patients understand and prepare for what I am recommending. With that in mind, please allow me to share a little bit of general information about radiation wounds- although I cannot address your case specifically, having never examined you. There is zero build up of radiation in a patient from external beam radiation therapy (although there is from free isotope therapy or seed implantation- but those are very different). None. It does not happen. So you don't need to clear any residual radiation out, because there isn't any. I am not out to insult anyone, but to suggest that there is residual radiation following external beam radiotherapy is just plain incorrect. Radiation wounds are not "damaged" skin, per se, as much as they are "missing" skin- let me explain- radiation causes skin to fail to reproduce properly, and thus as you "use up" your normal skin, like we all do all day, there are no new layers of skin coming up from the bottom. So eventually the area can ulcerate. This might look like a thermal burn, but it has very little in common with a thermal burn, and the treatments for thermal burns will not help much. Let me be clear- many skin reactions don't need, nor will they find benefit from a 100 dollars worth of potions and lotions from the herbal medicine shop. You expect me to say that because I'm a doctor. Perhaps some will stop listening to me now because I don't think that a plant from the middle of the jungle ground up and slathered on your skin will fix the problem (why would it?). But, allow me to also say- most skin reactions don't need, nor will they benefit from 100 dollars worth of laboratory chemicals stuffed into a brand name prescription from the pharmacy. Neither approach will help heal the skin very much, and neither will prevent the damage in the first place. Do I believe in natural cures? You bet. Your body, in its natural amazing way, can regenerate skin without lotions or potions or pills most of the time. Very few radiation reactions need serious supportive care, most (not all) will just get better. Of course, there are some severe wounds that will require medical attention, but without an understanding of what is wrong, no one, be they MD, DO, ND or Shaman, can be expected to properly assist you. If your medical professional is using terms like "second degree" to describe a radiation wound then there is a good chance (although I can't say for sure) that they are not trained in any of the more than 100 years of science and knowledge that can help you in this situation. Now, keep in mind, I said herbal potions and laboratory chemicals won't heal the wound much faster- I didn't say they wouldn't sooth the area and ease your suffering while your body repaired the damage. That they are very good at. For a grade I skin reaction, a good non-alcohol containing aloe is about as good as anything that costs a hundred times of much, in my opinion. I would rather a patient use aloe, but there are also some lidocaine containing topical medications that are helpful if they insist. Colloidal silver (a very natural medication for the record, despite being sold at the pharmacy) can inhibit the growth of bacteria, although it may not cure an active infection. Infection in general is actually not that common in radiation wounds- but it can happen and should be treated when it does.  Rarely, radiation wounds do need more assertive supportive care. I'm truly very sorry that you had to experience such a situation. Keep in mind, you don't have to clear or remove dead skin from a radiation wound like you might from a thermal burn- at least not aggressively. The problem is missing skin, not damaged skin, or at least that is the more logical way to model the situation. Missing skin can't be healed with an herb, or a medication, and missing skin sure as heck can't be scrubbed at until it isn't missing anymore. Missing skin, for the most part, needs to wait until the body grows more skin. That can take 2-4 weeks for very mild reactions, to several months for serious radiation injuries. Make sure your medical professional has training and certification in these issues, keep in close contact with them, and ask them in no uncertain terms for a timeline that you can use in your healing expectations. Then, if your body does not respond on that timeline- ask them why, ask them if something is wrong, ask and then ask, and then ask some more, until your doctor explains what is going on with your body to your satisfaction. You have that right, and you also have that responsibility. Very few physicians, and far fewer patients, are qualified to give advice on radiation wounds. Find support and comfort on the internet- but find advice on the cause and cure for radiation damage to human tissues by consulting a board certified Radiation Oncologist- one that cares about your case, and takes the time to explain things to you. Roselvr Sat, 14 Apr 2012 00:00:00 GMT Johnny - What has to be understood is these are not "burns" as you would imagine them to be. What is happening to your skin is what is happening to the tumor - the radiation is breaking it down. Try different creams and lotions - feel what works. I've read from several forum members that simple aloe from the health food store worked well for them. If you use Aquaphor - which is probably the heaviest of the creams out there - use it at night so it doesn't bother you during the day. And don't under any circumstances apply these creams and lotions just prior to radiation treatment - skin must be clean and dry. When you shower, just pat the area dry. Don't rub and irritate. You can use cool compresses as well as the lotions to cut down on your discomfort. If the pain does get bothersome, the doc can prescribe a lotion with lidocaine in it to numb the area. My "burns" were nominal - slight redness and irritation, never got any worse. I used Gold Bond Ultimate Healing with Aloe. That worked for me. Your mileage may vary. Tougher weeks are coming up so concentrate on your nutrition. Give your body the tools it needs. Exercise - light exercise - is a good choice. Even if you just go out for a brief work. I wouln't suggest throwing around any heavy iron in the gym! Take it a day at a time, stay flexible, and adapt. Onward! - Jeff ErthWlkr Sat, 14 Apr 2012 00:00:00 GMT Pop-Pop and Rosel - Thanks for the advice on the creams.  I'll give each a try.  I did notice that Noxema takes the red away a good bit, just like it does for sunburn.  Wife and kids say it smells like summer at the shore!  But it's not a good moisturizer. JohnnyO Sat, 14 Apr 2012 00:00:00 GMT Hey Roselv - Well, if I have hearing loss, it's hardly noticeable; but if I do have it, I don't want it to get worse with future treatments (which I'm sure it would).  My first treatment was 100 mg/L, as well. Water tastes a little sweet more than salty.  I'm preferring Gatorade which also contributes to my calorie intake. I can see where this whole process can be mentally debiltating.  As I think I've mentioned before, I deal with the enormity and gravity of the situation by ignoring it and trying to proceed with life as normally as possible not only for myself but for my family, as well.  Weekends are a source of mental healing for me, so far anyway.  Flew kites last week, and am going bike riding this weekend.  Nurses told me that the best way to fight fatigue is to exercise, so off I go to exercise. JohnnyO Sat, 14 Apr 2012 00:00:00 GMT On Apr 14, 2012 2:35 PM PopPop wrote: John, Just a quick note on the Eucerin cream. When I was going thru my radiation treatments, the Nurses suggested that I use " Keri" lotion. To be honest with you, the Eucerin cream is much thicker and I use it strickly for chapped hands during the winter. The "Keri" lotion, I still use on occassion when my neck feels a bit tight. It is a thinner lotion and I used it several times a day during treatments. Give it a try, I had no blisters during treatments and the final results seemed as if I had a bit too much sun. My Best to You and Everyone HereRite Aid has a tub of Vitamin E cream that works really good. It's Rite Aid brand in a white tub.  Been using it on my hands. Roselvr Sat, 14 Apr 2012 00:00:00 GMT John, Just a quick note on the Eucerin cream. When I was going thru my radiation treatments, the Nurses suggested that I use " Keri" lotion. To be honest with you, the Eucerin cream is much thicker and I use it strickly for chapped hands during the winter. The "Keri" lotion, I still use on occassion when my neck feels a bit tight. It is a thinner lotion and I used it several times a day during treatments. Give it a try, I had no blisters during treatments and the final results seemed as if I had a bit too much sun. My Best to You and Everyone Here PopPop Sat, 14 Apr 2012 00:00:00 GMT John; don't stress about the chemo. Hub was given 100 for 1st dose but it didn't agree with him (he has discoid lupus an autoimmune) so they cut it down to 75 for 2nd & 3rd. I assumed they would give a 4th to make up for it & they said no; they don't do that. I will be surprised if you do not have hearing loss because hub does. They checked the hearing before & after. He used to say the same thing about cardboard food. Was water tasting salty to you? Thanks for updating. I give you credit for being on the computer; hub didn't touch his once treatment started Roselvr Sat, 14 Apr 2012 00:00:00 GMT Hey everyone - Quick update for those of you are following my trek through chemo and rads.  I had my first cispatin two weeks ago and had my 12th rad treatment yesterday.  That's over 1/3 of the radiation treatments done, and my spirits are good, and my side effects are minimal as of today. I had some major ear ringing from the Ciplatin (which has since subsided) and was worried about hearing loss; am scheduled for an audiology appointment to compare with the baseline study to make sure that hasn't happened (I don't notice it if it has).  If there is eveidence of damage, I'll likely be offered to drop to more treatments at a lower dose.  Concerned what that might mean from an efficacy perspective.  Anyone? Throat is just now starting to hurt, but eating is still pretty easy.  Yesterday I had a cardboard omelette for breakfast, a cardboard Whopper with Cheese with cardboard fries for lunch, and a cardboard steak with cardboard potatoes for dinner.  Actually, I do have some taste left.  I had been eating bread with my meals to help add on pounds, but I think the bread sucked away the saliva and, with it, the taste of the food. I hate the Eucerin cream on my neck, but it's better than the Aqauphor they say I'll need later.  Next week is by all accounts the first week of torture.  Wish me luck, and I will be back to whine as I feel sorry for myself; and I hope you will be there with your booted feet to kick me you-know- where. Hang tough, those of you just starting out.  And to all of you caregivers and survivors, I wish you all the best and many more years of life!  Peace. JohnnyO Sat, 14 Apr 2012 00:00:00 GMT My calendar was digital back then; I used to sync my cell to Google calendar so I have a pretty good "journal". Wednesday, November 4, 2009- chemo/rads start. Monday November 9- Day 4 of radiation- IV needed Tuesday, November 10- Day 5 rads & wedding anniversary- I don't remember him being that talkative. His son was around that week & by Friday 13th; which was rads day 8; his son was cutting jokes about his sore throat. I know his thrush started but was not that bad. We had an early Thanksgiving Sunday, November 15; (8 rads by then) because we knew that once the thrush started; he wouldn't be eating much. While he did socialize with our guests; he wasn't using his normal voice & by the time they left; he had too long of a day. I'm pretty sure this is the last time he ate a meal. November 18 (rads 11) he could barely swallow. He had IV's on rads 10 & 13 (a Friday); & by the next day he was pretty shot; did not take any phone calls because his throat was really sore & the next day he passed out & was even worst the next day so he was admitted for 4 days due to the thrush. Everyone is different with how they handle pain & everything else. My hub is usually a strong guy but was on Ativan & pain meds pretty much from the start of treatment. Roselvr Wed, 04 Apr 2012 00:00:00 GMT JohnnyO, I can't add much to what has already been stated in the last few replies other then this... My voice slowly disappeared until it was a whisper at the end of radiation treatments. My wife answered all phone calls except when she was at work checking up on me, I would answer her calls. I have been told by many people that know me that I sound just like I did before all this happened. I think the first time I heard those words, I was roughly 1 year out of treatment. It does take some time for our throat and mouth to heal. My Best to You and Everyone Here PopPop Wed, 04 Apr 2012 00:00:00 GMT And that should be "shouldn't even be thinking about recurrence at this point." Stay on the road...that's the only way to you get to where you want to go... :) - Jeff ErthWlkr Tue, 03 Apr 2012 00:00:00 GMT Johnny - First, you should even be thinking about recurrence at this point. Your goal right is to eradicate the disease process you have now and get yourself thru recovery. Depression can be an issue - let's face it, you've been faced with an incredibly serious diagnosis, gone thru several surgeries, and now having to endure some pretty abusive chemo and radiation treatments. Honestly - it all just sucks. Right now. Doesn't mean once you're thru this round of treatment, and worked patiently and diligently thru recovery, that you won't get better. Because you will. As far as the mask goes, if it feels loose, you definitely should mention it to both the techs and the doc. The techs first since they see you every day and will most likely respond most quickly to your impression. They'll also most likely communicate the issue to the doc. Position of your head is highly critical since that will determine the focus of the radiation, hit the target more accurately, and keep the healthy tissue as much out of the path as possible. Voice - I lost mine for about 2 weeks. My throat began getting sore about 3 weeks in and lost my ability to get whole food down about then. Sips of water by then and until more than a month after treatment ended. Relied entirely on my PEG tube. Voice did return although it was a bit uncomfortable to talk. Heck - no one liked my opinions anyway so it gave them all a break. :) The experience is quite daunting and frustrating. Remain as positive as you can, as flexible as you can, and do your best to adapt to the changes. Ask for the help you need from the techs, docs, family and friends. No need to go it alone - and actually, some people will actually feel a whole lot more useful if you put their talents to work. Everybody wins. Take your time - some call this a marathon, not a sprint. You've never been this sick for this long a period of time. But you will get better. You gotta have faith in that. Stay in touch, take care of yourself, continue to come back here for some conversation and guidance. We're all more than willing to help you. - Jeff ErthWlkr Tue, 03 Apr 2012 00:00:00 GMT JohnnyO, I'm sure the techs have checked your mask, especially after your concerns.  I remember that for the first week I could not open my left eye with mine on, but after that there was no problem.  It gradually got a bit looser, probably because of the weight I was losing, but it wasn't a problem. I wouldn't worry too much about your voice.  I never lost mine.  For most people it comes back, although often not quite the same.  My RO has treated two singers, and both of their voices changed quite a bit.  He said the soprano was crushed, but the country-and-western guy decided he kinda liked the raspiness, and kept on singing! At 14 months out of radiation (I had no chemo), my voice looks to be permanently altered, but not by much.  I can no longer rely on it to carry a tune correctly, but I was never all that good at singing anyway.  I think it's quieter, too, because people seem to have more trouble hearing me.  They're all getting older, though; could be that they're deaf instead! Best of luck to you with your continuing treatment.  It's not pleasant, but just keep your eye on the prize--that last treatment date! Susan Sdurnell Tue, 03 Apr 2012 00:00:00 GMT On Apr 03, 2012 2:47 PM JohnnyO wrote: My saga continues with rads and chemo. I spoke with my doc because my mask does not feel as tight during treatments as it did during the set-up; I'm worried that I'm in a slightly different position each time.  He didn't seem concerned, but I'm a little worried because today my voice is getting weak, and I'm worried that I'm getting rads to my voicebox, which my doc said he was intentionally trying to avoid. I don't want to mess up my voice permanently; if it's a normal treatment side-effect and it comes back, that's fine, of course.  Thoughts?  Experiences?  Thanks! Broken - Thanks for your message.  I echo your sentiments about everyone posting to help me out here.  What an incredible support group!John; my hub just happens to be home; so I asked him; he said the mask should not be that tight. Also; he will refit you in a few weeks to make sure your face has not lost weight. My hub said to stop worrying; the rads are aimed at a specific place; he thinks the mask was also marked where the rads hit but can't remember. The next time you go for rads; ask the tech to explain it to you. I don't know the techs there but the ones hub had were awesome with answering any questions we had. I still email both of them 2 years later & if you want me to ask them; I will becuse they know & know how "he" works. You're throat is going to hurt & your voice is going to be weak. My hub didn't speak much; even from the beginning. Would you like to meet my hub? He finished treatments 12/24/09; if you saw pics of him during & pics of him now; you would not believe he even had cancer. He takes no saliva pills. Going to answer your message. Roselvr Tue, 03 Apr 2012 00:00:00 GMT My saga continues with rads and chemo. I spoke with my doc because my mask does not feel as tight during treatments as it did during the set-up; I'm worried that I'm in a slightly different position each time.  He didn't seem concerned, but I'm a little worried because today my voice is getting weak, and I'm worried that I'm getting rads to my voicebox, which my doc said he was intentionally trying to avoid. I don't want to mess up my voice permanently; if it's a normal treatment side-effect and it comes back, that's fine, of course.  Thoughts?  Experiences?  Thanks! Broken - Thanks for your message.  I echo your sentiments about everyone posting to help me out here.  What an incredible support group! JohnnyO Tue, 03 Apr 2012 00:00:00 GMT JohnnyO, Thank God for our dedicated warriors & caregivers on this site.  You are surely in the best of company when posting with the likes of our:  PopPop, ErthWalkr, Roselvr, GoldDustWoman & all the others here.  If only you had known our dear OUDave!  As they ralley to our time of need, they as well as your families love & care will get you through this. Don't ever give up.  Not for one little old second. Yes, they will even be there to give you that kick in the a_ _ if that's what you need to get on track & motivated.  :) Stay on track - there are better days ahead. Broken    Broken Mon, 02 Apr 2012 00:00:00 GMT John; Walmart has a large container of the weight lifting protein shakes; you can blend that with ice cream & peanut butter. Throw some Karo in for calories. As you know; keep up on the pain meds; if they're not helping; ask for the Actiq pops. It's the only thing that helped the actual sore throat for hub. Are you seeing Dr Ahn? If so; he's very good & compassionate. Have they given you ativan for radiation? What we did was got out 8 bottled waters per day & left them for him to drink. Room temp worked best for him. The other thing is to watch out for the white dots- thrush. I'm glad they're waiting on the peg. While we were told about the swallow muscles; they didn't stress it enough like this message board does. It's amazing how fast they deteriorate. I swear the room temp water saved my hub. Roselvr Sun, 01 Apr 2012 00:00:00 GMT John, I didn't have a PEG either, but was wondering how wise that was about the middle of week 3. Your docs are quite right; some folks become too dependent on the PEG, and must learn how to eat and swallow again afterward. That can take a long time; many months and well over a year for some folks. I believe my docs had similar thoughts regarding PEG dependence, and if there was a good probability someone would be able to tough it out without a PEG, they wouldn't put one in beforehand. That was the exception though, not the norm.Your taste buds are going to go on an extended holiday trip to who knows where, but it won't be wherever you happen to be, some time around week 4 or so. They will return, but it will be several months after the rads. In the meantime, some foods will taste like crap, quite literally. You have four components to taste: sweet, salty, sour and bitter. Seems to vary some as to who loses most of which, but it most certainly shifts how everything tastes. Be prepared to adjust things to stuff that tastes tolerable. Start experimenting now with stuff that slides down easily, such as pudding, jello, smoothies, yogurts, scrambled eggs (not too dry), cottage cheese, macaroni and cheese, hearty soups, etc. You will wake up one morning and find eating any kind of bread or meat (including poultry or fish) almost impossible -- it will be too dry and too scratchy to get down your throat. I added canned chunks of chicken and ham to thick/hearty soups that had some chicken or ham and the soup helped get the small chunks of meat down. Added canned clams to clam chowders. Added fruit to the smoothies in the blender (bananas are great if you like them). Purpose of adding meat chunks was increasing the protein intake the body craves to repair rad damage. I could eat. In addition to clam chowder I also liked the thick and heavy chicken and dumplings. You can also use butter/margarine and maple syrup (I recommend the *real* stuff, not the fake) to help some things slide down easier, including pancakes (waffles and french toast didn't go down nearly as easily). For me, the taste of sweet stuff became intolerable and I had to drop things like pudding, jello, smoothies and pancakes slathered with syrup off the menu. When your throat gets raw, watch the ingredients in things. Tomatos and tomato products are rich in malic acid. That and any significant amount of citric acid can irritate your throat when it's rad burned. Watch sugar and salt content of everything, especially the soups which tend to be high in salt content. I had no other dietary limitations, but some folks must accommodate diabetes (or a low sugar tolerance precursor to Type II), and blood pressure or heart issues that require limiting salt intake. Keep diet as balanced as you can with plenty of protein. You can ultimately resort to "Will It Osterize" experiments if you need to. Found many things still tasted the same provided I didn't look at it after it had been frappeed in the Osterizer. It was something I avoided though as it added significant time to food preparation. In addition I started drinking Boost and Glucerna about the beginning of week 3, to supplement regular food as eating was becoming much more arduous, taking well over an hour at times just to get everything down that I needed to eat. Ensure is OK for some folks, but I had a problem with the stuff, albeit that was more mental. We ultimately fed my father Ensure during his last couple months before he died (early 1980's) and I couldn't get past the name on the label. There are different flavors to keep you from burning out on the same stuff day after day. I would make what I needed to eat for that meal and would keep at it until the plate was clean and if something became intolerable I'd find an equal substitute I could still get down. John jalind Sat, 31 Mar 2012 00:00:00 GMT I've been following this from the sidelines, John - you've been getting some great guidance and support. No need for me to add to the noise. But wanted to express my support now - and don't hesitate to depend on this community. As someone here said, this isn't going to be a sprint to the finish line but a marathon - so you'll need to pace yourself. You'll be in recovery soon enough and that's where your patience might wear thin. But we'll be here for you for some guidance. As far as peanut butter and margarine sandwiches - I don't think peanut butter is going to fit the profile for a while. Your salivary glands are going to take a hit so you're going to be looking for "soupy" stuff - definitely not anything sticky. Be inventive, be adaptive, stay flexible - and stay with us! Onward we all go! - Jeff ErthWlkr Sat, 31 Mar 2012 00:00:00 GMT Pop-Pop and John - Thanks for confirming about all the good times ahead, LOL!  Cardboard and metal sounds great!  Fortunately, I've managed to put on 10 pounds over the last few weeks; I'm getting good at forcing myself to eat, even today with the nausea I'm having from the chemo.  Interestingly, eating helps the nausea. This hospital is all about no PEG tubes; I figured it was a liability issue with the infection risk, but they claim it's about keeping the swallowing muscles working so you don't get hooked on the PEG.  Well, I was enjoying the oxycodone after the surgeries (a little too much, heh, heh), so if I must use the oxycodone, I must! Anyone ever hear of using peanut butter and margarine sandwiches for weight maintenance?  A friend with a tonsilectomy recommended that.  I'm counting on getting Ensures down as a last resort. Only two chemos to go; that's one third down!  And 2 down, 28 to go of rads (with the effing MASK!).  Bring it on!  I'll be back here complaining.  Hope you guys are around to kick me in the ass and talk me down from the ledge.  Thanks! JohnnyO Sat, 31 Mar 2012 00:00:00 GMT BTW John . . . The "Attitude is Everything" is the final line from the Lance Armstrong Foundation (LiveSTRONG) motto: Unity is StrengthKnowledge is PowerAttitude is Everything John jalind Sat, 31 Mar 2012 00:00:00 GMT John, Just keep getting one foot in front of the other and keep in mind you're in a long marathon, not a sprint.  The combination of chemo and the rads *will* kick you in the ass in 2-3 weeks and it's going to kick hard. I am a little surprised they didn't put in a PEG before you started, just in case. Some oncologists *won't* do it during treatment unless situation gets life threatening from starvation. Others are much more willing to do it . . . while it's still a surgery, it's quite routine and not that invasive. Your calorie intake will need to rise about 40-50% from the baseline needed to maintain current weight prior to starting the rads. They should hook you up with dietitian in a week or two if they haven't done so already as maintaining whatever weight you're currently at is important. You don't want this to be a weight loss program as your body will pull what it needs from all the wrong places. My oncology center waits for a couple weeks as they've discovered too many patients won't listen until they're in need, and even then there are those that still won't listen . . . expecting yet another magical pill to take (it don't work that way). Best WishesJohnP.S.Don't ya just LOVE that mask? ;-) jalind Sat, 31 Mar 2012 00:00:00 GMT John, Thank you for the update, I've been wondering how you have been doing. Yes, the radiation and Chemo are accumlative and will wear you down slowly. Next week, more then likely, you will lose your taste and everything will taste like cardboard and the fluids like aluminum cans, push thru that though. Calories and nutrition are your best friends now. Baking Soda and Salt solution used as a rinse and gargle will help take the edge off of the discomfort in your mouth and throat as the weeks go on. Pain management is a most, stay ahead of it if at all possible. Lastly, you can and will get thru this, the proof is all the people here that are on the board. We have been there and will be here if you need us. My Best to You and Everyone Here PopPop Sat, 31 Mar 2012 00:00:00 GMT Hello all - As you might or might not know, I've had three surgeries since early February: robotic surgery to remove tongue mass, neck dissection to remove lymph nodes, and rectal surgery to remove a (benign!) rectal mass.  As of 2 days ago, I felt about 99% recovered from all three, and have been back to functioning normally for weeks. So 2 days ago I had my first of three chemos and have had my first two radiation treatments.  The mask, the mask, the mask.  If you're a newbie, go to youtube and find the video on head/neck radiation: you have to wear a tightly fitting mask to keep your head immobilized during treatment, and if you've not seen the process beforehand, I imagine it could seem pretty scary.  For me, the set-up process was the worst because it takes so darn long.  The treatments themselves are fast. So, the chemo and associated antinausea drugs are beating me up already:  feel like I have a hangover.  I'm a little depressed as I was feeling so damn good and now I'm back into the ring to get myself pummeled again.  Not looking forward to the sore throat that they promise me I will get; and all the docs have said that they encourage eating throughout the treatment: no stomach tube.  I suppose this all will come on slowly and get increasingly worse over the 6 weeks of treatment.  As you veterans heere know, the thought of going through all of this and then suffering a recurrence is daunting.  But I can't go there right now; gotta get through it, because preventing recurrence is the whole point.  Please keep me in your thoughts and prayers, friends, and I hope you're all doing well. Newbies, feel free to send me a private post and I can fill you in on some details, if you'd like. JohnnyO Sat, 31 Mar 2012 00:00:00 GMT I am a stage 4 base of tongue...2 lymph nodes both sides of neck affected ,survivor. I have my 5 year check up April 3. So you see all is not lost, take it a day at a time and believe! Mary53 Sat, 17 Mar 2012 00:00:00 GMT I wasn't sure; my hubs was 5 hours I think; they did the right tonsil; lymph nodes; then the feeding tube which went in through the mouth. Hub also had constipation issues. I wish we would have consulted a gastro in the beginning; because a general surgeon did the feeding tube; the gastro told him to use Miralax. We were told Senna liquid; the gastro said senna isn't good to use long term. Your kids are probably keeping you going right now. We were supposed to have our grand daughter come up from SC for Christmas that year (treatment was Nov to 12/24/09) & the mother wouldn't let my step son take her to see him; he was upset because he was looking forward to it since we hadn't seen her in 3 years at that point. He ended up getting depressed & our old neighbors came up from TN 2/14 & it knocked his depression out. It was like the sun came out. If your wife ever needs someone to talk to; I've been there. It's not easy watching someone you love go through this. Roselvr Sat, 17 Mar 2012 00:00:00 GMT The tongue was done robotically through my mouth; no external incision required.  Removal of the lymph nodes was done via an external incision on the left side of my neck.  I suppose both could have been done at the same time, in theory, but each was a 2+hour operation, and each required a different positioning of my head/neck, so I think the idea was to let me heal from the first one before moving on to the second.  That, and I think that the pathology of the first impacted the extent of the surgery required for the second. My prob with pain meds was constipation: and they underdosed me for stool softener and I had an impaction issue that was probably the worst of everything that I went through. All done in Philly at same institution.  Nursing staffs are hit or miss everywhere, I think, but given the choice of better docs or better nurses, I'll take the docs.  Hospital stays are short; surgery results last a lifetime. Family is holding up well, thanks for asking.  Wife has ups and downs, but that's to be expected.  Kids are somewhat oblivious; they know that I have cancer, that I am being treated to cure it, and that I should be just fine after the treatments are all over.  And, since I've been very engaged with them even at my lowest moments, their lives are rolling along pretty much normally. JohnnyO Sun, 11 Mar 2012 00:00:00 GMT Is there a reason they didn't do the neck at the same time as the tongue? It stinks that you were recovering from one surgery & on to the next. Thankfully that's all behind you. I hope they gave you decent pain meds. My hub had issues with the IV morphine. I assume it was all done at P.U.? Are you happy with them so far? I know that some times the surgeons are awesome but the hospital is lacking. One issue hub had was one nurse wore a lot of perfume on the H&N floor. How is your family holding up? Roselvr Sun, 11 Mar 2012 00:00:00 GMT Gotta tell ya, jalind, I was on the verge of a breakdown after this last surgery.  Man, the thought of going under the knife for the removal of my rectum, and figuring out how to work that in with the treatments for my tongue cancer was a challenge to say the least. As far as attitude goes, when you're a young guy with kids, there's really no choice in what you're going to do.  My approach is to find out what my best odds for survival are and take things on one day at a time.  The "normal" days in between surgeries and treatments are incredible mental strength builders, because it reminds you of where you ultimately want to be: through to the end, back to a new normal with no more treatments (hopefully) required. Thanks for the vote of confidence!  John  JohnnyO Sun, 11 Mar 2012 00:00:00 GMT Recovery from robotic surgery was a snap.  Surgery on a Friday, home on Monday.  Worst part was having a breathing tube in my throat from Saturday to Monday; couldn't talk and it was uncomfortable.  Came home with a feeding tube in my nose for 5 days, but it was actually a relief of sorts since eating and taking meds by mouth wasn't very comfortable (but I was doing some of that as a matter of rehab). 10 days after the surgery I was feeling great (eating regular food again!) just in time to have the left side of my neck cut open to remove the lymph nodes.  Surgery on Monday, home on Tuesday.  Worst part was waking up from surgery without pain meds.  One week of drainage tubes hanging out of my neck which had to be cleared once or twice a day, which was pretty uncomfortable to do, but nothing from a pain perspective was crazy outrageous. A few weeks thereafter came the rectal surgery.  This was done through the anus using a mini-camera-guided laser device.  Literally a pain in the ass when I came out; went home the next day walking slowly.  Three days out, doin' fine. Having never had any kind of medical procedure before, I was kind of surprised how (relatively) easy it all was.  For me, putting in the IV tube is the worst part; after that, you're asleep.  Then you wake up, and you just deal with the demons, knowing that your body is healing and every day is going to get better.  Pain meds are your friend, as is a good support group to keep your meds organized and keep your spirits up. Thanks for your kind words.  John   JohnnyO Sun, 11 Mar 2012 00:00:00 GMT On Mar 10, 2012 7:46 PM JohnnyO wrote: Hi friends - Juat had my third surgery in 5 weeks, this latest one for the removal of what appeared to be a malignant rectal mass.  Miracle of miracles, despite its size and despite how the mass grew deep into the rectal tissue, the pathoogy report came back negative for cancer. Huge news for me; one less cancer to battle, one less surgery to endure.  Gotta tell ya, the thought of another surgery and another cancer was almost too much for me to endure.  I think God figured that out and had mercy on me. Thanks, as always, for you continued prayers as I move on to chemo/radiation.  So far, so good on that front:  no teeth need to be pulled!  Next week will likely be the set-up for radiation, including fitting for the mask.  Progress and perhaps a tiny glimpse of a light at the end of the tunnel. Peace and love to all - JohnnyOw00t w00t w00t! That's great news Johnny. Keep getting one foot in front of the other, looking forward, and celebrating life. "Attitude is everything" and you've got that down solid. jalind Sun, 11 Mar 2012 00:00:00 GMT On Mar 10, 2012 7:46 PM JohnnyO wrote: Hi friends - Juat had my third surgery in 5 weeks, this latest one for the removal of what appeared to be a malignant rectal mass.  Miracle of miracles, despite its size and despite how the mass grew deep into the rectal tissue, the pathoogy report came back negative for cancer. Huge news for me; one less cancer to battle, one less surgery to endure.  Gotta tell ya, the thought of another surgery and another cancer was almost too much for me to endure.  I think God figured that out and had mercy on me. Thanks, as always, for you continued prayers as I move on to chemo/radiation.  So far, so good on that front:  no teeth need to be pulled!  Next week will likely be the set-up for radiation, including fitting for the mask.  Progress and perhaps a tiny glimpse of a light at the end of the tunnel. Peace and love to all - JohnnyOVERY happy to hear this news! How was the recovery from robotic surgery? Roselvr Sat, 10 Mar 2012 00:00:00 GMT Hi friends - Juat had my third surgery in 5 weeks, this latest one for the removal of what appeared to be a malignant rectal mass.  Miracle of miracles, despite its size and despite how the mass grew deep into the rectal tissue, the pathoogy report came back negative for cancer. Huge news for me; one less cancer to battle, one less surgery to endure.  Gotta tell ya, the thought of another surgery and another cancer was almost too much for me to endure.  I think God figured that out and had mercy on me. Thanks, as always, for you continued prayers as I move on to chemo/radiation.  So far, so good on that front:  no teeth need to be pulled!  Next week will likely be the set-up for radiation, including fitting for the mask.  Progress and perhaps a tiny glimpse of a light at the end of the tunnel. Peace and love to all - JohnnyO JohnnyO Sat, 10 Mar 2012 00:00:00 GMT John! There you are ~ I must have missed your earlier posts.  I've been wondering how you are since your surgery.  I hope all is well ~ and no worries, you aren't leaving your wife and kids behind without you.  You're young, you're strong, and you've got all the right things going for you with this treatment.  I'm going to be away for a bit but I'll be thinking of you and wishing you wellness, healing and most of all, peace. Much love ~ GDW GoldDustWoman Wed, 29 Feb 2012 00:00:00 GMT Hi CliffsCase -  Thanks for your message.  The lack of clarity in the road ahead is what knocks the wind out of me every now and again.  As I have young kids, your 17-year survival since your diagnosis with young kids is an inspiration and brings tears to my eyes.  Nothing hurts me more about this than the pain of the thought of leaving my kids and wife behind.  I am taking on this fight, and so far, so good.  Sometimes I lose it mentally as I anticipate the worst-case scenarios.  But I get myself back on track - one day at a time - and intend to walk my three daughters down the aisle at their weddings, no matter how late they wait to get married, LOL. Thanks for your post, and congrats on your survival! JohnnyO Tue, 28 Feb 2012 00:00:00 GMT Dear sir, I am here to tell you that you have an unclear road ahead of you.  I had a mass show up in my throat 17 years ago, cancer, spotted it while brushing my teeth.  Having just lost my father to cancer, I felt as though all the wind had just been pulled from my sails.  I had 2 young children at that time and was scared to death that I was about to close the chapter on "daddy".  I have never felt so low in my life.  I started turning around after my first visit to my oncologist.  I knew then that the greatest chance of beating this was to rise up and be as strong as possible.  I made my family aware at a famly meeting in the living room where my wife stated, " If you die and leave me alone to raise these 2 children, I will kill you."  We all laughed and I feel that her statement helped to mold the kids into the right attitude needed to help me combat this intrusion.  Your attitude and demeanor need to be very strong, your heart will follow and you will beat this as the rest of us had.  The best of luck and God's blessings to you and your family. Cliffscase Mon, 27 Feb 2012 00:00:00 GMT WoW! I am so impressed by how well you are doing so quickly after treatments!  You have an angel on your shoulder, that's clear!  You remain in my prayers.. Sunni nwwoman Wed, 15 Feb 2012 00:00:00 GMT Hi All - Back home today from having the left neck dissection and removal of lymph nodes.  Feeling great: those pain meds are just the ticket! So much more to come; so many more questions on the horizon.  Will post more later. JohnnyO JohnnyO Wed, 15 Feb 2012 00:00:00 GMT On Feb 11, 2012 10:37 PM JohnnyO wrote: Hi everyone - Thanks for all the kind words upon my return home! Boy, the pain kicked in after I last posted, and like an idiot I decided to fight it instead of dose up on the pain killers (I generally don't like to take medicine).  I finally gave in the day before yesterday, when I took my first full dose of oxycodone.  I've since compromised with Tylenol w/codeine (so I can be somewhat productive) during the day and evening, and I save the oxycodone so I can sleep at night. Just as I'm starting to feel somewhat normal, Monday morning they are going to do the left side neck dissection and pull out who knows how many lymph nodes.  They tell me recovery for that one shouldn't be as bad as this one; supposedly going home after one night in the hospital. I'm in a strange mental zone where I'm taking things one day at a time; sometimes forget that I have cancer, and am focussing on getting through treatments, recovery, and keeping things as normal as possible on the home front.  I even managed to help my two eldest daughters prepare for their math tests this week!  Once in a while I break into a cold sweat as I remember that this isn't just appendix surgery, but on the whole, I'm hanging tough, inspired and encouraged by the many who have posted here. Quick story about the 1st surgery:  Before the surgery, the anesthesiologist erroneously told me that my trach tube would be removed before I woke up from surgery.  In fact, it was to remain in place 48-hours post-surgery, and I was to have been sedated for the duration.  Turns out that they were unable to keep me sedated, and after 24 hours I woke up alone in the ICU wondering why I still had the tube in place and not knowing how the surgery had gone.  At 6am, I had the nurse call my wife who told me that she loved me and that she would be coming in to "talk to me" that afternoon.  So, as usual, I'm thinking "I'm dying," and "my wife is going to fill me in on how poorly the surgery went as soon as she can muster up the strength to come and speak with me." Long story short, my wife thought I knew how the surgery had gone because she apparently told me as I was waking up in recovery just after the surgery (before they put me out again).  I, of course, had no recollection of that.  I ended up getting the whole story from my wife a few hours later after I woke up in the ICU after I had come to grips with what I was sure was my imminent death and had the nurse call my wife again so that I could console her.  Those were some pretty depressing hours there. Love to everyone - JohnnyOHi John ~ So good to hear from you!  Wow your story about the surgery just reminds us all of what a difficult road this cancer thing is - not just physically but emotionally too.  Once it's behind you, you'll tend to forget that part - at least we have.  But it is a roller coaster of fear, that is for sure.  Keep those positive thoughts in your mind as best you can - they are critical to your healing and quick recovery.  Easier said than done I know.  If you find you're struggling with keeping those scary and negative thoughts out of your head let us know - we're here to help with that!  :)  Every day before treatment - for 35 days - my husband listened to a 2 song playlist I made for him and read accompanying positive thoughts I wrote to go with it.  He says it was the only thing that didn't let that fear take over.  I am so thankful that I was able to help him that way - but it's interesting because the entire time I thought I was more filled with fear than he was!  And not necessarily just fear of his death, but fear of everything in between - the treatment, his pain level, his emotional well-being - just fear of him having to even go through the treatment and recovery.   Now on to the meds. Whoa does that sound familiar!!   My husband wouldn't take his oxycodone either and he got totally yelled at by his oncologist.  The truth is he really didn't need it until about the last week of radiation when he still insisted on using Tylenol only.  Well, his doctor didn't prescribe the liquid Tylenol, he prescribed the oxycodone and then Mark wouldn't use it.  But our doctor told us how important managing the pain is to the healing process - just like everyone has so wisely shared here.  I don't like to take meds either - I totally understand - but I am glad to hear that you are.  And if you need the oxycodone for a few days after the next surgery go for it - it's important to be as comfortable as you can.  And it helps keep those positive thoughts coming!  :)  Take care of yourself ~ you remain in my prayers ~ and remember you'll be back on your feet and feeling better soon. Much love ~ GDW GoldDustWoman Sun, 12 Feb 2012 00:00:00 GMT On Feb 12, 2012 2:35 PM crayfish wrote: Hey JohnnyO- I still can't believe that you're well enough to write us. That's so great. Yes, you will probably have some dark hours in there no matter how well things are going. I think that comes with any surgery though. If it gets to laying on you and/or your wife too much be sure and tell your doctor. Myself, as caregiver, had a few panic eoisodes sneak in down the road.  Try to get the pain meds in before you feel any pain. Take serious heed to the possible constipation side effects of these. You don't even want to deal with that. Mike took the little stool softening pills he was prescribed along with the pain meds but they did nothing and he got into trouble. The mix-with water drink was the answer. But he had to drink it.... Hopefully, this won't be an issue. Every body's different. Just sayin'. Will put you in my prayers tomorrow - Cray  Hubs gastro said to keep up on using MiraLAX; also keep some Senna liquid in the house. Our GI Dr told us not to use the senna that often; that MiraLAX was the best to use. Roselvr Sun, 12 Feb 2012 00:00:00 GMT Hey JohnnyO- I still can't believe that you're well enough to write us. That's so great. Yes, you will probably have some dark hours in there no matter how well things are going. I think that comes with any surgery though. If it gets to laying on you and/or your wife too much be sure and tell your doctor. Myself, as caregiver, had a few panic eoisodes sneak in down the road.  Try to get the pain meds in before you feel any pain. Take serious heed to the possible constipation side effects of these. You don't even want to deal with that. Mike took the little stool softening pills he was prescribed along with the pain meds but they did nothing and he got into trouble. The mix-with water drink was the answer. But he had to drink it.... Hopefully, this won't be an issue. Every body's different. Just sayin'. Will put you in my prayers tomorrow - Cray   crayfish Sun, 12 Feb 2012 00:00:00 GMT I agree! Stay in front of the pain. Fighting it can inhibit recovering as fast as you might otherwise. You won't get the rest you need and your body's emotional and physical energy is diverted to the pain with all the increased stress. Same observation: once the pain gets in front of you, it's hard to overtake it again with meds (been there, done that, suffered needlessly for it). I was on hydrocodone for about 5-7 days post-surgery, discussed stopping it with my surgeon before doing so, and then tapered down the dosage over several days. Best wishes for success with round 2 and speedy recovery from both John jalind Sun, 12 Feb 2012 00:00:00 GMT Hi Roselvr - You are so right about not wanting to fall behind on the pain meds.  I'm being smart about it now.  I have liquid, so it's more a matter of not wanting to be drugged-out than it is about being able swallow it or not.  But it's better to be a little hazy than it is to be in the ER, fer sure. JohnnyO Sun, 12 Feb 2012 00:00:00 GMT John; glad to see you checked in; was wondering how you were doing. Fighting the pain killers is not a good idea. Once the pain gets bad; you can't catch up on meds without going to the ER to get an IV of pain meds. I learned that with my daughter when she had her tonsils out; so when hub had his surgery; we made sure he had a steady amount of perc in him the 1st few days. If you don't want to take a whole pill; you can cut it in 1/2 & you should take it in the morning & night. I'm pretty sure hub also did a mid-day one at 1st. Did they give liquid or pills? I don't khnow why they don't give a few Actiq pops in the beginning because those were the best for pain. Roselvr Sat, 11 Feb 2012 00:00:00 GMT Hi everyone - Thanks for all the kind words upon my return home! Boy, the pain kicked in after I last posted, and like an idiot I decided to fight it instead of dose up on the pain killers (I generally don't like to take medicine).  I finally gave in the day before yesterday, when I took my first full dose of oxycodone.  I've since compromised with Tylenol w/codeine (so I can be somewhat productive) during the day and evening, and I save the oxycodone so I can sleep at night. Just as I'm starting to feel somewhat normal, Monday morning they are going to do the left side neck dissection and pull out who knows how many lymph nodes.  They tell me recovery for that one shouldn't be as bad as this one; supposedly going home after one night in the hospital. I'm in a strange mental zone where I'm taking things one day at a time; sometimes forget that I have cancer, and am focussing on getting through treatments, recovery, and keeping things as normal as possible on the home front.  I even managed to help my two eldest daughters prepare for their math tests this week!  Once in a while I break into a cold sweat as I remember that this isn't just appendix surgery, but on the whole, I'm hanging tough, inspired and encouraged by the many who have posted here. Quick story about the 1st surgery:  Before the surgery, the anesthesiologist erroneously told me that my trach tube would be removed before I woke up from surgery.  In fact, it was to remain in place 48-hours post-surgery, and I was to have been sedated for the duration.  Turns out that they were unable to keep me sedated, and after 24 hours I woke up alone in the ICU wondering why I still had the tube in place and not knowing how the surgery had gone.  At 6am, I had the nurse call my wife who told me that she loved me and that she would be coming in to "talk to me" that afternoon.  So, as usual, I'm thinking "I'm dying," and "my wife is going to fill me in on how poorly the surgery went as soon as she can muster up the strength to come and speak with me." Long story short, my wife thought I knew how the surgery had gone because she apparently told me as I was waking up in recovery just after the surgery (before they put me out again).  I, of course, had no recollection of that.  I ended up getting the whole story from my wife a few hours later after I woke up in the ICU after I had come to grips with what I was sure was my imminent death and had the nurse call my wife again so that I could console her.  Those were some pretty depressing hours there. Love to everyone - JohnnyO JohnnyO Sat, 11 Feb 2012 00:00:00 GMT On Feb 07, 2012 3:09 PM nwwoman wrote: On Feb 01, 2012 9:48 PM Roselvr wrote: On Feb 01, 2012 8:00 PM nwwoman wrote: "From my understanding, chemo is not curative and it is used to soften tumors before and during radiation. If he had a chest scan of some sort at diagnosis and it showed positive nodes, would the addition of Cisplatin had given him a cure, or would it have just given him a few more months than he had." After Bob's death, I talked with the oncologist we had visited with once at Fred Hutchinson (after mets found).  He told me that adding cisplatin (erbitux is sometimes used) during radiation not only increases efficacy of rad but also provides a systemic treatment.  Chemo can "kill" but once this cancer is being widely distributed in the bloodstream, it's a beast to contend with and cure is not possible.  Dealing with a million cells on the loose is quite different from a few.   The thinking, he told me, is that in instances where the # of nodes is over 1 in the neck lymph system that there is already some microscopic cells that have migrated or are beginning to migrate.  In Bob's instance, the belief was that because he had only 1 node that was malignant, there was little chance of migration.  "We caught it early," was the refrain.  Of course "early" is relative as we all know the staging.  Actually, they even restaged him -- to a lower # because of the finding of only one malignant lymph node. If they had done a chest scan and found cancerous lesions on his lungs when we began the journey (rather than 3 months after surgery and rad), the lesions would have been far smaller and the treatment would have been different -- as would our outlook.  We were told how the cell multiplication results in aggressive growth once lesions become larger, e.g. 1 cell multiplies and become 2; 2 cells become 4; 4 becomes 8; 8 becomes 16; 16=32 and so forth.  He had 21 and two were 2 inches in diameter.  I do know that the radiation oncologist, surgeon and chemo oncologist were all shocked by his lung mets -- that they had occurred so fast, were so numerous and so large.  In fact, when the radiation oncologist saw the scan, he said that in his career he had never experienced anyone having mets like Bob's 3 months after treatment and he believed that it was an infection.  He was stunned -- and said so -- when the biopsy came back positive for SCC. Your story breaks my heart more; each time I read it. I'm assuming they did not do a pet scan. Can I ask where you're located? Was he treated locally or a large center? If it was me; I'd probably be searching them on google maps; then doing a review. Have you consulted an attorney? It will not get your love back but you may be entitled to damages. I'm so very sorry for your loss. I've been trying to find one members posts because I think they had a similar story but I have not yet been able to find what I'm looking for. Unfortunately; with this type of cancer; it's very important to treat with big guns because it can rear it's ugly head in other places. I know of someone that was treated at a large university but in the end; 5+ years later; it was back. I don't know what their treatment was; but I think they used everything.@ Roselvr -- So sorry I did not reply to your message sooner.  Sometimes I just have to distance myself from Bob's experience as I fall back into that black place that I'm determined not to live within. It's also been very busy here, which is the world I'm creating for myself so I get through these days. But...in reply to your questions, there was no scan of any type before his surgery.  How amazing is that? We (I) live 15 miles south of a 27K university town (Pullman, WA) and 80 miles south of 350K city (Spokane, WA).  Spokane is the largest city east of the Cascades which border Seattle area. We also live 15 miles north of Lewiston, Idaho, which is about 30K.  We live in Colton, WA., a town of about 300 people in the middle of rolling hills and wheatfields and lots of streams. It's nothing but hills and miles and miles of wide open land between here and the next small town and more of the same on the way to Spokane.  Peaceful! Two lane roads. Not a freeway anywhere. I think it's the "hand-off" of Bob that failed him.  His primary was in Pullman and when the antibiotics she had him on did not work, she passed him to Pullman's only ENT.  There is no medical oncologist in Pullman or cancer doctor.  And our town, Colton, has only two tiny biz - no grocery store, no restaurant, no bar!  (see: http://g.co/maps/3ub2d "" target="_blank" rel="nofollow">http://g.co/maps/3ub2d " target="_blank" rel="nofollow">http://g.co/maps/3ub2d ). After a 10-minute visit, the Pullman ENT quickly referred him to Spokane ENT surgeon and boom, we had surgery. They did no biopsy, no scans....nothing.  So we went north for the surgery and then south to Lewiston for radiation.  It was when it metastasized that we had a Seattle consult and then landed at a private cancer center in Spokane for chemo. He did have scans there. The medical oncologist there said that it's important to have a med.oncol "" target="_blank" rel="nofollow">http://med.oncol " target="_blank" rel="nofollow">med.oncol . from the get go to "steer the ship" and he said he would have inisisted on cisplatin or even erbitux with radiation if he had been involved earlier.  I thought about attorney but just don't see the point.  All I want back is Bob. And we're the one's who have spent our lfetimes in the country.  So we've got lots of clean air and zero crime -- as well as few doctors. Thanks for your caring.  I'm very sad.  Losing a spouse of 3 decades, especially one that is your laughter and joined to your soul, is so much harder than the loss of my parents.  My dad died in January 2011 and my love died in November 2011.  Lost my job in June 2011. Life is certainly a constant test of one's endurance. I sent you a private reply. ~Hugs Roselvr Tue, 07 Feb 2012 00:00:00 GMT On Feb 07, 2012 12:36 AM JohnnyO wrote: Just got back from hospital.  All good news so far , but no time to write as I adjust to my first night with a nasal feeding tube and all the fun meds required post-surgically. Keep those good vibes and prayers coming, friends, it's all working. Welcome home. This is why you should have your wife join. There may be a lot of days you're not up to posting. Roselvr Tue, 07 Feb 2012 00:00:00 GMT I can't believe it!  Whoo Hoo is right.....such good news! Wow Tawny xo tawny111 Tue, 07 Feb 2012 00:00:00 GMT nwwoman: It's like you didn't try your VERY best! My heart breaks for you, and yet i sense a strong woman underneath a fragile shell. Take good care of yourself. love, tawny xo tawny111 Tue, 07 Feb 2012 00:00:00 GMT On Feb 01, 2012 9:48 PM Roselvr wrote: On Feb 01, 2012 8:00 PM nwwoman wrote: "From my understanding, chemo is not curative and it is used to soften tumors before and during radiation. If he had a chest scan of some sort at diagnosis and it showed positive nodes, would the addition of Cisplatin had given him a cure, or would it have just given him a few more months than he had." After Bob's death, I talked with the oncologist we had visited with once at Fred Hutchinson (after mets found).  He told me that adding cisplatin (erbitux is sometimes used) during radiation not only increases efficacy of rad but also provides a systemic treatment.  Chemo can "kill" but once this cancer is being widely distributed in the bloodstream, it's a beast to contend with and cure is not possible.  Dealing with a million cells on the loose is quite different from a few.   The thinking, he told me, is that in instances where the # of nodes is over 1 in the neck lymph system that there is already some microscopic cells that have migrated or are beginning to migrate.  In Bob's instance, the belief was that because he had only 1 node that was malignant, there was little chance of migration.  "We caught it early," was the refrain.  Of course "early" is relative as we all know the staging.  Actually, they even restaged him -- to a lower # because of the finding of only one malignant lymph node. If they had done a chest scan and found cancerous lesions on his lungs when we began the journey (rather than 3 months after surgery and rad), the lesions would have been far smaller and the treatment would have been different -- as would our outlook.  We were told how the cell multiplication results in aggressive growth once lesions become larger, e.g. 1 cell multiplies and become 2; 2 cells become 4; 4 becomes 8; 8 becomes 16; 16=32 and so forth.  He had 21 and two were 2 inches in diameter.  I do know that the radiation oncologist, surgeon and chemo oncologist were all shocked by his lung mets -- that they had occurred so fast, were so numerous and so large.  In fact, when the radiation oncologist saw the scan, he said that in his career he had never experienced anyone having mets like Bob's 3 months after treatment and he believed that it was an infection.  He was stunned -- and said so -- when the biopsy came back positive for SCC. Your story breaks my heart more; each time I read it. I'm assuming they did not do a pet scan. Can I ask where you're located? Was he treated locally or a large center? If it was me; I'd probably be searching them on google maps; then doing a review. Have you consulted an attorney? It will not get your love back but you may be entitled to damages. I'm so very sorry for your loss. I've been trying to find one members posts because I think they had a similar story but I have not yet been able to find what I'm looking for. Unfortunately; with this type of cancer; it's very important to treat with big guns because it can rear it's ugly head in other places. I know of someone that was treated at a large university but in the end; 5+ years later; it was back. I don't know what their treatment was; but I think they used everything.@ Roselvr -- So sorry I did not reply to your message sooner.  Sometimes I just have to distance myself from Bob's experience as I fall back into that black place that I'm determined not to live within. It's also been very busy here, which is the world I'm creating for myself so I get through these days. But...in reply to your questions, there was no scan of any type before his surgery.  How amazing is that? We (I) live 15 miles south of a 27K university town (Pullman, WA) and 80 miles south of 350K city (Spokane, WA).  Spokane is the largest city east of the Cascades which border Seattle area. We also live 15 miles north of Lewiston, Idaho, which is about 30K.  We live in Colton, WA., a town of about 300 people in the middle of rolling hills and wheatfields and lots of streams. It's nothing but hills and miles and miles of wide open land between here and the next small town and more of the same on the way to Spokane.  Peaceful! Two lane roads. Not a freeway anywhere. I think it's the "hand-off" of Bob that failed him.  His primary was in Pullman and when the antibiotics she had him on did not work, she passed him to Pullman's only ENT.  There is no medical oncologist in Pullman or cancer doctor.  And our town, Colton, has only two tiny biz - no grocery store, no restaurant, no bar!  (see: http://g.co/maps/3ub2d ). After a 10-minute visit, the Pullman ENT quickly referred him to Spokane ENT surgeon and boom, we had surgery. They did no biopsy, no scans....nothing.  So we went north for the surgery and then south to Lewiston for radiation.  It was when it metastasized that we had a Seattle consult and then landed at a private cancer center in Spokane for chemo. He did have scans there. The medical oncologist there said that it's important to have a med.oncol . from the get go to "steer the ship" and he said he would have inisisted on cisplatin or even erbitux with radiation if he had been involved earlier.  I thought about attorney but just don't see the point.  All I want back is Bob. And we're the one's who have spent our lfetimes in the country.  So we've got lots of clean air and zero crime -- as well as few doctors. Thanks for your caring.  I'm very sad.  Losing a spouse of 3 decades, especially one that is your laughter and joined to your soul, is so much harder than the loss of my parents.  My dad died in January 2011 and my love died in November 2011.  Lost my job in June 2011. Life is certainly a constant test of one's endurance. nwwoman Tue, 07 Feb 2012 00:00:00 GMT Great news - I was thinking about your all weekend.  Take care of yourself and update us when you're feeling up to it.  SO glad to hear you're home and doing well! Much love ~ GDW GoldDustWoman Tue, 07 Feb 2012 00:00:00 GMT Of all the Evening News I have heard on the stations tonight, this is the best news flash I  have read tonight. Get some rest and thank you for updating us. My Best to You,Your Family and Everyone Here PopPop Tue, 07 Feb 2012 00:00:00 GMT WOW -- My husband was in the hospital for a week after his surgery and here you are -- already typing on the computer keypad.  This is great.  So great.  It IS WORKING.  Yahoo.  I am so happy for you.  Best news all day.  Keep us posted and will keep praying.  Candle still glows in church here.... Hugs.. nwwoman Tue, 07 Feb 2012 00:00:00 GMT woo-hoo! you "sound" great! Cray thank you, Lord! crayfish Tue, 07 Feb 2012 00:00:00 GMT Just got back from hospital.  All good news so far , but no time to write as I adjust to my first night with a nasal feeding tube and all the fun meds required post-surgically. Keep those good vibes and prayers coming, friends, it's all working. JohnnyO Tue, 07 Feb 2012 00:00:00 GMT On Feb 03, 2012 3:34 AM JohnnyO wrote: Ooops - and the prayers.  Thanks for the prayers!Am thinking of you as I write this, sending prayers your way JohnnyO! Tawny and family xo tawny111 Sat, 04 Feb 2012 00:00:00 GMT Ooops - and the prayers.  Thanks for the prayers! JohnnyO Fri, 03 Feb 2012 00:00:00 GMT Ed, GDW, nwwoman - Thanks for your recent well wishes (and nwwoman, thanks especially for the thought of lighting a candle for me) and positive thoughts.  I will update all of you as soon as I can.  Peace and love to you. JohnnyO Fri, 03 Feb 2012 00:00:00 GMT Oops, I just saw that it's 10 am.  OK!  Got it!  Will be praying! nwwoman Fri, 03 Feb 2012 00:00:00 GMT Hi Johnny -- I am Catholic, too, so how cool is that re St. Blaise!  That bodes so well for you!  I live in a town of about 350 people way out in the country and there's a 1890 Catholic Church that is walking distance from me.  (Very Normal Rockwell here).  I'll walk over tonight and light a candle for you, OK?  What time is your surgery?  I'll say a prayer when you're "in there" if you'll let us know. I have a good feeling about your situation. I think you are in very good hands. You keep thinking positive thoughts, praying and marching forward.  And we'll do the same for you -- holding your spirit in our hands. Warm wishes.. nwwoman Fri, 03 Feb 2012 00:00:00 GMT JohnnyO ~ Awesome news!  Tomorrow you get that mother jumper out of your house!   Is it wrong if I say "Rock on St. Blaise!?"  :) Friday, 9am my time, 10am yours, I will be thinking of and praying for you ~ Much love ~ GDW GoldDustWoman Fri, 03 Feb 2012 00:00:00 GMT John, I'll be thinking of you tomorrow. Prayers outbound as I type. My Best to You, Your Family and Everyone Here PopPop Fri, 03 Feb 2012 00:00:00 GMT Had my second opinion today re: my robotic surgery scheduled for tomorrow, and the radiation oncologist agreed that surgery makes sense in my case!  Complicated explanation, but the bottom line is that I can go into my surgery tomorrow without feeling like I might have made the wrong decision.  I think it's important to be confident when going into treatment of any sort, and this sure helps a lot. Much thanks to everyone who has chimed in with their stories and advice thus far, and special thanks to those keeping me in their hearts and prayers as I  take on this mother jumper called cancer.  10:00 am tomorrow.  For all you Catholics (like me) out there, tomorrow is the feast day for St Blaise, Patron Saint of Throat Ailments.  How about that!   JohnnyO Fri, 03 Feb 2012 00:00:00 GMT On Feb 01, 2012 8:00 PM nwwoman wrote: "From my understanding, chemo is not curative and it is used to soften tumors before and during radiation. If he had a chest scan of some sort at diagnosis and it showed positive nodes, would the addition of Cisplatin had given him a cure, or would it have just given him a few more months than he had." After Bob's death, I talked with the oncologist we had visited with once at Fred Hutchinson (after mets found).  He told me that adding cisplatin (erbitux is sometimes used) during radiation not only increases efficacy of rad but also provides a systemic treatment.  Chemo can "kill" but once this cancer is being widely distributed in the bloodstream, it's a beast to contend with and cure is not possible.  Dealing with a million cells on the loose is quite different from a few.   The thinking, he told me, is that in instances where the # of nodes is over 1 in the neck lymph system that there is already some microscopic cells that have migrated or are beginning to migrate.  In Bob's instance, the belief was that because he had only 1 node that was malignant, there was little chance of migration.  "We caught it early," was the refrain.  Of course "early" is relative as we all know the staging.  Actually, they even restaged him -- to a lower # because of the finding of only one malignant lymph node. If they had done a chest scan and found cancerous lesions on his lungs when we began the journey (rather than 3 months after surgery and rad), the lesions would have been far smaller and the treatment would have been different -- as would our outlook.  We were told how the cell multiplication results in aggressive growth once lesions become larger, e.g. 1 cell multiplies and become 2; 2 cells become 4; 4 becomes 8; 8 becomes 16; 16=32 and so forth.  He had 21 and two were 2 inches in diameter.  I do know that the radiation oncologist, surgeon and chemo oncologist were all shocked by his lung mets -- that they had occurred so fast, were so numerous and so large.  In fact, when the radiation oncologist saw the scan, he said that in his career he had never experienced anyone having mets like Bob's 3 months after treatment and he believed that it was an infection.  He was stunned -- and said so -- when the biopsy came back positive for SCC. Your story breaks my heart more; each time I read it. I'm assuming they did not do a pet scan. Can I ask where you're located? Was he treated locally or a large center? If it was me; I'd probably be searching them on google maps; then doing a review. Have you consulted an attorney? It will not get your love back but you may be entitled to damages. I'm so very sorry for your loss. I've been trying to find one members posts because I think they had a similar story but I have not yet been able to find what I'm looking for. Unfortunately; with this type of cancer; it's very important to treat with big guns because it can rear it's ugly head in other places. I know of someone that was treated at a large university but in the end; 5+ years later; it was back. I don't know what their treatment was; but I think they used everything. Roselvr Wed, 01 Feb 2012 00:00:00 GMT On Feb 01, 2012 8:13 PM nwwoman wrote: On Feb 01, 2012 7:44 PM JohnnyO wrote: nwwoman - Didn't mean to be rude by referring to you as "the woman." I suppose that they didn't do lung scan on your husband at diagnosis because it would not have affected their choice of treatment: they had to take care of what was in the neck.  I wonder if they had done the lung scan and it showed metastases whether they would have been "allowed" to do the neck surgery in the first place.No problem re "the woman" -- all OK...  They didn't do lung scan 'cause it was overlooked rather than a conscious decision.  I know because again, I called the surgeon (who did the staging) when the mets were found and asked him about the lack of a scan.  He asked me to wait a moment, checked the files, came back and said, "I cannot believe this.  No one did a scan?  Not your ENT? Not your primary?  I am in shock. I can't believe that no one did that."  I heard the same thing from the ENT about the surgeon.  ENT told me that the surgeon did the staging, so he should have ordered it.  Sure, the scan would have had an effect.  For one, it would have meant that we wouldn't have been told that chance of survival and cure was 90 percent and all looked very good.  We would have known we were playing a higher stakes game as mets changes the dynamic.   If there were mets at that time, I suspect we would have had surgery/rad and then chemo as soon as possible or some combo like that -- but systemic means chemo and reduced chance. I can't undo what's done.  I just think there was some bungling up but ah well.  It doesn't really matter at this point. Dear NWWoman ~ I know I've said it before but I am compelled to say it again ~ I am so very sorry for your loss.  I too sat in a room with doctors saying that we had a 90% cure rate.  I too heard doctors say we ARE going to cure you, but you'll think we're killing you while we're doing it.  I could not bear the thought of being left behind without the love of my life.  And that is where you are now.  There are no words that I could ever say that would comfort you ~ I wouldn't even presume to try.  All I can say is that I would be hurting so horribly if that had happened to us I'm not sure how I would even cope.  I am so very sorry your husband was taken from you and all who love him.  The pain must be unbearable. You are so right when you say that you can't undo what's done.  You ask can we believe they didn't do a scan?  I can't!  I have a 35 year career in credit card processing and I've fired people for mistakes that certainly are not life and death choices!  (Ok no one be mad at me for firing people, but my point is that there is no room for error or carelessness when you're talking about people's lives - especially when we don't tolerate error or carelessness when we're only talking about people's credit cards.)  But you know, when my husband was first trying to get to the bottom of his swollen node, 3 doctors were all "oh it's nothing to worry about."  Finally, the last doctor, literally as he was walking out the door said "my partner scoped you, right?"  We didn't even know what he meant.  He meant the up the nose and down the throat scope.  Well two needle biopsys showed negative, CT scan negative, but when he came back in the room to do that scope - that's when he found something suspicious.  We were literally a step and a half closed door away from waiting another 6 months.  Who knows what the outcome would have been then.  So we can't change what's done and you certainly should not beat yourself up for taking advice from medical professionals.  I am curious though if you don't mind me asking, after the initial diagnosis of SCC, did they not order a PET scan?  I thought that was standard procedure too, but maybe not.  Or maybe you are in Canada?  Forgive me if you shared this before.  I hope I do not appear insensitive by asking this question.  Just wanting to understand the process where you are. Much love ~ GDW GoldDustWoman Wed, 01 Feb 2012 00:00:00 GMT On Feb 01, 2012 7:39 PM JohnnyO wrote: Thanks for your opinion, Roselvr.  I've heard that surgery after radiation is difficult and has a very long healing process.  And, to boot, they don't do robotic surgery post-radiation, so it would be a major neck dissection. Thanks for the reference from NJ 101.5 (Is that Dominsky and Doyle?  I miss the other Jersey Guys).  I'm pretty sure that no one in the country is doing proton therapy for head/neck cancer (we checked Mass Gen and MD Anderson). Thanks again - JohnnyoI figured it out. Centra State in Freehold. 901 West Main Street, Freehold Township, NJ From their proton page -Proton therapy is effective in treating many types of cancers, such as head and neck, brain, prostate, lung, gastrointestinal and pediatric cancers http://www.centrastate.com/Cancer-Care/Proton-Therapy.asp Yes; NJ 101.5; home of Dennis & Judy & the ex-Jersey Guys. I don't listen to their afternoon shows any more. Roselvr Wed, 01 Feb 2012 00:00:00 GMT On Feb 01, 2012 7:44 PM JohnnyO wrote: nwwoman - Didn't mean to be rude by referring to you as "the woman." I suppose that they didn't do lung scan on your husband at diagnosis because it would not have affected their choice of treatment: they had to take care of what was in the neck.  I wonder if they had done the lung scan and it showed metastases whether they would have been "allowed" to do the neck surgery in the first place.No problem re "the woman" -- all OK...  They didn't do lung scan 'cause it was overlooked rather than a conscious decision.  I know because again, I called the surgeon (who did the staging) when the mets were found and asked him about the lack of a scan.  He asked me to wait a moment, checked the files, came back and said, "I cannot believe this.  No one did a scan?  Not your ENT? Not your primary?  I am in shock. I can't believe that no one did that."  I heard the same thing from the ENT about the surgeon.  ENT told me that the surgeon did the staging, so he should have ordered it.  Sure, the scan would have had an effect.  For one, it would have meant that we wouldn't have been told that chance of survival and cure was 90 percent and all looked very good.  We would have known we were playing a higher stakes game as mets changes the dynamic.   If there were mets at that time, I suspect we would have had surgery/rad and then chemo as soon as possible or some combo like that -- but systemic means chemo and reduced chance. I can't undo what's done.  I just think there was some bungling up but ah well.  It doesn't really matter at this point. nwwoman Wed, 01 Feb 2012 00:00:00 GMT "From my understanding, chemo is not curative and it is used to soften tumors before and during radiation. If he had a chest scan of some sort at diagnosis and it showed positive nodes, would the addition of Cisplatin had given him a cure, or would it have just given him a few more months than he had." After Bob's death, I talked with the oncologist we had visited with once at Fred Hutchinson (after mets found).  He told me that adding cisplatin (erbitux is sometimes used) during radiation not only increases efficacy of rad but also provides a systemic treatment.  Chemo can "kill" but once this cancer is being widely distributed in the bloodstream, it's a beast to contend with and cure is not possible.  Dealing with a million cells on the loose is quite different from a few.   The thinking, he told me, is that in instances where the # of nodes is over 1 in the neck lymph system that there is already some microscopic cells that have migrated or are beginning to migrate.  In Bob's instance, the belief was that because he had only 1 node that was malignant, there was little chance of migration.  "We caught it early," was the refrain.  Of course "early" is relative as we all know the staging.  Actually, they even restaged him -- to a lower # because of the finding of only one malignant lymph node. If they had done a chest scan and found cancerous lesions on his lungs when we began the journey (rather than 3 months after surgery and rad), the lesions would have been far smaller and the treatment would have been different -- as would our outlook.  We were told how the cell multiplication results in aggressive growth once lesions become larger, e.g. 1 cell multiplies and become 2; 2 cells become 4; 4 becomes 8; 8 becomes 16; 16=32 and so forth.  He had 21 and two were 2 inches in diameter.  I do know that the radiation oncologist, surgeon and chemo oncologist were all shocked by his lung mets -- that they had occurred so fast, were so numerous and so large.  In fact, when the radiation oncologist saw the scan, he said that in his career he had never experienced anyone having mets like Bob's 3 months after treatment and he believed that it was an infection.  He was stunned -- and said so -- when the biopsy came back positive for SCC. nwwoman Wed, 01 Feb 2012 00:00:00 GMT nwwoman - Didn't mean to be rude by referring to you as "the woman." I suppose that they didn't do lung scan on your husband at diagnosis because it would not have affected their choice of treatment: they had to take care of what was in the neck.  I wonder if they had done the lung scan and it showed metastases whether they would have been "allowed" to do the neck surgery in the first place. JohnnyO Wed, 01 Feb 2012 00:00:00 GMT Thanks for your opinion, Roselvr.  I've heard that surgery after radiation is difficult and has a very long healing process.  And, to boot, they don't do robotic surgery post-radiation, so it would be a major neck dissection. Thanks for the reference from NJ 101.5 (Is that Dominsky and Doyle?  I miss the other Jersey Guys).  I'm pretty sure that no one in the country is doing proton therapy for head/neck cancer (we checked Mass Gen and MD Anderson). Thanks again - Johnnyo JohnnyO Wed, 01 Feb 2012 00:00:00 GMT I just heard a commercial on NJ 101.5 for a proton machine in NJ; don't recall the name. Didn't hear enough of the commercial. My opinion is surgery 1st to get it out; if you wait until after rads; depending on what type of rads you had; I'd wonder about healing due to radiation damage. My hubs throat was not fully healed for 8 months. Roselvr Wed, 01 Feb 2012 00:00:00 GMT On Feb 01, 2012 5:36 PM nwwoman wrote: On Feb 01, 2012 4:52 PM RogerRN43 wrote: On Feb 01, 2012 2:21 AM JohnnyO wrote: Ok, so my health insurance company won't cover me for an out-of-state consult, so I've canceled my trip to NYC for tomorrow.  I'm considering scrambling for a local consult tomorrow, but the fact of the matter is I need to move and move quickly.  Even if the radiation oncologist gives me a persuasive story to forego surgery, after that I would have to do an evaluation of the local institutions and who does radiation/chemo the best.  And then schedule it and wait for it.  And worry knowing that there are other institutions in the country that have better radiation/onco facilities than I have available where I live. I have the best robotic surgeons for head/neck cancer in my back yard.  Reminds me of that old joke about the guy who was stranded on a desert island and refused getting on the helicopter that came to rescue him because God was going to rescue him.  And after he dies on the island and goes to heaven, he asks God why He didn't rescue him, and God says, "I sent you a helicopter...."  The helicopter is here.  I gotta get on it. Yeah, not exactly scientific, but the fact is that there doesn't appear to be an objective right/wrong here.  So, I gotta go with what feels right to me; the option that I can least likely look back on and think, "I should have done more."  Like the woman who lost her husband and regrets not doing the chemo.  Wish me well, friends.Wherever you go, the gold standard of care is rads to both sides and Cisplatin, a known agent used for a very long time. Any trials you participate in has the risk of lesser benefit because it just hasn't had the time to prove itself. If it was me, I would at least get the standard. Any surgery or different chemo agents offered would be extra. In terms of rads, there is IMRT, tomotherapy, and proton; IMRT is today's gold standard. Choosing treatment itself is a gamble but so is life. There are no guarantees. We are distinct biolgical entities that constantly change. We all respond and recover from treatment differently.  Whatever treatments you choose and where, the most important, and you've addressed it, is getting it in a timely fashion. Best wishes "Like the woman who lost her husband and regrets not doing the chemo."   "Wherever you go, the gold standard of care is rads to both sides and Cisplatin, a known agent used for a very long time." -- I am "that woman" :-)) and yes, I regret that we were not told about or encouraged to have Cisplatin during radiation, following radical neck dissection and radical tonsillectomy.  I also regret that I did not ask why a scan of any sort was not taken of his lung/chest region at diagnosis, a site that is prone to mets from SCC head/neck cancer. (Can you believe this??) And no matter what I'm told, I still believe he would have had more years if that approach had been taken. I feel it... I sense it ..I know it.  And I'm an educated professional with decades as a faculty member at two universities who doesn't hold much stock in voodo, wild assumptions, or unsubstantiated claims.  I truly believe that in addition to what Roger has written about gold standards (and he is correct -- based, again, on the literature), that there is much to be learned from the Block Center for Integrative Treatment for Cancer.   Our insurance didn't allow us to go there but I have read so many articles in the scientific literature that I wish money and insurance were not an object in treatment.  If it had not been, we would have been at the Block Center.  And yes, I agree that choosing treatment is a gamble.  But it is a calculated gamble as there is data avaiable on patient response that can be used to reduce the risk.  The risk does not disappear.  One's comorbidities come into play.  In our case, we had a lot going for us, according to Fred Hutchinson Cancer Center across the state from us: his "young" age; his strong, healthy heart; his overall excellent health; his work as a contractor that kept him in good physical shape; his emotional quotient ..positive; a support system; and health insurance.  And, also, only one solitary node in his neck was positive and the tumor on his tonsil was well encapsulated.  I know you are in a very scarey place.  But I'm going to second what Roger has said -- get the standard.  Make sure you have good scans.  Do everything you can right now to put on or keep weight; eat healthy; and get going. My grief comes from knowing that SO MANY have made it through this treatment and reached NED and the love of my life, the other half of me, did not make it past one year after diagnosis.  But that does not mean you won't.  You can and will be part of the big group.  I'm praying for you and thinking of you, ever day.  Stay in touch. From my understanding, chemo is not curative and it is used to soften tumors before and during radiation. If he had a chest scan of some sort at diagnosis and it showed positive nodes, would the addition of Cisplatin had given him a cure, or would it have just given him a few more months than he had? Or perhaps, it may have changed the whole treatment approach, and he would have been given a chemo cocktail for palliative reasons. I haven't researched it enough or found an answer. Once in a vital organ, chemo will not destroy all the cancerous cells but is this related to the cells being chemo resistant after the first treatment process, or can Cisplatin work systemically in the first go around to clean up vagrant cells in the body?  Now that I think about it, I don't see why not. It has to be able to clean up some cells, it just wouldn't be able to clean up larger clusters, probably by the time it's visible on a scan.  In that line of thinking, I don't think a lung scan prior would have made much of a difference, but I do think if he received Cisplatin, his survival may have been significantly longer if they were micro seeds, maybe less so, if they were visible nodes. I'm only guessing. Despite receiving gold standards, it is not 100% survival within the first year so unfortunately, we can't bank on it anyway. I very sorry for your loss. RogerRN43 Wed, 01 Feb 2012 00:00:00 GMT On Feb 01, 2012 5:34 PM JohnnyO wrote: Thanks, RogerRN.  As I understand it, the gold standard is resistant to change: if it ain't broke, don't fix it, and there are many success stories with just chemoradiation.  But the robotic surgery is showing great success, as well, and is showing at least equal cure rates with lower long-term side effects. I think that down the line, proton therapy will be the gold standard, as it will target the cancer cells with minimal damage to surrounding healthy tissue, thus virtually eliminating all of those nasty side effects.  But as I see it right now, robotic surgery plus chemoradiation at lower levels is the best of all worlds under the current state of the art.  They're not selling robotic surgery machines across the country at $2M a pop because they are not showing any promise. You hit the nail on the head with the timeliness argument.  I feel strongly about moving on this now. Hi John, Don't get me wrong, I'm not against the surgery. I'm just saying, if it was me, I would want the minimum of rads and a platinum agent. So if they said to me, surgery and rads only, or surgery+rads and how about try Erbitux, I would push for Cisplatin or Carboplatin too. In regards to proton, I wonder if a beam is so precise avoiding the rest, it means cells can be missed if present in healthy tissue. After all, lymph involvement means access to the lymphatic highway and there are no guarantees only the enlarged lymph(s) are cancerous. Even a PET can miss micro disease elsewhere in the neck. The founder of OCF is a 12y survivor. He received standard RT on 3 sides before IMRT was available. Although today, that would be a drastic approach, I'm sure it hammered out all possibility of vagrant cells in his whole neck region. I would worry that sparing too much healthy tissue would make those areas fertile beds for recurrence especially if they already contained micro seeds. I'm not a rad onc or researcher in the field to properly comment. I just believe IMRT strikes a good balance of focusing on the primary tumor+secondary lymph, then fanning outwards like a net to catch what can't be seen (this is what my field mapping looked like, topography in gradually reducing rad strength).  If they can show proton therapy to be the next gold standard and that would require some years of retrospective studies, it would be much better for the patient. We all know, once we survive, it's the side effects of treatment that we suffer from after it's done. Best wishes, Roger RogerRN43 Wed, 01 Feb 2012 00:00:00 GMT On Feb 01, 2012 4:52 PM RogerRN43 wrote: On Feb 01, 2012 2:21 AM JohnnyO wrote: Ok, so my health insurance company won't cover me for an out-of-state consult, so I've canceled my trip to NYC for tomorrow.  I'm considering scrambling for a local consult tomorrow, but the fact of the matter is I need to move and move quickly.  Even if the radiation oncologist gives me a persuasive story to forego surgery, after that I would have to do an evaluation of the local institutions and who does radiation/chemo the best.  And then schedule it and wait for it.  And worry knowing that there are other institutions in the country that have better radiation/onco facilities than I have available where I live. I have the best robotic surgeons for head/neck cancer in my back yard.  Reminds me of that old joke about the guy who was stranded on a desert island and refused getting on the helicopter that came to rescue him because God was going to rescue him.  And after he dies on the island and goes to heaven, he asks God why He didn't rescue him, and God says, "I sent you a helicopter...."  The helicopter is here.  I gotta get on it. Yeah, not exactly scientific, but the fact is that there doesn't appear to be an objective right/wrong here.  So, I gotta go with what feels right to me; the option that I can least likely look back on and think, "I should have done more."  Like the woman who lost her husband and regrets not doing the chemo.  Wish me well, friends.Wherever you go, the gold standard of care is rads to both sides and Cisplatin, a known agent used for a very long time. Any trials you participate in has the risk of lesser benefit because it just hasn't had the time to prove itself. If it was me, I would at least get the standard. Any surgery or different chemo agents offered would be extra. In terms of rads, there is IMRT, tomotherapy, and proton; IMRT is today's gold standard. Choosing treatment itself is a gamble but so is life. There are no guarantees. We are distinct biolgical entities that constantly change. We all respond and recover from treatment differently.  Whatever treatments you choose and where, the most important, and you've addressed it, is getting it in a timely fashion. Best wishes "Like the woman who lost her husband and regrets not doing the chemo."   "Wherever you go, the gold standard of care is rads to both sides and Cisplatin, a known agent used for a very long time." -- I am "that woman" :-)) and yes, I regret that we were not told about or encouraged to have Cisplatin during radiation, following radical neck dissection and radical tonsillectomy.  I also regret that I did not ask why a scan of any sort was not taken of his lung/chest region at diagnosis, a site that is prone to mets from SCC head/neck cancer. (Can you believe this??) And no matter what I'm told, I still believe he would have had more years if that approach had been taken. I feel it... I sense it ..I know it.  And I'm an educated professional with decades as a faculty member at two universities who doesn't hold much stock in voodo, wild assumptions, or unsubstantiated claims.  I truly believe that in addition to what Roger has written about gold standards (and he is correct -- based, again, on the literature), that there is much to be learned from the Block Center for Integrative Treatment for Cancer.   Our insurance didn't allow us to go there but I have read so many articles in the scientific literature that I wish money and insurance were not an object in treatment.  If it had not been, we would have been at the Block Center.  And yes, I agree that choosing treatment is a gamble.  But it is a calculated gamble as there is data avaiable on patient response that can be used to reduce the risk.  The risk does not disappear.  One's comorbidities come into play.  In our case, we had a lot going for us, according to Fred Hutchinson Cancer Center across the state from us: his "young" age; his strong, healthy heart; his overall excellent health; his work as a contractor that kept him in good physical shape; his emotional quotient ..positive; a support system; and health insurance.  And, also, only one solitary node in his neck was positive and the tumor on his tonsil was well encapsulated.  I know you are in a very scarey place.  But I'm going to second what Roger has said -- get the standard.  Make sure you have good scans.  Do everything you can right now to put on or keep weight; eat healthy; and get going. My grief comes from knowing that SO MANY have made it through this treatment and reached NED and the love of my life, the other half of me, did not make it past one year after diagnosis.  But that does not mean you won't.  You can and will be part of the big group.  I'm praying for you and thinking of you, ever day.  Stay in touch. nwwoman Wed, 01 Feb 2012 00:00:00 GMT Thanks, RogerRN.  As I understand it, the gold standard is resistant to change: if it ain't broke, don't fix it, and there are many success stories with just chemoradiation.  But the robotic surgery is showing great success, as well, and is showing at least equal cure rates with lower long-term side effects. I think that down the line, proton therapy will be the gold standard, as it will target the cancer cells with minimal damage to surrounding healthy tissue, thus virtually eliminating all of those nasty side effects.  But as I see it right now, robotic surgery plus chemoradiation at lower levels is the best of all worlds under the current state of the art.  They're not selling robotic surgery machines across the country at $2M a pop because they are not showing any promise. You hit the nail on the head with the timeliness argument.  I feel strongly about moving on this now. JohnnyO Wed, 01 Feb 2012 00:00:00 GMT On Feb 01, 2012 2:21 AM JohnnyO wrote: Ok, so my health insurance company won't cover me for an out-of-state consult, so I've canceled my trip to NYC for tomorrow.  I'm considering scrambling for a local consult tomorrow, but the fact of the matter is I need to move and move quickly.  Even if the radiation oncologist gives me a persuasive story to forego surgery, after that I would have to do an evaluation of the local institutions and who does radiation/chemo the best.  And then schedule it and wait for it.  And worry knowing that there are other institutions in the country that have better radiation/onco facilities than I have available where I live. I have the best robotic surgeons for head/neck cancer in my back yard.  Reminds me of that old joke about the guy who was stranded on a desert island and refused getting on the helicopter that came to rescue him because God was going to rescue him.  And after he dies on the island and goes to heaven, he asks God why He didn't rescue him, and God says, "I sent you a helicopter...."  The helicopter is here.  I gotta get on it. Yeah, not exactly scientific, but the fact is that there doesn't appear to be an objective right/wrong here.  So, I gotta go with what feels right to me; the option that I can least likely look back on and think, "I should have done more."  Like the woman who lost her husband and regrets not doing the chemo.  Wish me well, friends.Wherever you go, the gold standard of care is rads to both sides and Cisplatin, a known agent used for a very long time. Any trials you participate in has the risk of lesser benefit because it just hasn't had the time to prove itself. If it was me, I would at least get the standard. Any surgery or different chemo agents offered would be extra. In terms of rads, there is IMRT, tomotherapy, and proton; IMRT is today's gold standard. Choosing treatment itself is a gamble but so is life. There are no guarantees. We are distinct biolgical entities that constantly change. We all respond and recover from treatment differently.  Whatever treatments you choose and where, the most important, and you've addressed it, is getting it in a timely fashion. Best wishes RogerRN43 Wed, 01 Feb 2012 00:00:00 GMT I am wishing you well and continuing to pray for you .... all the best! God Bless! Randall55 Wed, 01 Feb 2012 00:00:00 GMT Ok, so my health insurance company won't cover me for an out-of-state consult, so I've canceled my trip to NYC for tomorrow.  I'm considering scrambling for a local consult tomorrow, but the fact of the matter is I need to move and move quickly.  Even if the radiation oncologist gives me a persuasive story to forego surgery, after that I would have to do an evaluation of the local institutions and who does radiation/chemo the best.  And then schedule it and wait for it.  And worry knowing that there are other institutions in the country that have better radiation/onco facilities than I have available where I live. I have the best robotic surgeons for head/neck cancer in my back yard.  Reminds me of that old joke about the guy who was stranded on a desert island and refused getting on the helicopter that came to rescue him because God was going to rescue him.  And after he dies on the island and goes to heaven, he asks God why He didn't rescue him, and God says, "I sent you a helicopter...."  The helicopter is here.  I gotta get on it. Yeah, not exactly scientific, but the fact is that there doesn't appear to be an objective right/wrong here.  So, I gotta go with what feels right to me; the option that I can least likely look back on and think, "I should have done more."  Like the woman who lost her husband and regrets not doing the chemo.  Wish me well, friends. JohnnyO Wed, 01 Feb 2012 00:00:00 GMT Hey Roger, thanks for your input.  Tough questions, indeed.  See my next post.... JohnnyO Wed, 01 Feb 2012 00:00:00 GMT On Jan 31, 2012 3:36 AM JohnnyO wrote: Quick clarification to those just tuning in on my case: I've had two inconclusive biopsies of the enlarged lymph node on my neck; they were unable to get cells.  But no one is relying on thise inconclusive tests for anything. I do have a conclusive biopsy at the base of my tongue which is definitely SCC (T2), so I don't think there is any doubt that the enlarged lymph node is a metastasis, despite the inconclusive biopsies.  In any case, given the tonge SCC, the lymph nodes have to come out anyway since that would be the first site of metastasis. Current status:  Robotic surgery scheduled on Friday in Philly, but first a second-opinion from a radiation oncologist - who doesn't promote surgery - (from a NYC hospital) on Wednesday to make sure I have the full picture of what my options are.  Can't imagine bagging out on the surgery at this point; I don't know what anyone could tell me that would make me change my mind.  Scared, and yet looking forward to having this stuff cut out of my neck.  I wish they would give it to me after they cut it out so I could stomp on it.If you're RO does not promote surgery, then he believes the risks, potential or not, outweigh the benefits. Is there any difference in survival with robotic surgery? In regards to neck dissection, same question, knowing there is scar disfigurement, possible longterm pain, numbness, swelling, drooped shoulder, and loss of arm range of motion. Will waiting to heal and delaying rads allow disturbed and missed microscopic cells to spread? If you don't get an ND, what if chemorad does not completely dissolve the nodes? Does that affect survival? We know healing is more challenging after rads. Tough questions, some without answers, however if you're RO has current reputable literature to support no difference in survival, surgery or not, that rads+chemo is superior, and/or he presents some of the points I mentioned, that may play into your decision. Sorry, not trying to scare you. If you're armed with all the potential risks and info, it helps you make an informed decision. All the best. RogerRN43 Tue, 31 Jan 2012 00:00:00 GMT John ~ I love this post: "Scared, and yet looking forward to having this stuff cut out of my neck. I wish they would give it to me after they cut it out so I could stomp on it." I say after that surgery you and your wife have at least a ceremonial stomping!  :) Looking forward to hearing about your Wed. meeting and keeping you in all of our prayers for Friday.  That cancer better watch out cause it's gettin' stomped on!  Much love ~ GDW   GoldDustWoman Tue, 31 Jan 2012 00:00:00 GMT On Jan 31, 2012 3:36 AM JohnnyO wrote: Quick clarification to those just tuning in on my case: I've had two inconclusive biopsies of the enlarged lymph node on my neck; they were unable to get cells.  But no one is relying on thise inconclusive tests for anything. I do have a conclusive biopsy at the base of my tongue which is definitely SCC (T2), so I don't think there is any doubt that the enlarged lymph node is a metastasis, despite the inconclusive biopsies.  In any case, given the tonge SCC, the lymph nodes have to come out anyway since that would be the first site of metastasis. Current status:  Robotic surgery scheduled on Friday in Philly, but first a second-opinion from a radiation oncologist - who doesn't promote surgery - (from a NYC hospital) on Wednesday to make sure I have the full picture of what my options are.  Can't imagine bagging out on the surgery at this point; I don't know what anyone could tell me that would make me change my mind.  Scared, and yet looking forward to having this stuff cut out of my neck.  I wish they would give it to me after they cut it out so I could stomp on it.Took two attempts with fine needle biopsies on the pair of lymph nodes we knew about in my neck (CT: necrotic with rim enhancement) to verify strong suspicions they were cancerous. The first time was by my ENT in his office and it came back inconclusive (not enough materia) which baffled him as they were close enough to the surface. The "do over" was done a few days later by the pathologist that had looked at the first biopsy done by the ENT. She was able to do some quick tests and quick looks under a microscope to ensure she had enough cells from the nodes for a thorough, detailed biopsy. I was lucky that my ENT sent me straight to the lab and have the pathologist do the second needle biopsy as she was very practiced and quite skilled at doing them. My conclusion after going through that and hearing about other folks' experience with them: fine needle biopsies coming up "inconclusive" aren't a rarity. Going in to the radical neck dissection about a week later we knew about 2 nodes at the outset . . . surgery pulled 22 lymph nodesin the chain(s) of them down my neck toward the clavicle (you DON'T want a neck dissection do-over). The biopsy on them showed cancer in six nodes with extensions forming in the parotid (that was also removed) . . . there were four more lymph nodes we didn't even know about going in. Who knows how many more had micro-mets in them that were as yet undetectable. Have to give my ENT credit for taking "more" than we knew about. I'm doing quite well without any lymphedema, which can be a  (treatable) side effect after removing a significant number of lymph nodes. Yep . . . regional nodes are typically the first mets, and the lymphatic system is a primary means of facilitating mets to other organs in your body . . . when surgery is feasible, taking out enough of the regional nodes is important to halting the spread. Keep hanging tough! You're in good company; there are 28 million of us (survivors). John jalind Tue, 31 Jan 2012 00:00:00 GMT Quick clarification to those just tuning in on my case: I've had two inconclusive biopsies of the enlarged lymph node on my neck; they were unable to get cells.  But no one is relying on thise inconclusive tests for anything. I do have a conclusive biopsy at the base of my tongue which is definitely SCC (T2), so I don't think there is any doubt that the enlarged lymph node is a metastasis, despite the inconclusive biopsies.  In any case, given the tonge SCC, the lymph nodes have to come out anyway since that would be the first site of metastasis. Current status:  Robotic surgery scheduled on Friday in Philly, but first a second-opinion from a radiation oncologist - who doesn't promote surgery - (from a NYC hospital) on Wednesday to make sure I have the full picture of what my options are.  Can't imagine bagging out on the surgery at this point; I don't know what anyone could tell me that would make me change my mind.  Scared, and yet looking forward to having this stuff cut out of my neck.  I wish they would give it to me after they cut it out so I could stomp on it. JohnnyO Tue, 31 Jan 2012 00:00:00 GMT On Jan 30, 2012 10:19 PM beachadwriter wrote: On Jan 11, 2012 9:41 PM JohnnyO wrote: Went for the PET scan today, as well as a needle biopsy of the metastasized lymph node containing the necrotic cells. PET scan was the most relaxed I felt in the last week: 23 minutes where there was nothing I could do but lie there in God's hands. As for the biopsy, the pathologist was unable to get any cells (3 tries), just a lot of clear, yellowish fluid, more in line with a cyst than a tumor.  Both the pathologist and ENT were surprised.  Not sure what to think at this point. GDW - Your posts made my wife's day yesterday, and gave her hope where all hope seemed lost.  She LOVES this site, she said.  Continued thanks to everyone.  I hate to say but do NOT trust a needle biopsy. I had a lump come up on my neck, and my ENT took not one but two needle biopsies only to declare "not cancer." They thought it was simply a tumor in a gland I'd had trouble with for 25 years, and that it needed to be removed. I scheduled the surgery, and the day of, in the recovery room, I looked at the doctor and gestured "thumbs up?" He shook his head no. It WAS cancer, and it was a nasty one, adenoid cystic carcinoma. They got the gland, removed part of the nerve that some cancer had wrapped itself around, I went thru 6 weeks radiation - ACC doesn't respond to chemo. Now, two years later, thyroid was killed in the process, BUT I am joyfully cancer free. Bottom line, always consider a biopsy inconclusive. Page 3; it was confirmed by PET plus he's had a few other things done or is doing - Not a great day.  PET scan confirms that there is an active mass in the retropharynx area that has spread to lymph node(s).  The mass is probably the primary as the PET scan showed no other masses, so I guess that's a good thing.  Meeting with surgeon on Monday to talk and establish a game plan, the first step of which will likely be an exploration and biposy.  Roselvr Tue, 31 Jan 2012 00:00:00 GMT On Jan 30, 2012 10:49 PM beachadwriter wrote: OMG, thank God your senses knew better. I had gone to s regular MD prior to my lump coming up complaining of ear pain. He said, "Oh, it's just the bones in your ear." I am thinking  how have I gone through my first 50 years without ear bone pain? I knew something was wrong, and my ENT said the MD should have KNOWN there  was a tumor growing. Ear pain first sign of a tumor. Frightening. As I've heard declared, " That's why it's called PRACTICING medicine." How is your husband now? I am a year and half out and cancer free. Yayyyy!Beachadwriter ~ My husband just had his 1 year post treatment check up today and he is doing AWESOME!  There are really only two things that still remain from what we like to call "the cancer incident" :) ~ he has a little less salivia and he has an enhanced appreciation for life, what's important, and what's not.  A small price to pay we think.   Your story and his ~ it's just a testament to how we should always pay attention to our intuition and always trust our instincts.  No matter what doctors say, we must listen to our own bodies! Much love to you ~ and so glad to hear you are doing so well  ~ GDW GoldDustWoman Mon, 30 Jan 2012 00:00:00 GMT OMG, thank God your senses knew better. I had gone to s regular MD prior to my lump coming up complaining of ear pain. He said, "Oh, it's just the bones in your ear." I am thinking  how have I gone through my first 50 years without ear bone pain? I knew something was wrong, and my ENT said the MD should have KNOWN there  was a tumor growing. Ear pain first sign of a tumor. Frightening. As I've heard declared, " That's why it's called PRACTICING medicine." How is your husband now? I am a year and half out and cancer free. Yayyyy! beachadwriter Mon, 30 Jan 2012 00:00:00 GMT On Jan 30, 2012 10:19 PM beachadwriter wrote: On Jan 11, 2012 9:41 PM JohnnyO wrote: Went for the PET scan today, as well as a needle biopsy of the metastasized lymph node containing the necrotic cells. PET scan was the most relaxed I felt in the last week: 23 minutes where there was nothing I could do but lie there in God's hands. As for the biopsy, the pathologist was unable to get any cells (3 tries), just a lot of clear, yellowish fluid, more in line with a cyst than a tumor.  Both the pathologist and ENT were surprised.  Not sure what to think at this point. GDW - Your posts made my wife's day yesterday, and gave her hope where all hope seemed lost.  She LOVES this site, she said.  Continued thanks to everyone.  I hate to say but do NOT trust a needle biopsy. I had a lump come up on my neck, and my ENT took not one but two needle biopsies only to declare "not cancer." They thought it was simply a tumor in a gland I'd had trouble with for 25 years, and that it needed to be removed. I scheduled the surgery, and the day of, in the recovery room, I looked at the doctor and gestured "thumbs up?" He shook his head no. It WAS cancer, and it was a nasty one, adenoid cystic carcinoma. They got the gland, removed part of the nerve that some cancer had wrapped itself around, I went thru 6 weeks radiation - ACC doesn't respond to chemo. Now, two years later, thyroid was killed in the process, BUT I am joyfully cancer free. Bottom line, always consider a biopsy inconclusive. Yes, agree, the same thing happened to my husband.  Needle biopsy and CT scan showed "inconclusive" and doctors said "don't worry, it's likely not cancer, come back in 6 months.  Fortunately, he had a strong feeling he had to keep pushing and didn't wait 6 months to find his tonsil cancer, which could have easily spread to other parts of the body by then.  GoldDustWoman Mon, 30 Jan 2012 00:00:00 GMT On Jan 11, 2012 9:41 PM JohnnyO wrote: Went for the PET scan today, as well as a needle biopsy of the metastasized lymph node containing the necrotic cells. PET scan was the most relaxed I felt in the last week: 23 minutes where there was nothing I could do but lie there in God's hands. As for the biopsy, the pathologist was unable to get any cells (3 tries), just a lot of clear, yellowish fluid, more in line with a cyst than a tumor.  Both the pathologist and ENT were surprised.  Not sure what to think at this point. GDW - Your posts made my wife's day yesterday, and gave her hope where all hope seemed lost.  She LOVES this site, she said.  Continued thanks to everyone.  I hate to say but do NOT trust a needle biopsy. I had a lump come up on my neck, and my ENT took not one but two needle biopsies only to declare "not cancer." They thought it was simply a tumor in a gland I'd had trouble with for 25 years, and that it needed to be removed. I scheduled the surgery, and the day of, in the recovery room, I looked at the doctor and gestured "thumbs up?" He shook his head no. It WAS cancer, and it was a nasty one, adenoid cystic carcinoma. They got the gland, removed part of the nerve that some cancer had wrapped itself around, I went thru 6 weeks radiation - ACC doesn't respond to chemo. Now, two years later, thyroid was killed in the process, BUT I am joyfully cancer free. Bottom line, always consider a biopsy inconclusive.  beachadwriter Mon, 30 Jan 2012 00:00:00 GMT Hub just came from the oncologist. She said a few of the teams have moved around- people from Penn are going to work for Jefferson & people from Jefferson went to Penn. His radiation oncologist is at Penn. If you're lucky enough to have Dr Ahn; you're in very good hands. Roselvr Mon, 30 Jan 2012 00:00:00 GMT Wayne ... My name is Randall, liuving in Vancouver Canada and I too am a Christian. I am now 7 weeks post radiation and chemo treatment for SCC of the throat, tonsils. I agree with you 100% and can tell you with all the fibre of my being that I am closer to God now than I have ever been in my 17+ years of faith and following.In fact, I can't imagine going through anything like this without having faith in God. It is all that got me through this ordeal. I blogged my journey at www.ra-1life2live.blogspot.com and as I am still on this journey, I will continue to add to this blog over my recovery. I will pray for you recovery as well as JonnyO. Randall55 Mon, 30 Jan 2012 00:00:00 GMT JohnnyO my name is Wayne, I live in Texas. I just finished radiation treaments for SCC of the tounge. I have been a Christan for five years. This experience has brought me closer to God. With the support from my church with thier prayers I know I am going to be OK. Faith will bring you Hope. I will watch this message board and see how things go for you. I will pray  for you. DWayneG Mon, 30 Jan 2012 00:00:00 GMT On Jan 28, 2012 3:47 PM GoldDustWoman wrote: Removal of the tonsils does not prevent tonsil cancer.  My husband was diagnosed with tonsil cancer - his tonsils were removed at age 3.A. You are probably right (from your response) B. Its got to prevent a lot C. My daghter and I have always had colds, flu, strep throat. Both of use has dropped being sick by 90%   David Diamond_David Sat, 28 Jan 2012 00:00:00 GMT Removal of the tonsils does not prevent tonsil cancer.  My husband was diagnosed with tonsil cancer - his tonsils were removed at age 3. GoldDustWoman Sat, 28 Jan 2012 00:00:00 GMT I had one lymph node removed, out patient. It was cancerous, so they removed my tonsils, I think that was 1 day and I had no problems, age 59. My daughter at age 23 had her tonsils taken out, she had problems for 2 weeks. She did hers as a precaution. David Diamond_David Sat, 28 Jan 2012 00:00:00 GMT On Jan 27, 2012 7:46 PM Roselvr wrote: On Jan 27, 2012 1:07 PM JohnnyO wrote: Hey Rosel and GDW, thanks for suggesting to re-route the hpv discussion to the hpv thread.  (I came out out hpv+, btw) I know Pop-Pop had surgery, but I don't recall any others (this is a long thread). Did I miss someone?  For those of you who did NOT get surgery, why were you talked out of it, or was it even offered?   I'm told with this robotic surgery that I'm going to come out looking pretty normal (my neck will be slightly thinner on the one side with a nice long scar and skin numbing due to lymph node removal surgery), and within a few days after my surgery my feeding tube will be out and I will be working on swallowing with full swallowing and speaking virtually guaranteed.  No pec (peck?) tube ever.  I'm good with a scar, especially because the alternatives seem pretty severe and potentially long term:  No saliva, long-term feeding tubes, etc....  Worried that I might be missing something; the surgery sounds too good to be true. I don't understand putting the feeding tube in short term. My hub did not need it until 2nd week of radiation. The PEG tube is used when there is radiation to the neck/throat area involved. I assume you're saying that you will have radiation? If so; you could also possibly have the saliva issue depending on what's radiated What they did with my hub; when the surgery was done; they did pathology on it & knew that he would need radiation with chemo because of how it tested. We were told he could go local for chemo & rads but we chose not to because I was told not to by someone in the business that knows my area.The video linked below explains the feeding tube. As I mentioned; my hub had his tonsil out plus a radical neck dissection & did not use a feeding tube at all. His hospital stay was 24 hours. I don't know what's different between the 2 surgeries  - http://www.youtube.com/watch?v=cZr07xc3puU Mayo Clinic Study Finds Transoral Robotic Surgery Safe and Effective In Treating Some Throat Cancers A new Mayo Clinic study found that the use of transoral robotic surgery for the treatment of tonsil and base of tongue cancers is safe, effective and enables faster recovery times.The results of this research were even more positive than we expected. We found great advantages to using transoral robotic surgery for tonsil and base of tongue cancers, says Eric Moore, M.D. study author and a head and neck surgeon at Mayo Clinic in Rochester. There were no major complications, no tumor recurrence and, when compared to traditional surgeries, patients began swallowing on their own sooner and left the hospital sooner.Dr. Moore and his team performed transoral robotic surgery to remove tumors in 45 patients. The average hospital stay for these patients was 2.3 days, as compared with seven to 10 days for traditional surgery. Additionally,the removal of feeding tubes in patients undergoing transoral robotic surgery occurred an average of seven to 10 days after surgery, compared with two to three months for traditional surgery. Roselvr Sat, 28 Jan 2012 00:00:00 GMT On Jan 27, 2012 1:07 PM JohnnyO wrote: Hey Rosel and GDW, thanks for suggesting to re-route the hpv discussion to the hpv thread.  (I came out out hpv+, btw) I know Pop-Pop had surgery, but I don't recall any others (this is a long thread). Did I miss someone?  For those of you who did NOT get surgery, why were you talked out of it, or was it even offered?   I'm told with this robotic surgery that I'm going to come out looking pretty normal (my neck will be slightly thinner on the one side with a nice long scar and skin numbing due to lymph node removal surgery), and within a few days after my surgery my feeding tube will be out and I will be working on swallowing with full swallowing and speaking virtually guaranteed.  No pec (peck?) tube ever.  I'm good with a scar, especially because the alternatives seem pretty severe and potentially long term:  No saliva, long-term feeding tubes, etc....  Worried that I might be missing something; the surgery sounds too good to be true. I don't understand putting the feeding tube in short term. My hub did not need it until 2nd week of radiation. The PEG tube is used when there is radiation to the neck/throat area involved. I assume you're saying that you will have radiation? If so; you could also possibly have the saliva issue depending on what's radiated What they did with my hub; when the surgery was done; they did pathology on it & knew that he would need radiation with chemo because of how it tested. We were told he could go local for chemo & rads but we chose not to because I was told not to by someone in the business that knows my area. Roselvr Fri, 27 Jan 2012 00:00:00 GMT On Jan 27, 2012 7:01 PM JohnnyO wrote: nwwoman - I hear ya on not turning down any option offered.  But, for your own sanity, you have to believe that there is no evidence that the chemo affects the formation of distant mets.  If there were the slightest scientific evidence that it had such efficacy, your doc would have insisted on it.  If he offered it to you as an option, he offered it only for the reason that your are now facing: to give you the feeling that you did everything possible.  In fact, you DID do everything possible.  None of the survivors here can tell you with any certainty whatsoever that their lack of distant mets is because they got the chemo.  None of them.  You did everything right, and you got the bonus of your husband suffering a little less than he otherwise would have.nwwoman ~ I just wanted to add more support to John's words here.  He is absolutely right, you and your husband did everything possible.  Certainly one of the many mysteries of life is why this disease attacks some and not others, why some are cured and some are not.  Please do not second guess yourself now.  There is no evidence that if you did anything differently the outcome would have been different.  I too am so very sorry for your loss.  What happened to you and your husband is our worst fear ~ and the reality is it can happen to any one of us at any moment with or without cancer.  I wish you comfort and peace as you journey through this very difficult and painful time. Much love ~ GDW GoldDustWoman Fri, 27 Jan 2012 00:00:00 GMT On Jan 27, 2012 1:07 PM JohnnyO wrote: Hey Rosel and GDW, thanks for suggesting to re-route the hpv discussion to the hpv thread.  (I came out out hpv+, btw) I know Pop-Pop had surgery, but I don't recall any others (this is a long thread). Did I miss someone?  For those of you who did NOT get surgery, why were you talked out of it, or was it even offered?   I'm told with this robotic surgery that I'm going to come out looking pretty normal (my neck will be slightly thinner on the one side with a nice long scar and skin numbing due to lymph node removal surgery), and within a few days after my surgery my feeding tube will be out and I will be working on swallowing with full swallowing and speaking virtually guaranteed.  No pec (peck?) tube ever.  I'm good with a scar, especially because the alternatives seem pretty severe and potentially long term:  No saliva, long-term feeding tubes, etc....  Worried that I might be missing something; the surgery sounds too good to be true. Hi Johnny, Preliminary survival outcomes for robotic surgery inside the oral cavity look promising. A recent study showed those who had TORS for tonsil Ca followed by chemorad were close to 90% at 5y. On the other hand, there does not seem to be a benefit either way for neck dissection or not before chemorad, so many centers are not doing it due to the risk of longterm issues. The lack of saliva, possible need for a feeding tube you're talking about is related to radiation treatment. I would think you are getting rads because surgery alone can miss microscopic cells especially when lymph nodes are affected. Recurrence is much higher without rads. I might be misinterpretting your post but radiation is the main treatment for H&N SCC, everything else is usually secondary and varies depending on the facility. Anyways, I hope whatever side effects you get are minimal and you make a speedy recovery. RogerRN43 Fri, 27 Jan 2012 00:00:00 GMT On Jan 27, 2012 5:30 PM nwwoman wrote: He had surgery October 26, 2010, one week after diagnosis and three weeks after primary doc referred him quickly to ENT. We were told the same thing as you -- and the decision was ours.  I realize that anecedotal data is not scientifically valid but there are simply too many examples right on this site where those who have survived had chemo at the onset.   Evidence or not, if it's available, I'd do it and not take the chance that all the big guns are pulled out to warrior against it. But then again, I just finished living a year with my best friend, the other half of me, as he/we went from shock at diagnosis, trust that all would be well in the end, tears and more shock when the mets appeared and more tears during the dying process -- all from an alpha male/man's man who did not do tears.  So, yep, I'm beating myself up that I know more now than I did when we started -- and lesson learned by me is to be very proactive, read all of the journal articles you can find, and use any gun you are offered. Chemo is much more tolerable these days than in decades past.  No, it's not ice cream but upchucking and other intolerable aspects are now controlled.  I'm sure he'd do it in a flash if he was given a second chance. I'm so sorry for your loss & everything you've been through. Can I ask where he was treated? Was it a university hospital / cancer center or local? ~Hugs Roselvr Fri, 27 Jan 2012 00:00:00 GMT nwwoman - I hear ya on not turning down any option offered.  But, for your own sanity, you have to believe that there is no evidence that the chemo affects the formation of distant mets.  If there were the slightest scientific evidence that it had such efficacy, your doc would have insisted on it.  If he offered it to you as an option, he offered it only for the reason that your are now facing: to give you the feeling that you did everything possible.  In fact, you DID do everything possible.  None of the survivors here can tell you with any certainty whatsoever that their lack of distant mets is because they got the chemo.  None of them.  You did everything right, and you got the bonus of your husband suffering a little less than he otherwise would have. JohnnyO Fri, 27 Jan 2012 00:00:00 GMT On Jan 27, 2012 5:30 PM nwwoman wrote: He had surgery October 26, 2010, one week after diagnosis and three weeks after primary doc referred him quickly to ENT. We were told the same thing as you -- and the decision was ours.  I realize that anecedotal data is not scientifically valid but there are simply too many examples right on this site where those who have survived had chemo at the onset.   Evidence or not, if it's available, I'd do it and not take the chance that all the big guns are pulled out to warrior against it. But then again, I just finished living a year with my best friend, the other half of me, as he/we went from shock at diagnosis, trust that all would be well in the end, tears and more shock when the mets appeared and more tears during the dying process -- all from an alpha male/man's man who did not do tears.  So, yep, I'm beating myself up that I know more now than I did when we started -- and lesson learned by me is to be very proactive, read all of the journal articles you can find, and use any gun you are offered. Chemo is much more tolerable these days than in decades past.  No, it's not ice cream but upchucking and other intolerable aspects are now controlled.  I'm sure he'd do it in a flash if he was given a second chance. I had cehcmo and Radiation. Radiation made me sick. Checmo did very little. Brave people don't a feeding tube. Brave people who don't lose a ton of weight.   Smart people get teh tube. Its not a big to do.   David Diamond_David Fri, 27 Jan 2012 00:00:00 GMT He had surgery October 26, 2010, one week after diagnosis and three weeks after primary doc referred him quickly to ENT. We were told the same thing as you -- and the decision was ours.  I realize that anecedotal data is not scientifically valid but there are simply too many examples right on this site where those who have survived had chemo at the onset.   Evidence or not, if it's available, I'd do it and not take the chance that all the big guns are pulled out to warrior against it. But then again, I just finished living a year with my best friend, the other half of me, as he/we went from shock at diagnosis, trust that all would be well in the end, tears and more shock when the mets appeared and more tears during the dying process -- all from an alpha male/man's man who did not do tears.  So, yep, I'm beating myself up that I know more now than I did when we started -- and lesson learned by me is to be very proactive, read all of the journal articles you can find, and use any gun you are offered. Chemo is much more tolerable these days than in decades past.  No, it's not ice cream but upchucking and other intolerable aspects are now controlled.  I'm sure he'd do it in a flash if he was given a second chance. nwwoman Fri, 27 Jan 2012 00:00:00 GMT On Jan 27, 2012 1:07 PM JohnnyO wrote: Hey Rosel and GDW, thanks for suggesting to re-route the hpv discussion to the hpv thread.  (I came out out hpv+, btw) I know Pop-Pop had surgery, but I don't recall any others (this is a long thread). Did I miss someone?  For those of you who did NOT get surgery, why were you talked out of it, or was it even offered?   I'm told with this robotic surgery that I'm going to come out looking pretty normal (my neck will be slightly thinner on the one side with a nice long scar and skin numbing due to lymph node removal surgery), and within a few days after my surgery my feeding tube will be out and I will be working on swallowing with full swallowing and speaking virtually guaranteed.  No pec (peck?) tube ever.  I'm good with a scar, especially because the alternatives seem pretty severe and potentially long term:  No saliva, long-term feeding tubes, etc....  Worried that I might be missing something; the surgery sounds too good to be true. Hi Johnny ~ You asked about why not surgery for those who didn't have it.  My husband's doctors viewed it as an absolute last resort due to what they called quality of life issues afterward.  However, I do believe those quality of life issues were related to traditional surgery, not the robotic surgery, since we would have to travel for it.  (Which we would have absolutely done if that was their recommendation.)  In my husband's case chemo and radiation was recommended for the same reason others mentioned - the chance that one lone cancer cell that a PET scan can't see may have escaped into the body.  We were just not willing to take that chance.  The cure rate is so high with chemo and radiation we just felt it was worth the difficulty in the treatment to have the best chance at those years together we've been planning on!   There's another factor that weighed into what was for us an easy decision to go the chemo/radiation route.  My husband's sister is an oncology nurse and worked directly with both of our doctors, as well as the doctors who perform the traditional surgery.  And ~ by strange coincidence ~ in prepartion for going into a PhD program, our daughter sought out a job in research.  It didn't matter what research it was and she wasn't looking to do cancer research - she just needed to have worked as a research assistant to have a better chance of being accepted into this program.  So after many job applications (this was in 2008/09, long before cancer entered our lives) she was finally offered a job.  The doctor she would be assisting?  Chair of head/neck cancer research at the local university hospital.  (It was actually a horrible job, but we later learned why it was brought into her life, didn't we?)  Anyway, so beyond our doctor's recommendations we had two loved ones who had seen head/neck cancer, it's treatment and results first hand.  Based on their feedback there was no way we were not going the chemo route - again being fearful of that one lone cell that might show up later.  But, with all of this said, my husband's cancer was tonsil based and I think that's where the quality of life issues came into play.  His tonsils had long ago been removed, so the reality was there wasn't much tissue left to take.  The traditional surgery was just too invasive (we didn't ask for the details into how invasive, but from what we did know it wasn't like you are describing) and didn't provide that extra protection throughout the rest of the body.  Much love ~ GDW   GoldDustWoman Fri, 27 Jan 2012 00:00:00 GMT Hi nw woman - So sorry about your husband.  I was told about the metastatic odds yesterday; good odds, but they do sneak through, and that, of course, is my biggest fear at this point.  I'm told that they sometimes do the chemo treatments after surgery in conjunction with radiation, but they claim there's really no evidence that these have any effect on distant metastases anyway, so I don't think you should beat yourself up over not having the chemo earlier on. I'm curious about how much time transpired from the time that your husband identified he had an issue and the time that he had his surgery.  I assume he had a PET scan at some point prior to treatment?  We've been moving at lightning speed (by hospital standards anyway), essentially ignoring the docs who wanted us to wait and see if the lymph node would shrink, and pushing for appointments for "tomorrow" instead of "two weeks from now."  Get this: Right before Christmas my family doc told me to schedule with an ENT.  The first place we called couldn't see me until January 26th (yesterday!); the second place we called couldn't see us until January 11th (and we scheduled with them), and we called on January 2nd to see if any appointments opened up, and one did, on January 3rd! So, as of the 26th, I was scheduling my surgery instead of having my first ENT visit.  I actually could have had the surgery today, but it just felt too fast. So, my advice to others out there is to be diligent in getting your appointments as soon as you can; maybe it won't make a difference, but maybe it will.  You don't want to look back and regret that you didn't act aggressively enough.  Begging and pleading, as opposed to demanding and screaming, seem to work best for us.  Nothing is too demeaning when your or a loved-one's life is at risk. JohnnyO Fri, 27 Jan 2012 00:00:00 GMT I'm sure I'm horribly biased in my opinion because my 58-year-old otherwise healthy husband died 8 weeks ago from tonsil cancer (squamous) which at diagnosis only one year ago had spread to only one lymph node.  He was told he had an excellent chance of being cured.  He was treated with surgery and radiation.  He was even restaged to a lower number following surgery.  Twelve weeks after surgery, they discovered his lung had mets -- 21 sites, amazingly enough.  He began chemo but was told he was no longer curable.  After being told it can take only one cancer cell to escape into the body and that this form of cancer is very aggressive, my thinking now is that he should have had it all at the start -- even though one malignant node is considered very early stage in spread to neck.  By "all," I mean surgery, radiation and chemo -- right at the get-go.  Just one cell in my book is one cell too many. And chemo is systemic as opposed to the other treatments which are site specific. I know there are others who may disagree with me and others who have been cured without this, but in our instance, my husband was told that he was extremely healthy...he was not on any meds for any other condition...never even got colds or flus...  did not smoke...did not drink.. and one year after diagnosis, he is gone.  I just wouldn't take the chance.  Once it spreads, it's not a good thing at all. You stay optimistic, healthy and do all you can to beat this damn cancer. nwwoman Fri, 27 Jan 2012 00:00:00 GMT On Jan 27, 2012 1:07 PM JohnnyO wrote: Hey Rosel and GDW, thanks for suggesting to re-route the hpv discussion to the hpv thread.  (I came out out hpv+, btw) I know Pop-Pop had surgery, but I don't recall any others (this is a long thread). Did I miss someone?  For those of you who did NOT get surgery, why were you talked out of it, or was it even offered?   I'm told with this robotic surgery that I'm going to come out looking pretty normal (my neck will be slightly thinner on the one side with a nice long scar and skin numbing due to lymph node removal surgery), and within a few days after my surgery my feeding tube will be out and I will be working on swallowing with full swallowing and speaking virtually guaranteed.  No pec (peck?) tube ever.  I'm good with a scar, especially because the alternatives seem pretty severe and potentially long term:  No saliva, long-term feeding tubes, etc....  Worried that I might be missing something; the surgery sounds too good to be true. Johnny; My hub had surgery- radical neck dissection by Dr Keane at Jefferson. My hubs neck is fine; you can't see his scar; Dr Keane put the cut in a skin crease. I have photos & can share via email. We're very happy with the healing; Dr Keane did a really great job; he has no pains from nerves; etc being cut; some here do have nerve pain years later. My hub took saliva pills till about 1 1/2 years out. The only pill he is left with is like Nexium due to the feeding tube. I don't understand putting the feeding tube in short term. My hub did not need it until 2nd week of radiation. He did not use it after the big surgery. Send me a message if you want my email. Roselvr Fri, 27 Jan 2012 00:00:00 GMT Hey Rosel and GDW, thanks for suggesting to re-route the hpv discussion to the hpv thread.  (I came out out hpv+, btw) I know Pop-Pop had surgery, but I don't recall any others (this is a long thread). Did I miss someone?  For those of you who did NOT get surgery, why were you talked out of it, or was it even offered?   I'm told with this robotic surgery that I'm going to come out looking pretty normal (my neck will be slightly thinner on the one side with a nice long scar and skin numbing due to lymph node removal surgery), and within a few days after my surgery my feeding tube will be out and I will be working on swallowing with full swallowing and speaking virtually guaranteed.  No pec (peck?) tube ever.  I'm good with a scar, especially because the alternatives seem pretty severe and potentially long term:  No saliva, long-term feeding tubes, etc....  Worried that I might be missing something; the surgery sounds too good to be true. JohnnyO Fri, 27 Jan 2012 00:00:00 GMT I copied over every reply; please bring this discussion to the HPV post. Thanks http://www.cancercompass.com/message-board/message/all,62645 Roselvr Thu, 26 Jan 2012 00:00:00 GMT On Jan 26, 2012 8:55 PM Roselvr wrote: Guys; lets not turn this thread into an HPV thread. He didn't even ask for HPV information; he has no clue if his cancer will test positive.The "" target="_blank" rel="nofollow">http://positive.The " target="_blank" rel="nofollow">positive.The information was for a questions for the doctor- that's it. I also posted it as it's own post & if you'd like to continue this conversation in my thread; feel free or add it to the HPV post we already have. He can go read it in one of the other posts if he actually needs it.Roselvr ~ you beat me to it ~ I was just going to post that this is Johnny's thread and I don't want it to turn it into another discussion!  We got a little off track there with our passions.  Thank you my friend for bringing us back ~ Much love ~ GDW GoldDustWoman Thu, 26 Jan 2012 00:00:00 GMT Guys; lets not turn this thread into an HPV thread. He didn't even ask for HPV information; he has no clue if his cancer will test positive.The information was for a questions for the doctor- that's it. I also posted it as it's own post & if you'd like to continue this conversation in my thread; feel free or add it to the HPV post we already have. He can go read it in one of the other posts if he actually needs it. Roselvr Thu, 26 Jan 2012 00:00:00 GMT On Jan 26, 2012 8:25 PMGoldDustWomanwrote: On Jan 26, 2012 7:59 PMErthWlkrwrote: GDW - Always great posts and very supportive - thanks for putting in the time and effort! If I can just add to what you say - HPV can go dormant for many years. That's a quality of the virus - similar to herpes zoster, which can reactivate many years after an initial infection of chicken pox and then surface as shingles or Bell's Palsy for example. In your case, you may have been infected but your body cleared it. But not in your husband's case. Different people, different genetics, different immune systems. Whether you were infected or not will never be known. What activates or reactivates the virus can only be guessed at. Most certainly if the immune system is suppressed by illness or injury, the risk of activation increases. But what actually is the key, what is the "inciting" factor, is unknown. Otherwise, we would find some way to block the keyway entrance and prevent activation. Similar to breaking a key inside of a lock so another key won't enter it to open the doorway. Why it attack oral areas is just another particular quality of this particular viral strain of HPV-16 or 18. Keys fitting locks. Cancer is at once terrifying and incredibly fascinating. Given nourishment, a tumor can grow and live forever. The causes of cancer can be drilled all the way down to the particular genetic code of the particular person it infects. Recently yet another genetic biomarker was discovered that can aid in developing the treatment plan ( http://tinyurl.com/7pv6j9j "" target="_blank" There are many more discoveries and advances to come - and hopefully treatments that won't beat us up as badly as chemo and radiation do. Onward we go - wishing you all continued recoveries and long lasting health! - Jeff Jeff ~ Thanks for your very imformative post and contribution to my mission to educate people about what HPV is - and more importantly - what it isn't.  You know, I asked a local news anchor to do a story on the epidemic of HPV related throat cancers we're seeing in men in their 50s.  (That statement comes from our ENT, he used to see 1 or 2 a month.  In the last 7 years, he sees about 5 a week!)  My intent was to get the message out there to: 1. Make people aware and give them information about the disease and treatment - until my husband got it no one we knew had ever even heard of tonsil cancer except in heavy smokers/drinkers- there's misconception number 1! 2. Help reduce the stigma of HPV as and "STD" and all of the misinformation around it - so people can make informed decisions about the vaccine - not decisions based on some crazy notion of protecting against HPV is like encouraging underage sexual behaviors, and 3.  Help anyone who's out there dealing with it to understand it is nothing to be embarrassed about. And people are.  Can't tell you how many times people would say to us "throat cancer?! Is Mark a smoker!?" You know, like somehow if he was a smoker, well then he got what was coming to him, right?  I'd always respond with "no, Mark has never smoked.  His cancer is virus based, HPV, just like cervical cancer in women."  You should see their faces.  Nobody wants to talk about it.  I say we talk about it!  Anyway, the local anchor I know - she wouldn't touch the story.  Too controversial.  Didn't want to put out there that a respected local businessman had an STD that caused cancer.  So you get my point.  Ignorance, misinformation and judgement will continue to plague us for now.  Maybe someone famous will come forward and make a difference - it seems that's what it takes sometimes. Thanks for listening all!  Much love ~ GDW dear gdw information is what we all need, i support your knowledge, good luck, debra hollis40 Thu, 26 Jan 2012 00:00:00 GMT On Jan 26, 2012 8:43 PM Diamond_David wrote: On Jan 26, 2012 8:09 PM GoldDustWoman wrote: Hi David, Thanks for your reply.  I was not referring to all cancers - I was just making the point that HPV based tonsil or throat cancer doesn't occur just because one has had oral sex with an HPV infected person.  It's much more complicated than that.  And I get concerned when people attach a stigma to HPV related cancer - like somehow if you are a "good person" and make "moral" life choices you are safe from this virus. No one on this thread is attaching that stigma to HPV so I wasn't directing that comment to anyone here in our discussion. I was thinking of comments I see elsewhere and worse yet, the way the current epidemic of this virus is sometimes presented in the media.  Just doing a little venting.  :) Much love ~ GDW  GDW   the article I read was I think from a cancer or doctor email service. They expect by 2020 ORAL cancer to exceed cervical cancer in numbers of patients.   Oral cancer in teenagers is on the rise because the believe (as Bill Clinton does) that oral sex is not sex. DavidI had not heard or read that oral cancer is on the rise in teenagers.  Do you have the link to that article?  I'd like to read it. GoldDustWoman Thu, 26 Jan 2012 00:00:00 GMT On Jan 26, 2012 8:09 PM GoldDustWoman wrote: Hi David, Thanks for your reply.  I was not referring to all cancers - I was just making the point that HPV based tonsil or throat cancer doesn't occur just because one has had oral sex with an HPV infected person.  It's much more complicated than that.  And I get concerned when people attach a stigma to HPV related cancer - like somehow if you are a "good person" and make "moral" life choices you are safe from this virus. No one on this thread is attaching that stigma to HPV so I wasn't directing that comment to anyone here in our discussion. I was thinking of comments I see elsewhere and worse yet, the way the current epidemic of this virus is sometimes presented in the media.  Just doing a little venting.  :) Much love ~ GDW  GDW   the article I read was I think from a cancer or doctor email service. They expect by 2020 ORAL cancer to exceed cervical cancer in numbers of patients.   Oral cancer in teenagers is on the rise because the believe (as Bill Clinton does) that oral sex is not sex. David Diamond_David Thu, 26 Jan 2012 00:00:00 GMT On Jan 26, 2012 7:59 PM ErthWlkr wrote: GDW - Always great posts and very supportive - thanks for putting in the time and effort! If I can just add to what you say - HPV can go dormant for many years. That's a quality of the virus - similar to herpes zoster, which can reactivate many years after an initial infection of chicken pox and then surface as shingles or Bell's Palsy for example. In your case, you may have been infected but your body cleared it. But not in your husband's case. Different people, different genetics, different immune systems. Whether you were infected or not will never be known. What activates or reactivates the virus can only be guessed at. Most certainly if the immune system is suppressed by illness or injury, the risk of activation increases. But what actually is the key, what is the "inciting" factor, is unknown. Otherwise, we would find some way to block the keyway entrance and prevent activation. Similar to breaking a key inside of a lock so another key won't enter it to open the doorway. Why it attack oral areas is just another particular quality of this particular viral strain of HPV-16 or 18. Keys fitting locks. Cancer is at once terrifying and incredibly fascinating. Given nourishment, a tumor can grow and live forever. The causes of cancer can be drilled all the way down to the particular genetic code of the particular person it infects. Recently yet another genetic biomarker was discovered that can aid in developing the treatment plan ( http://tinyurl.com/7pv6j9j "" target="_blank" rel="nofollow">http://tinyurl.com/7pv6j9j " target="_blank" rel="nofollow">http://tinyurl.com/7pv6j9j ). There are many more discoveries and advances to come - and hopefully treatments that won't beat us up as badly as chemo and radiation do. Onward we go - wishing you all continued recoveries and long lasting health! - JeffJeff ~ Thanks for your very imformative post and contribution to my mission to educate people about what HPV is - and more importantly - what it isn't.  You know, I asked a local news anchor to do a story on the epidemic of HPV related throat cancers we're seeing in men in their 50s.  (That statement comes from our ENT, he used to see 1 or 2 a month.  In the last 7 years, he sees about 5 a week!)  My intent was to get the message out there to: 1. Make people aware and give them information about the disease and treatment - until my husband got it no one we knew had ever even heard of tonsil cancer except in heavy smokers/drinkers- there's misconception number 1! 2. Help reduce the stigma of HPV as and "STD" and all of the misinformation around it - so people can make informed decisions about the vaccine - not decisions based on some crazy notion of protecting against HPV is like encouraging underage sexual behaviors, and 3.  Help anyone who's out there dealing with it to understand it is nothing to be embarrassed about. And people are.  Can't tell you how many times people would say to us "throat cancer?! Is Mark a smoker!?" You know, like somehow if he was a smoker, well then he got what was coming to him, right?  I'd always respond with "no, Mark has never smoked.  His cancer is virus based, HPV, just like cervical cancer in women."  You should see their faces.  Nobody wants to talk about it.  I say we talk about it!  Anyway, the local anchor I know - she wouldn't touch the story.  Too controversial.  Didn't want to put out there that a respected local businessman had an STD that caused cancer.  So you get my point.  Ignorance, misinformation and judgement will continue to plague us for now.  Maybe someone famous will come forward and make a difference - it seems that's what it takes sometimes. Thanks for listening all!  Much love ~ GDW GoldDustWoman Thu, 26 Jan 2012 00:00:00 GMT Hi David, Thanks for your reply.  I was not referring to all cancers - I was just making the point that HPV based tonsil or throat cancer doesn't occur just because one has had oral sex with an HPV infected person.  It's much more complicated than that.  And I get concerned when people attach a stigma to HPV related cancer - like somehow if you are a "good person" and make "moral" life choices you are safe from this virus. No one on this thread is attaching that stigma to HPV so I wasn't directing that comment to anyone here in our discussion. I was thinking of comments I see elsewhere and worse yet, the way the current epidemic of this virus is sometimes presented in the media.  Just doing a little venting.  :) Much love ~ GDW   GoldDustWoman Thu, 26 Jan 2012 00:00:00 GMT GDW - Always great posts and very supportive - thanks for putting in the time and effort! If I can just add to what you say - HPV can go dormant for many years. That's a quality of the virus - similar to herpes zoster, which can reactivate many years after an initial infection of chicken pox and then surface as shingles or Bell's Palsy for example. In your case, you may have been infected but your body cleared it. But not in your husband's case. Different people, different genetics, different immune systems. Whether you were infected or not will never be known. What activates or reactivates the virus can only be guessed at. Most certainly if the immune system is suppressed by illness or injury, the risk of activation increases. But what actually is the key, what is the "inciting" factor, is unknown. Otherwise, we would find some way to block the keyway entrance and prevent activation. Similar to breaking a key inside of a lock so another key won't enter it to open the doorway. Why it attack oral areas is just another particular quality of this particular viral strain of HPV-16 or 18. Keys fitting locks. Cancer is at once terrifying and incredibly fascinating. Given nourishment, a tumor can grow and live forever. The causes of cancer can be drilled all the way down to the particular genetic code of the particular person it infects. Recently yet another genetic biomarker was discovered that can aid in developing the treatment plan ( http://tinyurl.com/7pv6j9j ). There are many more discoveries and advances to come - and hopefully treatments that won't beat us up as badly as chemo and radiation do. Onward we go - wishing you all continued recoveries and long lasting health! - Jeff ErthWlkr Thu, 26 Jan 2012 00:00:00 GMT RE: "And they don't really know why when it does wreak havoc it attacks the tonsils or base of tongue. (And contrary to popular belief, it does NOT attack the throat because of oral sex!)  "   If you're talking about ONLY the throat and not tonsils and tongue, OK.   But if you're saying ALL cancer of teh mouth is not because of oral sex I've seen reports by known good hospital authorites  that say different.   David Diamond_David Thu, 26 Jan 2012 00:00:00 GMT On Jan 26, 2012 5:48 PM JohnnyO wrote: Hi everyone! Just had my follow-up with the surgeon.  Some things that many here might find interesting: 1.  There are essentially 2 schools of thought regarding how best to treat squamous cell carinomas: surgery plus radiation and maybe chemo, and radiation and chemo, no surgery.  There are no head-to-head comparisons of these two treatments in the literature, and the docs on each side believe strongly in their treatment over the other. 2.  If proton therapy (a promising, targeted low-dose radiation treatment) is being used on head/neck cancers, it is in its infancy and doesn't make sense at this point to opt for it, even if you could get into a trial, because the other treatments have had such good success. 3.  For those who asked (not sure what the policy is here for mentioning docs and hospitals by name), my primary care doc is one of the two guys who spearheaded the use of the TORS robotic system for head/neck cancers.  If I opt for surgery, both of those guys will be participating.  For those contemplating surgery, look it up, it's probably going to be the gold standard for these type of cancers, certainly the surgical gold standard. As a guy who needs to know all options, I am planning on making a trip to the Big Apple to speak to a radiation "guru" who, according to my surgeon, is likely going to take the anti-surgery position.  5.  Notwithstanding the fact that I'm going to speak to the radiation oncologist in NY, I am signed up for robotic surgery for the end of next week to get the small SCC lesion at the base of my tongue, and to remove what is most likely an enlarged lymph node behind my throat (very, very rare).  The surgery is somewhat exploratory in nature as they couldn't see everything during the endoscopy, and I'll only know exactly what was done after it is over.  Maybe more complex, maybe not.  Prayers appreciated. 6.  Got a call from the GI doctor who found the mass in my rectum which was likely a maligant T2.  Biopsy came out negative with no evidence of dysplasia.  Gotta take it out, but chances are it's just a big 'ol polyp!  How freakin' wierd is that!  Prayers are working, my friends; I believe that. Those of you in the infancy of your diagnosis, feel free to private message me, and I can maybe help you make some decisions.  I'm a lucky, insured, patient who happened to find some heavy hitters in the field who have taken an interest in me. Love and thanks to all - Johnnyo Johnny ~ This is all good news!  When I was reading your words about the doctors who developed the robotic surgery I was like "Wow!  Those are the same doctors our oncologist told us about!"  Amazing! Remember in one of my first posts I talked about how fearful my husband was at first?  And how I told him everything happens for a reason.  But you're not going through this because your time here is up.  You're going through this because when you're done, you're supposed to help someone else.  There can be many reasons we are sent on the paths we find ourselves on. Well my friend, I think you just found one of your reasons.  Who knows how many others you have helped - or will help in the future - with the knowledge you just shared today.  Thank you. Those prayers will keep coming for you, your wife, and your children ~ for your full recovery and for strength while you go on this journey together.  You are going to be fine.  :) Much love ~ GDW GoldDustWoman Thu, 26 Jan 2012 00:00:00 GMT Roselvr gives some good advice here ~ *Note- If HPV positive in male; female may want to see her GYN to have an HPV test. Males can not be tested for HPV. HPV can be carried for 30 years After my husband's diagnosis, I asked my ob/gyn about the HPV test.  Some women may believe that it is routinely done with a pap smear.  It is not.  It is a separate test and in most cases must be requested.  She and I discussed how it didn't really matter what the results of my test were because if it was positive, there was no way to treat it anyway.  I was already aware of that before I asked her about it, and honestly I assumed I would test positive since my husband did, afterall we've been faithfully together for 30+ years.  And Roselvr is right, it can live in the body for that long, just hanging out, not wreaking havoc- maybe because our immune systems keep it at bay?  They don't know for sure.  And they don't really know why when it does wreak havoc it attacks the tonsils or base of tongue. (And contrary to popular belief, it does NOT attack the throat because of oral sex!)  My theory is that when my husband acquired a bone infection after foot surgery, which went undetected for almost a month, his immune system was severly weakened.  While it was busy fighting that infection, HPV was just waiting there to attack.  Hello cancer.  My doctor and I decided to do the test, just because we were both curious of what the result would be.  I told her that I expected it to be positive and I wasn't the least bit worried about it - so to make a note for her staff that they didn't need to tippytoe around the news when the delivered the result - they could leave it on my answering machine for all I cared! :)  But guess what - it was negative.  Just more proof that there is plenty they do not know about this virus, how it lives in the body, how it's transmitted, and why it does what it does.      GoldDustWoman Thu, 26 Jan 2012 00:00:00 GMT Johnny; go see Dr Keane too. As I mentioned; it was thought my hub had more but Dr Keane said no & did all one surgery (no extra biopsies) with no consequenses. No neck pain from surgery; no scar; & he has saliva which is not common. Most take pills. I assume you went to Penn? Roselvr Thu, 26 Jan 2012 00:00:00 GMT Hi everyone! Just had my follow-up with the surgeon.  Some things that many here might find interesting: 1.  There are essentially 2 schools of thought regarding how best to treat squamous cell carinomas: surgery plus radiation and maybe chemo, and radiation and chemo, no surgery.  There are no head-to-head comparisons of these two treatments in the literature, and the docs on each side believe strongly in their treatment over the other. 2.  If proton therapy (a promising, targeted low-dose radiation treatment) is being used on head/neck cancers, it is in its infancy and doesn't make sense at this point to opt for it, even if you could get into a trial, because the other treatments have had such good success. 3.  For those who asked (not sure what the policy is here for mentioning docs and hospitals by name), my primary care doc is one of the two guys who spearheaded the use of the TORS robotic system for head/neck cancers.  If I opt for surgery, both of those guys will be participating.  For those contemplating surgery, look it up, it's probably going to be the gold standard for these type of cancers, certainly the surgical gold standard. As a guy who needs to know all options, I am planning on making a trip to the Big Apple to speak to a radiation "guru" who, according to my surgeon, is likely going to take the anti-surgery position.  5.  Notwithstanding the fact that I'm going to speak to the radiation oncologist in NY, I am signed up for robotic surgery for the end of next week to get the small SCC lesion at the base of my tongue, and to remove what is most likely an enlarged lymph node behind my throat (very, very rare).  The surgery is somewhat exploratory in nature as they couldn't see everything during the endoscopy, and I'll only know exactly what was done after it is over.  Maybe more complex, maybe not.  Prayers appreciated. 6.  Got a call from the GI doctor who found the mass in my rectum which was likely a maligant T2.  Biopsy came out negative with no evidence of dysplasia.  Gotta take it out, but chances are it's just a big 'ol polyp!  How freakin' wierd is that!  Prayers are working, my friends; I believe that. Those of you in the infancy of your diagnosis, feel free to private message me, and I can maybe help you make some decisions.  I'm a lucky, insured, patient who happened to find some heavy hitters in the field who have taken an interest in me. Love and thanks to all - Johnnyo JohnnyO Thu, 26 Jan 2012 00:00:00 GMT Those not knowing what to ask; you can use these as a base to add or edit to fit your diagnosis 1. We know the cancer is Squamous Cell Carcinoma. It was in his right tonsil, right neck and lymph nodes. Are there any other sites (from PET Scan) that show cancer? 2. The cancer in the Lymph Nodes is it also Squamous Cell Carcinoma or is it considered Lymphoma? 3. There are various types of head/neck cancer. Exactly what type of cancer is this so that I can look it up? (example – is it throat?) 4. Is the cancer HPV positive & if so which type of HPV? *Note- more than likely, they can't answer this for a few weeks...usually the biopsy is sent out to differing lab & may take 2-3 weeks before it came back HPV+. 5. How often do you see this type & how many have you treated with my type and location of Cancer? *Note- If not experience ask if there is someone at that location that he would recommend 6. Is his cancer curable? 7. What are the survival rates? 5 year, long term? 8. What are the chances of recurrence or new cancer? 9. We know that he is going to have Chemotherapy and Radiation; can you tell us what Chemotherapy drugs you will use? 10. Will the chemo and radiation be done at the same time? 11. Will he be hospitalized at any point for Chemo/Radiation; or will it be done as an outpatient? 12. Will the Chemo drugs be given by mouth or IV? *Note- you might also add the power port to your method of delivery. 13. What is the approx. recovery time & What do you feel are the most common side effects I can most likely expect? 14. What are his other options for treatment? 15. Will you change the treatment if he is not responding? 16. Is there a clinical trial for this type(s) of cancer? 17. If clinical trial, ask what phase. Also ask if it’s randomized and if placebo given. 18. When the cancer was biopsied, did they do Genetic Tumor Profiling to see if he can do targeted chemotherapy? 19. What type of radiation will he need? How many radiation sessions? A. Do you offer Tomotherapy or Cyber Knife? 20. Can we have a copy of the pathology report and copies of protocol? 21. What is the histology & cell type of the tumor? 22. What is his current prognosis? 23. What is the 5 year prognosis? 24. Does he have any bad prognosis factors? 25. Is follow-up treatment necessary? What does it involve? 26. Will I need a feeding tube and what type of Dr do we need to care for it? *Note- Some use a general surgeon; while others use a gastro 27. We would like to see a nutritionist; do you have someone you can recommend? 28. How do you feel about complimentary therapy such as Vitamin C drips? 29. Will you be the one managing any pain he has? 30. Will I have to come to the office to pick up prescriptions if there is a pain medication change? 31. Since we live in another state, should we look for a pain management Dr in our area? 32. He has been having problems sleeping. Are you able to prescribe something for him to sleep? 33. Do you have a dentist the specializes in evaluating my teeth before treatment starts? *Note- radiation is damaging to the jaw/teeth; some will need teeth extracted & should be evaluated by a dentist that knows what to look for. 34. Do you use a speech pathologist on your team? If not we need to get one that has had radiation experience of the head and neck 35. Do you have a Social Worker that can help me with financial aid and or short or long term disability help? *Note- If HPV positive in male; female may want to see her GYN to have an HPV test. Males can not be tested for HPV. HPV can be carried for 30 years Roselvr Thu, 26 Jan 2012 00:00:00 GMT Just read your post. I can tell you that I am now 7 weeks post treatment for Squamous Cell Carcinoma ... of the right tonsil. There are many similarities to my diagnosis and what you are going through although we all know that no two people are alike. I actually decided to Blog my entire time of treatment and I welcome you to read through those if you wish at www.ra-1life2live.blogspot.com   .... The success rate for this type of cancer IS extremely high and after much discussion I am convinced that the dual treatment of radiation and chemo was the best option. As far as the teeth are concerned, yes it is scary when you hear this but in my case I have looked after my oral hygine and elected to go in to my own dentist first and get everything checked and cleaned prior to any meeting with the dentistry department at the clinic I attended. I was glad I did as it gave the dr's at the clinic facility a very good look at my teeth and I was fortunate that no extractions were required. I was told that in general the extraction is for just the back molars (or wisdom teeth) as the radiation  does have an effect on not only the enamel on your teeth but can also weaken the jaw bone and so any dental work should be done prior to your treatment. It is not usual or unusual ... as I said, everyone is different. Please keep everyone updated. This onlne support got me through so much while I was going through this .. I went through 7 weeks of radiation every day and three chemo treatments. Everyday I can feel the improvement and I am confidant that all will be well. A positive mindset is optimum while going through this. God Bless.   Randall55 Thu, 26 Jan 2012 00:00:00 GMT On Jan 25, 2012 11:38 PM Diamond_David wrote: Man, was this a LONG thread! I hope you got all the info you need. Saw a post for dentists. Don't let anyone tell you to have all of your teteh pulled, nonsense. (I had a buddy who had tonsil cancer and they told him to do that, not needed)   yes get your teeth fixed before radiation.   With radiation you will feel like you're dying. But it you'll get past it. They will kill 1/2 of your silyva, you'll carry a water bottle. I had tonsil cancer, sore throat and one swollen lymph node, other than that I would have never known, I guess. Been 5 years, doing fine. DavidWhich is why I told him to see one of the dentists at the big 3 in Philly because they know what to look for. My hub had one that probably should have come out but our local dentist didn't know enough about head & neck radiation to make that call. Long story short which was in one of the threads here is that it went bad about 6 months after rads finished. Dentist did a root canal that "didn't take" which I wanted a 2nd opinion on before root canal.. anyway when he suggested a reverse root canal where they had to cut the gum I said no way & hub finally listened & saw the oral surgeon in Philly (@ Jefferson) who prescribed antibiotics & it worked. Had he seen the Philly dentist to begin with; they probably would not have done the root canal. Roselvr Thu, 26 Jan 2012 00:00:00 GMT Man, was this a LONG thread! I hope you got all the info you need. Saw a post for dentists. Don't let anyone tell you to have all of your teteh pulled, nonsense. (I had a buddy who had tonsil cancer and they told him to do that, not needed)   yes get your teeth fixed before radiation.   With radiation you will feel like you're dying. But it you'll get past it. They will kill 1/2 of your silyva, you'll carry a water bottle. I had tonsil cancer, sore throat and one swollen lymph node, other than that I would have never known, I guess. Been 5 years, doing fine. David Diamond_David Wed, 25 Jan 2012 00:00:00 GMT By the way; I pushed with some things for my hub- he was willing to let the local Dr do the exploring biopsy & I firmly put my foot down many times because why should he recover twice? & there is chance the results won't be back by the time we're else where. A big requirement of mine was them having their own pathology; I don't feel waiting for results is something we should waste time on- learned that after my dad's results didn't follow him from the hospital to the cancer center; so he had to have another painful hip bone biopsy within a few days. If you're doing radiation; it will be daily; 5 days a week. Having cancer is expensive; hub was out of work about 7 months. There were about 6 weeks that he could have worked after the big surgery but he didn't because the feeding tube & driving his big rig. In hindsight; I wish he would have tried because insurance only gets covered so long & our medical is so screwed up. The local Drs did not submit fast enough; he got maxed out around the 2nd week of radiation- at this point he had the big surgery with 24 hour stay; 2 weeks of radiation; 1 chemo & a 4 day hospital stay for a bad case of thrush. We applied for charity care & received it but had to pay on the local Drs which was still around $3,000. Use your insurance wisely & make good choices with time off of work. The biopsies; & all of the scans start adding up. By the way; you should use this time to see a really good dental team associated with one of the big 3 in Philly to have your teeth checked before possible radiation. You will thank me later; I promise. Do not use your local dentist; you want someone that knows radiation damage & if you need teeth extracted; do it now. You will not be able to have dental surgery once treatment starts & may need a HBO (oxygen chamber) to heal. There are a few large posts on it; if you need info; I have it in an email that I sent my hub when he refused to use his fluoride trays & his teeth started rotting. He will not miss one day now unless he's exhausted from his new work hours which has been maybe 3 times since last March. I also have a question list that I will grab the link to. Roselvr Wed, 25 Jan 2012 00:00:00 GMT On Jan 25, 2012 10:39 PM JohnnyO wrote: Hi Roselvr - Thanks for bringing up Caring Bridge; that's good advice. I'm in Philly, but it's funny because I'm looking into whether Boston has something better to offer; specifically, whether what's offered there in Proton Therapy is available for me, as opposed to the robotic surgery that is available to me in Philly, and whether the outcome might be better. I don't like the idea of moving to Boston to be treated, but if the outcome is potentially better, then it seems crazy not to face that inconvenience in exchange for extra years of life and/or quality of life. Nothing appears to be obvious at this point.  Frustrating.Dr Keane at Jefferson was awesome. Hub has a follow up with him next week. The radiation oncologist we used is not there but that team was also great. Most of the nurses were good too except a few that didn't like the wife who spoke up as much as me. There were 2 oncologists when we 1st went; we did not see the head but the newer one who came over from Penn. My email is this user name at gmail.com . I don't come here much after the spammer incident a few months ago. Do the rounds in Philly- Jefferson; Penn & Fox Chase are highly recommended by my ex-BIL who is a cancer drug rep. He said not to use the small offices here in NJ; & since we're really close to Philly took his advice. I wish hub would have let me make appts with the other 2 but he did not; so I have no clue what they would have offered. There is also cyber knife & Tomotherapy. I'm not sure you need to go to Boston & if you feel you want to; go for a consult because if you don't; you may kick yourself. This is something I learned with my dad 6 years ago when he was diagnosed with leukemia. I can't turn back the clock but can do better now; but in my hubs case; he just wanted to get the cancer out & do it quickly. When my ex-BIL told me is there are certain cancers where you need to go to certain centers; such as brain. Dr Keane sees so many of this type that he did not regret not getting more opinions. You have to like your team. Best suggestion is no exploring unless needed. I have some stories I will save but there is a chance they can nick something & cancer could spread. Some also feel that cutting into cancer in general could make it spread. As I said; he had it removed about 9/2/09; chemo (3) & rads (33) ended 12/24/09 & he's been clean so far & the huge thing is he's not even taking saliva pills. Dr Ahn (radiation) did a great job. If you do go to radiation there; you'll have to tell the radiation team we said hi. The 2 techs were wonderful & we stop to see them every time we go for an appointment. Google Brett Hudson blogger & check his story out. He also used natural therapy. My hub also had Vit C drip at Magaziner in Cherry Hill but I warn you; it's expensive also did suppliments & I'm sure it helped him recover; wish he would have done more. Roselvr Wed, 25 Jan 2012 00:00:00 GMT JohnnyO,  Boston has one Proton machine available, "it KEEPS breaking down."  Because of it constantly breaking down, the oncology-radiologists "save it for just the children."  This is a hard cold fact in this Boston, Massachusetts area of the USA after I requested the Proton machine for my adult son. This is a quote from them as well! We were told to go to Kentucky.  They have a Proton machine for adults and rooms to live in during the treatments.  It is exclusively a Proton facility I have been told. We did not go because of lack of money during the 6 weeks. I wish we could have. I would be at a more peaceful level at the moment.  This tumor caught us off guard with no money.  Good luck.  J. vwxyz Wed, 25 Jan 2012 00:00:00 GMT On Jan 25, 2012 10:09 PM Roselvr wrote: On Jan 10, 2012 1:36 PM JohnnyO wrote: Thank you, GDW.  Your husband's story sounds pretty darn close to mine, thus far.  But I'm pretty sure surgery is on the list of things that I have to go through apparently because of where the mass is located, or if not, then I might have to make a quality of life decision to forego surgery and go as far as I can with radiation and chemo.  Scratch that....I don't really know anything yet....I have to stop jumping to conclusions that I really have no solid basis to make at this point.  Thanks again for your story, and I'll be back in touch soon.I read all of your posts & am glad to see the outcome so far. Since I have this post quoted already; I want to say to go to http://www.agingwithdignity.org/five-wishes.php "" target="_blank" rel="nofollow">http://www.agingwithdignity.org/five-wishes.php " target="_blank" rel="nofollow">http://www.agingwithdignity.org/five-wishes.php & check out the aging with dignity. If you would like to print it; please send me a message. My hub who was stage 4 (Rt tonsil; golf ball in rt neck & rt nodes with the type that spreads HPV+) had great odds but when he went in for his 1st surgery after the pet showed cancer; we had no clue if it had spread to his tongue since 1 Dr had said it did... If they found it had; they were to stop cutting because there was a point where he'd say stop & this was it. He did not want to live without his tongue. I have not seen you mention where you're being treated. Can you tell us where you're being treated? With my hub we decided to not stay local but to go into Philly. We originally were going to the top 3 but started with Thomas Jefferson & stopped with them because he liked the team & they were very helpful once the 2nd needle biopsy (end of August 2009) came back positive. They set everything up for us very quickly. Our local ENT who I don't have anything bad to say about him; was going to explore at the end of September (25th or so); & Philly already had us scheduled for the ENT 9/7; then 2 weeks later the big surgery with biopsy being done in house so we knew what we were dealing with right then & there around 9/22. I can't say enough good things about Jefferson. The only part we were unhappy with was the peg tube being put in by a general surgeon. So; if you let us know where you're located; we can suggest a few places to seeHey Johnny ~ If you are comfortable sharing I was also curious about where you're being treated.  As I mentioned before, our oncologist recommended that if we needed it we go outside of Omaha because it's too new here and the surgeons who do it don't have much experience.  We have a large and sophisticated cancer center that works very closely with the University of Nebraska Medical Center - which is a leader in cancer research - so I was surprised we didn't have more experience on site here.  So anyway, I'm just curious about where it is available. But not because my Mark is going to need it ~ he's done with this thing and it's not coming back!  :) GoldDustWoman Wed, 25 Jan 2012 00:00:00 GMT Hi Roselvr - Thanks for bringing up Caring Bridge; that's good advice. I'm in Philly, but it's funny because I'm looking into whether Boston has something better to offer; specifically, whether what's offered there in Proton Therapy is available for me, as opposed to the robotic surgery that is available to me in Philly, and whether the outcome might be better. I don't like the idea of moving to Boston to be treated, but if the outcome is potentially better, then it seems crazy not to face that inconvenience in exchange for extra years of life and/or quality of life. Nothing appears to be obvious at this point.  Frustrating. JohnnyO Wed, 25 Jan 2012 00:00:00 GMT By the way; you should get your wife to join & also have her set up a page for you at caring bridge so that either of you can update your family & friends all at once. Roselvr Wed, 25 Jan 2012 00:00:00 GMT On Jan 10, 2012 1:36 PM JohnnyO wrote: Thank you, GDW.  Your husband's story sounds pretty darn close to mine, thus far.  But I'm pretty sure surgery is on the list of things that I have to go through apparently because of where the mass is located, or if not, then I might have to make a quality of life decision to forego surgery and go as far as I can with radiation and chemo.  Scratch that....I don't really know anything yet....I have to stop jumping to conclusions that I really have no solid basis to make at this point.  Thanks again for your story, and I'll be back in touch soon.I read all of your posts & am glad to see the outcome so far. Since I have this post quoted already; I want to say to go to http://www.agingwithdignity.org/five-wishes.php & check out the aging with dignity. If you would like to print it; please send me a message. My hub who was stage 4 (Rt tonsil; golf ball in rt neck & rt nodes with the type that spreads HPV+) had great odds but when he went in for his 1st surgery after the pet showed cancer; we had no clue if it had spread to his tongue since 1 Dr had said it did... If they found it had; they were to stop cutting because there was a point where he'd say stop & this was it. He did not want to live without his tongue. I have not seen you mention where you're being treated. Can you tell us where you're being treated? With my hub we decided to not stay local but to go into Philly. We originally were going to the top 3 but started with Thomas Jefferson & stopped with them because he liked the team & they were very helpful once the 2nd needle biopsy (end of August 2009) came back positive. They set everything up for us very quickly. Our local ENT who I don't have anything bad to say about him; was going to explore at the end of September (25th or so); & Philly already had us scheduled for the ENT 9/7; then 2 weeks later the big surgery with biopsy being done in house so we knew what we were dealing with right then & there around 9/22. I can't say enough good things about Jefferson. The only part we were unhappy with was the peg tube being put in by a general surgeon. So; if you let us know where you're located; we can suggest a few places to see Roselvr Wed, 25 Jan 2012 00:00:00 GMT On Jan 25, 2012 6:42 AM Sdurnell wrote: Johnnyo, Congratulations on getting something concrete to think about.  Cure rates for these cancers are quite high;  I was given great chances, and mine is not even HPV+.  Note, too, that they call it "cure," not just "remission."  And I've had clear scans every time, 11 months out now.  So I don't think your doctor is giving you a "hard sell." If I were you, I'd take up his offer to meet with a RO to get that doctor's opinions as well. It sounds like you will need one regardless.  That doctor might be able to set you straight about the types of radiation, too. SusanJohnnyO ~ Susan makes a good point.  When my husband was in his treatment, his oncologists constantly reminded him "our goal is a to cure you."  Not to put cancer in remission, but to cure him.  Make him cancer-free.  And 90 days later, after his clear PET scan he was declared cured.  I often share with people who ask, this isn't remission, he is cancer free.  Big difference. So ~ while you consider your options, keep in mind you're working on a cure ~ getting that thing out of your body and for it to never return.  I sometimes see people who are afraid of the treatments and make a more risky choice.  Not many cancers have such a high cure rate or even considered curable at all.  So whatever you do ~ go for the gold ~ which in this case is a cure. Much love ~  Gold Dust Woman GoldDustWoman Wed, 25 Jan 2012 00:00:00 GMT Jalind - An educational and measured response - thanks for offering it up. I do agree - JohnnyO should be aware of all options. But not all options will yield the same outcome. Cancer is just not such an easily solved problem... - Jeff ErthWlkr Wed, 25 Jan 2012 00:00:00 GMT Johnnyo, Congratulations on getting something concrete to think about.  Cure rates for these cancers are quite high;  I was given great chances, and mine is not even HPV+.  Note, too, that they call it "cure," not just "remission."  And I've had clear scans every time, 11 months out now.  So I don't think your doctor is giving you a "hard sell." If I were you, I'd take up his offer to meet with a RO to get that doctor's opinions as well. It sounds like you will need one regardless.  That doctor might be able to set you straight about the types of radiation, too. Susan Sdurnell Wed, 25 Jan 2012 00:00:00 GMT On Jan 24, 2012 10:54 PM JohnnyO wrote: Ok, so as I'm driving to my exam yesterday, I pass the hospital's sign for Proton Therapy but have no idea what it is.  I look it up today, and lo and behold, it's a substitute treatment for radiation that is targeted and much less damaging to surrounding tissues than conventional radiation.  In addition, because it is so targeted, lower doses can be used which means the opportunity for more future treatments in the event of recurrence.  For some reason, my surgeon didn't mention this treatment to me.  Perhaps it's because my hospital doesn't yet offer it for head/neck cancer? (They don't, but other hospitals do).  Stay tuned, folks, I'm starting to get a little angry.  Probably not a bad thing.  Due diligence required; this is, after all, my and my family's lives.John, A number of possible reasons your radiation oncologist hasn't mentioned it . . . there are some tradeoffs between the two . . . which one is more appropriate *depends* on the patient specifics and the capability of the proton machine they have . . . it's possible in some cases that it's a "wash" with neither one being "better" overall than the other . . . because of how they differ. (1) Some proton therapy centers ONLY use it for treating eye tumors, which requires only the lowest energy level from the proton accelerators used. If so, they may not be equipped for the substantially higher energy levels required for other applications, and the machine may not be equipped or set up with the hardware needed for delivery to other parts of the body. Head/neck requires a horizontal bed that you lay down on (on your back, facing upward). (2) Because it's so precise in delivery of ionizing radiation, it demands very high precision in keeping the target area in your body exactly positioned, every time. An error of as much as 2.5mm (1/10th inch) caused by patient movement or other shifting of the target area inside your body, perhaps just by breathing or swallowing, can reduce the dosage received by as much as 20% from intended dosage. They would have to be confident they can repeatedly keep you . . . and the target radiation field in your body . . . positioned precisely enough throughout your treatment. (3) The general region (radiation field) your radiation oncologist wants to irradiate, and where it's located inside your body, may not be amenable to using proton radiotherapy. It's got to get past the skin and through portions of your body to get to the target area inside you. Skin damage during treatment is just one of the considerations. Photon (aka X-Ray or Gamma Ray) radiotherapy (what your oncologist is currently planning) does not cause as much damage to the skin where the radiation enters the body as proton radiotherapy does, and that can be quite important. Six to eight weeks of head/neck X-Ray radiation causes quite a bit of damage to the skin (radiation burns). If it's severe enough, it can result in having to stop treatment until the skin heals enough to continue, or it may truncate any further treatment. My radiation field looked like a severely sunburned alligator's that was on the bring of shedding . . . more than just peeling like a sunburn . . . with much of the epidermis on the verge of sloughing off. We finished the treatment plan without any pause . . . barely . . . and the radiation oncologist was looking at it daily during the last week. So . . . the potentially greater skin damage issue is not a trivial consideration. Some burn more than others, but be assured it will be severely "cooked" before you're done. Oddly, compared to sunburns, while there's some discomfort as the skin loses its pliability (which it eventually recovers), there's normally little pain. Wouldn't stop me from tactfully asking the radiation oncologist about about it though . . . what the difference is . . . and what the considerations are that would make one method preferable over the other in your specific case. John jalind Wed, 25 Jan 2012 00:00:00 GMT I haven't heard of Proton Therapy - very anxious to hear what you find out.  Yes, getting a little angry is a good thing for many reasons.   One being it keeps any feelings of worry at bay!  :) Much love ~ GDW   GoldDustWoman Tue, 24 Jan 2012 00:00:00 GMT Ok, so as I'm driving to my exam yesterday, I pass the hospital's sign for Proton Therapy but have no idea what it is.  I look it up today, and lo and behold, it's a substitute treatment for radiation that is targeted and much less damaging to surrounding tissues than conventional radiation.  In addition, because it is so targeted, lower doses can be used which means the opportunity for more future treatments in the event of recurrence.  For some reason, my surgeon didn't mention this treatment to me.  Perhaps it's because my hospital doesn't yet offer it for head/neck cancer? (They don't, but other hospitals do).  Stay tuned, folks, I'm starting to get a little angry.  Probably not a bad thing.  Due diligence required; this is, after all, my and my family's lives. JohnnyO Tue, 24 Jan 2012 00:00:00 GMT Hi GDW - Yes, some good news, it seems, for a change!  Hoping that my surgeon doesn't change his mind for some reason. My sincerest thanks to you for your encouragement and touching base again, Johnnyo JohnnyO Tue, 24 Jan 2012 00:00:00 GMT JohnnyO ~ This is great news!  I am not sure if I mentioned in an earlier post that if my husband had needed surgery his doctor said the same thing as yours - that robotic was the only way to go.  In fact, he would have sent him to another city to do it because it's new enough that no one in Omaha is in his opinion experienced enough at it yet.  He talked to us about those high cure rates too (even without surgery) for this type of cancer.  You're going to make it through this thing and come out on the other side healthy and strong.  I knew it when I read your very first post and I know it now.  This thing isn't taking YOU down! Enjoy this good news and update us soon ~ much love ~ GDW GoldDustWoman Tue, 24 Jan 2012 00:00:00 GMT Thanks for the well wishes, Cray.  Yes, feels better to know what's going on; and, really, they could have found things in my bronchioles and esophagus which could have complicated matters, so there's reason to feel relief.  Tom Petty was right (The waiting is the hardest part). JohnnyO Tue, 24 Jan 2012 00:00:00 GMT OK! Don't you feel a bit better now that you know what's going on? Also, having a plan in place seems to take a lot of the weight off your shoulders. (These feelings from our experience, anyway) Get some rest, breathe -  and let us know when your surgeries are. I'll put them on my prayer calendar. Prayers, good wishes and good vibes - Cray crayfish Tue, 24 Jan 2012 00:00:00 GMT Just got back from my "Endo-Pan" which is short for laryngoscopy, broncoscopy, and esophagoscopy with biopsies under general anesthesia.  Doc found a superfiscial lesion at the base of the tongue; everything else looks clean, aside from the lymph nodes.  Surgeon said he can do robotic surgery to be followed by radiation and maybe chemo.  Because of the robotic surgery, a lower radiation and chemo regimen is required than if I chose only chemo and radiation, which means reduced side effects.  He's throwing some really high cure rates around for this approach, almost unbelievably so.  I'm hoping it's not just ego and a hard sell.  He'll also be removing my lymph nodes on the one side (not robotic, but he says they're working on being able to do that) about 10 days after the first surgery.   He offered to set me up to speak with a radiation oncologist if I wanted to consider a non-surgical approach, but he was pretty convincing that robotic surgery is the only way to go.  Meeting with him on Thursday to discuss details. Please don't tell me your stories about false hope given to you by your cocky doctor (boy, that one post was a real downer, wasn't it?); let me enjoy the next couple of days and believe that I might get through this with some sort of normal outcome. All prayers, good wishes, and good vibes lovingly accepted.  I'll keep posting updates.  And, of course, if you haven't yet posted about a remarkable result, looove to hear about it. Johnnyo JohnnyO Mon, 23 Jan 2012 00:00:00 GMT I had a conversation about this with my ENT two days ago.  His specialty is neck surgery, and he's the only one in our area for many miles.  He explained that the staging of the cancer is very important in how it's treated.  He also said that it's usually easier on patients to do surgery first.  Sometimes when the radiation chemo is done without surgery, it's found that surgery will be necessary, and it's more delicate as the tissues are more fagile. My modified radical neck dissection was nothing compared to the radiation.  I was back working in a couple of days, and no one even noticed, even though I still had stitches in my neck.  I have never had chemo, as the protocol for my cancer's staging does not call for it, but from what I've heard of chemo compared to my experience with neck surgery I would choose and recommend surgery first and then radiation, skipping chemo. My radiation oncologist, who had no stake in when my surgery was done, was in total agreement about how my case proceeded.  Nobody brought up chemo until I asked about it, and both doctors told me it was not needed in my situation. Do you have a radiation oncologist yet?  If so ask him the same questions you are asking us.  The staging of your cancer matters, but there can be other factors as well.  In my case the treatment also depended on the fact that they never found a primary cancer.  And for many if not most head and neck cancers there are standard protocols to follow, and people receive the same no matter where they go. Best of luck to you with this. Susan Sdurnell Sun, 22 Jan 2012 00:00:00 GMT Hi JohnnyO ~ I'm sure you have other replies on this but I haven't read them.  Only sharing what our oncologist shared with us. First, the chemo often used for head/neck cancer is Cisplatin.  No hair loss with Cisplatin ~ so you'll keep your beautiful head of hair if that's what they use.  If not, no worries, it grows back.  :) We had a team of 3 doctors ~ ENT, oncologist, radiation oncologist.  They consult with the premier head/neck surgeon on every case before recommending a treatment plan.  My husband's sister is a nursing member of the consulting team.  It's a great process they use here at our local cancer hospital. In my husband's case, surgery was the absolute option to avoid.  They called it worst case scenario.  I don't know the details of why, I only recall that they said after surgery there are many of quality of life issues.  Because our sister is an oncology nurse, and because our daughter happened to be a head/neck cancer research assistant at the University of Nebraska, we didn't do more research, we trusted this decision. (And I say happened to because her chosen career path was not even close to cancer research.  But an opportunity came her way right out of college and she took it, only to find her job knowledge to be extremely beneficial to us 2 years later!) So I don't have much to share on our personal research, only that little bit of info from our oncologist. He also shared that if surgery was necessary, robotic was the only way to go.  It's not yet available here, so we would have had to travel for that option.  Fortunately, Mark was cured by chemo/radiation and it wasn't necessary. I'm here thinking of you and your family ~ keep us posted ~ Much love ~ GDW GoldDustWoman Sun, 22 Jan 2012 00:00:00 GMT This refers to Stage 3 and 4, H&N SCC; I do not know how it applies to your colon/rectal involvement: Radiation is the minimum and its goal is to kill all including microscopic cancer cells in the area being radiated. Without radiation, cure is not likely, and there is a high possibility of local recurrence. Radiation to both sides of the neck is better than the just the affected side. Chemo is not curative, it is meant to shrink and soften tumors for radiation. It adds to survivability percentages. Chemo is given during radiation and then there is also induction chemo given before chemorad which offers additional benefit as shown in the literature. Surgery when appropriate can remove tumors provided they can obtain clear margins. There is surgery to the primary tumor, and there is surgery to neck nodes. Surgery to remove the primary tumor has been shown to be beneficial for longterm survival.  The risk of surgery to neck nodes is spreading disease when cells are missed during the lag time required to heal before starting chemo and radiation. The latest research shows no difference whether a neck dissection is done before or not. Neck dissections if radical can also be debillitating to the affected arm, shoulder, and affect neck drainage, and the possibility of longterm pain. Survival depends on eradicating all cancer in the first treatment run. Local recurrences can sometimes be surgically removed, but usually no more radiation. Distant metastic recurrences or new primaries especially in vital organs is palliative and not usually curative. At that point, chemo offers a bit more time at the expense of side effects, quality vs quantity of life. HPV tumors are more responsive to treatment and statistically having longer survival rates. The likelihood of recurrence in an area that wasn't radiated or mets is higher in nonHPV cases. That said, everyone's disease process is diferent and everyone responds to and recovers from treatment differently. I recently met a smoker who is 12y out of treatment and doing well. If I could choose, I would do at least surgery to the primary, induction chemo, then chemo+rad. The neck dissection beforehand is a difficult decision because sometimes they do not know whether to cut nerves and muscles until they get in there. If cure is what you're looking for, my philosophy is the first treatment run is the most important so I would attack it with everything possible to eradicate it in the first place. Best wishes RogerRN43 Sat, 21 Jan 2012 00:00:00 GMT John, I think that more information is good in any case when asking for an honest opinion. As far as my thoughts about what road you might take with the options placed in front of you, I can tell you what I went thru and that was 7 years ago. Surgery first, followed by the radiation. Chemo was safed as a back-up in the event I had a re-accurance. I did have a PET Scan done roughly 8 -9 months out of treatment, so I wouldn't have a false positive. I am pretty sure you are speaking of Dr. W. when you mentioned esteemed surgeon. I have mentioned how I feel about him, all positive as he took care of me twice for 2 different types of cancer. I was told by my Radiation Oncologist that he could take care of me without the surgery, but in my mind, I wanted the tumor that was present taken out of my body. I also had a friend that had an inoperable tumor behind his nose area. He went thru Chemo and radiation at the same time as me. He is doing well also. He handled the Chemo and radiation very good. Each person is different in this department as well as recovery from any surgery. My Best to You and Everyone Here PopPop Sat, 21 Jan 2012 00:00:00 GMT Forgot to mention to those still paying attention:  The colonoscopy showed no polyps in the colon, but there was a mass in the rectum.  Surprising to me that whomever read the PET scan mistook the rectum for the sigmoid colond;  isn't the PET scan more exact than that???? So maybe, just maybe, the activity on the PET scan WAS in the colon (and was nothing) and maybe the mass found in the rectum showed no activity on the PET scan (and is thus non-malignant)?  Can't speculate. Whatever the rectal mass is, it's apparently early stage and very curable.  Gotta tell ya, every doc has said "very (or "very, very") curable" thus far, and that feels good and helps me sleep for the time being. Let me know if this is too much info, and I'll ratchet it back.  Peace and love to all. JohnnyO Sat, 21 Jan 2012 00:00:00 GMT Hey all, Johhnyo here - Still waiting on results from colonoscopy.  Having a robotic  endoscopy done on Monday to try to find the primary and gather some cells for biopsy.  Here's my question:  I'm working with a highly esteemed laporoscopic/robotic surgeon who is, as most surgeons are, ready to operate.  But I've also heard of cures with just chemo and radiation and no surgery.  The idea of having surgery with radiation and no chemo is appealing (chemo is rough and hairless!) , but the idea of radiation and chemo and no surgery (surgery is rough!) is also appealing.  But the bottom line is that I want the best chance for long-term cure.  Has anyone reviewed the literature on this?  What are the variables involved that would make one lean to one treatment or the other? I'm pretty sure the surgeon is biased, and I'd bet the radiologists and chemo guys are biased, as well.  Any insight would be helpful.  Thanks! JohnnyO Sat, 21 Jan 2012 00:00:00 GMT I like the mid-thread change in subject line . . . "Ain't Dead Yet!" . . . reminiscent of the Monty Python "Holy Grail" scene . . . keep those kinds of thoughts going throughout! John jalind Thu, 19 Jan 2012 00:00:00 GMT Johnny, Just saw this one . . . almost exactly 2 years ago I went through nearly the same exact sequence of events . . . found swollen lymph node behind jaw, followed by CT, then fine needle biopsies (took two tries). Didn't have a PET/CT until after the radical neck dissection surgery, before the radiotherapy started, as the FNA biopsies showed squamous cell carcinoma in two nodes. PET/CT at that point was to verify nothing else could be found anywhere else. Like you, I felt great. That's the insidious thing about cancer; you won't "feel sick" with many cancers until they're quite advanced. Like you, the PET/CT lit up like crazy with high numbers on a mass in my colon (and nothing of any concern anywhere else). Mine was medium size and appeared to be contained inside the colon. Unlike you, because the PET/CT was pre-radiation and post-surgery, my radiation oncologist forbid a colonoscopy. Starting radiotherapy was imminent (less than a week) and he wanted *nothing* to delay it. Having one during radiation was a non-option (also why you have any/all dental work done and get a PEG beforehand). The colonoscopy was four months later, after recovering for a month from radiotherapy. Found out it was a large, benign polyp . . . and there were two of them of similar size and type (the other did not light up at all in the PET/CT). Both were fairly good sized and a type of adenoma with high percentage chance of becoming cancer. It was a burden on my mind (is it benign???) the entire four months. Even so, I felt lucky to at least know about it so something could be done as soon as possible after finishing radiation. Would likely have been some years before it would have been found by other means, and who knows what it would have been by then. Whatever it is in your colon cannot be changed, but at least you'll find out what it is now. The PET/CT lighting it up is fortuitous versus finding it months or years later. Aside from a full body PET/CT finding a bad polyp, or a colonoscopy (the definitive means), other methods like the blood smear test done in conjunction with the infamous rectal prostate exam (that too many men decline), or worse yet noticeable symptoms, all too often find colon tumors only when they're well advanced. A parotid gland (the two known bad nodes were on top of it) and 22 lymph nodes later found cancer starting to extend into the parotid and in 6 of the regional lymph nodes, which is Stage IV under current TNM staging rules from just the number of regional lymph nodes involved. This is different compared to Stage IV from metastases to distant nodes or especially other organs such as liver or lungs. The reason for the TNM rules staging it at IV is the risk of recurrence or metastases showing up later. After the surgery I had six weeks of head/neck radiation which is rather brutal, and others have already provided solid advice on how to get through it. No chemo for me as we never pinned down the exact origin, but would have bet the farm it was a partially invasive SCC skin lesion found in the vicinty, which is a little different compared to internal origin from tonsils, base of tongue, soft pallet, etc. (which often has chemo in conjunction with radiation). Head/neck SCC treatment is fairly well understood, with each plan tailored for each patient and their specifics, including any other medical issues that must be accommodated. Although the radiation is brutal, starting with the hideous "mask" used, and even more difficult when done with chemo, there have been thousands who have journeyed that well-trodden path before you quite successfully. Bottom Line: Two years later I'm still here, currently free of any internal disease. We're still treating skin cancer and lesions as they appear and probably will be for the rest of my days, but that's very managable provided we do it when it appears, before it becomes invasive and gets loose inside me. Also on a short leash with a gastroenterologist for a few years more (found five more smaller polyps last year, a bit of a shocker, but not as bad as the first two were). Best wishes for benign colonoscopy results and getting through the head/neck treatment. jalind Thu, 19 Jan 2012 00:00:00 GMT You have a lot of positive support here; hang on to it and eat it up.  I'm going to be a bit different, though, as I learned different going through my husband's treatment.  My husband was diagnosed with head/neck squamous cell carcinonama October 2011.  He had a tumor on one tonsil and he had one positive lymph node.  He died -- I am still so sad to say -- November 19 2011, one year later.  What I learned is to study, study and learn as much as the doctors.  If I had to do it over again, I would have insisted: 1) that we have an oncologist to steer the treatment program; 2) that he have a full chest scan right at diagnosis  (He did not have a chest scan although there was a partial scan of his lungs done when radiation was started); 3) chemo during radiation to catch any cells that might metastasize; 4) full understanding of the side-effects so they can be discussed beforehand or alternatives explored to diminish them. My husband's surgery was done October 26.  Radiation ended in January.  And in April he was told he had 27 cancerous nodes across both lungs.  Chemo started in May. He went into hospice September 2 and was told he had two weeks to live.  He died two months later on November 19. I know so much more now.  Learn.  Question.  Look for the very best care.  Don't think of your doctors as demi-gods.  They are humans.  Good humans but nevertheless -- get out there and learn.  There's lot of information available.  Make sure you read bona fide studies and not internet junk.  And -- be as happy as you can.  Every day find something to make you laugh!  You'll be better for it! nwwoman Thu, 19 Jan 2012 00:00:00 GMT me also! We've had a long, long road of question marks! I do believe the survivors, which you will be, the answers are found on C.C......Our doctors didn't tell us much, started scheduling things like crazy....yet, they were correct doing so, as i look back at that part..they made us crazy, yet it was all for a good reason, and always, take it one day at a time...here's my high five to ya! And your wife..... always update k? Tawny xo tawny111 Thu, 19 Jan 2012 00:00:00 GMT Thanks for the update - I was sending lots of positive vibes your way yesterday - and will continue.  :) Much love ~ GDW GoldDustWoman Wed, 18 Jan 2012 00:00:00 GMT Hey all - I'm still lined up for a bunch of tests, so although I have more news, there are still many more questions; and it doesn't make sense to me to keep hypothesizing about my situation when there is so much unknown at this point.  The bottom line right now is that I don't have ANY biopsy reports yet, and until I have those, it's really hard to know exactly what I'm facing.  As I see it, knowledge is power and speculation is dangerous. For the time being, I'm hoping for any kind of positive news and need to have some good vibes thrown my way.  Will let you all know how the vibes worked out when I have some more answers ;)  Johnnyo JohnnyO Wed, 18 Jan 2012 00:00:00 GMT On Jan 17, 2012 3:36 PM GoldDustWoman wrote: Susan, I appreciate what you said about your treatment being hard on your husband too.  It was so difficult for me to watch my husband go from strong, fit and healthy to weak, ill and skinny during treatment.  (This can be a challenge of throat cancer I think, you feel great and don't even know you have it before treatment!) And even though I remained positive he would beat this thing ~ the underlying reality that I could be left behind without the love of my life ~ well that fear is greater than the fear of losing my own life.  John, once you know what your treatment plan is we're all here to help you with support for you and your family.   Cancer is certainly a disease that impacts everyone who loves you.  Much love ~ GDWI agree 110% this was equally hard on my mother, the caregiver. I believe they have both aged 10 yrs in the past 6 mos... on a positive note, I did see my parents ability to fight this together and the way my mother took care of my father, was/is amazing! I've seen strength in them both, I've known was there, but never seen before.   luvmyboxerz Tue, 17 Jan 2012 00:00:00 GMT Susan, I appreciate what you said about your treatment being hard on your husband too.  It was so difficult for me to watch my husband go from strong, fit and healthy to weak, ill and skinny during treatment.  (This can be a challenge of throat cancer I think, you feel great and don't even know you have it before treatment!) And even though I remained positive he would beat this thing ~ the underlying reality that I could be left behind without the love of my life ~ well that fear is greater than the fear of losing my own life.  John, once you know what your treatment plan is we're all here to help you with support for you and your family.   Cancer is certainly a disease that impacts everyone who loves you.  Much love ~ GDW GoldDustWoman Tue, 17 Jan 2012 00:00:00 GMT John, You sound so much better!  Now that you have the results, you can prepare a plan and go forward with it.  That is a lot more positive than the fear that waiting can induce.  One thing you might want to think of and discuss with your doctors is whether you have options in timing of your procedures and treatment.  I really wanted to see my elderly parents who live 1500 miles away before I began treatment, as I didn't know when I would be able to afterward.  They were able to schedule everything--surgery, tooth extractions, and radiation treatments so I could have a week before Christmas to go to AZ.  That was a huge priority for me, and it paid off because I was not able to travel again until summer.  If there is something you need or want to do in the near future, you may be able to as well. I hope your wife and kids are taking this as well as you are.  I sometimes think my illness was as hard on my husband as on me.  I don't know how old your kids are, but I'm sure your proactive attitude is sure to rub off on them at least a bit. Best of luck to you! Susan Sdurnell Tue, 17 Jan 2012 00:00:00 GMT Hi, my Dad was diagnosed with st 4 squamous cell carcinoma last July. What I wish, is that my parents would have taken a few days to take the trip they always wanted, because they have spent so much $$ and now they live/breathe cancer treatment ever since. My Dad was a pretty healthy guy, did all the exercises etc, but the treatment is just hard on his body. It looks like you have your age on your side! Just take some time to enjoy life, your life is about to change, but it will get better, it just takes time. sorry to be a downer.... I just wish someone had prepared my parents for what they were about to experience...   luvmyboxerz Tue, 17 Jan 2012 00:00:00 GMT Not a chance!  Just away for a few days celebrating my birthday.  :)  Looking forward to hearing from you after Tuesday ~ GoldDustWoman Mon, 16 Jan 2012 00:00:00 GMT Ah, GDW!  I was worried that you left me.  So good to see your words of hope again.  Will post as new info becomes available.  Thanks! JohnnyO Mon, 16 Jan 2012 00:00:00 GMT John ~ I just read your post about the results of the PET scan and I have to tell you that while I felt the understandable concern about the results, I was smiling even before you got to the part about your attitude shift.  I could see you have moved out of the fear phase and into the fight phase before you even said it yourself.  I can't tell you how happy I am to hear that!  Yes, hopefully the colon situation will be quickly resolved and I agree with the earlier post that it's good news you found it now.  I of course am not a doctor and only have information shared with us by our doctors and my friends here, but I have not heard of a head/neck metastising into the colon so I'm not too worried that's your situation.  Especially if you find that your head/neck is HPV based, which is the good news you want to hear.  And given your age it's likely.  Keep in touch with us here ~ and so very glad to hear you've moved on to your next stage of attitude.  I think it's just part of the process of dealing with that shocking news.  I'm amazed at how your reaction is so similar to my husband's ~ I suspect that as you go through this and share with us I'll see more of that.  Much love to you and your family ~ and please let what you find out on Tuesday.  You'll be in prayers for a quick and successful procedure.  ~  GDW GoldDustWoman Sun, 15 Jan 2012 00:00:00 GMT Hey Cray - Whatever the colon thing is, it doesn't appear too bad,  so I'm not so freaked about that, except to the extent that it impacts on my ability to address the head and neck cancer in a timely fashion. Next Tuesday is the colonoscopy which will give me a better picture of what I'm facing.  I'm hoping for a worst-case laparoscopic resection; and a best case benign polyp removal during the scope! Meeting with two oncological head/neck surgeons next week: the first is a younger woman, the latter, for a second opinion, is the older (55-ish) guru who trained her.  Still need a biopsy on that one, as well. Comments have trailed off here.  Don't give up on me, guys; I'm in the fight and I need a cheering section.  Thanks, and love to all.  John JohnnyO Sat, 14 Jan 2012 00:00:00 GMT OK - I'll say,  "Thank goodness they found the colon problem now  - whatever it is - could very well be nothing but you're on it if it is". You and your wife breeeeathe and love on each other. It'll be OK. The "Cancer and You" (or whatever) booklet we got said something to the effect of not treating this situation lightly - ie you are in a special circumstance so forego the norm. Your life has changed.... I saw the point they were trying to make but I tell you that being our own dorky selves in our own little dorky world was what got us through. I cherish it! Keep in touch - Cray crayfish Sat, 14 Jan 2012 00:00:00 GMT my husband and i looked at our situation, as if, "starting a new job"  show up for the job. looking back, it was nothing as bad as we expected, honestly...endeavor  to perservere, we made it, my husband said, go!! i also tawny and dave tawny111 Sat, 14 Jan 2012 00:00:00 GMT Your attitude will get you thru these cancers, and YES, very, very curable!  Hold tight and stay strong! Luv, Tawny tawny111 Fri, 13 Jan 2012 00:00:00 GMT Hey friends - Not a great day.  PET scan confirms that there is an active mass in the retropharynx area that has spread to lymph node(s).  The mass is probably the primary as the PET scan showed no other masses, so I guess that's a good thing.  Meeting with surgeon on Monday to talk and establish a game plan, the first step of which will likely be an exploration and biposy.  Sucks, but I'm in the fight now. More bad news, though:  PET scan shows an active mass in my sigmoid colon.  Seems to be likely cancerous, as opposed to a polyp, based on its size and amount of activity.  Highly unlikley that this is related to the head/neck mass, but if it is, I'm in big trouble as it is indicative of widespread metastasis.  But first things first:  colonoscopy on Tuesday to figure out if it's even cancer; if it's not, then that's that, I suppose.  If it is, then we'll have to take on that fight, as well.  And if it's cancer unrelated to the head/neck mass, then it has been caught early, as the PET scan would have indicated whether it has spread and it hasn't. The good news is my attitude has adjusted, and while I still don't know everything, I'm in a strangely matter-of-fact, even optimistic, fight mode.  Heck, colon cancer is curable and head/neck cancer is curable.  Why this may be my lucky day! No pity, please.  Words of encourgement and strength for me and my wife is what I need.  Just gotta get through this mess and get on with my life.  Stay tuned, my new friends. JohnnyO Fri, 13 Jan 2012 00:00:00 GMT wow, i must agree about staging, our doc kept saying, too bad it wasn't stage 1! (?).. then they slowly said stated stage 3, next time it was 4, and i went into shock.  Well, after getting on CC, it became apparent that stage 3 or 4, is about the same. This is curable...in the back of my car, i have his simm's mask, showed my mum and she almost ran backwards, per my mum "i can't look at that thing"..DAVE could not look at it also, the first week, then it all turned out well...no mouth sores, no this or that.......i do not ever brag, yet the residuals are not pleasant, he's watching his favorite channels on TV, we only had a few bumps in our journey...i do beleive, i was more freaked out than him! i do not look back, just forward...now! Tawny my posts were the one's that came into times of trouble, and all of that went by quickly....at the time, i was a mess, then it all passed...! luv, tawny tawny111 Fri, 13 Jan 2012 00:00:00 GMT I hadn't understood about staging, guess I never paid attention to it, but read about it online.  My doctors never mentioned it, and I really had to worm it out of them.  And they both told me immediately that it's not at all like the staging of other cancers.  The reason is that it typically only metastizes to the nearby lymph nodes, which can be dealth with in any of several ways, and quite often it is only then diagnosed.  Most of the cases we've heard about here are 3 or 4, and most are quite curable--that's the word the doctors use.  Sdurnell Fri, 13 Jan 2012 00:00:00 GMT I appreciate what EthWlkr said about never knowing his "stage."  Once I learned about staging I knew my husband was stage 4 before the doctor even told us.  I had secretly hoped the doctor would never say because I knew Mark would never ask.  But he did say it, and I'm glad he did because he could reassure Mark in the same way I had.  But Mark and I did agree that we would not tell anyone that he was stage 4, just to spare them the fear.  Now please know, I am NEVER an advocate of withholding information, whether it's about cancer or anything else.  People ask me a question, they're getting the truth - that's just how I am so they'd better be prepared to hear it.  And when it comes to Mark's cancer incident, well, we're just not the kind of people to not share the truth and all of the facts with our loved ones.  We just don't keep secrets in any part of our lives.  But this staging thing is SO misleading, we told no one.  Not our children, not our parents, no one.  In fact we ran into a friend who said "I was so relieved to hear it's stage 1!"  We looked at each other and we could hear each other thinking "who the h__ said it was stage 1?!" but we didn't say a word. And we'd do it that way again.  Those numbers just cause a whole bunch of unneeded fear.    GoldDustWoman Fri, 13 Jan 2012 00:00:00 GMT Staging is where nomenclature can be frightening to the patient. GDW oncologist's explanation was the way it should be approached. Cancers are different and are staged differently. Staging is a way the oncology team will determine how to treat the disease. Staging is based on the tumor site, tumor size,  its appearance/type (tumor grade), whether it has moved into the lymph system, or mestastized to other organs. In order to treat the disease, they need to visualize the disease. That's why they stage it. I never knew what my stage was and the oncologist never offered it. I was told that it was isolated to my sinus although one lymph gland in my neck was involved. I still don't know to this day what the stage was - I'm 4 years out, and no recurrence. That's what matters. Always remember - cancer is a treatable disease. Onward we go! - Jeff ErthWlkr Thu, 12 Jan 2012 00:00:00 GMT On Jan 12, 2012 7:33 AM spin144 wrote: JohnnyO: I was diagnosed in Oct. of '08 with  stage IV SCC of the eppiglottis and base of tongue. I went through a clinical trial with 50 rads and 600 hrs. of chemo over a nine week period. In March of '09 I was declared cancer free. The treatment was grueling but I got through it by taking it one day at a time. I agree with the previous posts, this can be cured. One thing I might add. No matter who diagnoses your situation, if it is positive for cancer, get a second opinion. If possible, preferrably at one of the (NCCN) National Comprehensive Cancer Network hospitals. They are a group of about 25 (I think) facilities scattered all over the country.  They specialize in treating all cancer types. I was fortunate to have one of the facilities located within 50 miles of home. When I found out the results of my biopsy by phone on a Wed. morning (from an unaffiliated ENT who probably saved my life by finding the tumor), I was told to wait for contact from the oncology department of the practice. I was not waiting for anything! I wanted action immediatly. I went on my insurance carrier website and found the NCCN system by accident. They got me in for evaluation in less than 48 hours. I saw the oncologist, ENT, had an endoscopy and a CT scan by Fri. afternoon. My case went before the tumor board on Monday AM, and we had a plan of action by Tue. These folks were phenominal. The point I'm trying to make is that you want treatment from the people who deal with head & neck cancer hundreds of times per year. These folks know what they are doing. You want the first team on your side. I was relatively symptom free when I was diagnosed. I went to the original ENT with a persistant dry cough and a feeling as though I might choke when eating bread. He did an endoscopy (camera in your nose and down the throat) and saw something on my eppiglottis but wasn't sure what it was. He sent me for a CT scan. It came back negative for cancer. So they can be wrong sometimes. He, fortunately for me, was persistant and did a second endoscopy and decided to do a biopsy which required a trip to the hospital for a procedure under anesthesia. I probably owe my life to that ENT. When he called me to inform me of the results, he thought it was relatively new cancer. When I went for the second opinion, it was diagnosed as stage IV. Thus the reason for treatment, if possible, where they deal with these cancers multiple times every day. Hang in there, you can beat this thing. I'm 3 years post- treatment this month. Good luck with your fight. SpinAll excellent advice from spin144. And remember, if you - or anyone out there - hear the words stage 4 with throat cancer - don't panic!  Stage 4 throat cancer is not the same thing as it is with others like breast, colon, etc.  It is not a death sentence.  Stage 4 is very typical with throat cancers because of the proximity of the lymphatic system.  Those are words directly from our oncologist who works only with head and neck cancer patients and trained at Memorial Sloan Kettering.  I'll never forget the look of fear on my husband's face when his doctor said, and only after Mark asked I might add, "it's stage 4a."  I have never seen that kind of fear on his face in the 33 years we've been together.  But fortunately, I had done my homework.  So I immediately grabbed his arm and said Mark, it's ok!  Stage 4 is different with throat cancer!  And his doctor immediately agreed and assured him, and shared the details of why it's not the same.  He has even advocated for the staging criteria of throat cancer to be changed it scares people needlessly.  So remember - stage 1, stage 4 or anywhere in between - this cancer is curable.  GoldDustWoman Thu, 12 Jan 2012 00:00:00 GMT JohnnyO: I was diagnosed in Oct. of '08 with  stage IV SCC of the eppiglottis and base of tongue. I went through a clinical trial with 50 rads and 600 hrs. of chemo over a nine week period. In March of '09 I was declared cancer free. The treatment was grueling but I got through it by taking it one day at a time. I agree with the previous posts, this can be cured. One thing I might add. No matter who diagnoses your situation, if it is positive for cancer, get a second opinion. If possible, preferrably at one of the (NCCN) National Comprehensive Cancer Network hospitals. They are a group of about 25 (I think) facilities scattered all over the country.  They specialize in treating all cancer types. I was fortunate to have one of the facilities located within 50 miles of home. When I found out the results of my biopsy by phone on a Wed. morning (from an unaffiliated ENT who probably saved my life by finding the tumor), I was told to wait for contact from the oncology department of the practice. I was not waiting for anything! I wanted action immediatly. I went on my insurance carrier website and found the NCCN system by accident. They got me in for evaluation in less than 48 hours. I saw the oncologist, ENT, had an endoscopy and a CT scan by Fri. afternoon. My case went before the tumor board on Monday AM, and we had a plan of action by Tue. These folks were phenominal. The point I'm trying to make is that you want treatment from the people who deal with head & neck cancer hundreds of times per year. These folks know what they are doing. You want the first team on your side. I was relatively symptom free when I was diagnosed. I went to the original ENT with a persistant dry cough and a feeling as though I might choke when eating bread. He did an endoscopy (camera in your nose and down the throat) and saw something on my eppiglottis but wasn't sure what it was. He sent me for a CT scan. It came back negative for cancer. So they can be wrong sometimes. He, fortunately for me, was persistant and did a second endoscopy and decided to do a biopsy which required a trip to the hospital for a procedure under anesthesia. I probably owe my life to that ENT. When he called me to inform me of the results, he thought it was relatively new cancer. When I went for the second opinion, it was diagnosed as stage IV. Thus the reason for treatment, if possible, where they deal with these cancers multiple times every day. Hang in there, you can beat this thing. I'm 3 years post- treatment this month. Good luck with your fight. Spin spin144 Thu, 12 Jan 2012 00:00:00 GMT JohnnyO, I'm so sorry you have had so much anxiety.  Your doctor should be able to prescribe something for that.  (I have had to resign myself to taking a lot of meds for different reasons during my journey through cancer, and I realized that it's OK;  they will mostly just be temporary.) As you found out, there might not even be a tumor, so things could be better than you thought.  And even if there is a tumor, you have an excellent chance of going through treatment and emerging as pretty much your "good old" self.  Good luck when you get the radiologist's report.  Keep in mind that head and neck cancers are not only highly treatable, but also highly curable.  All the veterans here are proof.  (I am 11 months out of treatment, cancer free, and although I am still dealing with a few unusual side effects of radiation, feeling quite well.) Susan Sdurnell Thu, 12 Jan 2012 00:00:00 GMT I must agree with GDW about not listening to every single detail you read on the net, a friend of mine told me a horror story about on of her co-workers when I found out about hubby's cancer, and she painted such an ugly picture.....NONE of it happened! Can't wait to hear about the Pet Scan results Tawny  tawny111 Wed, 11 Jan 2012 00:00:00 GMT JohnnyO - Thanks for the update.  My husband had a needle biopsy too that was inconclusive.  Same thing with the CT scan.  They only found his primary when they went in to do a surgical biopsy of the swollen lymph node.  The ENT was doing the surgery and once he could really get into the throat (while my husband was out) he could see a tiny tumor in the spot where his tonsil used to be.  Biopsied that and the rest is history.  I have to tell you though, it was a shock to us.  With an inconclusive needle biopsy and CT scan and given my husband's excellent health both then and for his entire life - I did NOT expect the doctor to walk out and say to me "I did find cancer."  Oh my goodness I almost dropped over at that moment.  It was all I could do to hold myself together for the rest of the doctor's update.  Ugh - I hadn't really thought much about that moment in the last year.  Without a doubt that was the absolute worst moment of my life so far.  I'm getting a stomach ache just writing about it. But, now that it's behind us you know, I think I am one lucky woman if that is the worst thing that's ever happened in my life.  Cancer taught me to be grateful for things like that.  Please let me know as soon as you get your PET scan results.  Whatever the news, remember, you are going to be stronger, wiser and better in the end.  And you're not going anywhere ~ not because of this bump in the road anyway. Much love ~ GDW   GoldDustWoman Wed, 11 Jan 2012 00:00:00 GMT Joe - Stage 4, 4 nodes, 6 years.  Amazing numbers there.  Amazing, hopeful story.  Thanks for that! JohnnyO Wed, 11 Jan 2012 00:00:00 GMT Went for the PET scan today, as well as a needle biopsy of the metastasized lymph node containing the necrotic cells. PET scan was the most relaxed I felt in the last week: 23 minutes where there was nothing I could do but lie there in God's hands. As for the biopsy, the pathologist was unable to get any cells (3 tries), just a lot of clear, yellowish fluid, more in line with a cyst than a tumor.  Both the pathologist and ENT were surprised.  Not sure what to think at this point. GDW - Your posts made my wife's day yesterday, and gave her hope where all hope seemed lost.  She LOVES this site, she said.  Continued thanks to everyone.  JohnnyO Wed, 11 Jan 2012 00:00:00 GMT Yo Johnny, I was Stage 4 Squamous Cell Carcinoma to the tonsil with 4 lymph nodes involved. Went through the treatment, had the side effects and came out the other side even better than I went in. That was 6 years ago. I am in top shape and the best of health. I don't even get colds...or at least I don't feel them. Maybe I relate all illnesses to the cancer so everything else pales in comparison. Do the treatments. You'll get through it and, if you ask any survivor on this board they will tell you, there will be rewards that you won't be able to understand at this time. The treatment sucks, no doubt, but you will have a better appreciation for life than you can realize now. Believe me it's no small thing. Good Luck! Joe Defjoeb Wed, 11 Jan 2012 00:00:00 GMT You know, I think sometimes we are all moved to say what we say for reasons we may not understand.  Johnny, your story about your friend and Crayfish's unique choice of words is a perfect example.  I don't know if you believe in "signs", but we certainly do, especially after our cancer incident.  I think it's a sign that you are going to be just fine.  Much love ~ GDW P.S. "Mr. Get-r-done" Larry the Cable guy is a born and raised Nebraskan, just like me.  There's something to be said for the gifts of being raised in the American plains, don't you think? :) I'm not a huge fan of his comedy, but I am a huge fan of him as a person.   He's an extremely generous philantropist, giving many gifts to the people of our state.  GoldDustWoman Tue, 10 Jan 2012 00:00:00 GMT Hey crayfish - Funny you should say that.  A good friend of mine reminded me today that 15 years ago he had a lump on his jaw, and MY advice to HIM was to just get it done.  He said that was the best advice he had received.  And he advised the same to me today.  So thanks for confirming that one. JohnnyO Tue, 10 Jan 2012 00:00:00 GMT Just get 'er done, JohnnyO. crayfish Tue, 10 Jan 2012 00:00:00 GMT Thanks again, GDW.  I'm crying from the hope that your words give me.  I will pass this on to my wife.  Much love in return, John. JohnnyO Tue, 10 Jan 2012 00:00:00 GMT JohnnyO ~ one more thought I had to share.  I think part of the shock of getting news like this is your youth.  I mean at 50 our lives are supposed to be getting easier right?  The kids are grown (or getting there), we're at the latter part of our careers, all of the challenges of youth are finally behind us.  Then - WHAM! - our mortality is thrown right in our faces with a cancer diagnosis.  (Or as my husband and I like to call it now, "that cancer incident."  HA! :)  It is just normal for you to feel like "crap, this is it, I'm done."  But you are not!  I love the way Tawny said it - about a different way of living.  And trust me when I tell you that having been through it, the way of living after isn't all that different.  The only thing that is significantly different for my husband is now he appreciates life even more than he already did.  He understands that if the lawn doesn't get mowed when it should - who cares.  He understands that wall doesn't need painting right now.  He understands that people aren't perfect and they all show their love in different ways.  His children understand that their parents who they rely on even as adults, will not always be here and as a family we should cherish our time together even more than we already did.  The list goes on and on.  So the truth is, Mark's life and his perspective is even better after that cancer incident than it already was.  He says sacrficing a little salivia (his only lasting side effect) was totally worth it.  Keep in touch with us, don't be afraid, keep telling yourself that this is just a bump in the road and once you get over it you'll be wiser than it seems to me you already are.   And remember the facts too - this is a very curable cancer.  The treatment you'll receive WILL get rid of that scary lymph node and thing you saw in your throat.  You'll get through this and this thing will soon be your "cancer incident" in your past.  And don't underestimate the power of a positive attitude - this thing isn't taking YOU down!  Keep in touch with us ~ once you know exactly what you are dealing with and what your treatment plan is there's lots of support and advice for you here.  We've all been through it and we have lots of information about how to make the treatment as easy as possible.  Much love ~ GDW P.S.  One more piece of advice.  Don't read things on the internet about people's experiences with treatment.  Every person is different.  I made that mistake and plus had friends coming out of the woodwork with stories about friends/family who had been through the treatment.  We were terrified!!!  Trust me, it wasn't nearly as bad as all of that stuff I read before I found this forum.  These people here can share the reality of their experiences without the fear factor that some blogs have.  Maybe upping the fear factor brings more readers, I don't know, but trust me it wasn't nearly as bad as we expected.  GoldDustWoman Tue, 10 Jan 2012 00:00:00 GMT Thank you, GDW.  Your husband's story sounds pretty darn close to mine, thus far.  But I'm pretty sure surgery is on the list of things that I have to go through apparently because of where the mass is located, or if not, then I might have to make a quality of life decision to forego surgery and go as far as I can with radiation and chemo.  Scratch that....I don't really know anything yet....I have to stop jumping to conclusions that I really have no solid basis to make at this point.  Thanks again for your story, and I'll be back in touch soon. JohnnyO Tue, 10 Jan 2012 00:00:00 GMT  Johnny0, You say you want a good story, we all have a story to share as you might expect from a message board and I can tell you about my story. I was told I have (back of tongue) ca tongue, base-ca metastatic to lymph nodes in August of 2007. I began treatment on the 27th of Sept. consisting of 33 radiation and 3 chemo sessions and finished on Nov.14th. I had my peg (feeding tube) put in right away so I wouldn't have to be concerned about losing too much weight or preparing daily meals, five months later my peg and I parted company because my taste buds came back along with my saliva. I went back to work on Jan. 1st 2008 thinking I was ready but in hindsight maybe I was rushing it just a bit. Nov. 14th will be my fifth year post treatment and there are obliviously other people for instance like POP-POP who has experienced life with cancer for a lot longer time. So when you think of gloom and doom (and you will because you're human), please think of your upcoming successful treatment and your family who will share this journey with you. God bless. philsandiego Tue, 10 Jan 2012 00:00:00 GMT Thanks for the positivity, everyone.  It gets scarier everyday.  Tonight I looked in the back of my throat just to see if there's anything unusual, and I can see a mass bulging through from behind.  Not sure if it's the enlarged lymph node or a separate mass, but it's freaking me out. PET scan move to Wednesday this week.  Most worried that they won't be able to do anything curative.  For the time being I'm enjoying what are likely the last few normal days of my life.  Bizarre how normal and mundane can feel so joyful. Will keep you posted.  In the meantime, I need good vibes and good stories, I think.  Thanks all.   JohnnyO Tue, 10 Jan 2012 00:00:00 GMT Definately a life changer but not neccessarily a life ender.  Cancer is a word NOT a sentence. Hang in there. Chris SCC Stage IV T2N0 Diagnosed 11/5/09 Chris1959 Tue, 10 Jan 2012 00:00:00 GMT i quick reply on my behalf.........U will make it,  highly curable, listen to GDW, she is correct......I wanna write as she does, because, when i was in total shock of my husband's diagnosis, she put me at ease, this is  not a "points given to has the best answer" this is something that not ONE of us needs to go thru, you will live, you will! same with my Dave, had NO clue, not pain, just this "thing" going on, and on and on...we finally went to an ENT doc....oh well, his work ethic was so high, he didn't wanna take a day off of work! YOU are not dying my friend, it is just a new way of living...you will live...trust me on that! keep posting, K? tawny111 Tue, 10 Jan 2012 00:00:00 GMT Sorry - had kind of an important typo in my post.  Here's the post corrected. Hi JohnnyO, My husband was 51 when he was diagnosed with SCC of the tonsil, stage 4, with one lymph node involved. First let me tell you that he received 7 weeks of treatment, radiation and chemotherapy and was declared cancer free 90 days later. That was almost a year ago. Head/neck cancer is very curable, even when a lymph node is involved. He was just like you, feeling totally fine and normal at the time of diagnosis. He only suspected something was wrong because of the swollen node, which by the way 3 doctors insisted was nothing to worry about. But he persisted, just having a feeling that it WAS something to worry about. He was right. He is a very positive thinker and not a man who is ever down. He approaches every day of his life with complete optimism. So I was very surprised when he came away from this diagnosis with a gripping fear that his time was up. He absolutely thought this is it, I'm going to leave my family and my wife of 32 years here without me. I would have NEVER expected that kind of reaction from him. So I think what you are feeling is VERY normal. He went on feeling this way for a week or two. No amount of encouragement from doctors or from me could alleviate his fear. I'm not saying that he wasn't willing to fight - he totally was - but he was still afraid that it was a fight that he couldn't win. And understand, he wasn't afraid of dying itself, just feeling fairly certain that he was going to be leaving us behind and was feeling afraid and sad that we wouldn't get to see our grandchildren together, see our son graduate, and live here alone again like we did when we were 25. So it wasn't the dying that was scary, it was the not living and finishing out what we have in mind for our lives. He felt that way for a couple of weeks but by the time treatment started he was more in the mindset of "this thing isn't going to take MY life!" and kept that mindset throughout the entire process. I am happy to share with you more detail on how I think he came to that place if you are interested. Primarily it was just time - and my constant cheerleading in his ear - "this thing isn't taking YOU down! You're a fighter! You're healthy! There's another reason we are going through this. The reason is NOT because your time here is done." I was right - it didn't take his life and if his doctors are right, it never will. I think what you are feeling is just part of the process one goes through when receiving news like this. You don't have all of the information yet - you will feel better once you know what you are dealing with. For example, if your primary turns out to be HPV based, that is excellent news. The cure rate for HPV based h/n cancers is very high. I'm not into worrying about percentages and cure rates but it does help to know that. And once you find your primary if a doctor tells you it's stage 4 DO NOT WORRY! Our doctor explained to us that h/n cancer is often stage 4 and it's not the same thing as say a stage 4 breast or colon cancer. Not the same thing at all. Let us know what your results are. You will find lots of support here from people who have been through the same treatments. My husband would say that he started with that same fear you are feeling, but now that it's over we are both grateful from all of the things we learned from the experience. That's another post though. :) Much love ~ GDW GoldDustWoman Mon, 09 Jan 2012 00:00:00 GMT Hi JohnnyO, My husband was 51 when he was diagnosed with SCC of the tonsil, stage 4, with one lymph node involved.  First let me tell you that he received 7 weeks of treatment, radiation and chemotherapy and was declared cancer free 90 days later. That was almost a year ago.  Head/neck cancer is very curable, even when a lymph node is involved. He was just like you, feeling totally fine and normal at the time of diagnosis.  He only suspected something was wrong because of the swollen node, which by the way 3 doctors insisted was nothing to worry about.  But he persisted, just having a feeling that it WAS something to worry about.  He was right. He is a very positive thinker and not a man who is ever down.  He approaches every day of his life with complete optimism.  So I was very surprised when he came away from this diagnosis with a gripping fear that his time was up.  He absolutely thought this is it, I'm going to leave my family and my wife of 32 years here without me.  I would have NEVER expected that kind of reaction from him.  So I think what you are feeling is VERY normal.  He went on feeling this way for a week or two.  No amount of encouragement from doctors or from me could alleviate his fear.  I'm not saying that he wasn't willing to fight - he totally was - but he was still afraid that it was a fight that he couldn't win.     And understand, he was afraid of dying itself, just feeling fairly certain that he was going to be leaving us behind and was feeling afraid and sad that we wouldn't get to see our grandchildren together, see our son graduate, and live here alone again like we did when we were 25.  So it wasn't the dying that was scary, it was the not living and finishing out what we have in mind for our lives.  He felt that way for a couple of weeks but by the time treatment started he was more in the mindset of "this thing isn't going to take MY life!" and kept that mindset throughout the entire process.    I am happy to share with you more detail on how I think he came to that place if you are interested.  Primarily it was just time - and my constant cheerleading in his ear - "this thing isn't taking YOU down!  You're a fighter!  You're healthy!  There's another reason we are going through this.  The reason is NOT because your time here is done."  I was right - it didn't take his life and if his doctors are right, it never will. I think what you are feeling is just part of the process one goes through when receiving news like this.  You don't have all of the information yet - you will feel better once you know what you are dealing with.  For example, if your primary turns out to be HPV based, that is excellent news.  The cure rate for HPV based h/n cancers is very high.  I'm not into worrying about percentages and cure rates but it does help to know that.  And once you find your primary if a doctor tells you it's stage 4 DO NOT WORRY!  Our doctor explained to us that h/n cancer is often stage 4 and it's not the same thing as say a stage 4 breast or colon cancer.  Not the same thing at all.  Let us know what your results are.  You will find lots of support here from people who have been through the same treatments.  My husband would say that he started with that same fear you are feeling, but now that it's over we are both grateful from all of the things we learned from the experience.  That's another post though.  :) Much love ~ GDW   GoldDustWoman Mon, 09 Jan 2012 00:00:00 GMT John - Right now you're at an information gathering stage. Condeming your wife to widowhood or your girls to life-without-father is extremely premature. If the speculative news you received was sufficient to determine your demise, then I, and many other people on this board, wouldn't be here to support you. Did I feel like I was dying? Did you ever eat my mother-in-law's cooking? As hard as it might be, you've got to put panic and fear off to the side. Don't let your imagination determine your course. You need to know from the docs: - What do I have?- What do we do?- What are my options? Until you have been able to gather at least that much, there is no way to really determine the exact path to take. I saw your later post regarding hospitals - excellent question to ask. You should be asking questions and continue to ask questions. Knowledge is where you'll get your strength. Lots of us here are both students and teachers when it comes to cancer and treatment. And we're all eager to help and advise where we can. Because what we've found out is that cancer is nothing more than a disease. And it's a treatable disease. Gather up your information, involve your wife and daughters in the process. They're going to need to be helpful as well. And they can be very helpful in the process. Stay involved, stay calm, stay on course. You're stronger than you think. - Jeff ErthWlkr Mon, 09 Jan 2012 00:00:00 GMT Knowledge is strength! Right now, you are in shock and your mind wanders to some inevitable point in time since we all will die eventually. With the tests and data, you will draw strength to fight. Science has come sooo far, there will be many treatments available to rid the tumor. You don't even realize how strong you are. You will very soon. forhim1122 Mon, 09 Jan 2012 00:00:00 GMT Hi everyone! I'm a 50yo husband and father of 3 young girls.  About a month ago I noticed swelling in my neck just under the ear which turned out to be a large lymph node.  Saw an ENT last week who did an immediate CT scan, and she said the node showed necrotic cells, meaning that there was an aggressive malignancy somewhere in the head/neck that metastasized to the node.  Having a PET scan this week and meeting with an ENT/oncological surgeon on Monday who will be looking for the primary tumor in my head/neck so that they can biopsy it and find out what I'm dealing with here. What's weird is that I feel perfectly normal, even great, with an occasional slight throbbing in my neck.  And yet, I feel that I'm going to find out that this is the end. Would love to hear from someone who thought they were dying and had things turn around for them.  The Ativan is helpful, but I wish I felt more compelled to fight this than feeling finished before I start.  I can't let my wife and daughters down.  Thanks in advance for any comforting words. JohnnyO Mon, 09 Jan 2012 00:00:00 GMT