Latest messages for CancerCompass discussion http://www.cancercompass.com/message-board/message/all,1095,0.htm Fri, 24 May 2013 00:00:00 GMT Fri, 24 May 2013 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/    Aloha rq, How long has it been since you have done with your treatments? I had the thrush thing for about 8 months and it finally went away. It is an immune system thing and it won't really go away till your immune system is back to normal. I am sure your doctor is prescribing a magic mix for it and I ene have 1 bottle left after 3 years but It's been a really long time since I used it. Sounds like you may have some problems with your teeth later on so enjoy them while you can. I have anothe friend who let them take just a couple and now he is dealing with problems that has finally caught up with him. I wish I had not had mine taken out if only to be able to eat for a while at best. Aloha,Wildog  wildog Thu, 16 Feb 2012 00:00:00 GMT Dear Wildog: Funny you should mention speech. My speech is difficult. People can understand me, but, it is a chore just to say simple phrases. And, at times, I have to repeat myself. Plus, I have a problem with tongue thrush. I still get fungus on my tongue from time to time. This makes speech even more difficult. I have had several different types of medication for the thrush, but it always returns once I complete my dosage. I have been lucky with my teeth so far. I had a check up right before my treatments, and a follow up after my treatments, and I have no new cavities. But, a couple of fillings were weakened, and one is holding a plate on the front of my teeth. So, I may have dental work in my future. But, that was something I was probably going to have to face anyway. I used the aloe for my burns, and it did work. But, I still look as if I've been in the sun. Everyone says, I have my color back. I almost look like I have a great tan. But, it's from the radiation. And, my beard has returned to my face somewhat, but I have no beard on my neck as of yet. Life is different, but, it's good to be alive and to be able enjoy and appreciate everything it has to offer. May God Bless: Sincerely, Rick rg5860 Thu, 16 Feb 2012 00:00:00 GMT     Aloha rq, How is your speech now,mine change some but people can still understand me. Your teeth must have been in good condition but mine had to many fillings they told me. I talked with a lady who's husband had the same operation and radiation but he wouldn't let them take his teeth and now they have gotten so loose he can't eat with them and the wife blends all his food. I would make sure your dentist takes good care of yours so that hopefully the same thing won't happen to you. It would really be a nightmare if they have go in and pull them now and I was lucky because they took them all while I was still under some heavy pain meds and it was just like an operation. I sure do misss eating like a normal person though. I had the same burns but I just put real Aloe Vera on them and they were gone in a matter of days. Aloha.Wildog wildog Wed, 15 Feb 2012 00:00:00 GMT Dear Aloha,Wildog: Thanks for your reply. I DID get 8 weeks of radiation. I know what you are saying about the side effects. LOL. The reason they could not do surgery was because the tumor had grown inside of my tongue, and surgery would have completely cost me my speech. So, they treated me with high doses of Chemo. and radiaition. I have been lucky so far with my teeth, but, they are not as good as they were before. And, I did have have burns on my neck for a while, similar to a sun burn, as a result of radiaition. But, it melted the lump on neck down. And now, I have dry skin, and it's still a little red. But, it's almost normal. May God Less you and your family. Live long and well. Rick rg5860 Mon, 13 Feb 2012 00:00:00 GMT      Aloha Rick, Wow that is a strange story since they couldn't operate on the tumor because of it's location,but I glad to hear you are now cancer free and doing OK. I take it you didn't have to go through radiation treatments which was good for you because they play heck with your body and the after effects damage is not good at all. If I didn't have to gothrough Radiation I would be in a lot better condition then I am now.They took all of my teeth and the dentures I got don't fit all that good and I didn't go cheap on them. The reason they don't fit as good as they should is because the dentist didn't have any thing to refer to when it came to making the new dentures. My surgeon told me she tried to talk me out of giving the OK to take my teeth but I told her they had me so messed up on morphine I don't even remember her telling me that. How is your thyroid gland doing? I was told by some friends to make sure the doctors keep an eye on it because the radiation can really mess it up. Mine was OK till just a couple of months ago and now something is happening with it and the doctor is doing tests to find out what to do to it to get it back right but it doesn't bother me that much and because of it I am gaining back some weight finally after 3 years. The drinkable Aloe Vera saved my taste buds but I too wake up with the really dry mouth in the morning and it takes a few cups of coffee to fix that. You were lucky to have your family to help you because my family lives in AZ ( me too now ) and I was in Hawaii then but moved in July of 2010 to Az after over 40 years in on Kauai and I will most likely move back there sometime in the near future since that is where my heart and soul are. I had a huge lump on my neck and had a cat scan in 2007 but they said it was an infection but 1 1/2 years later I was tired of the lump and told the doctor it was time to get rid of it. When they did another cat scan this time was when they decided I needed a biopsy and that was when they found out it was stage 4 squamous cell cancer. they had the best ENT surgeon do the operation because the tumor was so close to my caratoid artery. Needless to say the quality of my life has gone down hill and if I ever get cancer again I am not going to fight it and just let it do it's thing and I will ask the doctor to just give me the happy pills. Take and live a long and prosperous life. Aloha,Wildog wildog Mon, 13 Feb 2012 00:00:00 GMT Hello: I have a similar story. I played basketball, loved swimming, went on vacations with my wonderful wife and family, and enjoyed hiking, and amusement parks and surfing on the beach. I was in great shape for a man at 53. And I did not smoke or drink. But, then my speech started to slowly deteriorate, then I started having a sore throat and could hardly swallow. In addition, I was loosing weight fast. I was misdiagnosed for about a year, until they finally discovered the tumor growing inside of my tongue. I had stage 4 Squamous cell cancer on the base of my tongue, and one tonsil, and it had spread to the lymph nodes in my neck. And, they could not operate because of it's location. I did have the chemo and radiation treatments at IU Hospital in Bloomington Indiana. Thanks to many prayers and the wonderful doctors and nurses at IU, I'm now cancer free. I loose some of my taste after a couple of bites of some foods. And I wake up with a very dry throat every morning. But, other than that, I feel great. I was down to 144 Lbs. But now, I'm back to 182 Lbs. I thank God and all of my friends and family for their support and prayers. And the staff at IU. They could not have been any better. The treatments are grueling. But, they are worth it. I think your friend is very lucky to have a friend like you. With your support, I think your friend will be do very well. Thanks Rick rg5860 Sun, 12 Feb 2012 00:00:00 GMT Hello fellow survivor: I have a similar story. I played basketball, loved swimming, went on vacations with my wonderful wife and family, and enjoyed hiking, and amusement parks and surfing on the beach. I was in great shape for a man at 53. And I did not smoke or drink. But, then my speech started to slowly deteriorate, then I started having a sore throat and could hardly swallow. In addition, I was loosing weight fast. I was misdiagnosed for about a year, until they finally discovered the tumor growing inside of my tongue. I had stage 4  Squamous cell cancer on the base of my tongue, and one tonsil, and it had spread to the lymph nodes in my neck. And, they could not operate because of it's location. I did have the chemo and radiation treatments at IU Hospital in Bloomington Indiana. Thanks to many prayers and the wonderful doctors and nurses at IU, I'm now cancer free. I also loose some of my taste after a couple of bites of some foods. And I wake up with a very dry throat every morning. But, other than that, I feel great. I was down to 144 Lbs. But now, I'm back to 182 Lbs. I thank God and all of my friends and family for their support and prayers. And the staff at IU. They could not have been any better. Thanks Rick rg5860 Sun, 12 Feb 2012 00:00:00 GMT On Jan 23, 2012 3:03 PM alivetoday wrote: Biotene rinse frequently and always carry water . I am thankfull that you can appreciate the difficulties of life with no saliva  thanks Mark     Aloha, alivetoday,I never really lost all my saliva glands but I do get dry mouth if I talk to much or ride my Harley and don't keep my mouth closed the whole time. The best thing was never loosing my taste buds. I find that a product called Mouth Kote works better that Biotene. I buy it on line from WalMart and by buying 2 at a time I get free shipping. Aloha, wildog Tue, 24 Jan 2012 00:00:00 GMT Biotene rinse frequently and always carry water . I am thankfull that you can appreciate the difficulties of life with no saliva  thanks Mark alivetoday Mon, 23 Jan 2012 00:00:00 GMT I saw your message and am glad you have survived two occurences.  I am amazed that you can run with no saliva.  I have very limited saliva and my throat hurts if I do any activity.  How have you adapted?    Paula paularae Fri, 20 Jan 2012 00:00:00 GMT On Jun 11, 2011 10:10 PM cammie5 wrote: my husband was diagnosed with HPV positive SCC base of tongue, stage 4 this year.  He finished 7 weeks of weekly chemo and daily radiation. Thankfully they gave him a peg tube right away because he eventually could not swollow anything, not even water. He still lost 35 lbs and although he's able to swollow again, he's still having a hard time maintaining his weight. His throat felt a lot better 2 weeks post treatment but suddenly this week it's feeling worse again. Is it normal for the sore throat to come and go like this?  Also, how long until he gets his energy back? He's so weak.  Lastly, the doctors seem to avoid my questions about his prognosis... if indeed the radiation and chemo worked and there is no evidence of disease in his PET scan next month...what are the chances of it coming back? Thanks.I was diagnosed with SCC of the left tonsil 4 years ago.  I rarely think about the chances of it coming back because I would rather focus on living my life to the fullest.  Ten years ago the same diagnosis would have been a death sentence for us but today there are chemo drugs that will eradicate our type of cancer.  God gave us a tremendous gift - a cancer that is cureable, rather than just treatable.  Sadly, many others with other types of cancer are not as fortunate.  The treatment is brutal and you are going to have ups and downs the first year.  Sore throats and fatiques are a couple of the downers.  I still don't have quite the energy I did before treatment but then I am 4 years older - and wiser.  I am a member of a disaster relief team and have been deployed to several areas after tornados and hurricanes post treatment.  I have also been blessed to go on several mission trips - in fact, I am currently in St. Lucia helping missionary friends for two weeks.  I believe that God blessed me with extra time to make a difference while I am able.  If I can improve one person or one family's life, then I leave something of worth behind.  Is there a chance the cancer will return - of course, there is a small chance (statistics are only numbers - and with the development of new chemo drugs all the time, what the number is today will not be next week, new month, or next year).  Any doctor that would offer a prognosis would be using guess work since statistics are derived from long term studies.  There is no way to compare the outcome of 10 years ago or five years ago with the outcome today.  Cancer robbed me of a year of my life - I won't let the small chance it will return rob me of any more.  Take one week or one month at a time - your husband will improve - will he be the same as before cancer - most likely not.  I can say having cancer made me appreciate life a whole lot more and take things for granted a whole lot less.  I wish you the very best - and there is light at the end of the tunnel.  Diana Dlynn1210 Wed, 18 Jan 2012 00:00:00 GMT On Jun 11, 2011 10:10 PM cammie5 wrote: my husband was diagnosed with HPV positive SCC base of tongue, stage 4 this year.  He finished 7 weeks of weekly chemo and daily radiation. Thankfully they gave him a peg tube right away because he eventually could not swollow anything, not even water. He still lost 35 lbs and although he's able to swollow again, he's still having a hard time maintaining his weight. His throat felt a lot better 2 weeks post treatment but suddenly this week it's feeling worse again. Is it normal for the sore throat to come and go like this?  Also, how long until he gets his energy back? He's so weak.  Lastly, the doctors seem to avoid my questions about his prognosis... if indeed the radiation and chemo worked and there is no evidence of disease in his PET scan next month...what are the chances of it coming back? Thanks.How is he doing now? alivetoday Wed, 18 Jan 2012 00:00:00 GMT Ya just never know. It may have not been sexually related though alivetoday Wed, 18 Jan 2012 00:00:00 GMT I'm new here, so not sure if you've received replies, but..... I had a 4a left tonsil sq. cell carcinoma and did the 35 radiation + 3 Cysplatin treatments, Feb/Mar 2009. I am still tired, everyday, all day. I now understand "chronic fatigue". I have been able to mentally psyche myself into getting back to my work and hobbies, but it's a constant battle. I have some sort of energy, but again, also feel like I have no energy. I feel fortunate to have neuropathy and something I found online called "parathesia". I say fortunate b/c only oxycodone/-contin relieves the parathesia, and it also helps me just get through the day. I also take some neurontin, but I do not like the way it makes me feel.  Taking them together is also ok.  I wonder if the fatigue will ever go away, so I've just had to tell myself "just keep moving" and not worry about that. My throat hurt for a few months afterwards, so a few weeks is expected. Prognosis: truth is, they don't really know. It's all a numbers game, but those numbers can really mean different things to different people, and it depends on how the numbers ("statistics") were derived. I use stats in my work and I can tell you, even if they told you "he has a 5% chance of recurrence...", you don't know what that 5% really means.  If, after about a year, the PET scan is clear, give thanks and go live life the best you/he can.  To put it another way, his chances of getting hit by a car, or lightening, are higher if the PET scan is clear. RE: peg tube. I will second all the comments about getting one ASAP. I did not get one until some 20 days into treatment and after I had lost 30+ pounds. That was a huge mistake on the part of all of us. I've only gained back ~5 lbs, and continue to struggle to gain additional weight. My appetite is so-so. I can taste most things, although lots of it tastes different than before. Mouth is ~1/3 dry, so some things like bread are impossible without fluid, at which point it becomes mushy dough. I still have trouble swallowing (and head for a throat dilation this month; lots of scar tissue still). People close to me said I was gray-skinned and kinda scary-looking for 20 months.... yes, they will tell you that everyone reacts differently, and yes it's information overload, but I kinda wish they had just been a bit more blatant.  I think those who don't react badly are the rare individuals, but that's another numbers game. jagerwin Wed, 07 Sep 2011 00:00:00 GMT my husband was diagnosed with HPV positive SCC base of tongue, stage 4 this year.  He finished 7 weeks of weekly chemo and daily radiation. Thankfully they gave him a peg tube right away because he eventually could not swollow anything, not even water. He still lost 35 lbs and although he's able to swollow again, he's still having a hard time maintaining his weight. His throat felt a lot better 2 weeks post treatment but suddenly this week it's feeling worse again. Is it normal for the sore throat to come and go like this?  Also, how long until he gets his energy back? He's so weak.  Lastly, the doctors seem to avoid my questions about his prognosis... if indeed the radiation and chemo worked and there is no evidence of disease in his PET scan next month...what are the chances of it coming back? Thanks. cammie5 Sat, 11 Jun 2011 00:00:00 GMT Hi Joanne - Your brother is the first I have heard that had it in both tonsils - and there are a lot of us on here.  There may be no reason for it other than it is more commonly found in only one tonsil.  I don't know what you've read, but what has been recommended is fairly standard treatment - other than chemo every day - generally it is once a week.  I had Squamous Cell Carcinoma (SCC) of the left tonsil and underwent radiation twice daily that extended from 7 weeks to 10 weeks due to complications.  I also had Cisplatin chemo once a week for five weeks. Joanne - everyone on here who has had treatment for tonsil cancer will be straight with you.  Chemo and radiation treatments for tonsil cancer are brutal - but your brother will get through it.  Many of us have and we have a few scars to show for it but we made it.  There are a few things that come to mind.  First I would encourage your brother to get dental trays to wear during radiation treatments.  This is one that I have found that is not always recommended.  I was treated at Cancer Treatment Center of America and my radiation oncologist insisted on them.  They help to protect your teeth and gums from the radiation.  Some have even been told to have all their teeth pulled but that is not always necessary unless they are all bad (I only had 5 back teeth pulled).  Your dentist does have to make the trays as they fit closely over your teeth.      Also, I had what they call TOMO Therapy (radiation).  I researched it heavily - finally calling a huge hospital in St. Louis that had two different types of radiation machines and the head of the dept told me if it were her and THIS type of cancer, she would go for the TOMO.  Why?  Because it is more precise on organs that don't move - and helps retain most of the salivary glands - which is VITALLY important.  We don't think much about dry mouth - but saliva rinses our mouths - getting rid of bacteria.  Also, the two radiation treatments a day splits up the amount of radiation you receive at one time - and lessens the side effects.  You will have lots of questions and if you go directly to head and neck cancer section - and look for tonsil cancer - you will find many of us who are on here - some tonsil cancer patients - others tonsil cancer survivors.  It used to be a rare cancer but is becoming more common.  There are so many of us that come back to help others who are now on the journey that we have already taken so someone is always on Cancer Compass daily - usually several of us - that can answer questions, offer tips, and generally walk your brother through treatment.    I'm not sure what they are talking about "unusually stage 4" means.  I learned early on in treatment, if I don't understand something ask the doctor point blank.  They don't always tell you things because according to them, not everyone experiences the same effects.  While true, I think it has more to do with giving us to much to handle at one time.  I know many times tonsil cancer is often a stage 2 - stage 4 is a little more advanced.  As for the cure rate of head and neck cancers, my oncologist told me at my last checkup that ten years ago this was a death sentence, but they now have a chemo drug that can kill the cancer.  Perhaps that is what your doctor is referring to.  I often say that tonsil cancer is the cancer of choice - if we had to have cancer.  Many cancers are only manageable rather than cureable.  While someone may say we are not cured, I beg to differ.  I had a full body scan the end of Aug and it showed NO cancer in my body.  It may reoccur some day but I don't let "what if tomorrows" dictate my todays.      You will find we are like a family on here - a cyper family but one who understands totally what patients and caregivers are going through because we have been there - done that.  Many, like myself, remember our CC family in our daily prayers.  Take care and please let us know how the second opinion goes.  Since your brother is only 140 lbs, if the doctors recommend a feeding tube (which they most likely will), I would strongly recommend he get one before beginning treatment.  I lost 22 lbs in the first 2 1/2 weeks before finally agreeing to one.  It became a life line for me.  Water is very important while undergoing chemo - to flush the chemo out of your body.  If he becomes unable to drink - or drink as much as needed, the feeding tube is an easy access as is for nutrition and medications when the nausea gets to be too much.    Diana        P.S.  Another tip - take along a tape recorder and record the sessions with the doctor.  There is so much coming at you right now, that it is easy to miss something - and also hear something you don't understand but as you become more cancer knowledgeable, you will get it.    Dlynn1210 Sat, 29 Jan 2011 00:00:00 GMT My brother, whose 47, was diagnosed with Squamous Cell Carcinoma of the tonsils ( stage 4)  and has 2-3 lumps in the lymp nodes on the  left side of his neck in dec 2010. He had cancer in both tonsils, which doctors said was, uncommon to have it in both. Still not sure why. The tonsils were removed last week.   The treatment they are sugesting now, jan. 28 2011, is radiation and full body chemo 5 days a week for 7 weeks. he weighs in naturally at only 140 pounds. We are going for a second opinion next week in Boston. The treatments that I have read here, dont seem as severe as the one my brother will receive.. The doctor also implied-  the stage 4 cancer, he said, is an un-usally stage 4 meaning, the head and neck are more easliy dealt with, or cured. ?? Has anyone been told there are different stage 4 cancers???? Thanks for your help Joanne tinymark Sat, 29 Jan 2011 00:00:00 GMT On May 22, 2006 12:00 AM Juclay wrote: Hello folks, I've read accounts of several people's experiences with SCC and my best wishes go out to all. I was diagonsed with SCC on my tongue in August of 2004 and immediately made my way to M D Anderson in Houston. These guys are considered the world's best. When I first got there, it scared the Hell out of me because it is so big and they come out of the wood work like a bunch of bumble bees. After a full evaluation, it was decided to perform an operation that would include the removal of 30% of my tongue and a partial neck disection involving an incision from behind my left ear to below my chin. Sounds scary but the scar in not very noticible and the removal of part of my tongue has affected my speech very little. After the operation, they decided I needed six weeks of radiation. This required the removal of three of my teeth on the left side. This was done all at one time and frankly it was the most painful thing I endured. The radiation was another story unto itself. The six weeks (five days a week) of radiation was not so bad at first. I didn't have any side effects for the first 10 or so treatments. Then it hit the fan. I developed a strong metallic taste in my mouth and everything tasted horrible. This happened the day before Thanksgiving. I continued treatment until Dec. 28th 2004. As a result of the treatment I developed ulsers in my mouth and had a difficult time eating. I lost 50 pounds. All in all I wouldn't wish radiation therapy on my worst enemy. They tried to talk me in to inserting a feeding tube, but I told them no way. Even though I lost from 197 down to 147 pounds, 30 of the 50 pounds was weight I needed to lose any way. I did find out I couldn't maintain my weight by drinking Boost. Even that was hard to get down. In January of 2005 I decided to join a health club, which I did and started working with a personal trainer. He helped me with not only regaining my strength, but with my nutrition also. He got me started on a supplement called Cytogainer-made by Cytosport. Since I joined the health club and started taking supplements I've gotten myself back into best shape (170 lbs.) I've been in since high school (I'm 61 years old). I would highly recommend it. Ive had several check ups since my last radiation treatment and all is well (at least for now). My doctor says I'm her recovery poster boy. My radiologist says in his 13 years at MDA, he has not seen anyone recover as fast and as well as I have. For any body faced with similar treatment, I would highly recommend the use of liquid supplements such as Cytogainer during your treatment to maintain your weight and to regain your health after treatment, join a health club and work like your life depends on it. It does!!My brother, whose 47, was diagnosed with Squamous Cell Carcinoma of the tonsils ( stage 4)  and has 2-3 lumps in the lymp nodes on the  left side of his neck in dec 2010. He had cancer in both tonsils, which doctors said was, uncommon to have it in both. Still not sure why. The tonsils were removed last week.   The treatment they are sugesting now, jan. 28 2011, is radiation and full body chemo 5 days a week for 7 weeks. he weighs in naturally at only 140 pounds. We are going for a second opinion next week in Boston. The treatments that I have read here, dont seem as severe as the one my brother will receive.. The doctor also implied-  the stage 4 cancer, he said, is an un-usally stage 4 meaning, the head and neck are more easliy dealt with, or cured. ?? Has anyone been told there are different stage 4 cancers???? Thanks for your help Joanne tinymark Sat, 29 Jan 2011 00:00:00 GMT On Oct 23, 2010 12:01 AM Tigereyes wrote: I dont mean to pry, but what kind of cancer did you have. As I read these post I havent heard anyone say andthing about HPV. Squamous Cell in the throat is caused by HPV. I had surgery on May 13, I had a large lump in my neck that I had noticed back in Feb. I lost my job in Oct of 09. With no medical insurance no one would help me find out what was wrong with me. I pasted out in early May from the pressure in my neck. I went to UAB in Birmingham. I went to the ER on Tuesday the 11th, saw Dr. Carrol at the Kirklin clinic on the 12th and was schedule for surgery on the 13th. Then I found out two weeks later it was cancer. When I went to go see the radiologist she told me this cancer was caused by HPV (human papillomavirus). My jaw hit the floor. How could this be. I am a single mother of three and I had not dated nor had sex what anyone in over 9 years. I had started dating this guy back in Aug of 09. The thought of me getting cancer from having oral sex was more then I could bare. I am 40 years old and I have always been careful. The thought of getting cancer from a virus that you might not even know you even had was to much. HPV is mostly known to cause cervical caner. People need to be aware that it can cause neck and throat cancer as well.Steph already mentioned a couple of these . . . oral squamous cell carcinoma has a strong correlation with: 1. Combination of smoking and drinking, particularly heavy with one, the other or both.  One or the other alone (particularly heavy) has a correlation, but not as high as the two combined. 2. Human Papilloma Virus. 3. Severely compromised immune system. The body can fight off SCC cells easier than some other cancers.  Not a strong correlation, but is one of the standard questions asked and investigated when a primary source is not found for the SCC discovered metastatic in head/neck lymph nodes.  If the immune system is still severely compromised, that will also need to be treated (if it can be). 4. None of the above, but not a strong correlation.  Fecal matter happens and the percentage is not tiny. jalind Mon, 01 Nov 2010 00:00:00 GMT On Oct 23, 2010 12:01 AM Tigereyes wrote: I dont mean to pry, but what kind of cancer did you have. As I read these post I havent heard anyone say andthing about HPV. Squamous Cell in the throat is caused by HPV. I had surgery on May 13, I had a large lump in my neck that I had noticed back in Feb. I lost my job in Oct of 09. With no medical insurance no one would help me find out what was wrong with me. I pasted out in early May from the pressure in my neck. I went to UAB in Birmingham. I went to the ER on Tuesday the 11th, saw Dr. Carrol at the Kirklin clinic on the 12th and was schedule for surgery on the 13th. Then I found out two weeks later it was cancer. When I went to go see the radiologist she told me this cancer was caused by HPV (human papillomavirus). My jaw hit the floor. How could this be. I am a single mother of three and I had not dated nor had sex what anyone in over 9 years. I had started dating this guy back in Aug of 09. The thought of me getting cancer from having oral sex was more then I could bare. I am 40 years old and I have always been careful. The thought of getting cancer from a virus that you might not even know you even had was to much. HPV is mostly known to cause cervical caner. People need to be aware that it can cause neck and throat cancer as well.Steph already mentioned a couple of these . . . oral squamous cell carcinoma has a strong correlation with: 1. Combination of smoking and drinking, particularly heavy with one, the other or both.  One or the other alone (particularly heavy) has a correlation, but not as high as the two combined. 2. Human Papilloma Virus. 3. Severely compromised immune system. The body can fight off SCC cells easier than some other cancers.  Not a strong correlation, but is one of the standard questions asked and investigated when a primary source is not found for the SCC discovered metastatic in head/neck lymph nodes.  If the immune system is still severely compromised, that will also need to be treated (if it can be). 4. None of the above, but not a strong correlation.  Fecal matter happens and the percentage is not tiny. jalind Mon, 01 Nov 2010 00:00:00 GMT Andy had his neckdisscetion 7 months after his treatments. When Andy had his 6 month PET scan in Oct 2009 they still found some activity going on, so he had a neck dissection on 11/5/2009. Andy had gone back to see the doctor the first week of December 2009 because he was seaping pus out of the area in his neck where the stitches had been. Andy had an infection so the doctor put him on a antibiotic untill after the first of the year Jan 2010 and opened an small area in the middle of his neck where it was seaping pus. I had to pack the area twice a day with packing strips, with using twizzers as far as I could get it. When I took him back to the doctor in Jan the doctor said that the antibiotic had did a reverse on him and it made the infection grow. The doctor put him on a different high dose of antibiotic . So to make a long story short it took 5 months of packing his neck area and taking antibiotics before it finally cleared up. As of today, Andy is doing good he had his PEG tube remove the first of October and he is eating really well and also drinking 6 ensures a day with meals. However, he doesn't seem to put on weight. I think mainly it is because he seems to go to the bathroom all day, as if it just goes right through him unless it is the salagan that he is taking. Is your friend having the Chemo/Cisplatin and the radiation. Are you your friends caregiver? Patty   Proxielocks Mon, 01 Nov 2010 00:00:00 GMT Hi Ron, My wife and I spent 2wks in Maui before I was diagnosed. Maui is my favorite place! I was 179lbs and dropped to 138lbs. I've gained over 20lbs back and starting to fit all my clothes again. Same thing with the taste. Can taste first spoonful of ice cream or cake and that's it! Starting to taste other food somewhat. The throat, inside mouth pain is excruciating. I know exactly what you are talking about. My last radiation was Dec 15 last year. The sides of my tongue are still swollen and tender. The flouride trays really irritate. Stay strong Ron. Everyday above ground is a good day! Live for the moment! SogoodSofar Mon, 01 Nov 2010 00:00:00 GMT Squamous Cell Carcinoma..........primarily caused by smoking,.....and drinking.  I smoked, didn't drink heavily..... Also caused by HPV......... Bottom line..........it sucks.  If you smoke, stop.  If you drink.....don't drink heavily.  And for the rest.......whatever! Steph steph_rn Sat, 23 Oct 2010 00:00:00 GMT Hi, My cancer is a Squamous Cell Carcenoma and is an anal cancer! I had been told that it was haemmoroids, but in the end I self diagnosed as it being cancer, much to the disagreement of my GP. I had an emergency colstomy on the 10th May and had invasive treatment for six weeks. Was not able to sit down properly for four months and am now feeling much stronger. It is sometimes hard to remain positive at times like this but good to be able to share with others out there who have undergone such difficult times. kitty36 Sat, 23 Oct 2010 00:00:00 GMT I dont mean to pry, but what kind of cancer did you have. As I read these post I havent heard anyone say andthing about HPV. Squamous Cell in the throat is caused by HPV. I had surgery on May 13, I had a large lump in my neck that I had noticed back in Feb. I lost my job in Oct of 09. With no medical insurance no one would help me find out what was wrong with me. I pasted out in early May from the pressure in my neck. I went to UAB in Birmingham. I went to the ER on Tuesday the 11th, saw Dr. Carrol at the Kirklin clinic on the 12th and was schedule for surgery on the 13th. Then I found out two weeks later it was cancer. When I went to go see the radiologist she told me this cancer was caused by HPV (human papillomavirus). My jaw hit the floor. How could this be. I am a single mother of three and I had not dated nor had sex what anyone in over 9 years. I had started dating this guy back in Aug of 09. The thought of me getting cancer from having oral sex was more then I could bare. I am 40 years old and I have always been careful. The thought of getting cancer from a virus that you might not even know you even had was to much. HPV is mostly known to cause cervical caner. People need to be aware that it can cause neck and throat cancer as well. Tigereyes Sat, 23 Oct 2010 00:00:00 GMT     Aloha schweet, I used drinkable Aloe Vera while going through radiation after surgery for stage 4 cancer of the tonsils. The Aloe Vera saved alomost all of my salivary gland output and I never lost my taste buds. I would swish the aloe in my mouth 4-5 times a day and just before and after rad treatment. All the doctors and Radiation techs that worked on me now advise their patients that are going through what I did to use the aloe vera. My radiation doctor had never had a patient use it and is glad there is something to help. There are many kinds on the market and I suggest getting a high quality brand that you can see the pulp in and not a cheap brand. I live on Kauai and the surgery and radiation was done on Oahu, surgeon was Kristi Adachi at Queens and Rad doctor was Dr Kanemori at Kua Kini hospital. Aloha,Wildog wildog Thu, 02 Sep 2010 00:00:00 GMT Hi, My husband had or has squamous cell of the vocal cords. He is 4 months out of chemo and radiation. Dr. Diaz is also his doctor. in fact we are in Houston now and will be seeing him in the morning. Our ent at home says my husband needs another biopsy. Please keep him in thoughts and prayers.  chrystalmc Mon, 30 Aug 2010 00:00:00 GMT On Feb 23, 2005 12:00 AM Confused wrote: I put a message on the board after reading your message Judy yet I didn't remember where I saw it to re-find it...so I apologize if this is redundant. We are in New York. My husband was diagnosed a week ago with Stage 4A lateral tongue base SCC which is also in a lymph node (a few involved I think)...no spread to lung or bone.... Just had a sore throat too long and the ENT said "did you know you have a lymph node the size of a golf ball?" We didn't notice it, feel it...anyway, here we are confounded by proposals re treatment...4 experts, 4 opinions re approach...yet none have suggested chemo as primary...nor to avoid radiation. Radiation has been involved in each opinion 1) radiation and chemo as adjuvent 2) surgery, radiation and chemo as adjuvent 3) radiation, brachytraumatherapy implants, chemo as adjuvent and, 4) transoral lazer microresection, radiation and chemo. I wondered where the location of the SCC was on the tongue and what Stage re what you shared? They told us we need to act fast so I am not sure that we can get an appointment with the person you suggest yet I'll try... Any thoughts you have would be greatly appreciated! Regards, Carmen (for Scott)Hi Carmen.  I too live in NY.  Was dianosed back in January with SCC only because I too had developed a lymph node in my neck that was the size of a golf ball.  They found my primary in the right retromolar trigone in my mouth.  It was only staged as the stage 4 cancer after my surgery because of the spread that they encountered in order to obtain clean margins.  Although I obtained 2 opinions in NYC and another two in Boston, no one disagreed on the surgery that had to be done - the only diffences had to do with the surgical technique - a consideration that ultimately dictated where I had the surgery.  Modified radical neck dissection, removal of a sizable amount of gum tissue that was reconstructed with a live skin graft from my left forearm.  I'm now going through radiatiation and chemo.  Again, all consults agreed of this course of action post surgery.  Began with one dose of cisplatin.  Became so ill from that that they they have switched to weekly IV infusions of Carboplaten which so far, I'm having no side effects from.  Will ultimately have 35 radiation tx. Would really like to be in touch with someone locally who has gone through a similar ordeal.  Good Luck.       joanchris Thu, 29 Jul 2010 00:00:00 GMT On 3/9/09 i was diagnosed with stage 4 squamish cell carcinoma. I had a Pet Scan which showed my cancer was located in my neck and had not spread. I had my tonsils removed first to make sure that was the sourse. I had 3 choices of treatment chemo, radiation then possibly surgery, just chem & radiation or surgery with the possibilty of chemo & radiation if the could not get all of the cells. I am glad i had the surgery 1st the ENT removed 23 lyph nodes one of which was positive. The ENT said it was a good thing we chose surgery 1st due to the fact none of the scans showed that the lymph node was 4cm located between the corartive art. & the jugular vein. He had to remove the jugular and do a lot of cleaning which effected my shoulder muscles & nerves on the right side of my neck. If i had radiation & chemo 1st i would not be writing this note, because the radiation & chem would not have destroyed the lymph node. My ENT was great and all of my treatments were at B.U. Medical in Boston. Six weeks after the surgery i started Chemo every Monday & radiation Monday- Friday for 7 weeks. I was fine for the first five weeks then my wife had to drive me every day for the treatments. I ended my treatments at the end of Aug 2009. The worst part was the right side of my neck had second degree burns. I ended up with thrush which lasted until Nov.natura lly i couldn't swallow so i ended going to the hospital every day until Oct. getting I.V.s so i wouldn't get dehydrated.I ended up loosing 50 lbs, i refused getting a feeding tube & i am glad i did. I had enough pain with out dealing with that. I have gained thirty lbs. back & i want to stay at 140 lbs.. I have had 2 Pet Scans since the end of treatment & both showed that i am cancer free. So it was definately worth everything i went through. I think what helped me the most is i had a very positive attituded from the beginning. In April i started feeling better, my taste is probably 60% back & the dry mouth only bothers me sometime. My biggest problem is fatigue, I have gone back to work, a desk job, for 4 hours a day Monday, Wednesday & Friday. I need Tuesday Thursday and sometimes Saturday to recharge my battery. I did not mean to give the whole saga of my ordeal. My main question is, how long should i expect to suffer from this fatigue. I also hope the history of my ordeal helps all of you that are starting your journey that there is definately light at the end of the tunnel. God bless all of you. Rick       hirehand Fri, 09 Jul 2010 00:00:00 GMT Lily111  I am exactly in your shoes.  I am my sister's sole caregiver here in Houston, Texas,  She is going to MD Anderson. I too am a mess inside.  Let me tell you that my sister had undergone about 6 radiation treatments and is still managing to eat well.  I recommend Carnation Instant Breakfast, High Protein Ensure and Boost Drinks if she is unable to east any other way. As for you, you need to seek help wherever you can for your mental health and in turn, physical health or you may get ill yourself.   I do not know where you live but I am in Houston, Texas. Also, once your mother starts radiation, she will need to protect her skin.  Please try Aquaphor (you can get it from any CVS Pharmacy or any other Pharmacy) and get her some pure Aloe Vere ointment also for her face.  Another very good cream for her to use is Miaderm which was created bvy Radiation Oncologists ( get it at Miaderm.com ). I am feeling everything you are feeling and I will pray for your strength and your mother. Take Care.         schweet Sat, 03 Jul 2010 00:00:00 GMT My husband had stage 4 squamous cell in the tonsil and the base of his tongue, almost 4 years ago.  In the past year, he has had 40% of his colon removed, half of his left lung, and three surgeries to remove lymph nodes that were positive for small tumors. He has had radiation twice and is on his third Chemo.  This is a relentless disease and my thoughts and prayers are with you all. shepael Tue, 27 Oct 2009 00:00:00 GMT My husband went through this about 4 years ago and he finally had to give in and have a feeding tube placed temporarily. shepael Tue, 27 Oct 2009 00:00:00 GMT Go to md anderson if you can!!!!!!! CHRISTY_KAYE Tue, 25 Aug 2009 00:00:00 GMT We are arriving on sept 8th for my dad to see the drs for the same cancer tounge then to his lungs now in his neck  . CHRISTY_KAYE Tue, 25 Aug 2009 00:00:00 GMT Hi all, I realize this thread is rather old but I am hopeful people are still available to respond. My name is Renee I am signed in under my husbands account. I am 38 non-smoker, occasional drinker (3-4 times a year).  I was diagnosed Nov 14 2008 with Stage IV T2N2bM0 Tonsillar Cancer. I have yet to start treatment. I had my first opinion at University of Chicago with Dr. Vokes which I understand is one of the best for Head and neck cancers. My second opinion has been at CTCA in Zion Illinois. I feel really confused about the choice I have to make. Please HELP!The treatment team at UC recommends a course pretty different from CTCA however CTCA offers everything UC does not....travel accomodations, a family atmosphere, moral support, wholistic medicine, naturopaths....plus medical expertise.. UC:   5 days inpatient 9 days outpatient-for 5 cyclesChemo- 1) Hydroxyurea by mouth every 12 hours for 5 days  2) 5-FU given continuously for 5 days 3) Docetaxel- IV over 1hour on Mondays. Radiation twice a day to tumor site. (all during  5 day inpatient) CTCA- Chemo- 1) Hydroxyurea by mouth every day 2) Cisplatin bolus every 3 weeks. Radiation once a day M-F. For 2 months.Two very different approaches? My doctor at CTCA says he will follow UC's protocol if that is what i want but that there is no documentation that proves this aggressive approach improves cure rate or reduces reoccurence rate he says it is all still very much in trial phase. However being that head and neck cancers are such a small percentage of all cancer.....I am concerned that even a place as amazing as CTCA may not have the expertise that a place that specializes in head and neck cancer might have. I wish to stay at CTCA but do not wish to make it complicated by wanting a treatment plan they are not used to giving ....plus I have no real clue which is better? Truly I do not know what to do? If I went to UC I loose everything else that is important?  If I went to UC I would lose everthing else that  i believe is important to me. I am currently scheduled to start treatment at CTCA on 1/13/2009.All feedback appreciated. I am so tired of trying to make sense of it all... God Bless and ThanksRenee yazman Sat, 03 Jan 2009 00:00:00 GMT Please consider evidence based medicine. It is a tragedy that people become disillusioned by standard medical care and turn to superstitious beliefs such as the commenter posted here about vitamins and other sCAM medicine. Is the medical community perfect? No. Can they cure everything? No. But what is the alternative? Magical thinking and scam artists taking advantage of the most vulnerable desperate people.Look for evidence based medicine. The best cancer experts in the world are keeping people alive longer and longer. The medical community has been tremendously successful. What has the sCAM community accomplished? Nothing but tragedy and ripoffs. There are a number of sources on the Internet that can help people navigate the scientific realm without any connection to profit making whatsoever. Myself and thousands of others are just interested in promoting rational thinking. In this age of information and science, that people still turn to magical thinking and nonsense is so unfortunate. My Mom has cSCC and after 3 surgeries (tumors recurred in very short time) she has now 2 new tumors. I have come looking for a reliable prognosis. She is 82.  The Internet sources all discuss prognosis for cancers when they first occur. I am having trouble finding sources for prognosis when a person's cancer is growing so rapidly that treatment seems to be constantly behind the race. She will begin radiation therapy next week. I and my siblings want to make the best decision for her. She cannot make the decisions for herself though her quality of life is worth preserving if it is reasonably feasible. We have decided to try the radiation and see how she tolerates it. For those of you that have tried and lost loved ones, did you feel the discomfort the person experienced from treatment was worth it or not?  I assume my Mom will also be in discomfort from the cancer so I'm wondering if the radiation is the lesser of 2 evils or if it will just make her last days more miserable. Any personal stories are welcome. skeptigirl Sat, 25 Oct 2008 00:00:00 GMT  On 10/6/2008 ShellyE wrote: On 8/2/2008 Jenny92 wrote: On 4/16/2008 HeidiTony wrote:i really need your help. my husband (who is also a generally healthy man) was diagnosed on tuesday with squamous cell in his tonsils. how do i give him support and tell him to be positive KNOWING that he is soon going to be in HELL? i just recovered from cancer myself and i just dont know how to be strong for him. he is only 46 and i am only 33. this is everyone nightmare and i dont know how to be strong for him. i am reading in this message board that he is really in for it. what do i do? Hello,   I am new to this web site.  I found it as I was browsing the internet for info on SCC.  My parents and I  just found out my dad who is 61 basically healthy has squamous cell carcinoma of the left tonsil.   I am very close to my dad and this is just a nightmare!!!!  We are new to  cancer  and in major shock!!   About 2 months ago a lump came up on the left side of his neck.  He went to his primary Dr. where they treated him with antibiotics for possible infection.  After about 3 wks mass was still there .  Went to ENT Dr .  and scheduled to remove mass.  The mass along with the lymph node and a cyst was removed.  That was last week and since then our lives have been turned upside down!  Results came back cancer....went straight to cancer center in Kingwood Tx ,Dr. Sethi.  Blood work was done and pet scan scheduled .   Pet scan showed cancer in the left tonsil.  We were hit with ...Radiation and Chemo!  Dr says removing the tonsil is not an option!   We are really scared of the side effects from chemo and radiation.....but what else do we do?  Will he be able to continue to work?  He  has to keep his job for the Insurance.  If any one can give me some advice I would greatly appreciate it!Thanks,Jen    have you checked into any alternative medicine? Like the high dose vitamin C infusions.  My sister has Squamous Cell Cancer andwe are looking at those options since Chemo and Radiation are only helping temporarily.  I really believe in hollistic medicine.  Heroncologist is going to work with her Dr in alternative medicine to findthe right protocol for her. ShellyE Mon, 06 Oct 2008 00:00:00 GMT  On 8/2/2008 Jenny92 wrote: On 4/16/2008 HeidiTony wrote:i really need your help. my husband (who is also a generally healthy man) was diagnosed on tuesday with squamous cell in his tonsils. how do i give him support and tell him to be positive KNOWING that he is soon going to be in HELL? i just recovered from cancer myself and i just dont know how to be strong for him. he is only 46 and i am only 33. this is everyone nightmare and i dont know how to be strong for him. i am reading in this message board that he is really in for it. what do i do? Hello,   I am new to this web site.  I found it as I was browsing the internet for info on SCC.  My parents and I  just found out my dad who is 61 basically healthy has squamous cell carcinoma of the left tonsil.   I am very close to my dad and this is just a nightmare!!!!  We are new to  cancer  and in major shock!!   About 2 months ago a lump came up on the left side of his neck.  He went to his primary Dr. where they treated him with antibiotics for possible infection.  After about 3 wks mass was still there .  Went to ENT Dr .  and scheduled to remove mass.  The mass along with the lymph node and a cyst was removed.  That was last week and since then our lives have been turned upside down!  Results came back cancer....went straight to cancer center in Kingwood Tx ,Dr. Sethi.  Blood work was done and pet scan scheduled .   Pet scan showed cancer in the left tonsil.  We were hit with ...Radiation and Chemo!  Dr says removing the tonsil is not an option!   We are really scared of the side effects from chemo and radiation.....but what else do we do?  Will he be able to continue to work?  He  has to keep his job for the Insurance.  If any one can give me some advice I would greatly appreciate it!Thanks,Jen    ShellyE Mon, 06 Oct 2008 00:00:00 GMT  On 4/16/2008 HeidiTony wrote:i really need your help. my husband (who is also a generally healthy man) was diagnosed on tuesday with squamous cell in his tonsils. how do i give him support and tell him to be positive KNOWING that he is soon going to be in HELL? i just recovered from cancer myself and i just dont know how to be strong for him. he is only 46 and i am only 33. this is everyone nightmare and i dont know how to be strong for him. i am reading in this message board that he is really in for it. what do i do? Hello,   I am new to this web site.  I found it as I was browsing the internet for info on SCC.  My parents and I  just found out my dad who is 61 basically healthy has squamous cell carcinoma of the left tonsil.   I am very close to my dad and this is just a nightmare!!!!  We are new to  cancer  and in major shock!!   About 2 months ago a lump came up on the left side of his neck.  He went to his primary Dr. where they treated him with antibiotics for possible infection.  After about 3 wks mass was still there .  Went to ENT Dr .  and scheduled to remove mass.  The mass along with the lymph node and a cyst was removed.  That was last week and since then our lives have been turned upside down!  Results came back cancer....went straight to cancer center in Kingwood Tx ,Dr. Sethi.  Blood work was done and pet scan scheduled .   Pet scan showed cancer in the left tonsil.  We were hit with ...Radiation and Chemo!  Dr says removing the tonsil is not an option!   We are really scared of the side effects from chemo and radiation.....but what else do we do?  Will he be able to continue to work?  He  has to keep his job for the Insurance.  If any one can give me some advice I would greatly appreciate it!Thanks,Jen   Jenny92 Sat, 02 Aug 2008 00:00:00 GMT  On 5/28/2006 Bruin wrote:Would like to know more about this particular cancer which mine is coming from somewhere in the throat but they've done 27 byopsys and cannot find the primary. There is a large mass on the right neck. They have suggested Radiation of the entire throat area, sinus cavities 5 days a week for 6 to 7 weeks and Chemo I.V. drip on Monday and wear a pump the rest of the week. 6 to 7 weeks. In addition I have atrial fibulation, high blood pressure, collesterol problems and am on blood thinner. I believe in quality of life not just quantity so I want to live the time I have left as active as I can be. I just want to know if there is a chance the treatment will allow me to have that style of living. Also, don't know what the recovery rate is under these conditions. I have been on a no sugar and no carbohydrate diet for 4 days and some supplemental items that don't interfere with my heart, blood pressure or blood thinner medicine. Any help anyone can give will be most appreciated was wondering if you found the source of your cancer. we  went to sloane for opinioin and were told if you can't find the primary source you should have neck disection. Our ENT agrees. Of course, the radiologist and oncologist say chemo and radiation, and the surgeons say surgery.  My husband also had a tumor in his lung stage 1A but, it was not scc it was bronchiovilla adneo carcenoma. T hey say he is a very interesting case. He had a lobectomy 4 weeks ago and they say  the lung cancer is gone. He needs ct every 6 months now to make sure it doesn't come back. The next step for him is to do triple endoscopy and take out his tonsils. I guess we are hoping it is is in the tonsils so we know where it is coming from. He has a large scc over 2c in  right node. Found it when he got an infection in there. Thank God. Then he went into a- fib and when they were doing heart studies they found the small tumor in his lung. Thank god they found that so early.Two years ago he had prostrate cancer and had his prostate removed at Mount Siani hospital. He is incontinet and has no feeling after that. So he has had quality of life changes already and is really dreading more. The lung surgery was supposed to be minimally invasive but it wasn.t. So he is pretty freaked out about his surgery in three days.  I guess if I was him I would be too. It is really hard on loved ones also. Sometimes I feel so positive and so strong and sometimes I want to scream why him why us and I get angry. I have heard all the horrors of radiation and I think I would prefer to go through a sugery instead if I had a choice. He may need all three things surgery, chemo and radiation. I am so glad i founf this web site to share info and emotions with you all. Rodswife Sun, 13 Jul 2008 00:00:00 GMT My husband also has tonsil cancer.  His is squamous cell cancer of the tonsil.  He is schedule for surgery on July 17th to remove his tonsil and then will have radiation.  Are the side effect of radiation as bad as everyone say online.     happy8898 Thu, 26 Jun 2008 00:00:00 GMT We were told last Friday that my husband has Sauamous Cell Carcinoma of the tonsil.  The doctor is going to remove the tonsil and begin radiotherapy.  I feel totally confused and scared.  I have read if they do surgery it may spread the cancer.  happy8898 Mon, 23 Jun 2008 00:00:00 GMT my mom was just diagnosed with scc stage4 and i dont know how to deal with this. i cnt stop crying, im out of my mind help me Rachel88 Wed, 30 Apr 2008 00:00:00 GMT i really need your help. my husband (who is also a generally healthy man) was diagnosed on tuesday with squamous cell in his tonsils. how do i give him support and tell him to be positive KNOWING that he is soon going to be in HELL? i just recovered from cancer myself and i just dont know how to be strong for him. he is only 46 and i am only 33. this is everyone nightmare and i dont know how to be strong for him. i am reading in this message board that he is really in for it. what do i do?  HeidiTony Wed, 16 Apr 2008 00:00:00 GMT Hi Carmen:I am in Australia and thought I might offer a word of comfort, and a little insight into my experiences with this insidious disease. Like your husband, I was diagnosed as Stage 1V, base of the tongue SCC with significant spread to the neck. The diagnosis followed two visits to my GP who, on both occasions, prescribed a course of antibiotics to reduce the swelling in my glands, supposedly the result of a mystery infection. A third visit, where it was noted the swelling had not reacted favourably to the antibiotics, in fact had actually increased in size. This prompted my GP to order a scan and subsequent referrals and tests led to the diagnosis by a man to whom I owe my life! I do not know if your system is similar, so bear with me while I attempt to explain the processes used to determine the most appropriate treatment to attack whichever stage the disease has reached prior to diagnosis. My ENT Specialist referred me to a Head and Neck Cancer Clinic. These clinics are conducted each Thursday AM in Queensland's main hospital and are attended by leaders in all relevant fields, from surgeons to speech therapists, faciomaxial, radiographers, medical and radiation oncologists, all came one after another to poke and prod, ask questions and at the same time filling me with a feeling of being in the most capabable hands possible. At the conclusion of the examination period, the group of Specialists discuss each case and are able to discern, collectively, the priorities of each and every case. In my case it was suggested the initial response should be via Radiation. The ENT surgeon, earlier referred as the man to whom I owe my life, pointed out that there was a six week waiting period for Radiation treatment. He felt it imperative to operate urgently and remove the mass which had developed in the neck. At the same time he proposed to undertake a radical neck resection, aiming to eradicate all areas to which it had spread. The primary tumour was apparently inoperable, and it was decided that a a 7 week radiation course in conjunction with chemotherapy in the final week should "shrivel it up" Believe me, They Got It Right Carmen, that was in November 2002, although it seems like yesterday!! As my surgeon said to me, prior to the initial surgery, "it is a big mountain you are about to climb" Of course he got that part right too. It is a big mountain Carmen but gee it feels great when you reach the top, when your surgeon tells you "there is no cancer left in your body" I am only too pleased to answer questions I am sure you have, relating to our experiences. I wish I had the opportunity when I was first given the news, and moved into a new, dark and frightening world. Please keep in touch. Love and best wishes Ray and Karen P. Rastuspristl Thu, 09 Nov 2006 00:00:00 GMT Hi...I was reading you reply to the viet nam vet when you mentioned the realation of glucose and cancer. I have recently been diagnosed and begun treatment and am looking for some nutritional information. Do you know of any websites or any other information you can pass my way? Many thanks. Wil Wil_k Fri, 21 Jul 2006 00:00:00 GMT I was also recently diagnosed with stage 3 squamous cell carcinoma in one tonsil. The tonsil and cervical lymph chain were removed and i have begun radiation and irbutox(sp) therapy. However after talking to another ENT I am considering continuing with the radiation only, and I noticed your husband was only taking radiation as well. Can I ask what you based his course of treatment on? Was that the prescribed treatment couse set by your oncologist or did you opt not to have chemotherapy or the irbuox? Good luck! Wil Wil_k Fri, 21 Jul 2006 00:00:00 GMT I just saw your message. WOw! It gives me hope. I just finished my treatments and the neck dissection at UVa a couple months ago. I have stage 4 tonsil cancer, which had spread to a lymph node on the right side. This node had gotten huge before they chose to biopsy it here in Lynchburg, VA. Just put me on antibiotics for the longest time. So, you had it on one side, then ten years later...the other? Sounds like you're doing rea weel and that's outstanding! Your positive outlook needs to rub off on me. How did you know it had come back on the other side? What is your prognosis? Although I realize doctors can never really know. My wife and I had our first child during my treatments. She was 8 months pregnant when I was told I had cancer. It's been a rough ride, but I'm back at work and going strong. I just wonder about these follow-ups. Do they do ct scans, mri's or anything? Jon Vtyoda Tue, 13 Jun 2006 00:00:00 GMT My wife has scc and is 4 weeks into radiation. Week 2 was the worst for pain and difficulty eating. Her RadOncs mixed up a "magic mouthwash" consisting of viscous lidocaine, nystatin, and a couple of other things I don't recall. It's sort of like the stuff that you use on babies with thrush (maalox, benadryl, and nystatin). She gargles with that as needed (we've killed about a quart of it so far even though she says it tastes NASTY) She also gargles with a salt and soda solution before each meal. Also, 600 mg Ibuprophen twice a day, AND Percoset as needed. I think that the important part here is to stay ahead of the pain. If it doesn't hurt, they're more likely to eat....even if it tastes like old wet newspapers. Keep the faith! K Ripstopses Wed, 07 Jun 2006 00:00:00 GMT Would like to know more about this particular cancer which mine is coming from somewhere in the throat but they've done 27 byopsys and cannot find the primary. There is a large mass on the right neck. They have suggested Radiation of the entire throat area, sinus cavities 5 days a week for 6 to 7 weeks and Chemo I.V. drip on Monday and wear a pump the rest of the week. 6 to 7 weeks. In addition I have atrial fibulation, high blood pressure, collesterol problems and am on blood thinner. I believe in quality of life not just quantity so I want to live the time I have left as active as I can be. I just want to know if there is a chance the treatment will allow me to have that style of living. Also, don't know what the recovery rate is under these conditions. I have been on a no sugar and no carbohydrate diet for 4 days and some supplemental items that don't interfere with my heart, blood pressure or blood thinner medicine. Any help anyone can give will be most appreciated Bruin Sun, 28 May 2006 00:00:00 GMT Ed, I read you are a Viet-Nam vet well Charles is also we just got back from DC and there they did surgery on his tonsils, neck (tumor), lymphnodes and muscle. We are looking at 8 weeks of chemo and radiation. He will be doing radiation from an IMRT machine have you heard anything about this type of radiation? Hope all is well with you. Thea Theacharles Sun, 28 May 2006 00:00:00 GMT Hello folks, I've read accounts of several people's experiences with SCC and my best wishes go out to all. I was diagonsed with SCC on my tongue in August of 2004 and immediately made my way to M D Anderson in Houston. These guys are considered the world's best. When I first got there, it scared the Hell out of me because it is so big and they come out of the wood work like a bunch of bumble bees. After a full evaluation, it was decided to perform an operation that would include the removal of 30% of my tongue and a partial neck disection involving an incision from behind my left ear to below my chin. Sounds scary but the scar in not very noticible and the removal of part of my tongue has affected my speech very little. After the operation, they decided I needed six weeks of radiation. This required the removal of three of my teeth on the left side. This was done all at one time and frankly it was the most painful thing I endured. The radiation was another story unto itself. The six weeks (five days a week) of radiation was not so bad at first. I didn't have any side effects for the first 10 or so treatments. Then it hit the fan. I developed a strong metallic taste in my mouth and everything tasted horrible. This happened the day before Thanksgiving. I continued treatment until Dec. 28th 2004. As a result of the treatment I developed ulsers in my mouth and had a difficult time eating. I lost 50 pounds. All in all I wouldn't wish radiation therapy on my worst enemy. They tried to talk me in to inserting a feeding tube, but I told them no way. Even though I lost from 197 down to 147 pounds, 30 of the 50 pounds was weight I needed to lose any way. I did find out I couldn't maintain my weight by drinking Boost. Even that was hard to get down. In January of 2005 I decided to join a health club, which I did and started working with a personal trainer. He helped me with not only regaining my strength, but with my nutrition also. He got me started on a supplement called Cytogainer-made by Cytosport. Since I joined the health club and started taking supplements I've gotten myself back into best shape (170 lbs.) I've been in since high school (I'm 61 years old). I would highly recommend it. Ive had several check ups since my last radiation treatment and all is well (at least for now). My doctor says I'm her recovery poster boy. My radiologist says in his 13 years at MDA, he has not seen anyone recover as fast and as well as I have. For any body faced with similar treatment, I would highly recommend the use of liquid supplements such as Cytogainer during your treatment to maintain your weight and to regain your health after treatment, join a health club and work like your life depends on it. It does!! Juclay Mon, 22 May 2006 00:00:00 GMT Thank you for this message. Glad to hear some one is alive and well Rainlor Wed, 12 Apr 2006 00:00:00 GMT First let me thank everyone for their wishes and prayers. I have all the information regarding my Mother's treatment and wanted to run past everyone for feedback suggestions, directions and just because most of you have the knowledge I'm looking for. Mom has Stage IIB cancer of the left tonsil; T1-N2.7 (left tonsil - 1cm; lymph node 2.7 cm). The doctor says prognosis is 70% at 2 years and 50% at 5 years with the treatment. Mom will begin radiation on Wednesday Dec 14, every day, for 35 treatments at 7:30 am. NOT sure what type radiation equipment (tomography or not) will be used. Are there different types of radiation, as in different types of chemotherapy? Mom will be receiving Ethyol to minimize the dryness in the throat as a result of the radiation. Because of this treatment, she'll need to arrive 2 hours early everyday for hydration. Mom will also receive a pick line to minimize the needle poking for hydration and chemo treatments. Chemotherapy (cisplatin) will take place only 3 times throughout the 35 weeks of radiation treatment. She has received 3 different types of medication to combat the chemo treatments. Questions: From everyone experience - what am I missing? Blessedjuly9 Fri, 09 Dec 2005 00:00:00 GMT My husband had squamous cell cancer on the tonsil 6 years ago. He had surgery and radiation, lost his saliva but was good. We celebrated his fifth anniversary cancer free last February. March 30th, we found out it was spread in the lunges: 2 large tumors, not much hope... He went for one cycle of chemo: carboplatyn and taxol, he is now supposedly free of cancer! There is hope even if it is in the lunges. Good luck!!! Steveremi Sat, 03 Dec 2005 00:00:00 GMT My husband had the surgery 4 weeks ago and now he is facing radiation & chemo that will begin very soon. He had 54 nodes removed on his right side with 8 being cancerous. The Dr can't find cancer anywhere else so far. We see the oral surgeon tonight for a consult on removing his bottom teeth. They all have crowns and they say they will cause a problem. Has anyone else had teeth removed for radiation? I was told that maybe a plastic cap could go over the removed crown and still save the tooth but I don't know yet if our oral surgeon will agree. I don't want more serious problems with his mouth after the radiation. He is also scheduled to have a feeding tube put in next week. Thank you for all your messages about that. I feel so much better about the tube being a very good thing. We are kind of in the "calm before the storm" if there is such a thing and scared of what is still to come. Any advice? Mowtol Thu, 27 Oct 2005 00:00:00 GMT My husband Alan started in 2002 with a baseball sized Stage 4 Squamous cell tumor in the side of his neck,they {after giving him only 6 mo.} shrunk it down to the size of a raisin! Another popped in to his lung, that they cought with surgery. Then another tumor arose in the base of his neck again taggled within his arteries and inoperable, again it has shrunk considerably, all the DR's were shocked!!.He is only 44 and has gone through 33 Radiations,13 Chemo's Cisplatin, f5u,everything!! since he was younger they laid on the heavy artillery!! All the raidation has ravaged almost all of his teeth and he has had a stomach tube since 11/02. He does more than his fair share of Ativan. morphine, and the Duregsic Patches and he and I both know if it was not for the feeding tube he would not be here today. He has been clear for almost 10 months now. But the constant CT-MRI-PET-& scopes will always be. He is upbeat sips some soda & soup Play Golf. He was recently very disappointed when the Onolarangoligist (pardon my late night spelling---you know- the eyes ears nose throut guy?) Told him the radiation had destroyed his circulation in his esphougas and he would always be on the Feeding tube. Can anyone tell me of any instances of a long term tube ? What is the doctor really telling him?? I have done a lot of research and most people have them rarely over year... Any thoughs from anyone are deepley appreciated...Al & Renee in Denver Alan_P Wed, 26 Oct 2005 00:00:00 GMT I have read with great interest about your daughter I hope and pray for her complete recovery. My brother in law was just diagnose with recurrent oral cancer I dont know what kind of cell was his previous cancer but thi time was diagnose squamos cell as a retired nurse I was very concern becase of the seriousness of the illness, and just brouse to get some info. really appreciate your imput. iwill try and keep you informe of his treatment here in Ocala Fl. He has an app. next tues. I am praying for him and my sister. Gladys Reiki Thu, 13 Oct 2005 00:00:00 GMT It has been a while since I've written. My husband was diagnosed with right tonsillar cancer in June, had a feeding tube and port put in on July 1, had 36 IMRT radiation treatments (July 11-August 29) and 3 chemo treatments (cisplatin and 5FU) starting on July 11 and ended on September 16. He developed a severe case of mucositis on July 19 that still requires him to use a feeding tube. 10 cans of vanilla Glucerna a day, since he is diabetic. He developed severe burns to his neck during radiation. He uses Biotene moutwash and says he can taste it and the IMRT saved his salivary glands. Although he has only had visual exams by his hem/onc, ENT and radiation/onc docs - all 3 say the tumor appears to be gone. None are recommending surgery, although that may change when he has his cat scan in a few weeks. We have read that Sloan, MDAnderson and Hopkins rarely do surgery anymore in this instance. Today is almost 4 weeks since his last radiation treatment and for the first time he told me he feels good, he was even able to swallow a few sips of water for the first time in almost 10 weeks. Hang in there Steffani! Sheila Sheiladr Sat, 24 Sep 2005 00:00:00 GMT Hi Marlya50, Three years ago I found a tumar in my neck. It was SQumous cell cancer located on my left tonsil. I'm a Viet-Nam vet. so they sent me to Albany, N.Y. VA hospital and removed it. They also gave me seven weeks of radiation theropy. It has been three years now and I'm still not back to 100%. But I'm not 6 ft. under eather. So please tell your husband to hang in there. Things will get better but you will never be as good as you were. You must learn to live another way. Ed Big_ed Fri, 26 Aug 2005 00:00:00 GMT I am going to try to hit three messages with one reply. Let's see how it goes. First to 24. Steffani is right. Your mom needs your support to make it. As far as nutrition, discuss a feeding tube with her doctors. Ensure makes a great product. I lived exclusively on it for several months. As for long term results, I am at 1 1/4 years post radiation. I still have sensitive skin in my mouth and on my tongue, and I have little or no saliva. You need to get your mom's dentist involved and up to speed on radiation therapy as well because there is a lot a dentist can do to prevent tooth problems from radiation. Also, jaw tissue is less likely to recover post radiation if it gets a cut or if you need oral surgery. The possibility of infection goes up. Steffani - it is fine to be tired. Taking care of me was very draining on my wife as well. Look at it this way - the fact that you are tired and frustrated is PROOF that you are working hard to help and that you care! Life does get back to almost what it was (and becomes a new "normal") and the side effects, in perspective, are quite tolerable. Hang in there, both of you. It will get better soon, and the misery from treatment will fade into the past. At this point, I only consider cancer as something I beat, and have moved PAST. Backtohealth Wed, 24 Aug 2005 00:00:00 GMT To be perfectly honest with you it is a nightmare but with your support, your mom will get through it. My friend also has the same thing your mom has...we have two weeks left of the radiation treatment...started with eight weeks...he's lost 15 pounds...has a feeding tube. Highly recommend it...can hardly eat or swallow. It's a very very difficult treatment to go through...he also has chemo too. We don't know if he will have to have a neck dissection yet. Your feelings are normal and I got alot of info through this site. I hear life does get back to almost normal after treatments...of course I hear there are side effects...but think positive for your mom and yourself...it's only a span of 7 or eight weeks out of your and your moms life. She can do it... Steffani Wed, 24 Aug 2005 00:00:00 GMT My friend has two more weeks left of his radiation treatment...tumor on neck is shrinking...tumor on tonsil is almost gone. His neck is raw and tender. He's very contispated though. Any suggestions on that one? He's lost 15 pounds...very hard to swallow...still being tube fed...I'm tired...I feel guilty for saying that. Steffani Wed, 24 Aug 2005 00:00:00 GMT I seriously feel like I am living a nightmare. My mother was diagnosed with squamise cell carcinoma-a big smoker! She had the surgery -neck disection on her neck then the doctor nonchalantly said.....Oh she will have to have radiation also. Well, I have lots of friends mothers who have had breeast cancer so I thought ....oh not a big deal(of course it is a big deal...I don't mean to sound flippant) but my friend said oh she will have the runs and feel a little nausea....Obviously, I was very naive.....So we went to the Oncologist-I just love oncologist!!!! And heard the medevil terror of radiation. I thought I was in a nightmare....so being the faint at heart...my mother decided to take her chances and not do it....big mistake...Yes it did come back so now she has to have radiation......no options....I just found this board and it made me feel better for some reason...I need to feel some feeling of empowerment because I feel like I am going to have a nervous breakdown.....I am my mothers only support so I try to stay strong for her but I am a mess inside....She hasn't started it yet but very soon. Ultimately, I guess I want to know how her life will be after radiation....and also, what sorts of nutrition should she take while she is on radiation...I want to keep her weight on....please help me. Thanks Lily Lily1111 Sat, 20 Aug 2005 00:00:00 GMT Steffani: I am really happy you are going to talk to your friend's doctor about a dissection. I think the dialog is important. As far as my dissection, I had 38 lymph nodes removed and that was it. My voice, carotid artery, jugular vein, and muscles (I wish I could remember how to spell the muscle in the area of the dissection!). The worst part of the surgery was having the drains removed. That was very uncomfortable. As far as long term (1 year, 2 months) effects: I needed physical therapy to get my right arm strength and range of motion back because my arm tightened up about 6 months after the surgery. I have some numbness in my right ear, I get some cramps in my neck, but that is getting rare, and I have a small and very tolerable amount of stiffness in my neck. Last winter I was cold all of the time due to weight loss. My surgical scar is barely noticible (I double checked that with my wife because I really don't notice it). My ENT also trained in microsurgery, so your results may vary! Really, there are only two long term effects that actually bother me. The real one is the lack of saliva. I need to carry water with me where ever I go, and I keep a spray that as far as I know, only Walgreens carries called Stoppers 4. The other effect is just annoying, and is getting much better. I LOVE spicy food and a glass of red wine, and my tongue and inside of my mouth cannot tolerate alcohol or anything much hotter than banana peppers. Backtohealth Tue, 16 Aug 2005 00:00:00 GMT You know what, I think all three is probably the best for everybody in this situation...if he shows it in his nodes I think a neck dissection is without question...I'm going to present it to his doc this week and of course everybody's body is different too. What one will survive another could succumb to very quickly...another question...with that surgery, what did you lose as far as the parts in that area of your neck? Did you lose your voice voice? What areas are gone? Did you have to have plastic surgery as a result of it? Steffani Tue, 16 Aug 2005 00:00:00 GMT Wow - that is a loaded question. I really need to pass on answering that, because I am not in your friend's situation. You need to do the research yourself since you, he, and his doctors are closest to the situation. For MY situation though, my research indicated that my doctor was right - the survival rate was better with all three - chemo, radiation, and surgery. I am really sorry to back away from this one, but I feel like I am not qualified to address it! Backtohealth Tue, 16 Aug 2005 00:00:00 GMT so, in your opinion, going through all you have with this, if you were even stage 3, which my friend is, would you want a biopsy of the lymph nodes even if they tell you that the radiation and chemo get it all? i guess its really only the true way of knowing if it worked like you said....what are the survival rates with a neck dissection verus just chemo and radiation? probalby a loaded question but maybe you know the answer to that one...thanks again for all your info on this..its been a GREAT help!!!!!!!!!!! Steffani Tue, 16 Aug 2005 00:00:00 GMT Thanks for the compliment. I feel that helping others is my way of giving back for all of the wonderful care I was given. My ENT said that it APPEARED that the radiation and chemo were a complete success. He said that the surgery was really my decision, but that he recommended it. The way that he presented the case for surgery was thus: If it appears that chemo and radiation got it all, they PROBABLY did. However, there may be trace cancer left over that the chemo and radiation did not kill. Removal of the lymph nodes, and a biopsy following are the only way to be sure that the cancer is gone. He said that only a few people need the surgery because radiation and chemo did not get everything, but without doing the surgery, it is impossible to tell who are the people who needed the dissection and who did not. I am personally glad that I had the surgery because it gave me some peace of mind regarding my condition. Keep in mind that I was stage IVA and you need to adapt to your friend's different situation. Find a medical librarian and have her or him direct you to some peer reviewed literature regarding neck dissection after radiation and chemo and effects on long-term survival. Backtohealth Tue, 16 Aug 2005 00:00:00 GMT Steffani, I am sorry your friend is going through this. My friend Rod was diagnosed last March stage 4b. He had a large tumor on his tonsil and several lymph nodes involved. He had 35 radiation treatments and 3 rounds of chemo.He did not need to have surgery because he had a complete response to treatment. He had several "checks" by his oncologist & radiologists through out tx.His tx ended in July and on November 1st (radiation keeps working for a while after completion)he had a pet scan which revealved no cancer. He is doing very well now one year later. It took a few months to be able to eat & taste but it did come back. The dry mouth is the worst but it got a little better. He is struggling to gain weight & continues to drink protein drinks in between meals.Your friend can beat this and he may not need surgery either.If I can be of any help just please ask.Tell him to be patient after treatment, recovery can be a long road...prayer also helps ALOT! Good luck & God bless!~Marley Marley Sat, 13 Aug 2005 00:00:00 GMT So you had a neck dissection after the chemo and radiation? Was it because your chemo and radiation didn't work by itself for the cancer? They told my friend that they wont know if he has to have surgery until they see if the chemo and radiation work on the cancer...I wonder what test they do to see if its in remission...is it the pet scan, MRI? I want to ask a lot of these questions to the doc, but with my friend sitting there, I'm careful as to what to ask in front of him. He's down enough as it is...don't want him thinking to far ahead...I think I'm learning more from you than the doc sometimes... Steffani Fri, 12 Aug 2005 00:00:00 GMT I do not recall exactly, but it was somewhere in the second week. We raised the dosage in the fourth week, just before I started the second round of chemo. The dosage went back down about two weeks after I finished treatment, then back up when I had the neck dissection. It went down again about two months after the neck dissection. I was on just morphine and oxycodone for about four months after the dissection while I healed from the dissection and radiation and chemo. Then, one day, just like my doctor said, I felt that I didn't need the pain killers any more, and stopped. No addiction or withdrawal problems because my doctor and I kept the doses as low as possible. Again, I could not have gotten through the treatment without proper pain management. Backtohealth Fri, 12 Aug 2005 00:00:00 GMT If my friend had been heavier, he wouldn't have needed the feeding tube, he can't afford to lose any more weight...I'm going to ask the doc on Wednesday...that's the doc meeting day for friends and family about those drugs. At what point in the process did you start to take them? I have them written down in my wallet...thank you very very much!!!!!!!!!!! Steffani Fri, 12 Aug 2005 00:00:00 GMT I did not have a tube put in. I went from 250 to 170 pounds, but I was very active from martial arts so my doctor and I decided to try without it. As the treatment progressed, I could not get any solid foods down, and existed on water and Ensure. At one point, I had to go to the emergency room for fluids since I got dehydrated. That was a bad experience, and is why I always stress drinking lots of water. My lump started getting smaller after about 4 weeks of radiation, and was gone by the end of the 5th week. Do talk to the doctor TODAY about strong opiates. I could not have imagined going through the treatment without Duragesic patches, oxycodone liquid, and morphine liquid. Weaker drugs would not have been enough! Just be honest about your feelings and be supportive. Your friend will probably sense it if you are trying to fake being positive, and it may make him worry. Just be there for him. Your real feelings of caring are what he really needs. Backtohealth Fri, 12 Aug 2005 00:00:00 GMT Did you have the peg tube? My friend just got the peg tube put in...he's in horrible pain from just having that inserted...he can barely eat and his weight was already low so the doc said he had to have the tube put in...he's down to 149 pounds from 156 and still has 4 more weeks to go...I'm going to ask his doc for the pain medication you were taking...I hope it helps...this whole thing is a nightmare...the tumor is still on the side of his neck...the doc said after week 4 it will flatten...thank you for your help...I just hope this whole process works and he goes into remission...sometimes its very hard to stay positive but I'm trying for his sake... Steffani Thu, 11 Aug 2005 00:00:00 GMT Steffani: Vanilla Ensure was the only thing I could do for nutrition when it was really bad. I tried to force down as many as I could in a day, but at the worst point I could only get 2-4 down a day. I lost a LOT of weight. It gets worse as the radiation continues. The swallowing and pain does get better slowly about 2-3 weeks after the radiation and chemo is over. Make sure your friend is getting plenty of water, and that his dentist is involved for flouride treatments. Talk to his doctor about pain management. At the worst point, I was on Duragesic patches (they come in several sizes based on pain level) to bring my pain down to a lower level, and then supplemented with Roxicet (Oxycodone and Acetaminophen) during the day, and Morphine at night. The Roxicet and Morphine are both liquids, so they are both better than pills which I could not swallow. The pain medication made a lot of difference! Backtohealth Thu, 11 Aug 2005 00:00:00 GMT Hello Mark, My husband was just diagnosed with Squamous Cell Carcinoma in a small tumour at the back of tongue that has spread to one lymphn node in the neck. I see that you are a 10-year survivor of oral cancer and am wondering what kind of treatment you had - I presume an operation and after, did they radiate the area... did you also take chemo therapy? Would appreciate hearing from you. Harvsfru Tue, 09 Aug 2005 00:00:00 GMT My friend is going through the radiation now for tonsil cancer...the radiation is horrible...hes having chemo every three weeks...its stage 3 and gone to the neck...I hope he gets through this...hes having a horrible time eating now...going into fourth week ...any suggestions on anything involving this? Steffani Sat, 06 Aug 2005 00:00:00 GMT January he started having hip and knee pain and after a long battle we found that the cancer had mataticised to his bones and liver. Looking back and knowing how hard the radiation was, I still would have insisted they follw with chemo to make sure the cancer had not gotten into his bloddstream as it did. The ENT was sure that even though it was in two of his lymph nodes, he took out the ones around it and was sure he got it all. We have the utmost confidence in our doctors but this cancer is slimy and snuck out without anyone knowing. There are several studies showing that a follow-up chemo increases the survival rate significantly. Best wishes and if you need some advise on caring for your husbands skin or nutrition, please let me know. Ellen Peters_Wife_1 Mon, 01 Aug 2005 00:00:00 GMT Hi, just letting you know I had lung squamous cell carcinoma stage 4 in 8-01. I had 33 days of radiation then in 11-03 had throat cancer in tonsils stage 1. Same kind as lungs, had 35 days of radiation so you see we did a flip flop. I just went for ct scans this week last I had was 7 mos. Ago. I do still have some shadows in the middle but has not changed any to this point. Cannot op. I am on oxygen w/40% lungs (emphysema) so in your case it looks good with several options. The best to you and there is hope I am still here and plan to see grand children get married ages 10 & 12. p.s. MD Anderson is very good I did some training there. Please let me know how your doing. Good luck, Vonnie Vonnie Tue, 05 Jul 2005 00:00:00 GMT I have just been diagnosed with squamous cell cancer of the tongue that has met. to the lungs. I too am attending MD Anderson. I just underwent a biopsy there and I start treatment next week. While you where there did you meet any patients with squamous cell cancer of the tongue that had spread to the lungs? If so, what did you learn about this type of cancer. I was first diagnosed in Boston and the doctors there told me that because the cancer was in the lungs, there was no hope. Since I am from Houston, I believe in the doctors at MD Anderson, but I just am afraid to ask about the lungs and longevity. I was hopeful that you could refer me to someone with this particular type of cancer ' Kldebus Sun, 15 May 2005 00:00:00 GMT Hi! I am new to this web site. I am a two time survivor of squamous cell carcinoma that started on each of my tonsils. I am a nonsmoker, non-drinker exposed to agent orange in Viet Nam. I have been cancer free the second time for 10 years. It was almost exactly 10 years between the first and second occurences. I am in good health and am an avid runner. I have learned to adapt to almost no saliva as a result of radiation. Life does go on and is good. My daughter lives in Austin. She had mentioned the reputation of the Anderson clinic. I had all of my treatment at the University of Iowa Hospitals and Clinics. Love2run Tue, 29 Mar 2005 00:00:00 GMT I put a message on the board after reading your message Judy yet I didn't remember where I saw it to re-find it...so I apologize if this is redundant. We are in New York. My husband was diagnosed a week ago with Stage 4A lateral tongue base SCC which is also in a lymph node (a few involved I think)...no spread to lung or bone.... Just had a sore throat too long and the ENT said "did you know you have a lymph node the size of a golf ball?" We didn't notice it, feel it...anyway, here we are confounded by proposals re treatment...4 experts, 4 opinions re approach...yet none have suggested chemo as primary...nor to avoid radiation. Radiation has been involved in each opinion 1) radiation and chemo as adjuvent 2) surgery, radiation and chemo as adjuvent 3) radiation, brachytraumatherapy implants, chemo as adjuvent and, 4) transoral lazer microresection, radiation and chemo. I wondered where the location of the SCC was on the tongue and what Stage re what you shared? They told us we need to act fast so I am not sure that we can get an appointment with the person you suggest yet I'll try... Any thoughts you have would be greatly appreciated! Regards, Carmen (for Scott) Confused Wed, 23 Feb 2005 00:00:00 GMT I just wanted to know where you live in Texas. I have lived in Texas all of my life and I know the place you wrote about. If you reply to this message I will tell you about what is going on with my husband and his cancer. We are doing radiation and no chemo. He had tonsil cancer. Everything has been removed and now we are radiating. Hope to hear from you soon. D. K. Marlya53 Fri, 15 Oct 2004 00:00:00 GMT Darling, if you are still eating candy and ice cream, your cancer will have to return. Please educate yourself on glucose and cancer and stay happy with your beautiful wife and life a little longer. :) S.M. Shannibell Mon, 16 Aug 2004 00:00:00 GMT Ronald - I've read your story and can't believe you were told that it was incurable! So wrong. There is usually a 80- 85% cure (remission rate of 5 years) with this type cancer. My 35 y/o daughter was diagnosed in May 2004 after being misdiagnosed for 6 months. She diagnosed herself in May & had her ENT that she had been seeing tell her yep, you're right ! It's squamous cell carcinoma! We immediately headed to MD Anderson Cancer Center in Houston, TX and have the most awesome team of professionals helping her. She has undergone chemo first for 3 rounds (3 weeks each) and now will have surgery on August 19. the chemo first is part of a trial to kill all active cancer cells in the hopes that when she his opened the cancer will not spread and after surgery, the doctors are hoping to avoid radiation. We believe that through the many prayers that are being said for Lesley, that radiation will not happen. We met a lady in the barium swallow section at Anderson 2 weeks ago from Oahu (spelling) HI who had squamos cell carcinoma on her tongue. She had the surgery 30 days ago and her first whole food was going to be in the barium! She had a resection of part of her tongue and was speaking quite well. Lesley, my daughter, will have a plastic surgeon take skin from her forearm and graft onto her tongue to help in regaining functional speech. She will have the lymph nodes on the left side of neck removed - so I refer to it as being "fileted like a fish"! She's very positive and upbeat and has suffered no ill effects from chemo except the loss of hair on her head only. She is convinced she will not need radiation as she has a cruise to Mexico in October that is bound & determined to be on! Her doc has given his blessing as long as no radiation is needed. Don't ever give up and if you ever want a second opinion, please consider coming to MD Anderson Hospital - it's part of the University of Texas Medical Center and ask for Dr. Eduard Diaz. He already saved a friend of mine's life 4 years ago who had laryngeal cancer and was told he would have to have a voice box but would probably be dead in 4 mnonths! George is alive and well and did NOT have to have a voice box! They place Dr. Diaz right up there next to God! Just curious, did you have a history of smoking and alcohol? The web sites I've gone to all seem to say it is a combo of both of those things that tend to cause this cancer - although I talked with a radiologist oncologist in Mobile today, where we are from, that said it's just bad luck that causes it! Good luck to you and if you care to email me, feel free to do so. You can reach me at Jalexboo@aol.com Judy Alexander Jalexboo Tue, 03 Aug 2004 00:00:00 GMT Hi everyone, I would like to thank all the people that had written me during this past year, a year that was at times unbelievable with what I was going through, how could I have cancer, I was always healthy, going to the gym three times a week, a secure job and a beautiful wife that's always been by my side for the last twenty seven years, plus living in paradise on the island of Maui. What more would you want. Well I had something I wouldn't wish on anyone, my doctor let me know over a cell phone conversation that I had carcinoma, I said what? and he yelled back to me with a chuckle that I had Squamous Cell Carcinoma, CANCER! and not to miss my doctor's appointment that he set up with a head and throat doctor, so I said ok and left it at that until I did heard it from my new doctor and friend! It's been a year since my surgery on my throat and nine months since my last radiation treatment. I'm back to my normal weight 175lbs from 158lbs at my lightest, my throat is still burnt from the radiation and it still hurts to swallow once in a while and my taste is about 60% back, candy and ice cream and some foods will loose their taste after a couple of bites but if that's all I have to live with then let it be. I have been free of cancer so far, have been told this is an incurable cancer but I don't let it influence my everyday life, I know one day it may come back, but I have set that thought on the back burner, I've have a life to enjoy and that's just what I'm doing through prayers and having faith in myself and God. Ronald_B_3 Fri, 12 Mar 2004 00:00:00 GMT