CancerCompass message board discussion started by Amynmiami on 12/15/2006 http://www.cancercompass.com/message-board/message/all,8295,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi Everyone...I'm new to this board.  This is my first posting.  My husband found out on Nov.6 that he has early stage 3 tonsil cancer in the right tonsil (T3N1M0).  He's a non-smoker, non-drinker, and 47 years old..and in perfect health other than the cancer....so we're still in shock at this point.  After talking to many people and doctors we chose Univ. of Miami Sylvester because we've been told they deal with many head and neck cancers.  It's taken us a couple weeks to get the appointment but yesterday we met with the radiation oncologist from Sylvester for the first time.  Even with the cancer appearing on only the right tonsil side, they suggest using radiation on both the right and left just to make sure the cancer had not spread to the left side.  Is this something that is normally done?  They also want my husband to take low, once a week doses of chemo (cisplatin along with 2 other drugs) and they suggest no PEG tube because of the chances of infection and so that he continues to swallow.  My husband fears the chemo because he's read about chemo brain (and chemo fog) and he is the only one that financially supports our family (I'm a stay-at-home mom with a 6yr. old girl and 3 yr.old boy) so right now he's trying to decide what is best for him and the family.  They don't plan on any surgery unless they don't catch all the cancer with the radiation and chemo.  We could really use some good advice on this.  We know the clock is ticking and we need to make decisions quickly.  Thanks for your help. ...Amy Amynmiami Fri, 15 Dec 2006 00:00:00 GMT Amy,Your husbands and I have the same diagnosis, with mine on the left side.  I too made it without a feeding tube.  We are rare, and it is a bit more difficult, however the recovery is quicker.  I also was a non-smoker and only a social drinker, and in very good shape.  That all works to our benefit in the treatment.  My radiation was 3D and on one side only.  I was told that is determined by the location on the tonsil.  If it is located closer to the other side it can jump.  My radiation was 37 days and I had 3 rounds of cisplatin.  I was hospitalized overnight to stay properly hydrated.  I had a modified neck disection post therapy.  You may want to look further into that.  It was a tough regimen but obviously you do come out the other side.  My friends and family were by my side at all times and that made it bearable.  If you would like to talk further, you can contact me thru www.spohnc.org.  I am a voulnteer and my wife would also be happy to discuss it from a caretakers perspective.  Your husband will have a very good prognosis and come out of it a beaten-up but changed person.  It will be an amazing journey that you both will survive.Best Regards,Rob Jaffe Robroaster Fri, 15 Dec 2006 00:00:00 GMT Hi There, I read your message and wanted to reply as my dad has just gone through the entire proceedure and we have learned so much.Background:  My dad never smoked nor drank.  Hewas diagnosed with left side tonsil and into 1 lumph node.  Course of treatment: 6 weeks of radiation to both sides as well as the 1x/week chemo treatment.  This was followed by partial neck disection which removed all the lymph nodes from the left side as well as the salivary gland.Opinions:  We recieved one opinion form Yale New HAven Hospital and one for Beth Isreal hopsital in NYC.  Both are reknowned for their head and neck cancer centers.  Both recommeded the same treamtent which my dad just completed.  Feeding Tube:  Althoguh I have read of people making it without the feeding tube I beleive thsi would be VERY DIFFICULT.  The radiation your husband will recieve is very high powered. Swollowing will become VERY difficult.  Perhaps if your husband was goign to rest all day for the next 6 weeks he may be able to survive without the tube.  My dad wanted to get upa nd go to work and try not to loss as too much weight.  In week 3 he got the tube and I beleive it gave him a much faster recovery becasue he hardly lost any weight he had strength to work from.  He did keep eating as much as he could but at night while sleeping we hooked him up to a feeding pump and feed him through the night and gave him water that way too.  I can tell you what to get for that if you need it.  Waiting until he is sick and into 4 weeks of treatment and weak to get a tube is a mistake.Having a tube does not mean you stop eating but it provides a way to get nutrition and fluids into you when your throat becomes too sore to swollow nutritious food.  Surgery:  Squamous cell carcinaoma which is what it is called is tricky.  Squamous cells are incidious. It is my opinion from our research that having a partial neck discetion(which is the removal of lymph nodes on one side of the neck) prevents the cells from spreading to the lymph node system.  Both experts recommended it and we had it done.  Most of the people we spoke with through the support groups also had it done.IF you need any further help please fell free to email me directly.  Best wishes  Andree        Looking4hope Fri, 15 Dec 2006 00:00:00 GMT Hi,I, too, have just been diagnosed with tonsil cancer, and have pretty much gone through the same procedures you  have. But I would take issue with one thing: To radiate both sides to ensure they get all the cancer doesn't seem adviseable. At the very outset, I had a CT scan which showed the exact location of the cancerous cells. They were all on the right. A bit later, when my treatment was being planned, I had a PET scan, which is designed to find out if the cancer has metastesized to other places. It had not. To radiate where it is unnecessary, it seems to this layman, puts healthy cells at risk,  not the least of which is the salivary gland on that side. We'll probably lose the salivary gland on the right side, but try to save the other one. I hope this is helpful. Best of luck to you all. I  hope we can chat again. Ripvanwinkle Sat, 23 Dec 2006 00:00:00 GMT I agree with Rip. The first oncologist that I went to see told me he was going to radiate both sides of my neck, just to be safe. I didn't go back. this sounds like shooting in the dark treatment. I had the PET scan and CT scan and they know exactly where the cancer is. I don't want anymore heathy tissue being damaged than need be, Bearsfan Sat, 23 Dec 2006 00:00:00 GMT Dear Amy, I was diagnosed with Squamous Cell Carcinoma of the right tonsil on July 31, 2006.  Like your husband, I don't smoke or drink and exercise regularly, so it was a shock to me as well.  Fortunately, I have wonderful doctors who immediately jumped on the treatment.  My cancer was a stage 3 and primarily contained in the right tonsil.  I went through seven weeks of chemotherapy and radiation therapy.  I had chemotherapy every Monday and Tuesday.  Monday I was given Taxol and Tuesday I was given Cisplatin.  I had twenty minutes of radiation therapy Monday through Friday. I strongly recommend that your husband have a PEG tube put in.  My doctors insisted that I get one and it has been my life saver through all of this.  The radiation burned my mouth and throat so badly that there was no way I could eat or drink anything!  I actually had 3rd degree burns on my neck in which my skin started peeling off and bleeding.  They had to stop treatments for 10 days until my skin healed. If I hadn't had the PEG tube I would have wasted away to nothing.  I only lost 16 lbs during the treatments.  I met several people who didn't have a PEG tube and they lost 30 or more lbs.  This is the most difficult thing I have ever been through in my life!  The best way to describe it is hell on earth.  I hate to be so blunt, but sugar coating it won't do you or your husband any good. I finished my last chemo and radiation treatments on Oct. 16, 2006.  I was on some pretty heavy duty painkillers throughout the treatments and afterwards in which I had to gradually ween myself off of once I could tolerate the pain without them.  From Oct. 16th to Nov. 20th I continued to be on the painkillers.  I had canker sores all over my mouth, tongue, and throat from the radiation.  Here it is, Dec. 28th, and I still have sores in my mouth and throat. Not as many, but there are enough there that it makes eating by mouth very painful. I started eating a very small amount of food by mouth around Thanksgiving and have increased my eating to two or three small meals a day of soft foods. The treatments caused me to lose my taste buds and salivary glands.  According to my doctors, they will gradually come back.  My taste buds have come back very little.  I can taste a hint of certain things.  My salivary glands are still not working.  That is the most horrible thing to me.  You don't realize how important your salivary glands are until you don't have any functioning.  To eat a sandwich, it takes 3 full bottles of water to get it down. Sleeping at night is very difficult.  I wake up every 30 minutes needing water.  I found out after the fact that there is a medication they can give you to help save your salivary glands.  The draw back to it is it makes you extremely nauseous.  The chemo did the same thing to me, so I'm not sure why it wasn't offered to me.  Anyway, I pray every day that my salivary glands and taste buds will come back.  I will tell you though, I went in on Nov. 14th for a CT Scan and Nov. 28th for an endoscopy and my doctor saw no signs of the cancer!! Thank God!!!  So, you and your husband are in for a long battle, but it CAN BE WON!!!  If your husband has a strong faith and a positive attitude, he can make it through this.  I am still recuperating, but am hoping to be able to go back to work at the end of January if all goes well.  I still have the PEG tube in me even though I'm eating small amounts of food.  At first I was upset that my doctor wouldn't take it out, but realize now that I still need it to get the additional nutrition I need to heal.  I hate having it in me and it's uncomfortable at times but a necessity to recovery, I think.  My doctor will not sign off for it to be removed until I have gained 10lbs., can eat, drink, and take pills my mouth, and have maintained my weight. The chemo and radiation will make your husband very nauseous and very tired.  I couldn't even get out of bed I was so weak.  It took everything I had somedays to go to the treatments. I learned more from the nurses and other patients than I did from some of my doctors as far as things to help with the side effects of the treatments.  One of the worse side effects was the thick mucous that was in my mouth during the treatments. I requested a portable aspirator to assist with sucking all of that out of my mouth.  I had to sleep sitting straight up to prevent myself from gagging on the mucous.  I would wake up every 20 or 30 minutes to suck the mucous out with the aspirator. I found that if I used liquid benedryl it helped dry it up some so I could sleep.  My dentist gave me some of those round tubular shaped gauze that he uses on patients to put in the back corners of my mouth to help absorbed some of the mucous.  They helped a lot when I was awake during the day.  Your  husband will need to have his teeth checked by his dentist before he starts treatments.  If there are any teeth that are in bad shape, they will have to pull them before treatments can start.  Fortunately,  my teeth were in great shape and I didn't have to do that. During treatments, he will need to rinse his mouth out throughout the day with a bakings soda and salt mixture. You can get the measurements online on all the cancer sites.  This mixture helped with the healing of the mouth sores and keeping the teeth clean.  I am sure I have forgotten a lot to tell you, but feel free to email me if you have any questions.  Keep the faith and stay strong!!God Bless,Lou Sailin Lou Thu, 28 Dec 2006 00:00:00 GMT Hi Everybody...thanks for writing...Well, here's the update.  We have switched hospitals one last time.  We switched to a place that has a good cancer team, close to home, and they have a IMRT/ IGRT (Trilogy)  machine, which means they can pinpoint the cancer with a daily scan of the tumor.  They handle over 100 head and neck cancers per year and with the new machine there's a good chance we can save his saliva!  He's had all his dental work.  No teeth pulled and they say his teeth look great. He has his trays and mouth wash.  They have scheduled to start the chemo/radiation on Jan.4 and last treatment will be about Feb.15.  This hospital says "yes" to the PEG tube (and that's fine with us), and he will be doing the three treatments of chemo instead of once a week.  I'm not sure which is more effective.  He's doing everything he can to prep for what is ahead.  We're trying to put some weight on him but he went from 178 to 168 when we got the bad news...now he's up to 171  (and that's about 10-15lb.s overweight for him).  He's been drinking Boost plus, but he says it fills him up to the point he no longer wants to eat.  He's been taking vitamins, drinking green tea, and doing push ups in the morning.  He even bought special lotion for his neck.  We are both still very worried about the treatment.  This hospital also agrees with giving radiation to both sides of the neck.  I had thought the chemo was there to kill off any other cancer cells they coundn't see.  It's something we'll need to talk to them about. My husband's main concern right now isn't even himself, it's our kids.  He's worried about the effect this is going to have on them.  They're both very little and he doesn't think they'll understand the changes daddy will be going through.  It's very difficult as a little kid to watch a parent deal with cancer.  It's something I went through as a child so I know how hard it can be.  The doctors all say his chances for being cured are very good.  I don't know how long the recovery will take, everyone seems to have a different story.  Please keep the good advice coming.Thanks...Amy Amynmiami Thu, 28 Dec 2006 00:00:00 GMT Hi,I too was diagnosed with tonsil cancer(left side) that had metasticized to one lymph node.  I am 45, nonsmoker, light drinker, and a regular exerciser.  I had absolutely no symptoms and would not have known anything was amiss if a cyst had not grown around the lymphnode on my neck.  When biopsied, cancer was discovered.  I finished 40 radiations (to both sides) and 3 rounds of chemo on september 1, 2006.  I had a PEG tube placed before I started my tratment and it turned out to be a life saver.  I had it removed just last week and feel great!  My advice to you is to continue swallowing water throughout your tratment as it will keep your swallowing mechanism in working order.  When I went in to have a barrium swallow test they were amazed how well I did.  In fact, they said if they hadn't been told I had tonsil cancer they would never have known for themselves.  It has been almost 4 months since I finished treatment and I feel like my old self again.  Accept help from others, rest as much as you can, and don't beat yourself up when you have a bad day.  Give in to it and know tommorrow will be better. It truly is a rollercoaster ride, so buckle up!  Queenie45 Queenie45 Fri, 29 Dec 2006 00:00:00 GMT I know just what you mean when you say you would never know there was a tumor there.  My husband had a nose infection and he went to his doctor to see what he could do about it.  The doc looked him over and said my husband was in great shape, but when the doc looked down my husband's throat with the little flashlight, the doc said "uh oh, the tonsil is swollen on the right side only, you need to go to see an ENT and get this looked at, this could be bad."....and there was no pain, no trouble swallowing, no ear ache...you couldn't tell looking at his neck.  And when the ENT checked him out, the ENT felt my husband's neck and said he couldn't feel anything, and that the tonsil was swollen, but didn't look bad.  They gave him a biopsy anyway, and it's a good thing they did.  When my husband sits in his chair to watch t.v. I sit on the sofa to the right of him, with full view of the right side of his neck.  I've been looking at his neck for months and you still wouldn't notice it. Amynmiami Fri, 29 Dec 2006 00:00:00 GMT Hi Amynmiami.  I have just been through what your husband is facing.  My cancer was in the left tonsil, I'm ten years older and I live in Australia, otherwise it appears our situations are very similar. I am 3 weeks out of treatment (which was 1 week of inpatient chemo and 35 radiation treatments to both sides).  In short, the treatment was nowhere near as traumatic as I was warned it might be.  Yes, I did get a very sore throat from week 4 of treatment, but that was managed reasonably well with, firstly, panadeine and, during the worst 3 weeks, morphine.  I got a sore neck - much the same as severe sunburn.  Again, it was well managed with creams.  I had nausea for the first week of treatment, but a short dose of medication got rid of that.  One thing that was a problem and that medication didn't manage very well was having a weird taste in my mouth for most of the time.  I found dry mouth gels and dry mouth toothpastes helped a bit, but it was the foul taste that has been the worst part of the treatment.One thing I did not anticipate was the extereme tiredness that set in from about week 3 of radiation.  On the positive side, it did mean I slept well throughout the treatment, which was a major blessing.  But, being normally fit and active, I found it frustrating to have no energy and not be able to do stuff.   I am very thankful that I had a PEG installed before the treatment.  There were several weeks when I didn't feel at all like eating - much more to do with the foul taste and mouth dryness than any throat pain.  Having the PEG meant that I could feed myself with having to be "force fed"!!  I maintained weight pretty well throughout, and that helps with recovery.Now I am 3 weeks out of treatment, I am amazed at how things have improved.  I can feel things getting better every day.  I'm back at work and functioning fairly normally.  Still lacking energy, but I can feel the zip returning bit by bit.  The only problem I have is that the medication doesn't seem to help much with thrush in the throat and a mouth ulcer.  So the throat area is still fairly uncomfortable.  I guess that'll improve as my immune system recovers from the hammering of the 35 radiation hits!!  In the meantime, panadol soluble 4 times a day is a help.The staff at the clinic have been absolutely fabulous, and that has helped greatly.  But the biggest help has been my wife.  It's been a tough journey for her as well.  She has gone through the various medical traumas with me, plus she has done all the housework since about week 4 of the treatment, kept the farm ticking over and done her normal day job as well.  Your experience during your husband's treatment might be somewhat similar.  I guess what I'm saying is that if your husband goes through the treatment with the same amount of good fortune as I have, then it'll actually be tougher on you!!Good luck for the journey you are both going through.  Barrysc Wed, 03 Jan 2007 00:00:00 GMT The internet is such a great place to share personal experiences.  We can read and write to each other about reat experiences, not just statistics.  One thing that seems to be clear is that even though scenarios are similar, there is a very wide range of what may actually happen.  I am surprised to read how many of you are young, and non-smokers...  I certainly wouldn't say it was a guarantee my dad would get cancer, but I wasn't surprised when he was diagnosed with Stage IV right side cancer into the lymph nodes.  My dad is 73, he quit smoking 10 years ago, but has been drinking every day his entire life.  My dad is a carpenter and has been fit his entire life.  He finished treatment 3 weeks ago, and even as a senior citizen has done remarkably well.From family doctor, to ENT, to referal to a major cancer centre in Toronto, and the Ultrasound, CT Scan, and biopsy, then MRI, the whole diagnosis to treatment took 5 weeks back in October.  After that, treatment began immediately.  He had 7 weeks (35 treatments) of radiation, and 3 overnight stays in the hospital for Cisplatin/chemotherapy.  The main reason for the overnight and IV fluids for this chemo is that Cisplatin can be very toxic to the kidneys and patients must be properly hydrated and flushed to help prevent problems. My dad has had my mom to take care of him, which truly has been a blessing.  He stopped working at construction, but for the first 3 weeks of therapy continued to work quite aggressively outside raking and tidying up his 3 Acre all on his own.  My dad's been active his whole life, and the idea of being "sick" or idle was looming.  I sympathize with those who are young with families to care for, as we recognize the fortunate situation of being able to take the time for treatment and healing.  During the last 4 weeks of treatment he certainly needed to rest more and spent a lot of time sleeping on the couch.My dad has been Really lucky with side effects.  We're not sure why the radiation didn't affect his skin much but at the very worst he had slight reddening with peeling.  He throat got slightly sore/rough feeling and he did have the feeding tube put in during the third week, but he has continued to eat since the very beginning, right up until the end, without really trying.  He has lost 15lb, and has conscientiously used the feeding tube almost every day to maintain weight.  I think it is a good sign when your body has hunger, a sign that it wishes to heal and be well.  I've noticed a Kleenex box next to him for the last couple weeks, and I'm sure that's for the mucous building up inside his mouth / throat while it heals. He had a lemon sized swelling under his right ear/jaw bone, and noticed this swelling 8 months before treatment began.  He was too chicken to seek treatment and obviously the cancer was very advanced... not a good idea to hope a swelling in the throat will magically go away.  It can't hurt to go get it checked out.  At the end of the treatment the swelling was gone completely.  His doctors can still feel something, but they say it is scar tissue and he most likely won't need surgery.  He's happy to hear this of course.  They will be leaving the feeding tube in for another week, and if they decide to do surgery, will most likely put it back.My dad has been up and active every single day, even at 73.  He has of course been taken care of by my mom, better than a team of private nurses, and he has every hour of every day to deal, heal and recover.  The worst of it for him was losing his taste buds, his Dr. told him that over 70 years there was almost no chance of taste coming back.  He's really bummed about this.  He has had some loss of salivary function, but no symptoms as bad as the previous post.   My mom also thinks that his hearing has worsened since the radiation, but after a life in construction it certainly wasn't great going in.  Also, he didn't need to have any teeth removed since Gingivitis in his 50's took almost all of them back then :)He stopped drinking the day he knew it was tonsil cancer.  That blew me away.  I would have sworn that would have been impossible, and just like that, Bam! no more drinking.  Wow.  What have I missed, he too had radiation on both sides.  The next thing is an MRI on Feb 23 to see if surgery will be necessary, and after that he lives.  One day at a time enjoying everything he has.Based on everything I've read about this cancer, I know we have been lucky so for.  I hope this offers some encouragement to those who are newly diagnosed.  If I've missed something or you have a specific question about his treatment feel free to email me at--- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Ira One Day at a Time Sun, 07 Jan 2007 00:00:00 GMT Hi Amy:  I came across your message while cruising the internet.  My husband was diagnosed with tonsillar cancer (stage 1) November 11 and is currently undergoing radiation therapy.  He will not need chemo or surgery at this time.(or a peg tube)  He is very tired but managing to keep up with his work. He has lost about 15 pounds which is alot for him. (being only 5 ft 6 inches tall)  I can certainly empathize with what you are going through. It is very much a roller coaster ride and difficult not only for the patient but also for the wife and family. I have two teenage sons.  We just try to keep them informed and stay as positive as we can.  We have met others who have had very positive outcomes so we are trying to stay optimistic.  You will find that you will need your friends and a lot of prayer and support to get through this.  Just take it one day at a time and you will all make it.  It will be okay. Remember to take some time for yourself: have a lunch date with a friend, call someone on the phone. It really does help. Mbdrn1 Thu, 11 Jan 2007 00:00:00 GMT Thank you for the message, Mbdrn1We're all trying our best to stay strong right now.  My husband had his first treatment of chemo on Monday the 8th and is just now starting to feel a little better but already the radiation and/or chemo drugs are starting to make it a little hard to swallow.  He was taking a medication this week to help with the side effects of the chemo, and the medication gave him non-stop hiccups.  He had a hard time getting some sleep, everytime he would roll over they would start up again.  He's now on his 7th day of radiation. One week down, 6 more to go.  He hasn't needed to use the peg tube yet.  I'm still trying to pack the pounds on him while I still can, so I baked a ham last night with all the fixings!  He didn't finish all his dinner, but then again I gave him alot of food.I really wish we could have caught this before it got to stage 3, but like I've said before on another posting, there was no way to tell he had anything wrong.  I almost can't look at survival stats because they all say something different.  Even if you talk to two different doctors at the same hospital, they have different numbers.  Some say 90%, some say 70%, some say 80-85%....all I know is that we're gonna do everything we can to make sure he makes it.  The doctors at Mount Sinai here in Miami seem very sure he's gonna do great.  So if they're that possitive, then so am I.As for taking time for myself, ....I wish.  With two small kids, a dog, and a sick hubby, I've really gotta run to keep up.  As a mom, I"m sure you know just what I mean.     Amynmiami Fri, 12 Jan 2007 00:00:00 GMT I know how you feel right now and reading your post takes me back to my cancer treatment. I am 12 months out and still cancer free. I was diagnosed stage 4 scc right tonsil and had spread to nodes. I received 35 intense radiation and 6 chemo treatments (taxol/carboplatin). I have a little daddy`s girl that was 11 when I was diagnosed. I know how he feels. We lost our business when I got sick and my wife had to work and was gone much of the time. I do envy your husband for you being able to be there. That will help him alot. He has to get angry at this damn cancer like it is trying to invade his home and hurt his family. He will not be the same person when he is done with this. Also, very important, the 2 to 3 weeks following the treatment will be his worst time. He should right now have a 50mg morphine patch put on. It definately helped me get thru it. I didn`t take a feeding tube and drank Ensure daily. I got addicted to them. I also had a hard time getting off the morphine, but it was worth it. At the U. of Michigan, where I was, they wrote a prescription that kept the blisters on my tongue bearable. It will be rough, but he`ll make it, like many thousands have. And he will get to see those kids finish school. I`m not a religion fanatic, but I spent my 10 weeks on the couch and a friend placed a small pic of Jesus in the corner of a window pane and it helped to pray to it at night before sleeping. Gave me hope. Your gonna have alot of questions along the way so please ask them. I wish I had known of this site when I was sick. Oh yeah, I tried to hide it from my daughter, it was a mistake. Be truthful with them and say daddy will be o.k. You probably won`t lose any hair. You will lose weight. I tried to really get fat before I started treatment and lost 60 lbs. But I was at 240. We all will pray for him.Ron Cavman Sat, 13 Jan 2007 00:00:00 GMT Thanks Ron...yes, it's really important to be open and honest with the little ones.  My 3 year old son understands that daddy is sick, and that he can't sit on daddy's tummy because of the feeding tube, but my 6 year old daughter understands a little more and how serious the situation is.My father was always very honest with me when my mother was going through cancer treatment.  I was 7 when my mother found out she had cervical cancer and 9 when she passed away.  My father raised myself and my little sister (age 4 at the time) all by himself... and he did a great job.  I've made it very clear my daughter that my situation and her situation are much different. So far my husband is doing great.  No mouth sores yet, and only 8 rad. treatments so far and the doctors are saying the tumor is more than 50% gone!  Still a long way to go, but this was really great news.  It is going to change him, that I am sure of, but we have a strong marriage and a wonderful family that are there for us every step of the way......Amy Amynmiami Tue, 16 Jan 2007 00:00:00 GMT Lou and others:Thanks for your great specifics on what takes place during treatment.  A close friend is due to start radiation & chemo any day now.  I want to help, so knowing what will take place as far as side effects is key.  His wife has to work full time and we were thinking of helping out by getting him home from his daily treatments.  What can we expect over the next several weeks?  Will he need someone to stay with him for a period of time after arriving home?  Any hints on helping him maintain the swallowing function?  Did anything taste good or soothe while the treatments took place.  Thanks  Friendland Fri, 19 Jan 2007 00:00:00 GMT Did your friend get a PEG tube?  After the fourth week of radiation, I was dependent on the PEG tube for food and fluids.  My mouth and throat were so sore from the radiaiton that it was very painful to eat or drink anything. I was on some pretty heavy duty pain meds and it was still too painful to eat.  I did take small sips of water periodically to keep my swallowing function.  VERY important that your friend do that, he doesn't want to lose that function.  I would suggest that someone stay with him for a while when he first comes home from treatments.  It was comforting for me to know that someone was there.  As the treatments progressed, I was so weak and in so much pain that I barely got out of bed.  My caregiver took care of everything.  She filled my gravity bags with food and water and made sure I stayed on a regimen with the food, water, and pain medications.  It wasn't until about 5 weeks after my treatments had stopped that I began to eat very small amounts of food and drink water.  It has now been 3 months and 2 days from my last radiation treatment and I just had the PEG tube removed yesterday.  Eating is still difficult due to the fact that my taste buds have not come back and my salivary glands are not working at all. It takes a lot of water to help wash food down.  Sleeping is also difficult without salivary glands.  I wake up every hour to sip water, which is frustrating.  As far as taste, nothing tastes good.  When I first started eating again everything tasted horrible.  Now, food just has no taste.  The doctors say the taste buds and salivary glands will come back in time, but things will never taste the same again. My doctor told me yesterday it could be months before the taste buds and salivary glands begin to work again.  I have read online that in some cases they never come back.  Every case is different and I have faith in God that my will eventually work again.  For now, I eat to sustain myself because it certainly isn't enjoyable when you can't taste the food.  Tell your friend to ask his doctor if he is a candidate for this medicine they can give him befoe each radiation treatment to help save his salivary glands.  I didn't find out about it until after my treatments.  From what I read about it, the side effects are pretty bad though, a lot of nausea.  It wasn't offered to me because my doctor said the side effects were too bad and he hasn't seen much evidence that it works.  But, if I had known about it before I started treatments, I would have demanded it.  Not having any saliva is VERY miserable.  I was already nauseous from the chemo so I don't know that more nausea would have matter.  Tell your friend to keep the faith and stay strong.  It's a long road battling this disease for the patient and the caregivers, but it's a battle that can be won!! I know that for a fact because I am cancer free today!!!  God Bless! Sailin Lou Sat, 20 Jan 2007 00:00:00 GMT Hi, I have gone through the battle of tonsil cancer myself.  I finished my treatments on Oct. 16th.  I just had my feeding tube removed yesterday, Jan. 19th, 2007.  I am still battling the mouth sores from the radiation.  They are nowhere near as bad as they were, but still pretty painful at times when eating.  Do you still have mouth sores?  If not, when did they go away?  Any suggestions to help them heal faster?  I am doing the baking soda and salt mouthwash several times a day.  Plus, my doctor has me on magic mouthwash which is a prescription concoction to swish and swallow several times a day.  My ENT oncologist told me yesterday this is normal that it could take several more months before they totally clear up.  I still have no taste buds or salivary glands so eating is difficult and it takes me a while to eat.  Are you having these problems too?  Have your taste buds and salivary glands come back?  I was in radiation for 20 minutes Mon.-Fri. for 7 weeks. I had some intense radiation so I'm sure a lot of damage was done.  I still have swelling in my throat and my voice is hoarse from the swelling around my voice box.  I just wanted to see how someone else was recuperating from this treatment. Thanks Sailin Lou Sat, 20 Jan 2007 00:00:00 GMT Hi Sailin Lou,I no longer have the sores in my mouth and throat but at times, depending on the foods I'm trying, my mouth does flare up.  At that time, nothing except the the rocicet seems to help.  I would say the sores from the radiation have been gone since November, so about 2-3 months post treatment.  My saliva glands are still not producing but with milk or water I can get anything down.  In fact, aside from spicy foods, I pretty much eat what I always did.  My taste buds are improving on a daily basis which makes eating a bit more enjoyable.  It will get better but don't expect it to over night.  I eat to live, not live to eat.  A foreign concept for me!!  Good luck and keep trying new foods.  And don't giveup.  It does get better.  Queenie45. Queenie45 Sat, 20 Jan 2007 00:00:00 GMT Hi Amy. I'm new to this posting thing so bear with me please. I felt I had to offer some encouraging news for you regarding your husband's treatments. I'm a 56 year old, ex-smoker, non-drinker very good physical condition man with tonsil cancer. Stage 3, if you know what that means by now, and secondary cancer in my lymph nodes. Both were on my right side. Underwent 34 radiation treatments that took 8 weeks, at the University of Oklahoma (two hours away) and just finished two weeks ago. What a great staff of professionals they have there. I couldn't have been in better hands for my money. I had no feeding tube and lost only about 8 pounds during my treatment phase. Before I started, my wife plumped me up 7-10 pounds by feeding me everything I could hold down. I did have some discomfort in my throat, tongue, mouth and soforth but nothing that kept me from working or doing anything else I wanted to. I began my treatment schedule on Nov. 9th and byThanksgiving, lost my taste alltogether. I did find some things I could still eat such as scrambled eggs, macaroni & cheese, pudding cups and oatmeal. Don't ask me why those things, everyone is different they say. I couldn't eat anything that was very spicey or had much taste because it would sting my mouth & tongue. I began using honey along with sugar in my morning coffee, that seemed to coat my throat & mouth and helped with what little pain there might have been. I finally started taking a pain medication the last week of treatments due to some mouth sores and a tongue that felt 3 sizes too big. The mouth washes prescribed to me really didn't have any affect so I quit using them. IMPORTANT ! ! ! There is a drug on the market that works wonders with saving the salivary gland and the esophagus.  It's called amifostine, brand name Ethyol. It worked great for me and, I feel, helped me get through the treatment process. There is a side effect of nausea but that didn't bother me until the last two weeks. The main thing is to keep hydrated. Don't forget to ask your doctor about this amazing drug!!!!!  AMIFOSTINE, ETHYOL  I go for my 1st post treatment check-up tomorrow. Then, 3-4 weeks later I go for my 1st post treatment PET-Scan. We're all hopeful. The staff and doctors at the OU Clinic predicted 95-99% cure rate with their radiation. They do tons of them each year and have great success.  This all wasn't half as bad as they prepared me for. On a scale of 1 - 10 I would say the pain, aggrevation and all would be about a 5 1/2. I know some folks have had it worse but it's not the same for everyone. Hopefully your husband will be one of the lucky ones like me and not have such a hard time with it. Since my clinic was so far away, my wife and four grown daughters all took turns going with me and driving me home after the treatments. I can't tell you how important that was to me if for no other reason than the moral support they gave me. Try if you can to go with your husband whenever you can, he'll need it. Please email me at any time with questions you may have. Good luck to you!Jody (zebra coach) Zebra Coach Mon, 22 Jan 2007 00:00:00 GMT Yes, Lou my friend did get the PEG tube.  We're lucky that he's being treated at one of the world's best cancer centers.  He's had his first few chemos/radiation, and is doing tongue and swallowing exercises.  We're trying to coordinate friends to get him to and from treatments.  One question I have is about the end-game of the process.  Is he likely to be able to walk with some assistance?  He was a pretty fit young man before all this began.  He's hoping to remain at home, but is it a likely scenerio? Friendland Thu, 25 Jan 2007 00:00:00 GMT Thanks Zebra Coach...You only lost 8 lbs.? ...wow...That's really great without the feeding tube!  I've heard so many people say they lost 45-60 without the tube. Well my husband is already having problems...and ironicly, the first problem was the Amifostine.  My husband had a very bad reaction to it.  Only an hour or two after he got the Amifostine, he broke out in a very bad rash, ran a fever of 101.6 F. and threw up everything he ate that day.  The experience caused him to lose 3 lbs. in one week.  We called the doctor about 5 times that night, and I thought for sure he was going to end up in the hospital.  ...No more Amifostine for him.  The Emend gave him very bad hiccups for a few days (which made eating really hard to do).  Now he's having trouble with the mucus being so thick, he goes to cough it up, and... up comes his dinner.  He just started tube feeding the other day and I'm still not quite sure how to properlly check for residual.  He combines Ensure with protein powder, fiber powder, papaya necter, and some Gultasolve and puts that in his tube.  But soon after he feeds himself, he vomits.  If anyone has any advice I could use some.  I really want him to try to continue to eat thru his mouth, since swallowing isn't any issue yet, but I don't want to push him either.  He's been drinking lots of water (thank goodness) and still no mouth sores yet.He still has ringing in his ears from the chemo.  The 2nd round is next week.  Tomorrow marks his half-way point for the radiation.  So far, that's going really well.  His weight is the main issue right now and it really has us both worried.  Please keep the advice coming.  ...Amy Amynmiami Thu, 25 Jan 2007 00:00:00 GMT  On 1/25/2007 Amynmiami wrote:Thanks Zebra Coach...You only lost 8 lbs.? ...wow...That's really great without the feeding tube!  I've heard so many people say they lost 45-60 without the tube. Well my husband is already having problems...and ironicly, the first problem was the Amifostine.  My husband had a very bad reaction to it.  Only an hour or two after he got the Amifostine, he broke out in a very bad rash, ran a fever of 101.6 F. and threw up everything he ate that day.  The experience caused him to lose 3 lbs. in one week.  We called the doctor about 5 times that night, and I thought for sure he was going to end up in the hospital.  ...No more Amifostine for him.  The Emend gave him very bad hiccups for a few days (which made eating really hard to do).  Now he's having trouble with the mucus being so thick, he goes to cough it up, and... up comes his dinner.  He just started tube feeding the other day and I'm still not quite sure how to properlly check for residual.  He combines Ensure with protein powder, fiber powder, papaya necter, and some Gultasolve and puts that in his tube.  But soon after he feeds himself, he vomits.  If anyone has any advice I could use some.  I really want him to try to continue to eat thru his mouth, since swallowing isn't any issue yet, but I don't want to push him either.  He's been drinking lots of water (thank goodness) and still no mouth sores yet.He still has ringing in his ears from the chemo.  The 2nd round is next week.  Tomorrow marks his half-way point for the radiation.  So far, that's going really well.  His weight is the main issue right now and it really has us both worried.  Please keep the advice coming.  ...AmyAmyI just went through the very same thing, I got sick on the feeding tube too. I found that maybe a slow drip into the tube worked better, or what Ive done is switched to Boost, the drinkable stuff with 340 calories and just swollow that since I could still swallow and do the slow drip with water and gatorade for hydration. The amaostine made me sick, with rash too, but I was able to get about 3 to 4 weeks of it before that happened so  maybe I saved some of my salivery glands. The hiccups from the amend goes away eventually, but the ringing is a little annoying! Hope that helps. Frank Antennawhiz Sat, 27 Jan 2007 00:00:00 GMT Hi Amy, Lou and others:   Thanks for all the posts.  I wrote earlier about my 53 year old husband who has just completed radiation treatments for left tonsillar cancer.  He did not need chemo or a PEG tube but I wish he had one at this point. He is taking oxycodone (liquid) every 3-4 hours and complains of not only a sore throat but the sores in his mouth.  He's doing all the right things:  baking soda/salt rinses, etc. His doctor did not recommend the medication to save the salivary glands. He did radiation daily for 4 weeks, then twice a day for 2 weeks. He had been working up until this last week. The doctor said next week should be the worst and then he should start to feel better.  He's lost 20 lbs so far and weighs only 130 lbs for a 5 ft. 5 inch frame. Reading your posts help me realize he WILL eventually get over this.  It's hard for both the patient and the family.  Mbdrn1 Sat, 27 Jan 2007 00:00:00 GMT Hi everybody! My name is Jon and I was recently diagnosed with Cancer in my right tonsil and possibly 1 lymph node in my right neckI will have my tonsil removed along with a partial soft pallet, which will be grafted back from tissue from my wrist.  A neck dissection will be performed for the lymph nodes.I will have both a feeding tube and breathing tube.  Hospitalization - 2 weeks.  Chem 6 weeks - radiation 7 weeks.The reason for this post is 2 fold.  1st, I'm scared to death!!  I am sceduled for surgery in 1 week and reading what I will go through (as well a my wife) is unbelievable.the 2nd reason for this post is if any of you could send me private replies on what helped you get this through this ordeal would be greatly appreciated.  My wife is going to need information on all aspects on how to care for mee.  This way I can print out your advice so that she might have input on what to do or not do.By the way, the surgeon did say that my prognosis was very good......Whoopie???! Thanks again. Jon Heresjonnie Mon, 05 Feb 2007 00:00:00 GMT Hi Jon...Before you have any surgery, check to find out how many neck dessections they do per year at the hospital you're at.  I know when my husband went for a 2nd opn. at the Mayo Clinic in MN, they told us if you're going for a neck dessection, make sure you choose a hospital that can say "We do these all the time"....because they can do a lot of harm if they don't know what they're doing.  What stage are you?  Have you gone for a 2nd opinion?As for advice for your wife....Let her know there are a lot of us out there, that she's not the only wife going through this and we are all here for her to talk to.  She needs to stay as calm as she can and focus on getting you back into shape.  She needs to make sure you take your pills, that you take good care of your teeth/mouth during all this, and that you keep active even when you don't feel like it.  This will help you in the long run. As for my hubby, they just switched him to Carbo/Taxol, the ringing in his ears from the cisplatin was the reason for the change.  I don't know that much about the carbo/taxol, all I know is that the side effects aren't as bad.  He's now on day 24 of 35 radiation treatments and still no mouth sores.  He's been taking really good care of his mouth, and the mucus is still a problem, but he looks great.  His neck is starting to get red from the radiation burns so we've been using pure aloe on his neck.  He's starting his sore throat and his voice is starting to go a little, but he's still going to work and keeping busy. Amynmiami Tue, 06 Feb 2007 00:00:00 GMT Hi everybody, I up till now have been the silent ( and sometimes suffering) husband of Amynmiami. I was diagnosed with stage 3 N1 MO right tonsil cancer primary which measured approx. 4.3 cm x 2.2 cm. adjacent lymph node was 1.7 cm ( a common nickel is 2 cm in dimension)  on 11/6/06 and started treatment on 1/4/07. I did have four opinions, not one opinion gave me less than a 70% survival with two approaching 90%. Of the four opinions, two recommended peg tubes two didn't. I went with the peg tube, because the biggest reason for slow healing and mouth sores is bad nutrition from what I have been told. I have just finished my 24th rad treatment using a varian trilogy IGRT / IMRT set up. I was started on a Cisplatin every three wks regimen, but that changed to carbotaxol due to side effects from the cisplatin ( ringing in the ears) after the first treatment.  I have been using the peg tube for nutrition, not hydration almost exclusively since week 3. I continue to drink fluids through my mouth. I have supplemented with a liquid vitamin mix and "Glutasolve" (glutamine supplement) packet twice a day. The purpose of the glutasolve is for the prevention of mouth sores. Either the regimen is working or I have been lucky. I think in my case, the combination of nutrition and IGRT has minimized irritation to the mouth tissues. It is through forums like this I found the information to help my wife and I cope with the decisions we had to face. The reality is we all get through this, not alone  and with the help of those close to us. Some of those closest are the ones we never meet in person who can offer support and real experience. I am open for any questions should anyone have any.Thank you for all your support to my wife and I,Matt  Mattnmiami Tue, 06 Feb 2007 00:00:00 GMT Hi Jon:  Welcome to the Board. I would definitely follow Amynmiami's advice to get another opinion.  My husband has a 2 cm tumor in his left tonsil with the possibility of a lymph node and they have done radiation alone (no surgery at this point).  Do you have a radiation oncologist you can consult with?  I'm sure you are getting appropriate medical advice but I would investigate all options. Depending on the stage/node involvement, the options will differ.  Good luck with the journey and you will learn alot from this adventure.  Most importantly, you will become a more compassionate and caring person and will truly be grateful for the kindness and generosity of others.  I know you will be surrounded by people who love you and your family.  Learn to receive the help that others want to give and tell your wife to not feel guilty for asking for help. People desperately want to help but don't know how.  You both will need to teach others what is most helpful. Just checking in from time to time is what has made me feel better. One thing I have done is email weekly updates to my family/friends and husbands coworkers. It's been therapeutic in a way and also keeps people informed so that I don't have to answer the question of how things are going (all the time) Keep the faith, Jon.    Mbdrn1 Sun, 11 Feb 2007 00:00:00 GMT