Message to tonsil cancer survivors:
This is the first time I've posted on this forum, don't know why I forgot about all your wonderful experience out there.
My husband had a tonsilectomy 8-5-03 (left)followed by 7 weeks of combo radiation/chemo treatments. He was hospitalized in October for 2nd & 3rd degree burns on his neck and upper chest area. In November he was again hospitalized with a bronchial infection. He has been relying on his PEG tube for all nutrition since mid-September. The doctors told him he would eat by Thanksgiving, Christmas, New Years and now they say hope for Valentine's Day. He is very frustrated and his spirits are low. His main problem is the burning stinging sensation on the back and sides of his tongue and the post-nasal drip that adds to the thick saliva causing him to still have to spit-up the "gunk" all day. The doctors just tell him to be "patient" that he is just a slow healer. He can only swallow Ensure after he swishes his mouth with UlcerEase and Triple Mix, but solid foods and most liquids sting too much to get down.
Has anyone had this problem so long after treatment ended? Any suggestions on what to do?

Lorie
Ontario, CA

Hi Lorie,

I am sorry that He is having so much trouble.

The regulars here are going to think that all I talk about is yeast infections, but whenever I hear "burning sensations" I think possible yeast (thrush) problems. Any of us that have limited salivia and especially if taking antibiotics should ask for something like Nystatin swish. The problem I had (and others have reported) did not visually appear as the typical thrush infection with the white patches etc. Instead it was burning along with sometimes itching and sometimes a fading of the sense of taste. Sometimes Dr's miss the thrush because it doesn't look like typical thrush. The treatment is easy enough that it is worth a try to see if it helps.

In every case for me the burning would go away within a day of taking the Nystatin.

My other thought for you is to see if he can take some additional vitamins by crushing them. The healing process burns up a lot of stored nutritional elements.

I hope this helps

Hi Lorie,

Your husband and my dad are in similar situations. Dad finished rad. on Nov. 6th for tonsil SCC and is still unable to swallow ANYTHING. He thought he might be able to eat mashed potatoes on Thanksgiving, however he could not. Then his mouth got worst and he did not even try to swallow anything, it even hurt to talk. His speech is completely slurred and extremely hard to understand. Does your husband have this problem?

They also told him that he is a incredibly slow healer. He uses the mouth rinse Mark suggested, as well as Diflucan for possible thrush. However, nothing seems to help him. Hopefully, your husband will have better results.

Mark
Thanks for the reply. We keep asking the doctor's about "thrush" and they just keep responding that it doesn't "look" like thrush. Until reading info on the patient forum I was unaware that it could mascarade as just a burning stinging sensation. I will DEFINITELY tell them to let him try the Nystatin. I really was concerned when he was taking antibiotics but they didn't seem to think it was anything to worry about. I didn't really think about adding vitamins to his food. I feed him Resource Support that is especially designed for cancer patients and just figured there was enough vitamins, minerals and protein in those drinks. I'll try adding more to his food...any suggestions on a particular vitamin that aides in healing?? I think vitamin E is supposed to be good and I also read that Aloe Vera is good, have you tried these?

Also we were thinking his body may be weakened additionally by the fact that he had to have hernia surgery 2 weeks ago. The hernia developed as a result of all the coughing and spitting up he was doing during treatment.

Thanks again for your help, Lorie

Diana-
I'm sorry to hear that your father is having the same problems my husband is having...I KNOW it is very very frustrating. My husband did try the mashed potatoes at Thanksgiving just as your father did. He was only able to get down 2 spoonfuls and then it hurt too much. Yes, he stopped trying anything after that and even water was stinging. We had him drinking water that contains fluoride to help his teeth, but yesterday we discovered that it doesn't sting if he drinks water w/out fuoride, we never thought about that.

Occassionaly my husband's speech is slurred, but it seems only after he has been talking for a little while. He does get frustated when I have to ask him to repeat himself because I didn't understand what he was saying. Fortunately for us this is not very often.

I'm sorry to hear that the Nystatin/Diflucan didn't work for your father. We are going to try them and see if it helps my husband. We are also going to the dentist (specializes in treating cancer patients) today and are hoping maybe he has some suggestions, as the Oncologists and ENTs don't seem to know what to do. I'll let you know if he recommends something, maybe it can help your father too.

Keep your head up. Lorie

Lorie, as a tonsil cancer survivor, maybe I can share my experience here. Although I didn't have surgery, the chemo/radiation treatment was so intensive that swallowing was extremely painful and I lost my voice for over a month. My healing process was also a relatively slow one since I'm diabetic.I still have ulcers on my tongue.When I was hospitalized in my latter half of treatment, nutrition was a big problem and my oncologist frowned every time when he checked my eating and drinking record. He warned me that if I continued not taking enough food or water, he would get me a feeding tube. I feared the idea and told myself no matter how much pain there was, I had to tolerate it and get myself enough nutrition. It was around christmas time and my target was to leave the hospital on new year eve to have family union, which to everyone's surprise, I could make it.Before meals, I took all kinds of pain medicine and used gargle to numb my mouth first. I waited for about 15 minutes for the medicine to take effect. Then I swallowed the food (it was plain,thin congee only)with tears in my eyes. Every meal was a great hurdle but I kept on telling myself that I had to surpass it. When I was eating, I would send my relatives away so as not to frighten them. In the afternoon,I took a cup of icecream. Not too bad to swallow but raised my blood sugar level and I had to get my blood test 4 times a day.The level was so high that the nurse would yell at me asking me what I had eaten that could raise my blood sugar level so high. I said just penadol syrup and ice cream. My oncologist told me to throw away the diabetic concern at that moment since my only mission was to get nutrition. Yes, drinking water was also a nightmare. It was a knife cutting feeling but I reminded myself all the time that if I didn't drink or eat, I could not win this battle.So to look back,I think that it was strong will and caregivers' support that helped me go through all these hardships. One more thing, it is by trial and error that I could increase my list of food that I could take. There may be frequent setbacks when something that could be eaten yesterday could not be taken today but vice versa. Where there is a will, there is a way. This is my motto in life. Never give up.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Hi Lorie,
My experience was almost identical to Karens. It was a couple of months post Tx before things started to slowly improve. I also did it without a feeding tube.

One thing you mentioned that caught my eye was antibiotics. With dry mouth they almost always cause a thrush bloom. A Nystatin swish & spit like Mark suggested or diflucan will knock it out. Thrush infections can be very serious if left untreated. They can become fatal if they go systemic.

Early post treatment is a very hard time. Make sure that his pain meds are adequate. I was on pretty heavy duty pain killers a good 2-3 months post Tx. It took a long time for the radiation burns and blisters to heal along the sides of my tongue which were the most painful. The good news is they did heal. The skin on my neck was the first to heal. The back of my throat - the last. I used to take 2-4 15mg morphine tablets prior to eating or drinking. I also used "pink magic".

The thick saliva and post nasal drip just stopped one day (it seems like a month or two passed).

About vitamins, in the book "Living Well With Cancer" by Katen Moore and Libby Schmais, they don't recommend anything other than a daily multivitamin. They recommend clearing it with your nutritionist for any other vitamin plan and never megadoses under any circumstances.

I can certainly relate to his frustration having been there myself in the not so distant past. I promise it WILL get better.

I should follow Gary's comments about checking with your medical professionals. What I have read is that megadoses of vitamins are an unknown factor when in ACTIVE treatment ie: currently in radiation or chemo therapy. I have not read or heard of any study that recognizes good or bad effects during therapy. I did ask my radiation oncologist about my fairly high doses of vitamins during my treatment, and he didn't have a problem.

Gary IS CORRECT It would be wise to discuss vitamins with your doctor.

In my case the professionals were more or less indifferent and seemed concerned about calories only. There are several good books in print on the subject of cancer and nutrition I urge everyone to consider learning as much about this subject as possible. To me it is only logical to believe that the body is going to need much more while rebuilding after the effects of treatment.

I took a fairly high potency multi-vitamin and vitamin E, omega 3 (DHA)suppliments and flax seed oil. I always took them together with food and tried to eat as much colored plant (salad) foods as possible. When the pain was bad it would all go in the blender (pills would be crushed first).

Karen-

Thanks for your experience. It really helps to know that other people experience the same thing with some foods/drinks being ok one day and then not ok the next. After reading your story I'm very glad my husband had the PEG tube put in before treatment started. When he felt brave enough to try to eat/drink something and then it stung really bad he wouldn't want to try for a long time after that...the PEG tube gave him this option...he didn't have to force it down. The PEG tube also has allowed him to only lose 27 pounds total and he has gained 5 of that back already.

After reading the wonderful imput from everyone on this site he is feeling in much better spirits already. There is nothing like hearing from others who are going through the same thing to let you know you are not alone and that you are not "weird", as his radiation oncologist jokes with him about when he doesn't know what else to say.

Lorie

Gary & Mark-

Thanks so much for both of your responses. I print them up for my husband and you would not believe how much this has raised his spirits. Gary, it seems as though you are the closest to my husband's experience, sans the feeding tube.

For the first couple of months post-treatment his pain meds were very high...50mg duragesic patch and 10mg dialudid (he was allergic to morphine), and tylenol for any body aches or headaches. Of course it didn't help when he had hernia surgery to repair the hernia that developed from all the coughing and spitting caused from the "gunk" in his throat during treatment. The past week & half we have been able to start reducing the pain meds...and he is able to manage with vicodin and a 25mg patch.

We convinced the dentist to prescribe the Nystatin that you suggested, Mark. He started using it last night. This morning he said he now feels like there are scabs on the top back of his tongue...where the stinging/burning sensation was. He doesn't actually see any scabs it just is the best way to describe the rough feeling on his tongue. Is this something you experienced? He is continuing to use the Nystatin and we are hoping the "burning" will calm down soon.

The doctor said it is ok for him to take vitamins and said a multi-vitamin and vitamin E would be good. I asked about Aloe Vera liquid. He didn't have any problems with that. Do either of you know of anyone who used that? Did it help?

Thanks Gary for mentioning that the post-nasal drip just stopped one day. After the burning, the post-nasal drip has been his biggest complaint because it adds to the thick saliva. He still has to wake up in the middle of the night to swish his mouth out with "UlcerEase" to break it up and allow him to spit it out. He looks forward to the day when he can sleep through the night and can go to a movie without fear of having to "swish and spit".

He is also wondering when he will feel hungry? How long did it take before you actually felt hungry? The doctors say maybe when he gets the PEG tube removed. That, of course, is a catch22. He can't have the tube removed till he eats enough to get proper nutrition and maintain his weight, but he doesn't get hungry or have a desire to eat so he continues with the tube feeding for nutrition. Any suggestions?

Thanks for the uplifting messages. You guys are all lifesavers!

Lorie