Hi Kerry --
My husband Barry had a stage IV base-of-tongue and right tonsillar tumor as well as two lymph nodes involved. His tumor, before the tonsil was removed (the surgeon would not do anything with the base of tongue portion because of the probability of long-term speech and swallowing difficulties) was over 3 cm in longest dimension. He was treated at Hopkins with 33 radiation treatments for a total of 66 Gy (30 full-field and 3 treatments a "boost" to the primary target area, for him the tonsillar fossa and base of tongue). Along with that he had chemotherapy, my husband got 7 small doses of carboplatinas a radiosensitizer. Today they would also have added Eribtux, per our RO. He also took amifostine throughout, except on chemo days. Luckily he was one of the few who could handle it -- most apparently cannot, at least not for the entire time, your husband's experience is not at all unusual.
Hopkins is routinely testing all HNC patients for human papilloma virus-16, and finds that a very high % are positive -- most presenting in the tonsil and base of tongue. Dr. Gillson who is the
HPV guru at Hopkins says that Dana-Farber also has a program on
HPV HNC, you might ask if they tested your husband's tumor. It makes no difference in his treatment but
HPV positive tumors are supposedly more sensitive to the radiation and less apt to recur, which is a positive thing.
My husband was able to eat all the way through but they did insert a PEG and it is a life-saver for many. The important thing is for your husband to try and keep swallowing (even if only water) as much as he can to keep the mechanism working. The metallic taste is probably from the chemo -- my husband had it at first, he could only drink a few kinds of bottled water, for example -- Poland Spring was the best -- but that went away. Mostly it is no taste (he had a little, the radiation field spared the front of his tongue, he could weakly taste some sweets and some foods like, interestingly, seafood) but eating was no joy -- "food is medicine" he would say all the time. We pureed soups and other things, he could eat soft scrambled eggs, cream of wheat etc. plus of course the dreaded Boosts and Ensure. the hospital gave him several cases of a hi-cal flavorless nutrient formula for PEG use that we used as a base for smoothies in the blender.
He was his ideal weight when diagnosed but his MO recommended he put on weight before treatment "because you are going to lose 20 pounds" -- he actually didn't during treatment -- lost about 12 pounds but then lost another 8 or so in two post-treatment infections so her prediction was right...
Barry is now 6 months out of treatment, two PET/CT scans and several physical exams have found no sign of cancer but he knows he will have to be monitored for years and will have to keep his fingers crossed as well. He has regained about half the weight he lost and eats normally, has had his taste and all back for months now. We went to Mexico birdwatching in the Sierra Madres in January -- a high-energy trip-- and he did better than the friend who came with us.
From your point this looks like a very, very difficult road -- and it is, no hiding that fact -- but there is an end and there is a future. Barry's ENT surgeon herself had HNC 18 years ago and made it through the rigorous treatment of that era (no PEGs, old-type radiation) and she was a font of encourgement and knowledge. In fact if it hadn't been for her example he may not have undergone treatment. He was very concerned that he would end up debilitated and unable to do the things he loved, like world-travelling.
Now of course he realizes that he made the right decision and is looking ahead, not behind.
You have found a great resource, not only for advice but also for encouragement and support -- this treatment is about as hard for the care-giver as for the patient.
Be strong...
Gail
