Valerie --
Your husband needs CORRECT PAIN MANAGEMENT NOW!! I cannot imagine why his doctors are relying on oral medication sibnce he cannot take it -- he should either be getting a liquid (e.g. liquid morphine) or be on the fentanyl (Duragesic) patch. I know at a Patient Education Day at Hopkins one doctor said that inappropriate pain management added a tremedous burden on cancer patients who already are struggling, and was (in his opinion) a violation of the Hippocratic Oath! In any case, you will have to run this route for him -- make an appointment to see his doctors and be very firm about the situation.
By the way, I would not recommend use of hydrogen peroxide as it is damaging to tissue and his mucosal tissues certainly don't need more damage. If he can't tolerate salt/soda, try l-glutamine rinse (5 g l-glutamine powder from GNC in 8 oz. water). There is an ongoing clinical trial on this to combat mucositis and it shows promise. Also there are coating agents such as Gel-Care (prescription) or Rincinol (over the counter, same ingredients but lower strength). If he is having a lot of mouth pain/burning it could be Thrush (yeast infection) and he needs to be tested for this and treated if necessary. Thrush is almost continually present during radiation and about all you can do is try to keep it at bay.
The fact he had pre-radiation base-of-tongue (BOT) surgery (which is, by the way, not the usual approach) means that he is healing from surgery AND getting radation damage -- a double whammy -- so it is not unexpected that he is having serious pain and swallowing issues. Our ENT says swallowing issues from BOT surgery can be persistent and long-lasting and will almost certainly require speech/swallowing therapy after the radiation damage heals. Be sure your husband gets a barium swallow test about 6-8 weeks out from end of radiation, and that he does the prescribed exercises religiously.
As to tomoTherapy -- it is (or should be) *less* damaging than regular IMRT and this is what all the Hopkins oncology nurses say based on their considerable experience. It is more than just CT-adjusted IMRT, it employs a 360 degree helical beam which "paints" a very accurate 3-D image of the target area and allows very precise boundaries between this and non-target tissues (up to 50% less radiation to the latter compared to conventional IMRT). BUT a lot depends on the radiation planning and also, the experience and goals of the RO doing the planning. My husband had tomo and he had far fewer problems than the folks getting regular IMRT at the same time, but still it was a very rough road with lots of bumps along the way. He did, however, have effective pain management so was able to eat and hydrate OK.
Finally, because your husband is a young, non-smoker with a base-of-tongue cancer he could well be Human Papilloma Virus positive, as this is the "new demographic" for oropharygneal cancer. This is a "whole new ball of wax " (our RO's exact words) re response to treatment (better) and chance of recurrence (less) -- and also, increased need for long-term follow-up. If your center doesn't do
HPV tests, Hopkins does. The 2007 ASCO meeting summary very strongly emphasized the need for
HPV testing of oropharygneal cancers.
Gail
