Michael --

Barry uses salt and soda rinses a number of times a day -- his dental onc. actually said "if you can do it 1000 times a day, do it <gr>" -- finds it really helps clear his mouth and refresh. Onc says helps clear up mucositis as well. Barry also uses GelClair as a rinse to coat sore areas; the same company (GUM) makes an over-the-counter version called Rincinol which isn't as strong but contains same soothing ingredients.

Barry of course has no choice on eating since his PEG fell out and Hopkins opted not to replace as he was almost through treatment, in a way this has been good -- to him "food is medicine" and he eats it whether it tastes like much or not. In another way, it was too bad as no one anticipated the two infections he came down with (which got him into hospital) and there he found the food hard to take, too spicy, not smooth enough, etc. and he lost weight in both stays, going from only 2 pounds below weight at dx to 10 pounds down. The ability to supplement would have helped then.

Nelie is right, watch what you eat -- avoid things with gritty texture, large solid lumps, etc. but try to eat even if it tastes like *nothing* as your throat needs the exercise, Whether you will be able to do this without pain relief, I am not sure -- Barry has to use it to eat and his ENT had to as well when she was being radiated (with no PEG). His ENT told him to eat bland smooth things and to use lots of water (Barry prefers 1:1 diluted mango juice) to wash down to avoid getting stuck in throat.

Barry cannot eat anything that is too cold or too warm, just room temperature. Hot especially is a no-no. Too cold makes him cough as it goes down. But everyone is different, I know many say very cold helps.

You may wish to think about supplementation with zinc, which is supposed to help taste return more quickly. I am not sure in what manner -- can you take tablets? Barry is going to start using this, although he can taste some things and in fact, never lost his taste completely (thanks to tomo, front of tongue got little radiation). You may be the same, try sips or nibbles of various things to "test"-- Barry can taste mango, strawberry, coffee (faint), vanilla, salt (this taste is supposed to return early-on), sugar (he never lost ability to taste sweet), and some chocolate. But most stuff just tastes bland and vaguely salty, but it is definitely improving but slowly.

Keep on plugging away -- this is not a quick process --

Best wishes to you and Seth,
Gail and Barry