Hi Lynn,
My mom has been having a lot of the same issues as you. She just met - finally- with a pain management team last week. The one thing that they did prescribe was valtrex, she took 1,000mg in one day and she is beginning to see a little improvement. She has found that ensure plus helps coat her tongue more than any of the other drinks, and eases her hunger pangs. She hasn't had her ngtube since 10/17/07. She is holding her weight, not quite sure how. The one thing that the team suggested was that her tongue may not be healing properly due to possible malnutrition. She can't handle drinking water. She tolerates warm tea, cold Gold Peak lemon flavored tea made by coca-cola.
I am all over the place trying to get my thoughts out-sorry. Just seems so much happens all at once, each onc has their own theory...
Overall, she seems to be doing better, just not fast enough for her.
For the mucous she has an rx of Tussionex, though the nurse practioner said plain robitussin would work the same-she tried it and cried out in pain, burned her tongue. She also uses the sodium chloride rinses, her lidocaine viscous,
She ahs also complained that her throat feels very constricted at times.
We need some warmer weather...the cold temps are brutal on her mouth.