WOW, Thanks everyone! I may have misled you about Don's tongue, 2/3 of his tongue BASE was removed and it didn't cross the midline (though it came pretty close)That probably makes a differance in prognosis for swallowing. Tongue Base is probably worse than surface but only one side should be good in that one side is normal? Eileen and Darrell PLEASE keep me posted as to how things are going. It's so encouraging to hear your stories. Eileen, I'm inclined to judge for ourselves if there's an improvement rather that put faith in the numbers on the machine. Can he really swallow better? Gary, I know what you mean about this board being so informative and I believe we really do have an edge on what is new and whats working with this damn disease. Our "diagosing" ENT never mentioned IMRT. Our second opinion did ... but didn't mention a PET scan but third opinion did... and no one mentioned IMPT (Proton therapy) but OCF did! It'll be curious to see if his swallow therapist "pooh-poos" it. Then what? I have info coming on it but can anyone tell me about price? Don is fortunate to have very good insurance but this could be considered expermental (Isn't all medicine? Thats why they call it a practice.) Darrell your personal story almost parallels Don's except he was N2b. And threatment was identical except he had cisplatin. But the biopsy on his tongue was still positive 2 1/2 months after rad and we had to have the big surgery instead of just nodes. Strange how differant everything can be from one to the next. I pray for all of us dealing with this cruel cruel disease.
Karen