Well today is 15 weeks post treatment and my husband is still not eating. His tongue is getting better though, only burning if he tries anything acidic (juice or anything with tomatoes).
He tried a scrabbled egg and it got caught in the back of his throat and he started gagging. Thank you Gary for sharing about Carnation instant breakfast- that is working great! The Ensure/Boost was too thick and would add to the "gunk" in the back of his throat.

Don (my husband) is still discouraged because just when one thing seems to be getting better something else appears to take its place. He now has an ear ache that radiates down into his jaw and has made hearing from that ear difficult. The shoulder & arm pain are still there but with daily massages they seem to be getting slightly better.

The medical oncologist made us mad. He didn't seem to care about any of the symptoms and only recommended a disphasia clinic after I broke down during the visit...I was very very frustrated. His attitude has changed since the CT scan came back all clear...sort of "I cured your cancer now go away". We were very happy with our oncologists till now.

On the bright side, Don saw his primary care physician yesterday. He was GREAT!!! He asked all the right questions about every symptom and checked everything out. He is refering us to a GI specialist to send a scope down Don's throat to check for swelling and to see if the muscles that control swallowing are moving properly. The amazing thing is that no one has sent a scope down his throat at all during this entire ordeal. Don told him if they got the swallowing to work better he could put up with the burning/stinging tongue and would be able to eat bland foods. We were very happy after leaving...this doctor has a game plan and he spelled it all out. He also said sometimes the specialists have a very narrow field of vision and once you are out of that area they don't want to see you. Have any of you experienced this also?

We are really hoping this works because Don has had the PEG tube in for over 5 months now and we have been advised that if it has to be in for over 6 months they will have to replace the current one with a new one. Hopefully they will get the swallowing reflex to work and the tube can be removed for good.

The doctor believes that the shoulder and neck pain are just muscle aches, as some of you mentioned. Guess I will be continuing with the daily massages (hummm...wonder if this was planned). The ear ache is a result of the post nasal drip that Don is still experiencing. They have presribed Allegra for both .... has anyone had ear pain? When does the post nasal drip stop? The spitting up "gunk" is slightly less and it is now looking more "normal" in color...if that is possible.

Don has been putting vitamin E on his tongue...it seems to be helping. I have been putting Acidophilus in his food...trying to prevent any yeast from growing.

This is surly a rough road and I have nothing but admiration for all of you who have gone before us, you are truly an inspiration!

Thanks for all your help and encouragement,

Lorie

Lorie/wife of Don, DX:8-7-03, Tonsil cancer left side stage III, IMRT x 35, 6 chemo (Cisplatin/Taxol), clear CT Scan 12-26-2003. Mets to both lungs & AML 11-6-05, mets to brain Jan 2006, mets to liver & bones April 2006, passed away July 20, 2006.