Ask you doctor about "Magic" mouth wash. It pretty much numbs your mouth for awhile so you can eat and have some temporary relief from the pain.
Sandy

Regaining salivia is very different for everyone. Mine was almost normal at about 4 months post tx. Im one of the very few lucky ones who do not need to carry a water bottle.

As far as taste goes, it was abotu the same around the 4 month point I was starting to come around and things tasted better. For several months everything tasted burnt, like ashes even water.

Once taste buds are gone I dont think they come back. This is why it varies so much for everyone. Some people have oral cancer on their tongue while others like me have it in their cheek or on their gums. This makes a huge difference as to where the radiation is focused which also will determine what damage is done. We all get scatter radiation, but the area that is the focal point is what will take the hardest hit.

Make sure your husband stretches his mouth open as wide as possible several times per day. He also needs to keep swallowing even with having the PEG tube. These things will help him avoid bigger problems down the road and make recovery so much harder.

Best of luck with the PEG tube tomorrow. He will be sore for a couple days. Please ask if you need any PEG tips. It took alot of trial and error before I was successful with mine.

Thank you! The sad irony for my husband is that he is a chef--I really hope he can enjoy food again. It is so helpful to hear from people who have done what he is doing. Thank you thank you thank you.

I did, and I am picking up the prescription now. Thank you!

Those questions and their answers are probably going to be unique to the responder but here's my response.

Taste and saliva seem to return hand n hand meaning as my saliva improved so did my taste. I "noticed" improvements in months 4, 5, 15 (big improvement) and 24. Nothing seems to have changed since then.

I was drinking orally the whole way through (no Peg) and I started to eat solid food in my 3rd week post Tx.

I know mine will never be back , Taste or saliva. One Dr had the decency to tell me I was right after I said I don't think those 2 will ever return. All he said was you are right Jim. What we remove is gone forever unless a miracle occurs.

Taste came back for me several months after treatment, saliva won't, I have to carry water everywhere. It's been a year since treatment and 9 months since surgery and I'm just now able to eat some foods however difficult as it may be. I still use PEG for liquid pain meds when needed and I still drink Ensure Plus for most of my nutrition.

Jim, our experience is very similar to each others...both lost 70lbs, memory loss and bad reaction to ambien, very interesting

Yep Eric, we seem to have traveled the same highway system. LOL Too may bumps on our highways. Have a great day Eric.

Hi, this is my first time on the boards and my first post!
My husband finished rad/chemo on 2/22/09 and although he still has the peg he can eat pretty darn well...I'm so proud of him! Can even take his pills orally.
He says he never really lost his taste buds but the saliva was severly impacted and on the other hand he had horrendous mucositis so although his mouth was never really dry it was nasty tasting and smelling! That's pretty much subsided now however he goes in for a nd on Monday which I'm really worried about and we'll see how serious it will be.
I wonder, however, about his memory. He's only 61 but there's some things he just doesn't 'get' anymore (like asking me which direction the faucet faces for the cold water?) and sometimes I think his comprehensive skills have slowed...we'll just have to see over time!

Jeani,

Welcome and I too didn't find this site until after all the fun was over!!

I was 58 at Dx and I'm now 61 and we have discussed the memory issue often in the 3 years I've been here and really, like everything else associated with this cancer and it's Tx, it just depends on the individual.

Speaking for myself, I felt like my memory was affected, especially short term memory post Tx. It may very well have been what we refer to as Chemo Brain or the mental affects of the whole ordeal or both, who knows for sure? Today I feel as if my memory is not like it was pre Tx but again I'm 3 years older so who knows again?

None of this is anything more than a tiny nuisance except if I forget to get something I PROMISED MY WIFE I WOULDN'T FORGET! She used to take my side affects into consideration but she's a little quicker to get upset now.