Hi Marty,

My husband finished his radiation in May and had many of the issues you're describing. He actually felt worse once the treatment ended and that kept up for the first 2 months. He started eating scrambled eggs with cream cheese, pureed dinty moore beef stew, and cream of wheat with maple syrup. Soups and custards are good.

Like Mary we ended up throwing lots of pureed food out because it just didn't work for him. Some were too thick and some were too thin. I felt like Goldylocks looking for just the right thing for him. We make high calorie shakes by mixing protein powder, ice cream and syrup into carnation instant breakfast and his neutron 1.5 canned formula because he could drink those easily, even when he couldn't taste them.

Salty taste came back first for Jack, sweets about 3 months post treatment - but that's very individual. His swallowing has gotten progressively better and the PEG tube was removed in August. At this point he still has dry mouth, but it's too early to know what the status of that will be, and he's learning to work around it. He went from puree to minced to chopped pretty quickly in retrospect although it didn't seem like it at the time. We have a new phrase - he's "repositioning" his food, which sounds so much nicer than hacking it up.

We also sent our slides to Johns Hopkins and are waiting to hear the results of the HPV 16 virus as Jack was another non smoker, non drinker. If he is positive I would like to see if he is a candidate for that clinical trial.

He was somewhat depressed and quiet right after treatment but had a turning point moment where he came out of that about 6 weeks post treatment. He too always told me he was fine and didn't need medication - but I watched it closely to see what direction he was going in. It strikes me as a little nuts to not be to be depressed after treatment ends. There's such a sense of "now what?" and waiting for the other shoe to drop.

We did a day trip - around 4 hours away - to go to a family party and that made a big difference in Jack's mood. We planned the trip to bring all the tube feedings and extra supplies/meds in case we wanted to stay overnight and he had a great time. He even found a couple of things he could eat at the BBQ because he was supported by people who didn't care if he spit it out. At that point he was still on pain meds but he really needed that connection to life goes on.

Sounds like we should get all our husbands together to trade notes and the 4 of us should go do something fun. I'll bet a few more forum members would probably join us.

Consider this a virtual lunch invitation. We'll be with each other in spirit.

Regards JoAnne