Thank you so much for your help everyone.

The day after I posted my message, my husband started trying more foods. Not sure what happened... but he became less tense about attempting to eat. To our surprise cold cereal went relatively well. There is definitley a mental component and that is also true for the caregiver/cook.

WendyinPgh - I will ask MDs about cutting back on tube feedings. However, he is not hungry in AM either. I read an old post that said some patients are never hungry until PEG is actually removed.

GI office uses guideline of 1 month maintaining weight, without tube feedings, before removing PEG.

David - I told him about your 16 month time frame and he appreciates being prepared for that possibility.

Lately things in general seem a little more normal, as side effects are starting to decrease. Lottie