My husband had his Peg tube removed today a little over 15 weeks post-treatment. He never used fentanyl but I can tell you he has had many of the same symptoms you do. He is maintaining his weight only because we are monitoring his intake like a hawk. He never or rarely has any feeling of hunger. He also has the feeling he is full after taking in very small amounts of food. He has to make himself eat. His mouth is no longer sore. He can swallow. He had weeks where he had very significant aversions, much like you are describing, to eating and especially for certain foods/smells. That has resolved for the most part and it has become more physical. He can eat. He simply has to make himself on a schedule. He stopped the VHC Boost totally two weeks ago. He is finding the best result with real food that I mix in the Vitamix. I can only tell you that although the progress has been very slow, he has gotten slowly more able to eat both blended and unblended foods. We can eat out some now. Hang in there. No, you are not the only one to experience this. There are scientific names for these responses to food. I believe that he will continue to get better, slowly over time. However, I do think that we will have to remain very vigilant about his intake for a long time. It's not like before this cancer and the treatment but he told me he has never been happier, so with patience and a positive attitude you can see changes. I just keep presenting him with different opportunities to eat different foods. I refuse to get frustrated when it isn't tolerable. We just try something different. As a caretaker you can't be mad about the time invested in food they end up not eating. You have to just expose your self slowly to food. The dietician suggested we always eat outside if possible or in a well ventilated place. Although it is getting progressively better, be patient. The two topics discussed with the GI doc today were lack of appetite and early satiety, so look for progress in terms of weeks or months not days. You will get there.


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017