Hi, wanted to answer some of the questions posed. Tim(my husband)did end up with a feeding tube (peg) that was put in midline in his abdomen that pulled everytime he sat up etc. and that eventually lead us to the ER for removal. I contacted another surgeon who inserted a J tube but that meant being hooked to a pump 14 hrs. a day since he couldn't sleep sitting up in order for the tube to work. After that surgery about a week post op he opened up the whole incision which was grossly infected but no fistula tract to the tube (thank God) and we irrigated and packed that for a week. A few weeks later he woke up one morning and felt a hard warm lump between the tube and the incision and sure enough he ended up in surgery for another infection and not only that, the next day the original incision opened again because it was the source for the newest one. Finally got that healed, finished radiation June 2, and thought ok, not long now since they all indicated that this should now be the road to healing, but no so. He got progressively worse, sicker and sicker while on the tube feedings (2cal, 4 cans a day) He was using morphine thru his tube for the pain and we thought it could be that, so we started weaning everything we could think of till there was nothing left but the tube feeding. In this time period we went to the Fam dr. due to hives that covered his entire backside. They were stumped, didn't show any indication of thrush, but gave him something anyway plus Xanax for pain till they could come up with something besides the morphine. Well I took matters into my own hands and went to the oral surgeon who said it must be the feeding, so we stopped it and in 24 hrs. he could get liquids down. He had the tube pulled a couple of weeks later and things were ok till a couple of months post tx his tongue began to sting and burn. Nerve endings were regenerating and since his tongue had been fryed the most, we were not surprised. But now that has become progressively worse. They gave him demerol for the pain but he was up to 200mg just to eat supper so they put him back on fentanyl patches which he is now up to 75mcg. The rad. onocologist have not been helpful at all, he has used all the usual swish and swallow, topical gels to numb, two courses of prednisone to help decrease the inflammatory process. What hurts the most is the tongue but it there are still blisters in his mouth and throat and while eating, the throat blisters often rupture causing him to choke. His blood work is all normal for hct/hgb to albumin showing that he's getting what he needs but the healing just isn't happening. I'm just at a loss, maybe because of the very high dosage and the length of treatment this will take more than the usual time to heal, but we are now approaching 5 months and the pain is worse- mostly the tongue. I guess maybe like you have said it's time to go see someone who deals in this more. Thanks for all your imput and if any other ideas come, please pass them along. We are both nurses so are not passive when it comes to pushing for things to happen. Rolanda