Gary & Mark-

Thanks so much for both of your responses. I print them up for my husband and you would not believe how much this has raised his spirits. Gary, it seems as though you are the closest to my husband's experience, sans the feeding tube.

For the first couple of months post-treatment his pain meds were very high...50mg duragesic patch and 10mg dialudid (he was allergic to morphine), and tylenol for any body aches or headaches. Of course it didn't help when he had hernia surgery to repair the hernia that developed from all the coughing and spitting caused from the "gunk" in his throat during treatment. The past week & half we have been able to start reducing the pain meds...and he is able to manage with vicodin and a 25mg patch.

We convinced the dentist to prescribe the Nystatin that you suggested, Mark. He started using it last night. This morning he said he now feels like there are scabs on the top back of his tongue...where the stinging/burning sensation was. He doesn't actually see any scabs it just is the best way to describe the rough feeling on his tongue. Is this something you experienced? He is continuing to use the Nystatin and we are hoping the "burning" will calm down soon.

The doctor said it is ok for him to take vitamins and said a multi-vitamin and vitamin E would be good. I asked about Aloe Vera liquid. He didn't have any problems with that. Do either of you know of anyone who used that? Did it help?

Thanks Gary for mentioning that the post-nasal drip just stopped one day. After the burning, the post-nasal drip has been his biggest complaint because it adds to the thick saliva. He still has to wake up in the middle of the night to swish his mouth out with "UlcerEase" to break it up and allow him to spit it out. He looks forward to the day when he can sleep through the night and can go to a movie without fear of having to "swish and spit".

He is also wondering when he will feel hungry? How long did it take before you actually felt hungry? The doctors say maybe when he gets the PEG tube removed. That, of course, is a catch22. He can't have the tube removed till he eats enough to get proper nutrition and maintain his weight, but he doesn't get hungry or have a desire to eat so he continues with the tube feeding for nutrition. Any suggestions?

Thanks for the uplifting messages. You guys are all lifesavers!

Lorie

Lorie/wife of Don, DX:8-7-03, Tonsil cancer left side stage III, IMRT x 35, 6 chemo (Cisplatin/Taxol), clear CT Scan 12-26-2003. Mets to both lungs & AML 11-6-05, mets to brain Jan 2006, mets to liver & bones April 2006, passed away July 20, 2006.