Anne Marie,

The Magic stuff, which they all tout as something wonderful, did nothing for me. You may find, as I did, that he will waste a ton of money on meds that don't really do much or, even worse, meds that actually make him feel worse than before he took them. I could open a small pharmacy with the meds I only took once or twice.

As far as the pain, he will just have to keep after his docs until they find something that works FOR HIM.

Be careful because those pain meds can also make him nauseated or make his nausea worse. That was my biggest problem throughout. I was nauseated from the Tx and I had a painful mouth/throat. Every time they tried to fix the pain, I got more nauseated. When I was sick, I wouldn't/couldn't swallow enough water or "food" so I became dehydrated which caused constipation which caused more nausea and it's own pain. I did not have a tube so it made the feeding and water part difficult.

I finally got so tired of nothing working, I stopped taking all meds and I actually did better. Again that worked for me and it may not be the answer for anyone else.

This is a difficult time for your son. A very difficult time. He or his caregiver needs to communicate often with his docs and ultimately he needs to decide what works or dosen't. Just stay on top of things as much as possible. It will only help him in the long run.

I came out OK. I also didn't find this support group until 2 weeks AFTER my TX had finished. I wish I had found it much sooner because I wish I had had the benefit of everyone's experience. Hearing that what you are experiencing is normal means a lot even if it's painful.