[rar]

I had a transplant 1 year and 9 months ago. I had a bad case of GVHD of the gut 3 months after the transplant. They told my wife they expected that I would die, but I toughed it out and after 2 months in the hospital I was sent home very weak. Since than I was able to recover much of my former strength. A year after the transplant I came down with a bad case of GVHD of the skin, mouth, and eyes. 120 mg of prednisone for a month relieved some of the symptoms. As a result I am leery of GVHD.

The doctors don't think it is that bad. I am glad to be waking up on the green side of the grass so I can't really complain. They think I will be on the transplant drugs forever, which I hope will be a long time. It is an annoyance.

Currently I have dry eye that requires eye drops about 6 times a day, dry mouth that does not allow enough saliva to eat any dry food and causes me to wake up a couple times a night with a very dry mouth. In the past 6 months I have had 3 skin cancers that required surgery and over 100 pre cancers that required freezing. The other problem is dizziness. This is probably caused by low blood pressure. I have seen readings as low as 58/32. Cardiologist thinks it is caused by some of the drugs leeching out electrolytes. He says eat more salt, drink Gatorade and eat potato chips. It helps somewhat. The low blood systolic is now up to the high 70's too low 80's. BP is worst after exercise. They are afraid that I will fall.

I asked about treatment for GVHD, I asked about photopheresis or a clinical trial. My oncologist thinks that my condition is not that bad and I should live with it. None of this is life threatening and I can live with it. I was wondering how others are coping with GVHD and should I seek a second opinion?

Ray