Graft vs. Host Disease (GVHD)

I had a BMT in 1996. with T-cell depletion which put me into remission till 2003. After 3 years of many treatments I was back in remission and had a stem cell transplanting 2005. After about a year I had asymmetrical rashes on my legs, GVHD. I was on 2 years of high dose steroids, 2 years of Extracorpial Photopheresis, a number of experimental drugs for GVHD one being Glevac I was in a clinical trial with IL-2. All these put my GVHD under control but did not stop it. I was left with limited mobility, I lost 45 pounds I have never gained back. The skin on my whole body was tight. When I ate there was no room for expansion and it pushed up on my lungs constricting my ability to breath. There were no cures so I learned to live with the new me. I couldnt swim, play basketball with my son, I couldnt walk long distances but I did not let this stop me, I continued to do these things although not well I continued going out to ear, go to concerts, etc It is now 18 years later with some very moderate improvement The new me is now me, no complaints I am still alive & enjoying life. Over the past few years treatments for GVHD are available with no real prove it will help existing GVHD patients They have been offered to me but with the possibility of some immunosupression & maybe some minor improvement. I said no, I am comfortable with who I am today. If my GVHD becomes active again then I will consider