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As I enter into day 23 since my transplant, and wait for the possible effects of GvHD, I have done a lot of reading both on this site and others, and the dominate theme seems to be the horror stories of both acute and chronic effects of GvH. Makes it a little difficult to keep positive about the future. I get it - GvH can be real bad however from medical staff I hear of cases where it isn't too bad, where everyone doesn't get chronic GvH, where acute GvH is bearable. For those of us who have just had SCT, or are making the decision about having a transplant, it might be nice to hear some positive stories also.
I guess this period of time between the SCT and GvH, which can be weeks or months, is one of the most difficult periods of my life. Feeling fine, eating well, and yet knowing the hammer is going to fall and tomorrow I might be hit with GvH, and indeed might die withiin a month.It is hard to keep those thoughts out of my mind and any postive news could/would help. To quote the Grateful Dead, "what a long, strange trip it has been." Continue to pray for all of you. Keep the faith, Ollie Posted on 06/04/12, 12:54 pm |
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Hi Ollie, my main comment to you on this post would be to be positive about any GVHD. I had an unrelated allo transplant and i am 9 months on and have what would be considered mild GVHD that only started 4 months after transplant. My symptoms were mild itchy rash, elevated liver levels and a dry mouth. I was put on prednisone steroids and have been weaned down to 5mg and put back on the Cyclosporin and it is under control at present with exception of the dry mouth. I know 9 months is not that long but it has been good quality of living during that time. So I would be just enjoying that you don't have any symptoms and focus on that. I believe in 'not putting the thought out in the universe' which is hard I know with what we are dealing with but I'm hoping it helps. 
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Nicrt3 -
Little late, however I truly thank you for your response. I strongly believe that this board needs some positive news. After all, people do survive SCT, get through GvH, either aGvH or cGvH. Perhaps more will post their feelings and histories. I am only 68 days into transplant, and to date doing well. Saw doctor last week and my counts are normal for normal folks, first time that has happened in a long time. Skin has which I would call a condition 2 stage, with 1 being least and 4 being worse. Have been using creaam for it, however now on Prednisone 4mg plus the Clobetasol cream. Skin cleared up on face, back front of trunk with remaining arms and legs getting better. Hay folks, when I got into remission for the second time at the end of March, it was predicted I could survive an average of two to three months without a transplant, perhaps a small chance to six months. I am four months now, and progressing on. Nicrt3 doing even better. There is LIFE after transplant. Sign on, give your experiences. Join the group. We are all friendly and all have something in common - the requirement for a limited group - we have leukemia. And, we will survive! Thanaks again Nicrt3, and good luck. Ollie
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