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Nigel,
This is the million dollar question that I struggle with as well. I have consulted with several institutions about my situation and almost all of them said the exact same thing - it is important to do the transplant before MDS turns to AML, but other than that, barring other pressing issues, that waiting provides the greatest overall survival. There are a few articles about an algorithm that has been created to help doctors and patients determine when to go forward with transplant.
My thought is that every year I avoid a transplant is a year that they get better and doing them, that better drugs are tested and developed, and the odds of finding a non-transplant cure increase.
Not sure if this helps, but it is another perspective.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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