I have post-PV Myelofibrosis and am getting to the stage where I can see transfusions looming and therefore my best chance for stem cell transplant (SCT) will soon be gone.
I have so far resisted SCT because the outcomes are so unpredictable (especially if u don't have a related donor, which I don't), the practicalities tricky (no dogs allowed, 3 hrs drive from hospital, need for carer etc) and the process nasty. However, I was hoping for 5 years of decent quality of life before I reached the transfusion stage and that doesn't look as though it's going to happen. So I am having a final review of SCT
My question is about outcomes and complications of SCT. Does anyone know of a good study that tells me not just the basic statistics about mortality and rejection, but how good the quality of life is for those who survive? The impression I get is that a lot of people are still having to go in and out of hospital, or don't feel that great, largely as a result of GVHD but for other problems too. And if you have have a SCT what was your experience of these things, or anecdotally what have you heard?
I have visited my nearest STC centre and asked about statistics but they don't seem to have much apart from mortality and rejection.
Thanks in anticipation