Hey Janice!
Sounds like your folks at Princess Margaret have read the Corey Cutler study. I forgot to mention that not only was the data from that study collected prior to the approval of the new MDS drugs, but it also included only myeloablative transplants (the big ones, no reduced intensity transplants) and only transplants with HLA-identical sibling donors.
In other words, the world has changed pretty completely since then. Folks who are wary of transplant have a lot more options and folks who want a transplant have a lot more options, too.
But the study was useful in that it threw up a read flag and said "Whoa! Just because a disease is nasty and this dangerous procedure is the only "cure," that doesn't make it right for everyone." And maybe because it was from Harvard, or maybe because Cutler wrote it, or maybe because the statistics were way over the head of most docs who read it (me too!), it got some attention.
It's great that you aren't terribly symptomatic and have some time to decide what to do.
There are lots of great transplant journals on marrowforums. Definitely read about
Melissa's experience, check out
Laura's recent difficulties, and read
Karen's blog for a "just had it" peek at the experience of a 50-something MDS patient. There are lots of others, all very useful.
Take care!
Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at
www.greghankins.com