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Hi Sylvia. I'm Julie. And I have also being diagnosed with secondary MDS. I've had Aplastic Anemia (another type of marrow failure) when I was 20. And now this year at 34, I've been having problems with platelets and was diagnosed MDS. So your MDS case sounds very familiar to mine. My platelets are usually between 20 and 30. Because it seems to be staying there, they aren't doing anything right now.
However, I do have a donor standing by for a transplant. Because of my age and prognosis, bonemarrow transplant (BMT) is a really good option. But recently my Dr told me that they are going to wait until the risk of disease is the same as risk of transplant... if you know what I mean. BMT has its risks, but when it works well, it can bring miracles! There are many of those miracles here on this site.
Hope your appointment goes well. Watching and waiting is often a painful process in this disease. But at least I hope the Drs can clarify things for you, so you feel better about the future and just getting on with life while you can. That's the last thing my Dr told me the other week. LIVE your life!
All the best,
Jules
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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