Hi Teresa!
Sorry to hear about the rough road you've had -- and now you get a diagnosis of MDS!
There are plenty of helpful and experienced folks around here to visit with, so you've come to the right place.
If you haven't already found it, you should check out the
AA&MDS website, especially all their
great archived webinars and presentations on MDS.
I think the best basic booklet on MDS is the one put out by the Leukemia and Lymphoma Society (even though they need a more upbeat cover model), which you can
download here.
Looking at treatment options, pretty much the first step is to know your IPSS score, which gets you grouped into one of four risk categories. Neil has a
neat tool here that can help you calculate that -- or your doc may be able to help. Or forum members can help, if you want to post the info.
An allo transplant is generally thought of as the only "cure" for MDS. Several forum members have had allos for MDS or for AA and have posted detailed accounts of their experiences.
There are basically three FDA-Approved drugs for MDS: Vidaza and Dacogen, which work in pretty similar ways to reduce the effects of the disease for a time, and Revlimid, which is mostly used for folks with the deletion 5q chromosomal abnormality, but is sometimes used for other folks.
None of these drugs work forever, which may be why your doc is recommending transplant. There are a variety of clinical trials out there as well.
That's a quick rundown that may generate more questions than it answers, so fire away.
And welcome!
Greg