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Old Fri Oct 31, 2014, 12:13 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
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Hi Data,

What are your reticulocyte count, ARC, and ALC?
Have you had your ferritin, B12, folate, and PNH tested?
What lead the 2nd doctor to a diagnosis of MDS-RCMD?
Is your marrow still hypo-cellular?

The distinction between AA and MDS is very difficult in a hypo-cellular marrow in the absence of blasts or cytogenetic abnormalities. Hypo-cellular MDS can be caused by an immune response (like AA) and can respond to ATG/CyA. Most other MDS subtypes are treated with hypomethylating agents. Both are very potent medications with the potential for serious side effects. So, it would be prudent to wait to see how your pancytopenia behaves before trying one or the other. Some people maintain stable counts for years with no treatments.

If you are not transfusion dependent, I don't think many doctors would move to treat you rapidly. One reason is that your current blood counts, although low, are equivalent to some partial-responders after treatment!

If it is believed that your MDS is secondary to your prostrate treatment, then you may have to go the transplant route. However, I still don't think doctors would jump on doing this now while you are "stable".

I just saw an excellent presentation by Dr Gail Roboz on the latest thoughts about MDS, treatments, transfusions, etc. I think you and your wife should check it out, as she is an amazing speaker and really lays out the facts in a clear and digestible manner. There are two parts to her presentation, from the Philadelphia Live Stream:

https://live.blueskybroadcast.com/bs...=1418&CAT=8549
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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