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Paula,
It's hard to know why your local doc might have offered that poor prognosis. Did he (or has Dr. Raza) indicated what your Mom's IPSS score is? It's not that hard to calculate (and there's even a tool on Marrowforums that can help).
Looking at the numbers you just provided, she's below normal in two of three blood counts (and the WBC is borderline). So that would score 0.5 on the IPSS scale.
Her blasts are at under 5%, so she doesn't get any IPSS points for blasts.
0.0 for blasts + 0.5 for blood counts gives us 0.5.
Right now, we are at a score that give us INT-1. A lot of times, docs group the IPSS Low Risk and INT-1 together and refer to those patients as "Lower Risk."
All we need to know to complete the IPSS score is which cytogenetic abnormalities your Mom has. You can check that portion of the BMB report or ask the docs.
Were your Mom's counts or blasts worse when your local Doc gave you the six month prognosis? If you don't mind my asking, how old is she?
Hope that helps. It's nice to hear about the other patient's success with the drug. If you can come up with the cytogenetics we can figure out the rest of the IPSS score.
Good luck!
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
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