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Old Wed Mar 20, 2013, 12:43 AM
bob weinberg bob weinberg is offline
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Join Date: Jan 2007
Location: Wynnewood, PA
Posts: 7
Dear Stayinghopeful:

Is your Dad being treated at a MDS Center of Excellence? You need to know the IPSS-R score (Internation Prognostic Scoring System - Revised). Key components are what percentage of his marrow is in the form of blasts (unmatured blood cells)? Does he have any chromosome abnormalities? Some are benign and some are signs of higher risk. The Hgb, WBC and platelets in a CBC (complete blood count) do not tell the actual risk. If they are putting him on chemo (other than Vidaza or Revlimid) at this point, I would assume that his IPSS-R score is higher risk rather than lower risk. But you should find out what it is and what factors are causing that.

There is an absolutely incredible on-line and pdf book called Building Blocks of Hope (BB of H) created by members of the MDS Foundation board. It is quite detailed and should be must reading for all MDS patients and caregivers. It can be found in both versions at http://www.mds-foundation.org/. You can find the BB of H link in one of the circulating messages at the top of the home page. You can also get a list of Centers of Excellence on that website

BB of H is one of the best resources out there.
__________________
Bob Weinberg. MDS-RARS, dx 5/98 @48yrs. Over 800 units of RBCs so far. Tx freq 7-10 days. Converted to AML, February 2013. Slated for BMT in June if lucky.
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