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Hi,
I agree with Lynn. Find a Center of Excellence! When my first BMB results came back, my local hematologist said it was a problem with absorbtion of vitamin B12. After 6 long months of vitamin B12 injections that initially increased my platelet count and then did nothing, my husband asked that I to be referred to UCSF or Stanford. At my first appt. at Stanford my hemotologist was 99% sure of the diagnosis of MDS, but wanted the BMB samples retested by their own lab. Sure enough, he was right and my local hematologist still didn't believe it. There were four chromosome abnormalities found according to the initial report, including 5q-...hello!
I wish you the best!
Jill
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Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58  , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18)
Last edited by Jill2008 : Sun Mar 7, 2010 at 06:30 PM.
Reason: correct spelling
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