I agree that that initial shock is hard to deal with. As has been said above, knowledge is power and this is a GREAT source for both patients and caregivers. It took me well over six months to gain the info I needed to partly understand MDS and be resolved to live the best I can.
It's been over four years since my diagnosis and I'm still learning more.
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%
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47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).