Hi jayc: I'm still here and doing OK. Before I was DX with low-risk MDS, the general consensus by several ICU docs was 3 to 6 months. That was in Jan.2008.
When I was given my confirmed DX of low-risk MDS by my haemo, median survival with del 5q was 54 months. So I've passed that mark(July 2013) and still getting along OK albeit with regular PRBC transfusions. YMMV but for me, a Hgb under 70g/L makes life difficult. I'm not a 100 per cent sure, but a similar DX as mine today has a higher median survival of 60 months.
So before your next doc appointment try to have a relative or friend go with you -with a pen & paper- to ask your questions and take down info that doc gives to you. Good luck and let us know how it goes.
__________________
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%
)
47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).