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Old Fri Sep 26, 2008, 01:55 PM
Birgitta-A Birgitta-A is offline
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Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
End stage MDS

Hi Susan,
Your dad must be very strong fighting this disease for so many years! You know I think it is very common that MDS patients have low red blood cells and normal white blood cells and platelets.

As Whayne already told you you must ask if they have tried to treat your dad with Epogen (for red blood cells) or similar drugs and Neupogen (for white blood cells but works with Epogen for better effect) or similar drugs. He has perhaps had both these types of drugs before?

The drug vediva is unknown to me - do you mean Vidaza? Vidaza is considered to be the best drug for MDS patients except for patients with a chromosome aberration, 5q. These patients often respond well to Revlimid. It may take at least four months for Vidaza to "kick in" but then about 60 % of the patients have some hematological improvement.

Hope your dad gets effective treatment!
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal for 4 days with transfusions for iron overload, Neupogen 2 injections/week for low white blood cells, asymptomatic
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