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Old Fri Jul 31, 2009, 04:27 PM
knstone knstone is offline
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Join Date: Aug 2006
Location: Cincinnati, OH
Posts: 118
Hi Birgitta

Thanks for your post of the information. Dr. Macejewski at the Cleveland Clinic mentioned the use of Valproic acid with Vidaza and said we might add it to the Dacogen if I responded to either drug.

Unfortunately I have not responded well to either Vidaza or Dacogen, each lowered my blood counts with no real recovery after each cycle that was sustained. While both seem to help many MDS patients I think around 50% do not respond and I may be in that group.

I had such a good response to Thalidomide in my initial treatments that my doctor here in Cincinnati, OH, decided to try it again. It has shown some slight improvement in the Hgb. We are hoping for it to work again, perhaps it's a long shot but worth a try.

I'm also taking Promacta (elthrombopag) for my platelets. It seems to have helped somewhat but no major gains, I'm stable in the mid teens on platelets with no bleeding.

I hope you can get treatments for you MDS soon, we all appreciate your insightful comments.
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Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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