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Old Sun Sep 12, 2010, 12:45 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Greg,

I've read that people with MDS with trisomy 8 are very responsive to immune suppressant therapy. So, that would make me think that Vidaza shouldn't be a first course of treatment for you. Cyclosporine is usually pretty well tolerated and is less risky than Campath or ATG. The downside is that it takes about 3 months to see if it is working. Also, it can be hard on your kidneys. So, you must stay well hydrated and track your creatinine. Despite all this, it seems like a good use of watch-and-wait time, since you have the trisomy 8 mutation.

I've been on cyclosporine for almost 2 years, and my counts are still slowly rising because of it. I haven't had bad side effects on the lower dosage (4 mg/kg/day). The only thing that I can think of is a heightened sensitivity to the sun. MY BP is fine, and I'm still very active. On high dosages (12 mg/kg/day), cyclosporine was a lot rougher for me.

Everyone is different. I thought I'd just throw in a positive cyclosporine experience for you! Best of luck!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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