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Old Fri Jul 24, 2009, 03:16 AM
Steven Steven is offline
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Join Date: Jul 2009
Location: New York
Posts: 16
Hi Hopeful,

This is the first time I heard of the term "trough measurements" so I'm not certain if we're being tested for it or not. I found out the Creatinine levels by looking at his ferritin test.

How long were you on cyclosporine before you noticed it had a severe impact on your kidneys? I haven't noticed any physical symptoms in my dad relating to kidney problems except frequent urination, but I figured that might be because of all the water I encourage him to drink. I'm actually not sure what an indicator of kidney problems is (besides checking creatinine/GFR/BUN levels on a blood test).

Yes, my dad's red blood count pretty much constantly falls. We go for blood transfusions every 1-3 weeks, and platelet transfusions every 1-2 weeks. His gums bleed so much I believe that has to be the main cause of the rapid decrease in HGB/RBC (it seems he goes to the bathroom to spit blood out of his mouth every 10 minutes or so).

Has your doctor suggested any other treatment such as vidaza? Our doctor says my dad's symptoms suggest that vidaza should be most likely to have a positive impact, although it did not have any effect after 4 cycles when we tried it. If your AA/MDS is similar, maybe vidaza is a possibility for you to try?
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Son of 70 yo; diagnosed MDS 11/2008, treated with vidaza; diagnosed AA 3/2009, treated with ATG, cyclosporine and exjade; rediagnosed MDS 7/2009, restarted with 2 cycles of vidaza, but currently halted treatment of both vidaza and exjade due to severe effects from the drugs.
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