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Old Sun Aug 27, 2017, 01:25 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Joan,

I am a big fan of UC Davis I like their team approach for difficult cases.

If the PET scans are indicative of your marrow actively regenerating, I would ask your doctor whether you should taper all the way off cyclosporine. What is your taper schedule? Be very wary of signs of a relapse!

I think that the marrow remains in a very fragile state for some time, depending on the number/state of your remaining stem cells. There is still a colony of rogue T-cells that weren't killed off with the ATG, even if you respond quickly. (ATG is not a cure.) Cyclosporine helps your marrow keep these cells in check until your marrow is strong enough to fight the fight on its own.

How is your cellularity?
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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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