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Old Sun Dec 8, 2013, 12:54 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Congratulations on your great blood counts!

I think a complete response/remission means that you have normal, stable counts and are no longer taking drugs (like cyclosporine). So, if you are able to maintain your counts after stopping cyclosporine, that would be considered a complete response/remission. The ATG has long left your system. I think it only lasts a few weeks after administration. The only thing that may still be helping you at this point would be the cyclosporine.

Because ATG is not a cure, you still have a clone of bad T-cells that is very small in size. The hope is that your marrow is healthy enough to keep them in check.

Because you will always have this clone, your doctor will still want to monitor your counts, although the spacing of this will get farther and farther out. They may monitor every other month at first and then, if things remain stable, space this out even more so.

It is hard leaving the crutch of cyclosporine behind, but if your counts have been stable at your current low dose, you may not need it at all.

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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