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Old Sat Jun 9, 2018, 12:03 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi ASQ,

I hope your wife is fighting off the fungal infection. That is one of the biggest risks when you are immune suppressed.

I am a hypo-MDS/AA patient. My doctors's spent a lot of time trying to figure out which one in the beginning. Now we see it as just a label, as some types of hypo-MDS are responsive to ATG. The MDS portion of the disease may be just that more blood progenitor cells are destroyed during the immune attack, leading to dysplasia.

When I had my treatment in the beginning, my doctors said it may extend my life 10 months. They also thought that my chance of responding was less than 20%. Now I am almost 10 YEARS out from the ATG. I am cyclosporine dependent (low dose) but that is a small price to pay for life.

Hopefully, your wife will have similar luck and you won't have to go the transplant route.

Was your wife tested for PNH and did she have a small PNH clone? That is one of the positive signs for response to IST regardless of whether it is AA or MDS.

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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