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Old Mon Aug 9, 2010, 11:13 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Susan,

I would side with the doctor that wants to give it more time. 6 more months doesn't sound unreasonable, if you've had a response. My doctors were nervous around the 6 month mark as well. They tried increasing my cyclosporine dosage to see if I could get a more therepeutic level, but reduced it again after a month because I had trouble tolerating it. Maybe this is something else that you could look at??

I've heard from numerous experts that transplants should only be used as a last resort for people over 40 with AA because of the risk of death or serious lifelong problems with GVHD. I would be wary of centers that are trying to recruit you now, while your counts are stable.

I had consulted with a transplant team early on and was told that my chance of surviving 10+ years with a transplant was only 20%, and I have a perfect sibling match. That is a sobering statistic. Maybe my odds are worse because of the MDS and fibrosis factors, but it wasn't a risk I was willing to take when there were other options.

I had the same concerns as you early on. It seemed like everyone else was getting transplants but my doctors weren't even considering it. I thought that I wasn't getting any younger, so wasn't it better to do it now? However, although you feel healthy now, imagine how you'll feel when your counts are even higher! If you are having a response from IST, go with it. Enjoy life. Know that new research is going on in parallel everyday that may make transplants less riskier in the future, should you really need it someday. As soon as you break through the 40 barrier with your platelets, you'll know that you made the right decision
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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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