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Old Fri Sep 23, 2011, 04:52 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Pvinod,

I encourage you to watch a few of the AA transplant videos on the AAMDSIF website, if you haven't already. Here is a link to a recent one:

https://live.blueskybroadcast.com/bs...27&MA_ID=15722

Here is a link to other ones:
https://live.blueskybroadcast.com/bs...T=944&CAT=1031

In the first video, there is a slide where a comparison is made between a second round of IST and a MUD BMT. There is also a chart that shows that for pediatric patients, a second round of IST is suggested only if there is no transplant match.

Transplants do carry the risk of death or serious side effects from GVHD. However, IST also has a risk of not working and sometimes death. Also, at some point, your daughter might stop responding to platelet transfusions. She may get less and less of a bump in her counts and then her platelets may not increase at all after a transfusion. You need to do something before this happens! Did you discuss NPlate with your doctor?

As an aside, has the time between her RBC transfusions increased from what it was?

Again, I strongly encourage you to meet with a transplant doctor quickly to fully understand your options and risks.

Don't wait until December if she is a non-responder to the first round of ATG. Something needs to be done now to stop the disease from progressing.
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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

Last edited by Hopeful : Sat Sep 24, 2011 at 01:20 AM.
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