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Old Fri Aug 29, 2014, 11:56 AM
KMac KMac is offline
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Join Date: Oct 2012
Location: Golden, Colorado
Posts: 103
Dear Alcaf,

Your father is very lucky to have you in his corner. Keep up the good fight! It really sounds like you are doing everything humanly possible to make sure he gets the best treatment available.

And yes, I agree that loved ones advocating for him likely spur his entire treatment team to work more vigorously on making him better.

It would be great if that Eltrombopag comes through**. This can be such a difficult and mysterious disease, but often with surprising positive outcomes, and as such it's very much worth it to try multiple treatments.

**My experience suggests that it probably will, in that your father seems to be close to the model patient for that mode of treatment, since ATG and BMT are not options for him, and his platelets are low. I was personally interested in the Eltrombopag, thinking it might finally boost all my counts into the normal range. But as you can see by my numbers below, I am very fortunate to have responded well to the ATG/CsA. NIH reviewed my case and basically felt we should leave well enough alone. My own hematologist strongly agreed, feeling that Eltrombopag could be dangerous for me since my platelets are already in the normal range. I still have some fatigue, but more or less I have my health and life back. So yes, this is a brutal disease in it's overwhelming symptoms and uncertain outcome, but there is reason to be optimistic!
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Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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