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Hi Coping,
You have really been through alot haven't you!
Don received Campath at NIH in April of 2009. He remained very transfusion dependent for a couple of years after that - platelets and red cells. He then went on Cyclosporine for about 9 months and that did nothing.
He was the first in a clinical trial for Promacta (Eltrombopag) starting in March 2011 at NIH and that started things rolling to where he is completely transfusion independent now. They stopped the Promacta when his platelets hit 100,000 due to concern for clots and he has remained at that level and is still off the medication. His reds normalized on the Promacta as well and his whites normalized a while after the Campath.
There is a detailed account of part of his journey - especially the Promacta study - under "Clinical trials". It truly has performed a miracle as he probably had over 125 transfusions before taking that.
As a second opinion or for additional input you may want to contact NIH (The National Institutes of Health in Bethesda, Md.). They are tops in their field and cutting edge.
I see you live in Kentucky. My step-daughter lives in Newport - just across from Cincinnati.
Please let me know if I can be of further help and I wish you well.
God Bless,
Sally
Last edited by Sally C : Sat Sep 22, 2012 at 05:43 PM.
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