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Old Sat Dec 29, 2018, 08:58 AM
Sally C Sally C is offline
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Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 467
Hi Dishavirk,
It is wonderful that Promacta has helped you - and so quickly.
I went back and read some of the posts I made along with others who posted since I started this thread in 2011. So much I don't remember!!! I can give you a brief update but you can get a more accurate account by the posts I made during that time - which you may already have done.
He finished his Promacta taper in July, 2012 and has been in remission ever since - no transfusions since 2011 after over 125 blood/platelet transfusions. With his last blood draw (12/18) his counts did start slipping - platelets were 74,000. We are hoping that the slippage is due to some fairly serious health issues in Oct., 2018 - unrelated to his MDS. He will be checked again on Jan. 8.
I don't recall his having any reaction to taking Promacta or tapering from it.
As I stated in my previous posts, they waited to taper him until his platelets reached 100,000. Should they drop to 50,000, he would start Promacta again with our local oncologist. While it's not approved for MDS outside a clinical trial, he does have some overlapping AA that would allow him to be given the Promacta.
Please let me know if I can give you any further information and please keep us posted.
All the best,
Sally
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