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-   -   N-plate for CMML / MDS? (http://forums.marrowforums.org/showthread.php?t=6119)

Yuk Mon Jul 23, 2018 12:03 AM

N-plate for CMML / MDS?
 
Hi all,
My father has very low platelets (20k-38k) caused by his MD-CMML. Our hematologist said that the CMML caused my dad to have ITP and one of the treatments that he suggested N-plate which has shown to really increase platelet counts. I am struggling with the risk associated. On the N-plate website, it has a big fat warning sign that it can progress to AML. I believe that during their clinical trials, there were enough MDS/ CMML patients that had their cancer progress towards AML (increase in blasts) that FDA required them to put the warning. I am truly torn. Did anyone take N-plate or Promacta and have MDS or CMML? Any information to help us weigh on a decision would be greatly appreciated.

Sally C Mon Jul 23, 2018 08:45 AM

Hi Yuk,
My husband took Promacta in a clinical trial at The National Institutes of Health starting in the spring of 2011. He was their first MDS patient to try the drug as Campath and Cyclosporine did nothing to help. Up to that point he had over 125 blood/platelet infusions - his lowest platelet count was 4,000 - they hover around 100,000 now. He stopped taking Promacta in the spring of 2012 and has since been on no other MDS meds. He is starting his 7th year in remission. He tolerated the drug very well. He is now 72 and was 66 when he started taking Promacta.
The side effects they list on all drugs - even the most benign - can scare a person off. But in my husband's case he had no choice.
I have gone into great detail regarding his journey on this site in the past. Maybe some of my older posts will help with your Dad's decision.
All the best,
Sally


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