Hello my friends,
I just wanted to update you on Don's progress since stopping Promacta on July 5. He stopped after a slow taper didn't bring his platelets below 100,000 (what a
problem
) out of concern for clots.
Two weeks (7/17) after stopping Promacta his platelets dropped from 121,000 to 88,000; HGB dropped from 12.6 to12.4; WBC dropped from 6.8 to 3.61; neutrophils dropped from 6.0 to 2.49.
On his 7/27 CBC his platelets were still a respectable 83,000; his HGB was 12.9; his WBC was 6.2; and neutrophils were 5.1. He will stay off Promacta as long as his platelets stay above 50,000.
He started Promacta in May of 2011 but didn't see much movement until the fall. While on Promacta his reds reached the normal range for the first time since 11/08. He received Campath in 4/09 and Cyclosporine in 2010 but remained very transfusion dependent until Promacta - especially for platelets.
We also received a short note regarding his bone marrow biopsy - 'the cells seen are essentially unchanged and most importantly there is no increase in blasts, signifying no progression'.
I hope this gives hope to all who may be discouraged. There was a time that Don was on our doctor's "death list". We were told this once she took him off. There was a time when his neutrophils reached 0.0.
There are so many treatments out there for MDS and they are coming up with new ones all the time. Everyone's MDS is different and responses vary. Just keep the faith that the right one is out there and you'll eventually find one that will work for you.
If anyone would like to contact me regarding Promacta please feel free to do so -
shcalvert3@aol.com.
God Bless,
Sally