[Sally C]

Hello all,
Just wanted to update you on how Don's doing in the Promacta clinical trial he started in March, 2011 at the National Institutes of Health in Bethesda, Md.
First of all he has tolerated Promacta without any problems whatsoever.
He has been transfusion independent since spring of 2011 except for one transfusion of red cells in Oct. He had been transfusion dependent since 1/09 with approx. 60 transfusions in '09 and the same in '10 - for both red cells and especially platelets.
He has gone from RBC's in the 7 and 8's to 11.2 this week. (1/25/12). His platelets had been totally refractory since '09 - low point being 4,000 but for the most part staying in the teens or lower. They were 61,000 this week as well.
They did a BMB this month and I will paste the summary from our doctor we received yesterday. I might add that he received Campath in April, 2009 with a minor partial response and received Cyclosporine from late fall, 2010 until starting the Promacta in March, 2011 with no response.

"Everything looked good. Overall, his bone marrow was 40-50% cellular which is a little more than last July. There was no increase in blasts and no change in overall fibrosis (still 2 out of 4). His chromosome analysis still shows the deletion 20q in 90% of the cells analyzed. There were no other chromosomal abnormalities.
...His bone marrow has more cells than it did in July which makes sense since his blood counts have improved. Overall, it isn't much different than the July marrow. I think it was 30-40% cellular at that time if I'm not mistaken. Someone Mr. Calvert's age should have about 35-40% cellularity, but with MDS that can vary.
The main thing is that the cells we saw looked good as opposed to there being blast cells (which is what we do not want to see!)."

They only have 4 people in the Promacta/MDS trial now so I'm sure they are more than open for new patients.
I would appreciate any input from the Marrowforums experts re: the increase in cellularity and the fact that the deletion 20 was in 90% of the cells analyzed. Do either have any meaning in the overall picture?
If anyone has any questions please feel free to ask.
Thanks so much and God Bless.
Sally