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Hi Linda and Al,
How very rewarding to me that my posts have helped you and Al find a clinical trial.
As of today Don's platelets were 105,000. They are probably going to drop the Promacta again this Thurs. to 75 mg. - half the dosage of what he has been taking since March, 2011. I think it is feasible that he may actually be able to come off it completely as they seem to be holding above 100,000. As you know they are trying to get his platelets below 100,000 out of concern for clots.
Linda, Don's platelets got down as low as 4,000 at one point and stayed in the teens for a couple of years. He never had a bleeding episode due to platelets. He had what was eventually diagnosed as ulcerative colitis that caused rectal bleeding but that hasn't been affected one way or the other with his platelets in the 100,000's. Also our Dr. told us she has patients that stay at the 1,000 level and do fine. The body is an amazing machine that can adjust to much less than what is "normal".
You will love the people at NIH. They are so accessible and efficient - and NIH is on the cutting edge of hematology.
Thank you again for your kind words. It has made my day that my posts may have been of help to you.
God Bless and please keep us posted.
Sally
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