Just wanted to give you an update regarding my husband's participation in the Promacta clinical trial at NIH for platelets.
His platelets are holding in the 20,000's which is a record for him. Also he went 8 weeks without a platelet transfusion which is the longest he has gone since January, 2009. He recently received a platelet transfusion for a colonoscopy - not because they had droppped. They have also had some success with increasing red cells with their AA patients. He has tolerated the medication very well and has had no side effects that we know of. NIH in Bethesda is following him very closely. We were sending them weekly blood work but now that we're in extended study we'll send it once a month. They also will do bone marrow biopsies every 6 months since fibrosis is a concern. There was no increase in fibrosis with his first biopsy since starting the trial. It is our understanding that there are now 4 patients in trial and they are looking at a fifth. Barring any problems he will continue in the trial until the study is over which will be in Dec., 2012. At that point they will help us get into a program that will give financial aid to buy the drug ourselves. As you know, when in clinical trial all health-related expenses for any procedures done in Bethesda are paid for by NIH as well as the Promacta. For anyone interested here is the contact information:
Barbara Weinstein RN BSN CCRP
NHLBI/ Research Nurse Specialist
Building 10 CRC Room 4-5362 10 Center Drive
Bethesda, MD 20892
phone: 301- 594-4180
Here is the link to the trial:
Please feel free to contact me with any questions you may have.