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Old Sat May 14, 2011, 09:13 AM
Sally C Sally C is offline
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Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 467
Promacta

Hi Birgitta-A,
I was aware that NIH had Promacta in trial before the one my husband is in. They also have been testing on AA patients. We were told that because of the success of Promacta on AA patients they are expanding the trial to low to Int. 2 risk MDS patients. Also during our visit last week we were told the risk for reticulin fibrosis is not as big a concern as previously thought. So my reading into what information we have received regarding ongoing trials along with the fact that they are further expanding the Promacta trials makes me believe they are having some success as well as less concern for the safety of the drug. At least I hope that's what it means. Don's MDS has some AA characteristics which is why they believe he will respond to the Promacta. As I mentioned before - he is the first MDS patient in this particular clinical trial. The second one is coming in next week. All I can guess is they don't want to release any information with new trials starting. When I was told that NIH couldn't release any Promacta trial information to our oncologist, I wasn't told whether that was due to NIH's rules or GlaxoSmithKline's. Don is at full dosage now and is tolerating the medication very well. Will let you know if and when we see a response. And if you do find any preliminary results I know you will share that with the forum.
Thanks as always for your interest and research.
Have a great day!
Sally
I have just read some past postings from you, Kirby and others regarding concerns about Promacta. I saw that Kirby's dosage, at least at that posting, was 75mg/day. Don's is now 150mg/day. Yikes! I also read Birgitta where you said you thought platelet transfusions were preferable to taking Promacta. One of the concerns regarding Don's platelet transfusions was that he continually had reactions to the platelets, although he hasn't reacted to the last few. Our oncologist said it was just a matter of time before he had a reaction that would result in anaphylactic shock. As you know, with this disease you have to pick your poison. Hopefully we have made the right decision. I do trust the doctors at NIH. They certainly don't want bad results or to do harm to their patients. But they don't have a crystal ball either. All we can do is just pray and hope for the best. I do appreciate everyone's candor regarding this drug and would appreciate any input - good or bad - that anyone has.

Last edited by Sally C : Sat May 14, 2011 at 09:56 AM. Reason: Added information
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