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Old Tue May 22, 2012, 02:22 PM
Al's Wife Al's Wife is offline
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Join Date: Jun 2010
Location: Jackson, Georgia USA
Posts: 205
Going to NIH for evaluation

Well, we've finally heard from NIH and Al is scheduled to go there June 5th for evaluation to see if he qualifies for the Eltrombopag (Promacta) trial. As y'all may remember he was on Watch and Wait after his three previous treatments did not work (Vidaza, and two other clinical trials). His platelets are going down fairly rapidly. They were at 16,000 last week. His red and white cells are still holding near normal, thank goodness. Fortunately, he has no bleeding issues, for which we are truly thankful. I asked the doctor last week when we would need to begin transfusions and he said not until he starts bleeding. He said everyone is different, and hopefully Al is one of the few whose body adjusts to these low platelets. But I confess that it is scary and I worry about him constantly.
Thank all of you, especially Sally, who was instrumental in making us aware of this trial at NIH.
Now we are just praying that (1) he gets in the trial; and (2) it helps his platelets.
We were at the seminar in Atlanta last Saturday and there are a number of things that look very promising that are in research. So, like all of you, we keep hoping and praying for that cure.
God bless all of you and thank you all for your prayers and support.
Linda
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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