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Old Tue Aug 23, 2011, 07:47 PM
Al's Wife Al's Wife is offline
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Join Date: Jun 2010
Location: Jackson, Georgia USA
Posts: 205
Starting Sapacitabine tomorrow

Well, we are starting Sapacitabine at Emory tomorrow. Since this is a Phase II, things go quite a bit differently than the Phase I Arry-614, my husband was in earlier this year. The doctor said that he would have the up and down cycle (my terminology) like he did when he was on Vidaza, where his numbers would go down and he would be very tired, but then, hopefully, go back up again.
Today his platelets were at 29, which I rejoiced in, since they were at 22 last week. I never thought I'd be happy to see 29, but with this disease, we'll take whatever we can get! The RBC's are at 10.6 and the WBC's are still in normal range.
We are just so thankful that we are able to do this here near home and did not have to do the trial in Houston.
Eventually, if this doesn't work, then we may not have any choice; but for right now, this is where we want to be.
I'm not sure why MDAA did not tell us that this trial was being offered here at Emory near where we live. But they have been very nice in forwarding the reports so that my husband did not have to repeat the bone marrow and other tests.
So I'm praying hard and hoping that this clinical trial will help my husband. He turned 74 today and to look at him, you wouldn't know anything was wrong. He's very active and loves to work in his shop on his old cars, so it's going to be hard when he's tired and feeling bad to watch him (at least that is how it was when he was on the Vidaza for 6 months) not being able to do the things he loves.
I just admire all of you with this disease and pray for a cure soon.
Thanks to all for your kind words 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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