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Just got back from M. D. Anderson in Houston. It started out with our flight being cancelled on Sunday from Atlanta to Houston and things went south from there. I won't bore you with the details.
The news from the bone marrow done at M. D. Anderson on Monday showed disease progression with blasts now at 10%, platelets 22,000, and the doctor said we have moved to high risk. We are looking at clinical trials at M. D. Anderson (we've signed on for one, but are having second thoughts) as well as NIH. There were some things about M. D. Anderson that we just didn't feel comfortable with. I'm sure that's true at all facilities, but I was hoping for a better feeling when we left, and I just didn't get it.
Trying very hard to stay positive (but I confess that I almost collapsed when they gave us the bone marrow results - don't tell my husband, though). I feel kind of like I did when we first got the diagnosis in May of 2010 with that sick feeling that took weeks to go away.
But I'm sure after I've rested up, and had time to regroup things will look better. I was just hoping it would be years before he progressed this far. Of course he hasn't had to have any transfusions yet, so for that I am so thankful.
I'm just the caregiver. I don't know how all you guys and gals with the disease do it, but I'm proud of all of you, as I am my husband.
Pray that we will make the best decision.
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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