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Old Sat Aug 11, 2012, 10:50 AM
Al's Wife Al's Wife is offline
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Join Date: Jun 2010
Location: Jackson, Georgia USA
Posts: 205
Patti,

There's a part of me that wants to say rejoice in this news and be thankful. But the other part says, I'd like a second opinion, please. Since you and Dean live fairly close to Tampa maybe you could make an appointment to see one of their MDS doctors.
Like Birgitta I always thought if the Dacogen was improving the numbers you stayed on the treatment.
I might even be questioning whether the diagnosis was wrong or something. In any event, for peace of mind, I would want another opinion. But that's just me.
I mean, look at us, we've been to four different hospitals and if this trial at Moffitt doesn't work and if Moffitt has no other trial to offer, we'll find another one that hopefully will.
Before deciding on Moffitt for this latest trial, I sent emails to doctors at Cleveland Clinic and Sloan Kettering as well as to the doctor we saw at M. D. Anderson last year. I received responses from all of them who indicated they would be willing to evaluate Al.
I'm constantly checking for new trials.
Try to enjoy each and every day with Dean. I know you are concerned but don't miss out on this time with him while things are going good. Just pray about it and hopefully you will find some peace of mind.
Lots and lots of hugs,
__________________
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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