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AA Aplastic anemia

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Old Mon Jul 18, 2011, 12:51 AM
Ryan Jay Ryan Jay is offline
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Heart-Breaking Story...Help!

Hi everyone,

Quick question about treatment possibilities for non-US nationals.

Tomorrow, I'm meeting up with the mother of a child with refractory severe AA down here in Mexico who would like to get a second opinion from a U.S. doctor.

I guess the child's doctor is really pushing transplant and she's still a bit circumspect.

Any chance of a clinical trial? I really want to help her in any way possible.

Ryan
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Ryan Jay: 38-yo, dx SAA: 7/25/10, ATG: 8/10/10. CR with counts still rising. HGB: 13, Plt: 137 WBC 5.1 ANC
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Old Mon Jul 18, 2011, 08:42 PM
Bob Macfarlane Bob Macfarlane is offline
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I would suggest that perhaps you should contact Dr. Ruben Mesa at the Mayo Clinic (Arizona) -- mesa.ruben@mayo.edu
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Old Mon Jul 18, 2011, 09:14 PM
Greg H Greg H is offline
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Ryan,

The National Institutes of Health trials enroll folks from all over the world. There's no payment involved from the patient, and they don't deal with insurance companies at all. It's all on their tab.

I'm not sure how their travel compensation works for folks from other countries; they probably won't pay for the trip for screening.

You've met their AA guy, Dr. Scheinberg. Maybe he's got something going. If you don't have enough internet to search the clinicaltrials.gov database, let me know and I'll do some searching for you.

Take Care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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