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Old Mon Dec 27, 2010, 08:59 AM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Talk to the folks at NIH

Hey Dan!

Welcome to the forum! You have clearly read up on MDS and there's no reason I can see that you shouldn't be asking the question you are asking.

My situation is somewhat similar to yours in that I'm younger (54) and have INT-1 MDS with trisomy 8. But my problem is more in the red cell line than platelets (though my platelets are no great shakes, either.)

I'm currently enrolled in a clinical trial of the drug Campath, which is an alternative immunosuppressant therapy (to the usual ATG and cyclosporin routine). The trial I am in is at the National Institutes of Health in Maryland.

I did a long post about the theory underlying immunosuppression and MDS here. And I've been describing my experiences in the trial here.

The trial I am enrolled in is this one. They are still recruiting, and NIH has been the leader in trying immunosuppression for MDS. But, seeing you're out west, it might be worth checking out this new clinical trial at MD Anderson in Houston.

It's too early for me to have a success story with Campath yet, but at least one other member of the forum has experience with the NIH trial and has had good success.

If you are really interested in exploring immunosuppression, I'd encourage you to call on the NIH trial so you can talk with Dr. Matthew Olnes about your situation. He's a real straight shooter and the conversation will definitely be enlightening.

I'd be happy to email or talk with you offline about my experience -- or to have a conversation right here so everyone can participate.

Let me end by saying that my local doc initially wanted to treat my INT-1 MDS with Vidaza, but the data on its effectiveness among lower risk patients made me very skeptical, which is why I decided to go the immunosuppression route instead.

One final question: Do you know if you are HLA-DR15 positive? That's a good predictor for response to immunosuppression. But you may not have been HLA-typed if you're not considering transplant yet.

Take care, and good luck!

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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