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MDS Myelodysplastic syndromes

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  #1  
Old Fri Jul 8, 2011, 07:46 PM
larryp larryp is offline
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Location: Sulphur Springs, TX
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New Member

Hi everyone. I am a new member as of today.

I was diagnosed with MDS in December 2009. I had a series of Vidaza treatments over a 5 month period and then in June of 2010 had a marrow transplant. I seem to be getting stronger as time goes by but run out of gas easily.

I filed a claim with the VA last week because of my exposure to Agent Orange in 1968 during my tour of duty if Vietnam, but based on what I have been reading, I don't expect a favorable response from the VA.

Thanks for all you do and the information you supply.

I'm just learning how this forum works..........so bear with me.
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  #2  
Old Fri Jul 8, 2011, 08:39 PM
Greg H Greg H is offline
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Welcome!

Hey Larry!

Welcome! This is a great place to compare notes with other folks who have MDS and other bone marrow failure diseases.

I'm glad to hear that your transplant has gone well. Where did you have it?

Folks post updates on this forum occasionally about the VA and MDS. I gather that you are quite likely to be turned down initially and will have to fight through the appeals process to get any satisfaction. It's probably a tough slog -- but might be worth it if you can connect with some of the other folks fighting and have the energy to take on the great VA bureaucracy.

Thanks for your service. I'm sad to hear it got you exposed to Agent Orange.

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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Old Fri Jul 8, 2011, 08:56 PM
Neil Cuadra Neil Cuadra is offline
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Larry,

In case you didn't already spot it, be sure to see the MDS, Agent Orange and the VA discussion thread.
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  #4  
Old Sat Jul 9, 2011, 11:17 AM
larryp larryp is offline
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Thanks for your response.

Greg, I had my transplant in Dallas, Texas at UT Southwestern Medical. I would recommend it to anyone in this area that needs any kind of medical attention of any kind.
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