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  #1  
Old Sat Feb 19, 2011, 01:18 PM
Von Hamrick Von Hamrick is offline
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Join Date: Feb 2011
Location: Winston-Salem, NC
Posts: 5
MDS in Winston-Salem, NC

Looking for anyone with MDS living in Winston-Salem or recieving treatment for MDS in Winston-Salem.
Best Regards,
Von Hamrick
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  #2  
Old Sat Feb 19, 2011, 09:14 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Hey Von Hamrick!

My transplant doc is at Wake Forest/Baptist, though I'm further down the road, in rural Montgomery County. I'm not pursuing transplant at the moment, so I'm actually being treated at the National Institutes of Health up in Maryland and by my local doc in Stanly County.

Were you diagnosed recently, or have you been living with MDS for a while?

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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  #3  
Old Sun Feb 20, 2011, 09:02 AM
Von Hamrick Von Hamrick is offline
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Join Date: Feb 2011
Location: Winston-Salem, NC
Posts: 5
Hi Greg,
My low platelet count was detected in june, 2009 in a routine physcial. I have never felt bad. I am 75 years old and have completed 3 series treatments of vidaza at Wake Forest Baptist Medical Center. Will start a 4th in about a week. I have been taking antibiotics since September, 2009.

I have had 3 biopsys and according to the doctor, none of them were definitive. I have 0 blasts and no deletions. In at least one cell linage, I have lost a Y on the chromosome. The report reads, "the bone marrow shows persistent hypercellularity for the age of the patient without significant dysplasia in all cell lineages." The doctor says that means my bone marrow is too full because all the cells are not maturing properly.

Before my first treatment, my platelet count got down to 24,000. With three treatments, it bounces around from the 30,000's to the 50,000's. I have had no transfussions and have no problems with the treatments.
Regards,
Von
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  #4  
Old Sat Sep 24, 2011, 09:01 PM
Barb M Barb M is offline
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Join Date: May 2011
Location: Hendersonville, NC
Posts: 25
Von
Wanted to let you know that we are starting a MDS support group here in Hendersonville, NC. First session will be on Saturday October 8th at 1:00 p.m. at the Hendersonville Public Library. More details are under the news and events section.
I have been to Wake Forest for a second opinion, am in the wait and see mode right now.
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