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MDS Myelodysplastic syndromes

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Old Wed Feb 25, 2015, 11:31 AM
NancyKing50 NancyKing50 is offline
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Join Date: Feb 2015
Location: Philadelphia
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Resources in Philadelphia?

We live outside of Philadelphia, and my husband was recently diagnosed with MDS. Does anyone have any recommendations for who to see here for a second opinion? At Jefferson? Penn? Need some names....thanks in advance.
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Old Sat Feb 28, 2015, 09:47 PM
Tominftl Tominftl is offline
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Location: Fort Lauderdale, FL
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Vice on HBO

Dr. Carl June from children's hospital of Philadelphia seems to have found a cure. 39 children had t-cell therapy with genetically engineered HIV virus. This has shown some remarkable results with a 90% CURE. Two bone marrow tests 4 weeks later and most were cancer free. He said this treatment should be FDA approved and available sometime in 2016. I just saw this on HBO. I so hope it is for real.
Since you are in Philadelphia you could call and ask. They are still doing clinical trials.
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Tom divorced and retired. Diagnosed in 2013. 65 year old male, on dacogen IV every month until Doctors decide to do the transplant. I have donors, 10/10, unrelated.
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Old Fri Mar 20, 2015, 12:59 PM
KathyM KathyM is offline
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Join Date: Mar 2013
Location: Philadelphia, PA
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Philadelphia

I hope I'm not too late to reply to this thread.

My husband was treated at Jeannes-Temple in Phila in their bone marrow transplant program. He received OUTSTANDING care from every doctor, nurse, nurse practionier, physician assistant, transplant coordinator, I could go on and on...you name it - they were ALL excellent.

My husband is 2 years out from his transplant now and his original dr is no longer there - however, he has been seen by all the doctors there at one time or another- so any one you choose will be good. Take a look at their website.
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Kathy, wife of Dennis (58 yrs old) diagnosed October 2012 w/MDS; bone marrow biopsy confirmed significant fibrosis;blast cells of 5%-10% of total cells, high risk refractory anemia w/ excess blasts (RAEB1); 3 cytogenetic markers; +1, -7, and +21
http://www.caringbridge.org/visit/dennismolyneaux
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