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#1
Mon Apr 13, 2015, 06:18 PM
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Any Haploid Transplant Survivors Out There?
I have high risk treatment related MDS and cannot find a 100% matched donor. My only sibling is a half match. Is there anyone out there who had a haploid match transplant who is willing to share their experiences?
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#2
Tue Apr 14, 2015, 09:26 AM
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Deb,
I don't know of anyone personally but I would suggest asking your transplant doctor if they could give a couple of names/contacts of their patients who have gone through a Haplo that would be willing to speak with you about their experience. They've made some good progress on haplo's in the past few years. Johns Hopkins has experience with them. Being at a hospital who has been doing them successfully is something to really consider.
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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#3
Tue Apr 14, 2015, 01:09 PM
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#4
Wed Apr 15, 2015, 10:26 PM
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Haplo/Cord
I have been told that NIH is doing Haplo/Cord BMT with very good results. This program is under the direction of Dr. Rick Childs. I hope I understand the theory correctly: The Haplo stem cells get you thru until the cord cells can get enough strength to take over. The cord cells are so naive (for lack of better word) that there is less GVDH. If nothing else, it is worth a call to NIH. If you do end up going to NIH, they will assist you with travel cost, and finding a place to stay if you enter a protocol. The care at NIH is always free. My son was treated by Dr Neil Young at NIH. We will Forever be grateful for his knowledge and ability to cut right to the heart of the problem and give clear advice. NIH is truly a blessing! I have heard wonderful things about Dr Childs and his staff.
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#5
Mon Apr 20, 2015, 10:08 PM
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Facebook
There are a few haplo patients on some of the AA Facebook groups. Help Aneesa and Match Nolan are 2 that I know from the top of my head.
__________________
Samantha, wife of Joe age 34; diagnosed vsaa 2012; MUD BMT February 2013
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#6
Mon Apr 20, 2015, 10:34 PM
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Quote:
__________________
Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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#8
Mon Feb 1, 2016, 09:13 AM
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Quote:
__________________
Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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Does anyone have any experience with this?
