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Bone Marrow Failure Causes, treatment approaches, terminology, related diseases

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  #1  
Old Wed Jun 8, 2011, 11:24 AM
lauras lauras is offline
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Bone Marrow Transplant-Doctors on the East Coast

Hi all,

My Dad has had MDS for over 3 years now. We are about to start his injections and we will wait the 6 months or so to see if they work. Prayers, prayers! On the other hand, he is 68 years old and we know, very risky to get a SCT, but if we do decide to do so, does anybody know of any top-nothc doctors on the east coast that would perform the surgery for my Dad? Before I start my research I thought I would check with you guys. We are in Washington, D.C. Right now we travel to NYC to see Dr. Hoffman! Love him! Please let me know! Thanks!

Laura
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Laura, father diagnosed with MDS/MPD in 2006; IV/IG monthly treatments
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Old Wed Jun 8, 2011, 12:14 PM
Marlene Marlene is offline
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Have you checked out Johns Hopkins yet? They have done quite a bit with MDS and it's closer than NY. John was treated for his SAA there and they were great.

Karen had her BMT for MDS at Hopkins.
http://forums.marrowforums.org/showthread.php?t=1434
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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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Old Wed Jun 8, 2011, 12:51 PM
lauras lauras is offline
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Hi Marlene,

We've been to JH, Georgetown, the NIH...we've been all over. My Dad's case isn't as cut and dry as the normal MDS patient...he has borderline MDS/MPD...it's a littl more gray. Dr. Hoffman is world-renowed for treating MDS patients and we've been so pleased with him. Who does your husband see at Hopkins? Thanks for the reply!

Laura
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Laura, father diagnosed with MDS/MPD in 2006; IV/IG monthly treatments
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Old Wed Jun 8, 2011, 12:56 PM
Neil Cuadra Neil Cuadra is offline
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You can look for east-coast treatment centers in the List of treatment centers by state or Treatment Center Map. The centers labeled "CoE" (short for "MDS Center of Excellence") are known to have well-developed MDS treatment programs. Many of the rest do as well.

Stem cell transplants are indeed risky but they don't require surgery. If your Dad had a transplant it would be a "mini-transplant", with less harsh pre-conditioning than a full transplant. The actual transplant is just like a blood transfusion, given through an IV tube, except that the donor's stem cells are what's being infused.
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Old Wed Jun 8, 2011, 01:06 PM
lauras lauras is offline
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Thank you Neil for that information. I will look into that and yes, I knew it wasn't surgery as I was typing fast, but I really appreciate the explanation once again..it's a lot to take in!
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Laura, father diagnosed with MDS/MPD in 2006; IV/IG monthly treatments
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Old Wed Jun 8, 2011, 01:35 PM
mausmish mausmish is offline
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Hi Laura,

I had my bone marrow transplant at Johns Hopkins November 30, 2010 and recommend them highly. My doctor said that doing transplants on older patients isn't so much of an issue anymore. When you call for a consultation, make sure you mention that you want someone with an MDS specialty.

Let me know if you have more questions.

Karen
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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Old Wed Jun 8, 2011, 01:56 PM
Marlene Marlene is offline
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Hi Laura,

John sees Dr. Brodsky. He doesn't treat MDS though. When we were there in 2001, there were people getting transplants for MDS. At that time, they were doing trials with the mini-transplant for MDS. In 2001, getting a bone marrow transplant for anyone over 40 was not advised. But the mini-transplants have changed that.

You may want to find out what protocol Dr. Hoffman would use and see how that compares with Hopkins and Georgetown.

Hopkins continues to be ranked as one of the top hospitals and has a great nursing staff. What's good is that they not only rank high in cancer treatment but in other areas also. This is important if other issues come up during the transplant. John had access to top cardiologist, urologist and pulmonologist when serious complications came up. So keep that in mind when choosing a center.

http://health.usnews.com/best-hospitals/rankings/cancer
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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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