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Old Thu Nov 29, 2007, 03:33 PM
Martha M Martha M is offline
Join Date: Sep 2007
Posts: 13
Information about cord blood for transplant

My brother had his RARS transform into RAEBII in September. He is being seen at the Dana Farber in Boston and they have recommend bone marrow transplant. My sister was a full match but we were told she could not donate because of her rheumatoid arthritis. A month has passed as they have searched for an unrelated match. We were just told they have 2 umbilical cord blood matches. We will meet with the transplant specialist next week and I'm wondering if anyone can recommend questions to ask about this type of stem cell transplant source beyond outcome rates etc. Also could someone recommend a good resource book - the medical knowledge needed to even ask informed questions seems to be far beyond me.
Thank you in advance!

brother, Karl, age 49, RARS dx'ed in 05 treated successfully with Procrit, progressed to RAEBII 9/07 currently receiving Dacogen.
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Old Thu Nov 29, 2007, 07:16 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,502
Have you already asked your brother's doctors about the tradeoffs between a cord blood transplant, continuing the treatment with Dacogen, switching to Vidaza or some other drug treatment, or waiting in case a matched unrelated donor can be found for a bone marrow transplant or peripheral blood stem cell transplant (PBSCT)? That's the starting point as you assess the potential risks and benefits. You and your brother will be more confident with the treatment plan if you understand the reasons for their recommendations.

Medical research has identified some of the tradeoffs. Cord blood can be made available very quickly, since there are no arrangements to be made with the donor, but you can't get a second unit of blood from the same donor if you need more cells later. Patients who get cord blood transplants have been found to have graft-vs.-host disease (GVHD) less often or less severe GVHD. However, cord blood cells tend to take longer to engraft, leaving the patient at risk for infection for a longer period. But these are general guidelines. Since each patient is different, only your brother's doctors can tell you which issues are most important in your brother's case.

Three questions you might ask the transplant specialist:
  1. How good a match are the two cord blood units? Research shows that cord blood does not have to match a patient's tissue (HLA) type as closely as donated bone marrow does. For bone marrow and stem cell transplants, the National Marrow Donor Program (NMDP) looks for at least 5 of the 6 primary HLA markers to match. For cord blood, the minimum is 4 of 6, based on transplant outcome research.

  2. Do the cord blood units have enough blood cells for your brother's body size, and if not what will they do about it? Cord blood holds only a limited number of blood-forming cells, and larger patients need more cells. If the cord blood has too few cells, doctors may combine two cord blood units or try to grow the cells before the transplant.

  3. How many cord blood transplants have they performed, over how many years, and on how many MDS patients like your brother? Let them convince you of their expertise and that your brother would be getting the best possible care.
There are also practical questions such as when and exactly where the cord blood transplant would be performed, what the steps of the process would be, what kind of followup care would be needed, and how long recovery would be expected to take.

More information about cord blood transplants can be found at the NMDP's Cord Blood Transplants page.
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Old Fri Nov 30, 2007, 05:03 PM
Martha M Martha M is offline
Join Date: Sep 2007
Posts: 13
Hi Neil:

Thank you so much for your clear and comprehensive information in answering my question. I did go to the website you suggested and it was also very helpful. I plan to print out your questions to take with us to the appointment as well as the others I have been jotting down as I become more familiar with this territory.

People like you and Ruth are so generous with your time and knowledge base and I can tell you have touched the lives of many here.

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