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:
- 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.
- 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.
- 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.