Be The Match: The National Marrow Donor Program

While I'm busy beating the AML beast back into remission, a national search is going on to find a donor that will be a match for me. My sister is being tested, but there's only a 1 in 4 chance that she'll be a match. If no one is found in the US, the search will go abroad. The National Marrow Donor Program (NMDP) or Be the Match, is the official registry for both stem cells and bone marrow searches and donations. I've had a crash course in transplants in the past few days, so I'll try to summarize what I've learned.

Several people have asked me how they can be tested so that the results can be directed to my transplant team. The first step is to check out the medical guidelines that list certain requirements for becoming a donor. Once these guidelines are met, there are two ways to be tested: Private Testing and registering with the Be The Match Registry.

Private Testing
Transplant matching is most successful if the donor and the patient is the same race and ethnicity. The NMDP is searching for donors for me that are Swedish, English or a combination of both, like me. If people are not in these categories, it would probably be a waste of time and money (it costs $150) to be tested privately. If people are in these categories, and want to be tested specifically for me, they can contact Lab Corp at 800-533-1037, where a Friends and Family account has been set up in my name. Potential donors would need to give their name, address, phone number, my name, and ask for HLA, A, B and DR screening (these are regions of genetic markers).

Lab Corps would send out a mouth swab kit, a requisition for the testing and federal express supplies to ship it all back. Once the testing is complete, they will fax the results to my transplant Case Manager and mail a copy to the person tested. The results will not tell the potential donor if they are a match or not. Someone from my transplant center will need to review the results and notify anyone who might be found to be a match. The testing takes between 7 - 10 days. When someone tests privately for someone else, they are not registered in the the Be The Match Registry for possible matching to someone else.

Be The Match Registry
According to the FAQs about joining the registry:

When you join the Be The Match Registry, you make a commitment to consider donating to any searching patient who matches you. As a volunteer, you are never under any legal obligation to donate and your decision is always respected. However, because a late decision not to donate can be life-threatening to a patient, please think seriously about your commitment before deciding to join our registry.

You can request a copy of your own testing results after you join the Be The Match Registry. However, if you want to be tested only for a specific patient, you will need to have your testing done privately.

When I called the Registry, I was told that 75% of the time donors are matched with patients who need stem cells (from blood) and 25% of the time donors are matched with patients who need bone marrow. A bone marrow donation requires surgery, so it's important to review the website thoroughly before registering. The testing process is the same as with private testing. Once someone joins online, a test kit is sent, which can be sent back free of charge. The Registry will ask for a donation to cover expenses and administrative costs. When a copy of the results come back to the donor, that person can fax them to the Case Manager on my transplant team and she will review the results to see if they are a match for me. My Case Manager is Christina DaCosta and her contact information is 201-996-5877 tel, 201-996-5691 fax.

According to my doctor, Scott Rowley, who is the Director of the Transplant Program at Hackensack, there are 19 million people who are giving, brave and altruistic enough to register for this international program. I find that incredible and amazing. Yes, once the mouth swab test is submitted, it's pretty unlikely that any one person is going to be a match for someone, but still. It's nice to think about 19 million people volunteering for something that could save lives, especially when the world is so full of bad news.

In the meantime, I'm riding the wave of side effects from the chemo. Just when I start feeling better, I'm due for another purple, yes purple, bag of chemo cocktails. By mid next week I should feel better and hopefully be through with treatment. Then my counts will drop, just like before, and I'll cross my fingers that I won't get any infections.

On the bright side, maybe I'll get to see the leaves turn after all. From my 8th floor room in Hotel Hackensack, my window looks out over trees and the western towns of Bergen County. If there are clouds in the late afternoon, I can even catch a sunset. Things are not so bad.

Kathy

CANcer + HEALth = CAN HEAL