I normally ignore calls from numbers I don't recognize. But the other day I got a call from a number with a Seattle area code. I'm glad I picked up, because it was the coordinator from the bone marrow transplant center there. My doctors here had just requested an urgent search for a stem cell donor for me, and the coordinator, Lisa, was calling with information about the donor search.
Everyone keeps asking me what the donor search process is like. And every time I get a question from someone, I wish I knew more about it. Like why does it take so long? I mean, if there is a database out there with a bunch of donors, and there's a search algorithm, you should just be able to plug in your information and know instantly if there's a match, right? Well kind of, yeah. Lisa told me she could plug in my HLA information to the system and know right away how many matches I had in the registry. I asked her how long the whole process of finding a donor takes. She said if you have 100 matches in the database, it doesn't take as long to find one that meets all the criteria. But if you only have say, 10, it could take a longer. Potential donors have to be contacted, get some kind of physical, and get some additional testing of some sort to determine if they are still eligible (and willing of course). This whole process takes 2 to 6 weeks.
So Lisa said she would call me back in a few minutes with a number. Sure enough, a few minutes later, she had my vital stats. Like magic. The one time in this whole process I have a somewhat instant answer to a question. She said there weren't very many perfect matches in the database, but there were around 500 that matched on 9 out of 10 criteria, which was still acceptable. I asked how many perfect matches there were. Three. I guess since she gave 10 as an example of a low number of matches, 3 is really not very many.
But no matter. I talked to Dr. Bowles, who says there is a good reason to select an imperfect match over a perfect match. If you've never looked into stem cell transplants, you might not have heard of graft vs. host disease (GVHD). If you have someone else's immune system inside of you, there is a decent chance it will start attacking your cells. This can result in all kinds of problems that I won't even go into here. But if the foreign immune system matches too well, there's a chance it won't attack the leukemia cells as well. So there's this idea of having a balance between risk of GVHD issues and risk of the leukemia returning. I don't know how this balance might change with an unrelated donor--the chances of developing GVHD are much lower with a related donor (like a sibling). I mean, if the unrelated donor is more likely to give you GVHD, is their immune system also more likely to attack the leukemia? Regardless, I have a good chance of dealing with terrible skin problems, liver damage, or side effects from immunosuppressants for an indeterminate period of time after transplant.
But, all this is sort of moot right now. Because I'm not in remission. I need to be in remission or at least be under 5 percent leukemia cells to be considered for transplant. Let's just hope this GCLAM stuff works. So that I can look forward to horrible skin problems and liver damage.
Everyone keeps asking me what the donor search process is like. And every time I get a question from someone, I wish I knew more about it. Like why does it take so long? I mean, if there is a database out there with a bunch of donors, and there's a search algorithm, you should just be able to plug in your information and know instantly if there's a match, right? Well kind of, yeah. Lisa told me she could plug in my HLA information to the system and know right away how many matches I had in the registry. I asked her how long the whole process of finding a donor takes. She said if you have 100 matches in the database, it doesn't take as long to find one that meets all the criteria. But if you only have say, 10, it could take a longer. Potential donors have to be contacted, get some kind of physical, and get some additional testing of some sort to determine if they are still eligible (and willing of course). This whole process takes 2 to 6 weeks.
So Lisa said she would call me back in a few minutes with a number. Sure enough, a few minutes later, she had my vital stats. Like magic. The one time in this whole process I have a somewhat instant answer to a question. She said there weren't very many perfect matches in the database, but there were around 500 that matched on 9 out of 10 criteria, which was still acceptable. I asked how many perfect matches there were. Three. I guess since she gave 10 as an example of a low number of matches, 3 is really not very many.
But no matter. I talked to Dr. Bowles, who says there is a good reason to select an imperfect match over a perfect match. If you've never looked into stem cell transplants, you might not have heard of graft vs. host disease (GVHD). If you have someone else's immune system inside of you, there is a decent chance it will start attacking your cells. This can result in all kinds of problems that I won't even go into here. But if the foreign immune system matches too well, there's a chance it won't attack the leukemia cells as well. So there's this idea of having a balance between risk of GVHD issues and risk of the leukemia returning. I don't know how this balance might change with an unrelated donor--the chances of developing GVHD are much lower with a related donor (like a sibling). I mean, if the unrelated donor is more likely to give you GVHD, is their immune system also more likely to attack the leukemia? Regardless, I have a good chance of dealing with terrible skin problems, liver damage, or side effects from immunosuppressants for an indeterminate period of time after transplant.
But, all this is sort of moot right now. Because I'm not in remission. I need to be in remission or at least be under 5 percent leukemia cells to be considered for transplant. Let's just hope this GCLAM stuff works. So that I can look forward to horrible skin problems and liver damage.
5% is pretty close to being less than 5%!
ReplyDeleteThinking of you Sarah. Even though I'm not always vocal (hard to produce my thoughts on this), just know I'm always here... lurking and creeping on you...
ReplyDelete