Family Testing?

[Deanna16]

How do family members get tested to see if they are a bone marrow match? Do they get the cheek swab too or blood work? Do they do to my doctor or a lab?

Also, all the AA literature I read say to start looking for a match because it can be a long process....but I have MAA....would you start? What's your opinion? I'd rather look and know if someone exist or not rather than wait till I NEED to search. I think it would help me breath better...

[Lisa V]

Deanna, I suspect it varies from hospital to hospital what their policy and procedure is on that. I've heard from a number of patients whose doctors had their siblings tested at diagnosis, but ours didn't seem to want to do it until we pushed him on it. It may have been because it can be a very expensive procedure if you don't have good insurance coverage. No, it's not the standard cheek swab test that the general population does when signing up with the bone marrow donor registry. This is high resolution testing, and would be done by the center where the transplant would take place.

We had to meet with a social worker and jump through all of their hoops (counseling, financial statement, etc.) as if we were actually heading towards transplant, even though that is something we've always wanted to avoid if possible. We just wanted to know if he had a match, because our doctor kept bringing up the topic of BMT, and we didn't see how we could possibly have an informed conversation without knowing that. If he didn't have a match, we didn't even want to consider it at his age. As it turned out, he does, but we still don't want to do it as long as he has good quality of life on IST, and the transplant center agrees.

I suggest you ask your doctor what the procedure would involve for you, and how much it would cost. You may not have to go through all the hassles we did. I would certainly want to know.

As far as an MUD search, I would wait. You won't need to do that at all if it turns out you have a sibling match, and you want to know what kind of a match is available at the time you need it. That can change. Most likely if you don't have a sibling match they would want to try ATG before launching a search for an unrelated donor. That's the usual progression.

[squirrellypoo]

I only have a small experience with the US healthcare system, but my brother still lives in the US, and when we knew I'd urgently need a transplant, he had a blood sample taken ASAP and his US Navy insurance paid for it with no hassles. The results were then forwarded to my doctors here in London and compared against mine. He ended up being only a 5/10 match for me, but the process was only a few weeks. Since time was very important with my bone marrow failure, they did a worldwide search while waiting for my brother's results in case he wasn't a match so they didn't lose any time. I was very lucky to have 5 broad matches, who then went back in for further refined testing, and 3 of those were 9/10 matches.

(There was a BBC news story last night about a little girl needing a donor, and they gave the statistics that if you're black or mixed race, there's a 1 in 100,000 chance of finding a donor on the registry, as opposed to a 1 in 5 chance if you're white! )

[Neil Cuadra]

In my wife's case, back in 1996, they didn't waste a minute. As soon as she was diagnosed they tested her siblings, her mother, her aunts/uncles, our children, and even me! We all got blood tests in the same lab at the hospital where my wife got her CBCs.

In hindsight I think they were overambitious testing so many relatives. Why they tested me I don't know (we're certainly not blood relatives! ) but all of the testing was covered by her insurance.

Despite all that, nobody matched her HLA type and her transplant 2 years later (after ATG failed to produce a lasting response) was from an unrelated donor, one of two found in the Be The Match Registry of the National Marrow Donor Program. They found those two the very first time they searched.

[Deanna16]

Wanted to update that i had an appointment last week with my dr. and after much courage and persistence I went in with ALL my questions and kept asking till i got straight answers. Long story short, she thinks it would be a good idea to start having family members checked and move on from there. so thank you for sharing and your encouragement.

[peter v. c.]

With me. They sent out kits to my sisters ( 3 older sisters ). It was a matter of blood work for them. Two of my sisters live on east coast and one on west coast and i live in Ohio.

[Deanna16]

thank you peter. I guess i hear their plans soon, i have an appointment with the transplant team in two weeks.