Bone marrow match donors

[gregdeklerk]

What are the current chances of finding an unrelated matched donor world wide?

[SLB]

Sorry I don't know definite statistics but I was told that your chances are better if you are not of mixed race. However in saying that my doctor told me I was fairly 'generic' and I am not mixed race and the best they could find is an 8 out of 10 match. And I have 3 siblings too that don't match!

Good luck... I am sure someone here will know statistics better than I. How long did they say it would take to find out?

[gregdeklerk]

I am waiting for the results of my 2 siblings and I was wondering about the world wide search, so I am still holding thumbs on my siblings.

Will they do a transplant with an 8/10 match?

[DanL]

Greg,

I have not seen any statistics on the percentage of people that match. I am a euro mix - german, french, irish, english, probably something else in there, and they were able to find 3 10/10 matches that were confirmed, and another couple that looked good.

My understanding is that the european background is pretty good because of the number of participants on the registry world-wide.

As for the 8/10 match, Johns Hopkins has been doing some good work with haploidentical matches (5/10) with pretty good success, and there are a number of cord-blood studies that are working with less than perfect matches with good success as well. The main challenge is that GVHD tends to be worse with less than 10/10 matches and becomes one of the key challenges to survival after transplant.

That being said, depending on your status and your response to existing treatment, these may both be good options if necessary.

[donna j.]

Greg,

I had an 8/10 unrelated transplant in January 2012 at North Shore LIJ hospital in NY where they have been doing transplants over 25 yrs. My transplant dr. called it a "perfect match" because she said 8/8 is the required match format now. I have Anglo background, with possible American Indian too and was immediately sent a match from within the US.
(I do have questions as to how in depth a search was done, as I believe they took the first match that was sent them). At the time, I had asked why they did not request additional matches, and the response was "expense" was a major concern. (This baffles me as we had money put aside, and 2 excellent insurance programs). I have been my only advocate, and was very sick and exhausted, otherwise I would have better answers!

I have encountered some GVHD, slight on skin, Acute, and some intestestional, Chronic, which has caused some problems, although not life threatening. My transplant nurse is of the school that a "little GVHD" is a good thing to get. I have been also dealing with the problem of my O type blood not flipping over to the donor's A type blood, Causing me to continue to have low HGB and needing transfusions regularly until the "flip" occurs. Looking backward, I would recommend you
research and review exactly what sort of matches are available and whether the blood type is a match or not.

I am older, just turned 65 and the disease came on suddenly, with no response to Vidaza, other than CBC counts crashing.

Six months after, I am starting to get some energy and life back, it has not been an easy journey, but doable!

Hope this information is helpful.

Donna J.

[evansmom]

Greg,

Where the mismatches are is more important than anything else. My son had a 9/10 match with a completely successful GVH-fre recovery. His mismatch was on the alelle of DQB1. It gets complicated but in general, as a guideline only, DQB1 and DRB1 mismatches may have less serious implications in relation to graft failure or GVH. On the other hand, mismatches on A, B or C may have much more serious implications in relation to graft failure and, more importantly, moderate to severe GVH.

So if you can find out from your doctor where the two mismatches are specifically and discuss the research that is well documented in terms of those two mismatches, you will gain a much clearer picture.

Best wishes,

Nicole

[SLB]

Hi Greg,

i am currently on vidaza every month and was initially told that a SCT would happen within 4-6 months. However when no match was found the doctors said "the risk of undergoing an 8 out of 10 transplant currently outways the risk of staying on the vidaza" the risk with vidaza I believe is that even if it does work then it can stop working at any time and you can crash back to where you started from or worse . Are you currently on any treatment?

Well ... fingers crossed for you that your siblings are a match! I also read somewhere that if they find a match on the registery it is only about a 50% chance that the person will still agree to donate and/or still in a position health wise to donate. but not sure about actual percentage. Honestly until this happened to me I never knew it was so hard to find a match!.

Doctor also said that cordblood transplant wasnt a great option because a. you need at least 2 or more lots depending on your size, and b. Australia just doesnt have the stores that other countries do and transporting it is more difficult for some reason than normal stem cells???

Will have to ask my doctor about which out of the 10 match etc.. promising to hear that others have had less perfect matched transplants and are doing well..

Sharnie

[squirrellypoo]

The ACLT (Afro Caribbean Leukaemia Trust) is a UK bone marrow and blood donation charity and they're the only ones I've seen who've given a concrete breakdown on the ethnicity of donors in the UK's registry. It's not worldwide, but I think it's fairly safe to extrapolate data from this considering that the bulk of the worldwide registry is from the US, UK, and Germany.

"This equates to just 4.79% of potential bone marrow donors on the BBMR which is administered by the National Blood Service are from the BME (Black and Minority Ethnic) communities."

The take home message is - if you're white, you'll probably find a match. If you're not, you probably won't. And the only way we as a society can fix this situation is to get more people of ALL races onto the worldwide registry. There was a fantastic article I read recently of an American Olympic hopeful who couldn't find a match, so he single-handedly started up a Nigerian donor registry.

[donna j.]

Nicolle,

Thank you so much for your knowledge on the matter. That is what is so good about this forum.

I wonder if you could direct me to the research you refer to regarding the HLA mismatches on the alleles dqb1 and drb2, and importance of, particuliarly regarding possible GVHD, after transplant. Unfortunately I am still educating myself after the fact.

Besides my many questions to the forum, I hope I can contribute my personal experiences that might help someone else entering this arena.

thanks,

Donna

[eddy]

My 64 year old husband is having a transplant at northshore also in march 2014.They have found a 9/10 match which I think is good dr was not very good in explaining n I didnt know what to ask.She did bring up also a hapoidentical transplant which again I was not aware of using our son who is only half match walked out of office so confused but dr decided to go with 9/10 match.Was there specifics I should of asked about this match???? Did you get good care at northshre we where impressed with the floor would like to hear your experience? ??? Hope all is well I see you posted this 2012.eddy

[eddy]

Originally Posted by eddy

My 64 year old husband is having a transplant at northshore also in march 2014.They have found a 9/10 match which I think is good dr was not very good in explaining n I didnt know what to ask.She did bring up also a hapoidentical transplant which again I was not aware of using our son who is only half match walked out of office so confused but dr decided to go with 9/10 match.Was there specifics I should of asked about this match???? Did you get good care at northshre we where impressed with the floor would like to hear your experience? ??? Hope all is well I see you posted this 2012.eddy

My husbands dx is cll n mds on vidaza for 6 months doing ok not as good as should be md afaid of acute leukemia.

[donna j.]

Hi Eddy
I will be happy to discuss with you my experience. Perhaps we can speak off line.
Donna

[eddy]

Originally Posted by donna j.

Hi Eddy
I will be happy to discuss with you my experience. Perhaps we can speak off line.
Donna

This my email moolion@aol.com please contact me on there so we can speak further on there or over the phone. Thank you.