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Thread: How to find an unrelated stem cell / bone marrow donor

  1. #1
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    How to find an unrelated stem cell / bone marrow donor

    Hi,
    My wife has high risk Acute Lymphoblastic Luekemia and is in need of a stem cell / bone marrow transplant. Her siblings were not a sufficient match unfortunately. She is of Japanese decent and a search of donor registries worldwide has identified only 2potential donors in Japan. Of course we are very hopeful one of these candidates will be able to donate however from our research we understand that there is quite high likelihood that they will end up being unable to for various reasons. In this case would very much appreciate suggestions on other things we could do that may help find a donor if we are desperate ?

    Thanks for any suggestions or advice.

  2. #2
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    Hi again, turns out the donor registry has been unable to locate the 2 potential donors in Japan. So we are in desperate need of any suggestions of things we can do now that may help increase the chances of being able to get a life saving transplant.
    Many thanks

  3. #3
    there isn't much that you can do the odds of any random person matching is 1:100,000 it is posible to find a match with cord blood but first you have to find a doctor that does it
    -25 married to josh who is the one with cancer. he is 26
    -diagnosed may 12th 2010
    - extranodal nk/ t-cell lymphoma nasal type
    -after 6 weeks of radation it spreed from stage 2 to stage 4
    -4 rounds of smile chemo therapy later it was in remission
    - dec 19th 2010 allogenic bone marrow transplant
    -january relapse
    - long story short docs are confused as to why he is still alive
    -started a new chemo folotyn (pralatrexate injection)

  4. #4
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    thanks for the info. Our transplant specialist may consider cord blood as an option. I understand that it is more risky than bone marrow or stem cell.
    We are also planning local donor drives.

  5. #5
    good luck i think more people would donate without the fee.
    -25 married to josh who is the one with cancer. he is 26
    -diagnosed may 12th 2010
    - extranodal nk/ t-cell lymphoma nasal type
    -after 6 weeks of radation it spreed from stage 2 to stage 4
    -4 rounds of smile chemo therapy later it was in remission
    - dec 19th 2010 allogenic bone marrow transplant
    -january relapse
    - long story short docs are confused as to why he is still alive
    -started a new chemo folotyn (pralatrexate injection)

  6. #6
    the last time i filled out an application to donate they wanted money this time they didn't so i joined the registry.
    -25 married to josh who is the one with cancer. he is 26
    -diagnosed may 12th 2010
    - extranodal nk/ t-cell lymphoma nasal type
    -after 6 weeks of radation it spreed from stage 2 to stage 4
    -4 rounds of smile chemo therapy later it was in remission
    - dec 19th 2010 allogenic bone marrow transplant
    -january relapse
    - long story short docs are confused as to why he is still alive
    -started a new chemo folotyn (pralatrexate injection)

  7. #7
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    My sister has PH+ALL..sadly, my brother and I were not a match to be her donor. We ahre mixed Asian race. There is a program called AADP.org it promotes Asians to donate. You can try getting a hold of them. I am wishing your wife the best. Hang in there.

  8. #8
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    Thanks for all the replies. My wife's sister is a 5 out of 6 match (DR mismatch) and she is considering going ahead with stem cell transplant from her sister given the prognosis of her Pre B ALL with MLL gene t(4;11) translocation without a transplant. Obviously worried about the risks of partial match transplant. Anyone have any knowledge or experience with partial match transplants ? Our doctor indicated DR mismatch is not ideal, but from some reading since my wife is Japanese perhaps DR mismatch is not so as bad for Japanese ?

  9. #9
    OK, first, I am totally unqualified to answer this so take my info to your doctor.....BUT, I am told (in my A.L.L. case) that the biggest risk in low match donations, less than 8 or 9 out of 10, is Host verses Graft Disease where the donor stem cells (Graft) sees your wife's system (Host) as foreign in her body and attacks it. This is a huge concern during transplants. I will be in for a transplant next month and this is one of their biggest concerns. I am unfamiliar with a 5 out of 6 match since UCSF does the comparison on a scale of 1 through 10. Ask about the differences. The two cancer centers I deal with both use 9 out of 10 where 10 out of 10 is real hard to find, often twins, and 9 out of 10 is a best compromise. 9 out of 10 is not bad, that's what I have, but I have no info on 5 out of 6 matches. Some host verses graft is considered good because that's what a healthy immune system does, but too much can really be a problem.

    Best of luck
    Chuck
    Last edited by Chiocciman; 06-16-2011 at 03:04 AM.
    Chuck was diagnosed with A.L.L. in Nov, 2009 at age 61,
    Remission, July 2010, Diagnosed with MDS in Jan. 2011
    Stem cell transplant in July, 2011, Just passed day 130 post Tplant.
    =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=
    Cancer might rob you of that blissful ignorance that once
    led you to believe that tomorrow stretched forever.
    In exchange you are granted the vision to see each today
    as precious, a gift to be used wisely and richly. (UCSF 11 Long)

  10. #10
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    More Search Options

    pcd:
    I hope you and your family have found something to go forward with at this point. If not, and you are still seeking options, ask your doctor if the Chinese (CMDP) and Korean (KMDP) registries were searched. I suggest this because I know, as a unrelated donor search coordinator, that these registries are not included in the default World Marrow Donor database, but can be queried and donors chosen if asked for specifically. I have had several patients (Chinese, Korean and Japanese) where my only matches were found in Korea or China. It's possible these avenues have already been explored, but it is a thought and it doesn't hurt to ask.

    As for the difference between 5/6 and 9/10, etc:
    The 6 refers to the HLA genes A B and DRB1 (x2 because you get one each from your father and mother), while 10 adds in C and DQB1. Without getting too far into it, when looking at siblings, normally early typing is only done at A/B/DR, because the C and DQ are assumed to match if B and DR (respectively) are matched. That being said, if looking at a 5/6 matched sibling mismatched at DR, typing of DQ would likely reveal a mismatch there too (which would mean an 8/10)

 

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