Can we be a bone marrow donor?

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Sphynx
Sphynx Member Posts: 611
edited June 2014 in Life After Breast Cancer

I put a call in to my oncologist to ask if I could be a bone marrow donor for my cousin but I'm hoping someone out here will know the answer soon.  Do we disqualify if we've had cancer?  I know we cannot donate blood for 5 years but it has been 7 years for me.

My cousin had ovarian cancer followed by breast cancer over 10 years later.  She now has leukemia and needs to have a bone marrow transplant.  I'm not sure if the leukemia is from chemo.

Does genetic testing give anything useful to see if I am a match?  Has anyone been a donor?  She does not live in the same State as myself.  Can't testing be done in my State to see if I am a match?

Thanks in advance if anyone has some answers.

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  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited June 2010

    I don't know if we can be a marrow donor now but in 1997 before my dx I put my name in the bone marrow donor registry during a marrow drive for a friend, I haven't been called.

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  • Sphynx
    Sphynx Member Posts: 611
    edited June 2010

    Thanks for the reply, lvtwoqlt.  Did you get tested at that time? 

    My oncologist called me back and asked me to contact the National Marrow donor program at http://www.marrow.org/

    This is what I found:  The criteria is up to my Cousin's transplant doctor and I have a call in to her sister to see what I can do.  For the general registry, you can only be a donor if your cancer was in-situ.  That would disqualify me since mine was invasive.  

    There is a genetic test that is called HLA needs to match. It is a very specific genetic test and not included in the BRCA test my cousin and I had. It is possible I do not have to travel out of state to see if I'm a HLA match if her doctor will allow me to be a possible donor.

    Normally, cousins are not good matches and they look for siblings first.   I'm hoping her sister is getting tested and someone will be a match.  I'll keep you posted!

    (Edited to change HRA to HLA)

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  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited June 2010

    Yes I was tested at that time and I am listed on the marrow.org registry. It was a simple blood test. I get mailings every year from them as a reminder that I signed up for the registry and if I have any changes in my status or want my name removed from the registry, I can update it on the website or mail in a card. It was good to hear that if your cancer was insitu you can still donate, mine was and my treatment was surgery alone.

    Sheila

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  • Sphynx
    Sphynx Member Posts: 611
    edited June 2010

    Hi Shiela and others interested in this topic,

         I talked to my Cousin's transplant team nurse and they have never had a donor who wasn't beyond 10 years remission for cancer.  They did not think I was a good candidate and her only sister had cancer recently.  I don't know how I forgot that.  My other cousins are getting tested and hopefully she will find a donor. 

        She is in the hospital in Boston and in isolation due to her counts.  All I can do is send a card.  I'm feeling pretty useless to help her at this point.

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  • iodine
    iodine Member Posts: 4,289
    edited June 2010

    It is unfortunate you cannot be a donor, but I believe that with this post you have brought a great deal of attention and likely some family conversations about donors, of bone marrow and body organs.

    This may be the greatest gift you could offer your cousin and a lot of others waiting for donors.  I tip my hat to you and feel you have contribuited a special gift.

    Best,

    Dotti

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  • Sphynx
    Sphynx Member Posts: 611
    edited June 2010

    Dotti,

       What a kind thing to say.  Thank you.

       Talk about family conversations - my DH had a strong reaction about me trying to be a donor.  His first reaction was "I forbid you"!  Yeah right - he knows better than to say "forbid" to me.  His point was that my counts were too low for about 3 years after chemo and I am not the healthiest person - although I think I am!   Also, we are fans of "House" and they have had episodes about how painful it is and dangerous for the donor.  That is not true according to the donor website.  They knock you out, take a little marrow from the hip and voila - you saved a life. Maybe that is not exactly true but it must be somewhere inbetween House and the website.

      

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  • yellowrose
    yellowrose Member Posts: 886
    edited July 2010

    I have a friend who needed a bone marrow donor last month.  I spoke to the National Bone Marrow registry and was told that anyone who has had invasive breast cancer is automatically deferred.  Stage 0 - could be possibly accepted. 

    She said that basically any cancer other than a stage 0 cancer or simple skin cancer is deferred FOR LIFE,  If you go to their website here http://www.psbc.org/programs/marrow_guidelines.htm you will see that we are no longer acceptable donor candidates.

     EDITED TO ADD:  If you have ever signed up prior to your BC diagnosis, it is important to contact the registry and have your name removed.  It can cost a life-saving delay for a patient if they spend time contacting you for a possible match, only to find you are no longer eligible. 

     Only about 10% of people who sign up for the registry will actually match with someone so it's vital that the registry has current information regarding donor health deferments. 

      You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived though this horror. I can take the next thing that comes along.' Eleanor Roosevelt

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  • Sphynx
    Sphynx Member Posts: 611
    edited June 2010

    Hello Yellowrose.  Did your friend find a donor? 

    The registry people did say that the final say is up to the transplant team.  The transplant team sounded like I was still a candidate until we talked about other health issues and the fact that I'm only 7 years out.

    It is true that you cannot be on the registry if you did not have in-situ cancer (DCIS or stage 0).

    So, can we still be organ donors after death?  If I still have some useful parts, I'd like them to go to someone who can use them!

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  • yellowrose
    yellowrose Member Posts: 886
    edited July 2010

    I asked about organ donation at the Texas office for national organ registry and was told that  YES I could still be an organ donor after death.  Some organs MIGHT be precluded but skin, corneas, etc.  are still good to go.  I was glad to hear that I didn't have to take myself off that registry, though I did need to update some information.

    My friend is still looking.  None of his family matched.  We registered about 500 new people and it takes about 6 weeks for the registry to process new folks' genetic markers so if anyone matches him or anyone else on the list, they should be hearing shortly.

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  • Sphynx
    Sphynx Member Posts: 611
    edited September 2010

    I thought you may want an update on my cousin.  She found two perfect donor matches from the International Registry!  The donors are out of the country.  She has a very bumpy road ahead and will receive a stem cell transplant as soon as the donor's marrow arrives through mail.  He did not have to travel to her. 

    It made me hopeful that the registry found matches.  

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  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited September 2010

    Glad your cousin was able to find a match outside the family.

    Sheila 

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