Home         Forums  

Go Back   Marrowforums > Treatments > Transplants
Register FAQ Search Today's Posts Mark Forums Read

Transplants Bone marrow and stem cell transplantation

Reply
 
Thread Tools Search this Thread
  #1  
Old Mon Jul 30, 2012, 03:57 AM
gregdeklerk gregdeklerk is offline
Member
 
Join Date: Jul 2012
Location: Cape Town, South Africa
Posts: 9
Bone marrow match donors

What are the current chances of finding an unrelated matched donor world wide?
Reply With Quote
  #2  
Old Mon Jul 30, 2012, 06:03 AM
SLB SLB is offline
Member
 
Join Date: Mar 2012
Location: Brisbane, Queensland, Australia
Posts: 130
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?
Reply With Quote
  #3  
Old Mon Jul 30, 2012, 06:18 AM
gregdeklerk gregdeklerk is offline
Member
 
Join Date: Jul 2012
Location: Cape Town, South Africa
Posts: 9
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?
Reply With Quote
  #4  
Old Mon Jul 30, 2012, 10:06 AM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 590
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.
__________________
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
Reply With Quote
  #5  
Old Mon Jul 30, 2012, 01:04 PM
donna j. donna j. is offline
Member
 
Join Date: Sep 2011
Location: long island, new york
Posts: 110
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.
__________________
f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
Reply With Quote
  #6  
Old Mon Jul 30, 2012, 01:38 PM
evansmom evansmom is offline
Member
 
Join Date: Nov 2007
Location: Ontario, Canada
Posts: 203
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
__________________
Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
Reply With Quote
  #7  
Old Mon Jul 30, 2012, 09:56 PM
SLB SLB is offline
Member
 
Join Date: Mar 2012
Location: Brisbane, Queensland, Australia
Posts: 130
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
Reply With Quote
  #8  
Old Tue Jul 31, 2012, 08:57 AM
squirrellypoo squirrellypoo is offline
Member
 
Join Date: Nov 2008
Location: London, UK
Posts: 458
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.
__________________
36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
Reply With Quote
  #9  
Old Tue Jul 31, 2012, 09:42 AM
donna j. donna j. is offline
Member
 
Join Date: Sep 2011
Location: long island, new york
Posts: 110
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
__________________
f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
Reply With Quote
  #10  
Old Sun Jan 19, 2014, 10:48 PM
eddy eddy is offline
Member
 
Join Date: Aug 2013
Posts: 4
donna j

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
Reply With Quote
  #11  
Old Sun Jan 19, 2014, 10:57 PM
eddy eddy is offline
Member
 
Join Date: Aug 2013
Posts: 4
Quote:
Originally Posted by eddy View Post
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.
Reply With Quote
  #12  
Old Mon Jan 20, 2014, 10:09 AM
donna j. donna j. is offline
Member
 
Join Date: Sep 2011
Location: long island, new york
Posts: 110
North Shore transplant

Hi Eddy
I will be happy to discuss with you my experience. Perhaps we can speak off line.
Donna
__________________
f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
Reply With Quote
  #13  
Old Mon Jan 20, 2014, 11:21 AM
eddy eddy is offline
Member
 
Join Date: Aug 2013
Posts: 4
re: north shore

Quote:
Originally Posted by donna j. View Post
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.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Cryo-Preserved Bone Marrow Bank? Anthony Transplants 6 Sat Nov 15, 2014 12:02 PM
Confused with Bone marrow report teo MDS 168 Mon May 5, 2014 09:20 AM
Hypoplastic Bone Marrow No Problem? Shazza Tell Your Story 3 Thu Feb 20, 2014 04:20 AM
Bone Marrow Match Results from Los Angeles Hope, Steps & A Cure Marrowforums Los Angeles 0 Sat Sep 28, 2013 05:17 PM


All times are GMT -4. The time now is 10:40 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org