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Donor Question

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Loobs72 Total Reaction Points: 0
Hi

My husband needs to have a donor stem cell transplant and a matched donor cannot be found on the register.

Has anyone ever had a mismatch donor SCT?

Thanks

Comments

  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 297
    Hi there,

    I'm one of the community champions here so a transplant patient myself and can imagine the concern this gives you and your husband.

    From what I understand there are various ways that transplants can be accomplished now even if a complete match can't be found so whilst I'm sure the search will continue there may be other ways that your husband can. There are also various sources of stem cells including donors (from all around the world) and of course cord blood. I seem to recall that cord blood has more flexibility in its use and can be used where a donor match can't be found.

    Don't give up hope as the search will continue and new donors are being recruited all the time and someone will come along who is a close enough match for the transplant to go ahead. In the meantime you can help by spreading the word through friends, relatives, word of mouth and social media to encourage people to join one of the registers which in the UK are Anthony Nolan for people between 16 and 30 or DKMS for people over 30.

    I hope your husband finds a donor soon, and please keep us updated.

    Best wishes,

    Steve
  • SuePSueP Total Reaction Points: 60
    Hi Loobs,

    I'm also a Community Champion.

    I was in this situation four years ago when a matched donor couldn't be found for me anywhere in Europe or America. I was very upset at the time but it was decided to go for a cord blood transplant instead. As an adult, you need two units of umbilical cord blood donated by new mothers which don't need to be such a perfect match. These were found, unbelievably, in cord banks in Slovakia and Kazakstan. I was warned that I would be in hospital for longer than with a normal SCT and I was, five and a half weeks. However, Graft versus Host disease can be less in this type of transplant and I certainly haven't had any problems beyond some skin irritations. I am still well and with no sign of the original problem - non Hodgkin's lymphoma.

    I gather a new option is a Haplo transplant, which is a half match eg from a parent or child. I started a thread about this recently and Hayley has given a comprehensive reply - it's worth reading.

    Have faith in your husband's transplant team - I'm sure they'll sort something out.

    Best wishes,
    Sue
  • Rachelj01 Total Reaction Points: 64
    Hi Loobs

    I am a community champion and when I was under going treatment a fellow patient was in a similar situation to yourself. As mentioned in Sue's about post they under went a Haplo transplant in 2015 courtesy of their daughter and i'm pleased to report they are doing extremely well. Stay positive and as Sue says have faith in your transplant team. Also remember people are continually joining the register, it only takes one person.

    Rachel X
  • Loobs72 Total Reaction Points: 0
    Hi. A match couldn't be found so they are planning to proceed with a 9/10 match from a donor in Germany. They are waiting for some samples to analyse. In the meantime they are going to look into cord blood donor but they are unsure if there would be enough as my husband is a big bloke.

    It is Multiple Myeloma that my husband has. He is 48.

    I must say I am very scared proceeding with a mismatch donor.
  • TonyHTonyH Total Reaction Points: 18
    I had a transplant from a donor in Germany who was a 9/10 match! I was never told there was a problem finding a match for me and the only message they ever gave was one of "good news we've found you a donor." Therefore it's possible that they have unduly scared you simply by the way they have communicated it to you.

    I did question the 9/10 match and whether it was ok and the message I was told was that even 8/10 would be fine and that in my case they actually preferred only having a 9/10 match as it increased the graft vs leukaemia effect. Maybe they just said that to comfort me! As a result, amongst all the other things to worry about this never concerned us.

    Anyway, the good news is that I had the transplant at the end of October 2015 (when I was 39) and so far so good. I did have some problems with GvHD in the couple of months after transplant that kept me in hospital when I had hoped to be back home but nothing serious and very quickly it calmed to just some minor skin rashes.

    I wish you and your husband all the best and can only hope that my experience has eased your concerns.

    Tony
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 80
    Hi
    I am the nurse specialist in the team at Anthony Nolan. It is safe to have a transplant with a donor that is 9/10, there is a slightly higher chance of GvHD but like Tony has said this can also induce graft versus leukaemia effect which can keep his disease in remission. Its important to remember that there is a risk of GvHD even with a fully matched donor.
    In some transplant centers they are now using haplo identical donors when matches are not found. This is from either from a parent or son or daughter and is only half a match. The results are very promising and the occurrence of GvHD does not increase. So if you consider this, then using a 9/10 is fine.
    Your husbands consultant would not suggest using a donor that would be not be good enough.

    Keep us informed of his progress and please get in touch if you have any further questions.

    BW
    Hayley
  • Loobs72 Total Reaction Points: 0
    Thank you for your replies, it is a relief to read your experience Tony. It is Myeloma my husband has though, not leukaemia. Hopefully it is the same though
  • greg777 Total Reaction Points: 86
    Hi Loobs,
    I have myeloma. I was told that donor transplants in myeloma are rare but are done in specific situations (mine because I was considered young to get myeloma - 36). I would talk it through with your medical team - there are some great myeloma specialists in this country. I think it all boils down to benefit /risk. Myeloma is a comparatively treatable blood cancer but it is still incurable so the thought process for me having a transplant was to hopefully give me as long as possible. My brother was my donor but I know my consultant was on two minds about whether to proceed if I didn't have a matched donor as there are a lot of risks in a donor transplant. Having said that I got pretty bad GvHD so having a fully matched sibling donor is still no guarantee things will go smoothly. A lot is still being learned about the process. So I would encourage talking through with your consultant about why they think this is the best route with myeloma - is it that your partner has a particularly aggressive form of myeloma,as that might also inform the decision.
    Please let me know if you have any questions. I know from experience that donor transplants in myeloma are quite rare.
    All the best,
    Greg
  • Loobs72 Total Reaction Points: 0
    Thanks Greg. I think my hubby may have spoken to you about it via the forum on the Myeloma website if you are the same Greg
  • greg777 Total Reaction Points: 86
    Hi Loobs,
    It probably is - I get around!
    I must say this site has been brilliant for me because of the wealth of experience in donor SCTs. The myeloma site is great for myeloma specific matters but as I said in earlier post, I have found the number of donor SCTs in myeloma to not be very many, so it's sometimes hard to share experiences. So I tend to use both.
    I can't remember what I said to your hubby. Basically I found the donor transplant much harder than the auto, mainly because of GvHD and increased recovery time(it took me about 8 months to start recovering). But I am now 18 months post-transplant and doing well. So it is possible to go through a rough patch and come out the other side.
    Wishing you and your husband all the very best,
    Greg
  • Loobs72 Total Reaction Points: 0
  • boxwell Total Reaction Points: 0
    Hi everyone, my wife was diagnosed with ALL Philadelphia Positive leukaemia in January, she has had her first round of chemo and is now feeling much better as a result and we believe that she is in remission.

    We have a long way to go through this process and we have been informed that a stem cell transplant will be required if we are to have a chance of curing this. Unfortunately there isn't a 10/10 match after all global checks were carried out which as you can imagine, this was very disappointing for us all as we thought that being white / European my wife would find at least 1 match.....

    We have been told though that from the initial search there are numerous potential 9/10 matches,I know that this subject has been covered earlier, but does anyone know if a "good" 9/10 match could work for Philadelphia positive ALL?

    It would also be good to hear some success stories from adults with this type of leukaemia as it is very hard to find other adults out there with this rare form of ALL.

    Regards
  • Rachelj01 Total Reaction Points: 64
    Boxwell

    Hi, I'm very sorry to read about your wives diagnosis however the positive news is she's in remission and I believe you have reason to feel positive about a 9/10 match. I was fortunate to have a 10/10 however during my treatment I became friendly with a lady (white European) who they couldn't find a match and decided to take the risky approach of a 5/10 match (her daughter) I pleased to report two years later that she is well. Whilst we all want the perfect match, the medical teams wouldn't proceed unless they were quietly confident of success.

    Rachel
  • boxwell Total Reaction Points: 0
    Thanks Rachel, to be honest it is the Philadelphia Positive element of her ALL Leukaemia that is concerning me, it is so difficult to find details of adults that have been treated with this condition, I think I have read 3 articles so far of people that have had a stem cell transplant and they all had 10/10 matches, so it just makes me nervous that you need this match to have the procedure. It is early days for us at this stage and we await to hear about the suitability of matches form the consultant.
  • TonyHTonyH Total Reaction Points: 18
    I was 38 when I was diagnosed with Philadelphia positive ALL in June 2015.

    Exactly like your wife I am white European and likewise there were no 10/10 matches, but there were a number of 9/10. I'm sure the doctors were just saying it to make me feel better but they said in the case of PH+ that they prefer a 9/10 as there is a greater graft vs leukaemia effect.

    I had my transplant in October 2015 from one of the 9/10 donors, a German man. Like everybody I've had plenty of ups and downs since but fundamentally it's all good! I still get some very minor skin GvHD but I'm not aware the donor only being 9/10 has caused me any problems and 2.5 years later I never give that point a moment's thought.

    I know everybody's journey through treatment is different but having had the identical diagnosis my wife and I can relate to what you're going through. Happy to share whatever experience / advice can help.

    Wishing you both all the best

    Tony
  • boxwell Total Reaction Points: 0
    Hi Tony, great to hear from you and thank your message, it really has cheered me up!
    I am so pleased that your treatment has worked so well and you are living life to the full with your family, I hope you won't mind me asking you some questions along the way.

    All the best

    Adam
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 80
    Hi

    Thanks for posting, I am the lead nurse in patient services. I am sorry that your wife needs a transplant.

    As you have read from Tony a 9/10 is perfectly acceptable for a transplant, there might be more GvHD which can also mean graft versus leukemia affect (GvL) which can help fight the leukemia and keep your wife in remission. However even if there was not any GvHD a 9/10 is still good enough to go ahead with a transplant. There is a lot of information available and sometimes it can be a bit confusing and misleading, depending on were you look. Your wife will have a transplant coordinator who will guide you both through the planning and update you on donors. Although its early stages it would be worthwhile trying to spend some time with him or her.

    There is also information on our website on how we find donors https://www.anthonynolan.org/patients-and-families/stem-cell-or-bone-marrow-transplant
    and post transplant recovery https://www.anthonynolan.org/patients-and-families/recovery-first-year which you might find useful.

    Keep us updated on her progress

    BW
    Hayley
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