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Hi everyone - donor matches

Hi,

I'm new here ☺ I'm so happy to find a place where I can read so many success stories and hear what others have been through. It's really helpful as I feel quite lost at the moment.

I am 34yrs old and have had refractory Hodgkins Lymphoma for 2 years - well I did, I'm technically in remission at the moment! I was due to have an autogulous stem cell transplant but after 3 separate attempts I failed to mobilise my stem cells.

I am now due to have an unrelated donor Allograft. This scares me beyond belief, so much so that I have started to have panic attacks and generally feel very low. In the past i have always been able to pick myself up but i am terrified and can't shake it off!

I have been told my donor is a 9/10 match but everyone I've spoken to or read about so far has either had a sibling donor or 10/10 (100%) unrelated match. Do any of you have experience with a 9/10 match? I'd love to hear from you please.

Thank you x

Best Answers

  • Hi there and welcome to the forum.

    It's a nervous time when you're told you need a donor transplant to cure your illness and it's not surprising you feel as you do.

    I never actually knew what sort of a match my donor was so I don't know whether it was 9/10 or 10/10 or anything else. I was probably so ill at the time I didn't really think about it. Also there wasn't a resource like this to compare against so my knowledge of the grading of matches was next to none.

    I'm not sure whether there are other patients here who've had a transplant from a 9/10 match but if there are they will hopefully be able to reassure you. The Anthony Nolan team will probably have more experience of this though and will be able to assure you and are there to support you. I'm sure they will be able to give some good advice to you regarding the transplant.

    I can't comment on the relative success of unrelated donor transplants for a 9/10 match versus a 10/10, but I'm sure your transplant team wouldn't put you through the process if they weren't confident of a positive outcome. Speak to them about your concerns and make sure they reassure you regarding the likely success rate.

    You will find lots of support here as you go through the transplant and I wish this forum had been around when I had mine, as nobody understand what you are going through better than a patient who has done or is doing the same, so please keep in touch and let us know how you get on.

    All the best,

    Steve
  • My name is Hayley and I am the new Anthony Nolan nurse specialist based in the patient experience team. My role here is to offer additional advice and support to patients and families who have been affected by blood cancer and stem cell transplant. I will be working 3 days a week in the office.

    Thank you for posting on the forum, I am sure you will find the support and advice you receive from the patients and families who have experienced transplantation really useful and reassuring.

    You have probably already realised from reading some of the comments that the way you feel at the moment is very normal and most of the patients on here have all felt the same at some point. It is daunting to be told that you need an unrelated stem cell transplant and its ok to discuss how you feel with your transplant team. They will be able to offer you support and advice and also maybe refer you for some counselling if you feel low. By the sounds of it you have had a lot to cope with having had several courses of treatment and not being able to mobilise your own stem cells. This in itself can be very stressful and disappointing so to then have to prepare yourself for an unrelated transplant its not that surprising that you are finding it all a bit tough. You have some time before you will be admitted for your transplant, take that time to spend on yourself and do some of the things that you enjoy, maybe even try and get away for a few days if you feel up to it. Its important that you take care of yourself emotionally so now is the time to get the support, you could speak to your GP and also try looking on the Macmillan website http://www.macmillan.org.uk/information-and-support/index.html to see what support is available to you locally . I always recommend taking a bit of time out, I am sure you have been given lots of information and this can be overwhelming so try and focus on what is important to you now and take it a bit at a time. The Seven Steps is a great resource to prepare you for your transplant along with The Little Guide for Transplant Patients both of which are available from the Anthony Nolan website
    https://www.anthonynolan.org/patients-and-families/resources-and-information/download-or-order-information

    With regard to the 9/10 match this is completely fine for a transplant, the acceptable criteria for a donor is a matched sibling or a 10/10 or 9/10 HLA match. Steve is completely right, your transplant consultant would not recommend a donor that is not good enough. Having worked as a transplant co-ordinator I know how much work goes in to finding the best donors for our patients, so please do not worry your donor is a perfectly good match. However it might also be beneficial to discuss this with your consultant so you can talk through any particular concerns you have and they can put your mind at ease.

    I hope this has helped and keep us updated with your progress, the forum will be great to give you advice and support as you go through the transplant experience.

    Best wishes
    Hayley
  • Answer ✓
    Hi, I had a stem cell transplant in November 2015 to treat my AML. My donor was a 9/10 match which is I believe a very good match for an unrelated donor. You are more likely to get a 10/10 match if your siblings are matched. 7 months down the line and I am very well, I have a little GvHD, my medication is being reduced and life is great. There are things that I can't do yet but that will come.. Good luck, I am sure that all will go well.
  • Answer ✓
    Hi, I'm also new to all this mullarkey and have several conflicting emotions which I think it quite normal. I am being admitted on Wednesday 6th July for conditioning in preparation for a 9/10 unrelated donor transplant on 13th. I can't comment on any of it now but am happy to as I go through the processes.
    Best wishes
    Joy
  • Thanks Joy, you are right I think its very normal to have mixed emotions, I don't think the build up to the transplant and finding donors etc. helps. Patients often tell me they just want to get on with it and once they are admitted and it all starts they feel a bit better.

    I hope it all goes well and please do keep us informed of your progress or if there is anything else we can do to help.

    Best Wishes
    Hayley

Answers

  • Thank you all so much for your advice and experiences. I feel more assured now and have also had the chance to talk to my transplant clinical nurse.

    I have a Macmillan counselling session booked for next week, have read the Anthony Nolan literature and will also meet one of the consultants and then I am ready to go the week after. It's all happening so fast but maybe that's a good thing so I have less time to worry. Everyone is certainly trying their best to reassure me and answer my questions, I couldn't ask for a better team and having people like yourselves to help is invaluable.

    Martinmaylam it is very reassuring and also fantastic to hear you're doing so well, long may it continue I wish you every success in your continued recovery and getting your life back on track. I hope that my transplant will be just as successful as yours!

    Thanks all x
  • Hi Joy,

    Yes, the more I speak to others the more I realise it's perfectly normal to have mixed emotions and lots of apprehension. Waiting doesn't help but that is out of our control. My first donor failed their medical and I have now been waiting a few weeks to hear from donor 2 as to when they can donate. They're in a different country so it's taking longer I think. I feel like I'm slightly losing my mind but trying my best just to enjoy my time now and do things to keep me busy. I'm sure all will go well eventually.

    All the best to you for the 6th and the 13th. I hope it is a quick and uneventful transplant for you ☺are you having BEAM + campath for your conditioning? Please do keep in touch I'd really like to know how you're doing along the way.

    Best wishes
    Clare
  • Hi Clare

    Do your best to enjoy the time before transplant. I find a trying to see the funny side of things helps too. My mantra is "Fake it til you feel it" Unfortunately it's not as exciting as it sounds :-) It's just sticking a smile on your face even if you don't really feel like it and eventually it will become real.

    I know what you mean about the wait. You feel like you're in limbo a little bit. My sister was tested but wasn't a match. My donor is from Germany.I won't be having all the meds in BEAM as my lung function wasn't quite as good as they hoped. The Bicnu (Carmustine) has been substituted with Bendamustine but the others are the same as well as campath.

    Try and keep busy and stay positive. Sometimes I tend to overthink things.

    Please keep in touch. I would really like to know how things are going.

    Best wishes
    Joy
  • Hi Joy,

    I think that's great advice from Clare about staying positive and I'm convinced part of the success of a transplant is psychological. I tried to stay positive and determined to get better no matter how hard things got and I'm sure that helped me get through it all.

    You're going through a big undertaking and it's not surprising that you are apprehensive, but both of you have the support of all of us here to help you through.

    Good luck for the 13th Joy, and all the best for when your date comes around Clare. Please keep i touch and let us know how you're both getting on.

    Steve
  • Hi . I'm glad I found this thread as it was the exact question I was about to ask. I've been told unofficially that there may be a 9/10 match for me. I haven't seen the transplant team yet and they said they would be in touch when the search & next steps were clear. Fortunately my consultant works across both hospitals so can keep me in the loop. I'm assuming that more tests are needed before deciding if the match is good enough to progress. I'm also HL relapsed twice and had an auto SCT in spring 2015. I'm currently bridging with brentuximab and have a PET at the end of the month to see if that's worked. I hope so - don't fancy the additional ESHAP that's on the cards if I'm not. In some ways I just want to just get on with it and get to the other side (whatever that entails). Equally I feel fairly well and want it to draw out as long as possible. Sigh! Thanks for reading. Dee
  • Hi
    I thought It was about time I did an update as I am now on day 55 post transplant. To be perfectly honest the whole transplant procedure was a very long process as I was unlucky enough to have a serious infection resulting in septic shock and being admitted to intensive care for 10 days. I also had severe diarrhoea, lasting for weeks which wasn't a good combination!! I have now been home for 3 weeks and been prescribed Budesonide and things are settled down. I am making small improvements every day and am trying not to be too hard on myself when I get frustrated if I struggle with something which I used to take for granted.

    I hope things are going well for you all. Please let me know how you all are.

    Best wishes
    Joy
  • Sorry to hear you've had a tough time but hopefully it's all behind you now Joy. Onwards and upwards.

    It does take time but be patient and keep pushing yourself a little. Try and keep mobile and keep eating what you can if your appetite is poor. It's important to keep your strength up and I think it helps you recover quicker. I was guilty of being lazy and I think it extended my recovery because of it.

    Celebrate each step along the way and before you know it you will be back to your old self.

    All the best,

    Steve
  • Hi Steve
    Definitely onwards and upwards. The only time to look back is to see just how far you've come!!

    I am really pleased to have this forum to gain insight into other patients experiences. It really helps to be able to look at the different subjects for information.

    All the best for everyone's continuing better health

    Joy :-)

  • Hello Joy, I am pleased to read of your update and glad you are home after the ordeal. I am waiting in the wings to hear if there is a donor for me... My sis was a 50 % Haplo match and I am of the understanding that I need a better match than that.
    Anyway I just wanted to say glad to read your update. Take care.
    Clarey farey hope you are ok too xx
  • Hi
    Been for a check up today. My blood is now completely that of my donor, which is brilliant news. I have also had my PICC line removed which feels like massive progress.
    My very best wishes to you all and I look forward to hearing how you all are xx
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