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Donor match and GvHD concerns

Hi everyone

I previously started a conversation regarding about my partner's journey for treatment against acute myeloid leukaemia in late August this year.
I am proud to say that thanks to the support of Anthony Nolan and the RDH, after nearly three months of chemotherapy, we have a match for Matthew. We may never know who it's from but from what we were told, a thirty-five year old female from Wales has kindly donated her stem cells for him. We just wish we could thank her personally as well. I've even joined the register myself to be a donor as well as I feel it is rewarding to give someone a second chance to start again and to help them have some new normality.
Matthew's receiving his transplant at Nottingham City Hospital so he will be in a safe yet more isolated environment on 2nd December, so unfortunately he will not be home for Christmas.
We had a group discussion with other patients and family members also receiving transplants today, and a subject that stood out for me was GvHD. I'm not sure if I'm right about this, but anyone feel free to correct me on this, but does it affect lung capacity? How do some patients respond to getting the correct antibiotics against this? And how would it affect someone in the long run after GvHD diagnosis?
If anyone could give us advice about this subject, that would be fantastic.

Again, thank you to everyone at Anthony Nolan for all of your dedication and support. It's given us that extra bit of ammo to be rid of cancer once and for all.

From Aimee x x

Comments

  • Hi Aimee,

    I'm pleased to hear that your partner has been able to find a donor and that he's approaching transplant. I have some experience of some of the team at Nottingham as I attended there as an outpatient to be treated for my GvHD.

    One thing you mustn't do is get too hung up on is thinking that he will get GvHD. It doesn't affect everybody and from what I understand the screening has improved even since I had my transplant nearly 4 years ago which means the chances of being affected are reduced.

    GvHD can affect people in several ways and can affect among other things the eyes, guts, lungs, liver, and skin. Those that are affected are also affected to varying degrees so for some it can be minimal and others can find more sever effects.

    We are all unique and there is no way of knowing whether Matthew will be affected and to what degree and there is a possibility that he may never be affected. In fact you will probably have heard it said that a small degree of GvHD is actually a good thing since it also has a Graft vs Leukaemia affect.

    I had skin GvHD and it was successfully treated by the team at Nottingham. In me the GvHD showed up a couple of months after transplant, but again this is something that can vary from person to person for those that are affected.

    Lung capacity was one of the pre-transplant tests that was done to ensure I was fit enough to undergo the transplant so that isn't necessarily associated with GvHD, but everyone here will tell you they felt breathless during recovery. That is normal for transplant patients and again is something that does get better with time and eventually returns to normal.

    My advice would be to put GvHD (and any other side effects) to the back of your mind and deal with that if and when it occurs in the knowledge that it can be treated if it does occur or that it is possible to live with the effects. Concentrate on the transplant itself and take each day as it comes, then deal with any issues that may or may not arise if and when they crop up.

    I hope this helps and hopefully others will post to give you assurances that GvHD doesn't affect everyone and for those that it does it is possible to either live with it or get rid of it.

    All the best,

    Steve
  • Hi Aimee,
    Great to hear from you again and I am sending all my best wishes to you and Matthew over the coming weeks.
    I just wanted to support what Steve says. It is good that you have some understanding of some of the potential risks around the transplant (eg, GvHD) but Matthew might not experience it, so in my opinion I would agree with Steve that it is probably best to park it for now and re-visit it if you need to at a later date. If it helps to share experiences, I got acute GvHD of the skin, liver and gut around Day 50 post-transplant. The latter was by far the worst for me and I spent nearly 7 weeks in hospital trying to sort it out. There were some dark times in that period, but I am very pleased to say that I fully recovered from it and came out of the other side and I am sure there will be many others on the site who can share their experiences as well. I didn't have any lung involvement so can't comment on that, sorry.
    Wishing you and Matthew all the very best over the coming weeks and please keep us updated as to how you are getting along and if we can help in any way.
    Greg
  • Hi Aimee,

    Thanks for posting, I am the nurse specialist in the patient team. I think the advice that both Steve and Gregg have given you is great. Although they have both had GvH their experiences are not the same which I think shows how different it can be everyone. Like Steve has said I think the best way is to try not to worry too much about it, once Matthew has had the transplant as long as you both know what to look out for i.e. a skin rash, any changes in bowel habit then you can see how he goes. Remember not everyone gets GvH but if Matthew does, GvH is very treatable and can be a good thing as it can help keep Matthew in remission with the graft versus leukaemia effect, GvH just needs to be controlled.

    The most common sites for acute GvH is the skin, gut and liver whereas lung GvH tends to be more chronic. Post transplant Matthew can get infections in his lungs or could just feel a bit breathless due to his fatigue so its important not to confuse these symptoms for lung GvH. Your transplant team will be very experienced and will always be looking out for evidence of GvH so again try not to worry, they will tell you if they have any concerns. If you have not already seen it, have a look at the Next Seven Steps on the Anthony Nolan website https://www.anthonynolan.org/patients-and-families/order-or-download-publications as its a really good resource to have post transplant and includes GvH.

    Keep us updated and I wish you both well.

    Best wishes
    Hayley
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