Considering a stem cell transplant with a 9/12 donor

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Hi all,

I am a 43 year old male. I was diagnosed with Chronic Myeloid Leukaemia (Chronic myeloid leukaemia ('CML')) in March 2025.

I have since tried Dasatinib and Bosutinib, both of which did not have the desired effect in terms of disease control and the side effects were many.

I have since been moved onto Asciminib, which has had a much better disease response but again, the side effects are quite limiting at times. They include extreme fatigue, muscle and joint aches and pains, muscle cramps.

This all means that day to day with work and life in general, it is becoming very difficult to maintain with such limiting side effects. Therefore I have been offered a stem cell transplant.

We are looking to proceed with this in January of 2027. The biggest problem is, the best match they can find for me is a 9/12 mismatch.

I was just wondering if anybody has had such a mismatch and a successful transplant? Or just peoples thoughts on going ahead with this transplant.

thank you kindly in advance

Stuart

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Hi @Stuart1982 and a warm welcome to the forum

Im sorry to hear about your diagnosis and the impact it’s having on quality of life.

It’s hard to accept at times.

I was diagnosed with a different blood cancer called Myelofibrosis.

I went through three different regimes of chemotherapy two lower and one higher intensity.

It was a combination of lower intensity that got me to a point where a Bone Marrow Transplant was an option and thanks to an anonymous donor.

My donor was a 9/10 and a 10/12 match.

What’s important to know that not all the markers carry an equal weighting so worth asking your Haematology Team about this.

I had my Bone Marrow Transplant in April 2025. Process is challenging without a doubt as is recovery.

16 months on I’m doing well so no regrets about going ahead.

Hope that helps and take care

Duncan

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Hi Duncan

Thank you for your kind welcome to the forum.

I’m sorry to hear of your diagnosis, but I am thrilled to hear that you are currently doing well, and long may that continue.

It most definitely has been tough to take at times, particularly as I was relatively fit, active and healthy prior to this.

Currently, I have had no treatment other than the tablets which I take each day.

I will need to speak to my consultant regarding the weighting of the markers on my potential donors.

I have had a little campaign through friends and family where I have had approximately 30-40 people (if not more) sign up to the DKMS donor list. Fingers crossed this may help somebody in need.

I really want to thank you for responding to me as I found your response both helpful and inspiring.

I hope your journey continues to have a positive outlook with many healthy years ahead.

Keep fighting and thank you.

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Hi @Stuart1982

You are most welcome.

Diagnosis is tough. I like you was still very active and in good health when first diagnosed.

It’s very much a case of listening to your body and going with the flow. There will be days when you feel like you just have to rest. Listening to your body is important.

Fantastic your little campaign has got registrations for DKMS. Every person who joins a register could be a match for someone at some point, giving them a second chance at life.

Sometimes with blood cancers the mental challenge is just as hard as the physical challenge.

Do keep us updated on how things progress.

Take care

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Hello there @Stuart1982, a belated welcome to the forum and thank you for sharing your query. I’m sorry to read of your diagnosis with Chronic myeloid leukaemia ('CML') last year, sounds like you’ve already tried a few of the typical treatments and their side effects were not agreeable, to say the least.

I’ll put the Blood Cancer UK information about Chronic myeloid leukaemia ('CML') here for your reference in case you haven’t read it: Chronic myeloid leukaemia (CML) | Blood Cancer UK

Living with a different but related chronic myeloid blood cancer called Polycythaemia vera ('PV') I can relate to treatment not having the desired effect—I experienced pretty disabling fatigue plus aches and pains after I started taking hydroxyurea. I didn’t have any symptoms before.

Sadly I empathise with how much fatigue and pain can affect daily life and it really does feel limiting. There were points where I felt like the fatigue was too much for me to function even semi-normally.

Thankfully it faded after a few months and is pretty tolerable now. I found staying active in whatever ways my body could manage actually increased my energy, rather counterintuitively. Yoga was most manageable I found. I’ll share the Blood Cancer UK and Macmillan information about fatigue: Fatigue | Blood Cancer UK and Tiredness (fatigue) and cancer | Macmillan Cancer Support

I wonder what your specialists have said about how long to expect symptoms from the treatments you’ve tried? Are any of these treatments worth trying again if you knew their side effects decreased with time? Just a couple of ideas to consider.

As a stem cell transplant has been offered I’m glad dear @DuncanB has shared his wisdom as he knows his stuff. You might like to reach out to others around the forum living with Chronic myeloid leukaemia ('CML'). You can always use the search box at the top, and you’ll find threads full of lovely folks like this: Husband (36yo) diagnosed with CML

Here are another couple of threads where members have shared about Chronic myeloid leukaemia ('CML') treatments and clinical trials, here and here. If you’d like to reach out to other forum members, just add an @ before their username and they should get a notification.

We forum members can’t answer medical queries but we can share our own experiences and there are many others here like Duncan who have had stem cell transplants and bravely share how it is, I’m thinking of dear @Spangleystar and @Byrnebaby here: Cyclophosamide priming

If you’d like to speak with the specialist Blood Cancer UK nurses about the finer details of a stem cell transplant do give them a call on 0808 2080 888. BCUK also have a clinical trials team who I’ll tag here @ClinicalTrialsSupportService.

I love that you’ve helped so many people sign up to the DKMS donor list, excellent stuff and really caring of you. September is blood cancer awareness month so it’s a great excuse to draw even more attention to what we live with!

Maybe you’d also be interested in letting people know about the Blood Cancer UK Walk Of Light, where we and our loved ones can do a sponsored walk for BCUK: Walk of Light 2026 charity walk | Blood Cancer UK

Please keep us posted about how you get on at this difficult time @Stuart1982, I don’t envy the decisions ahead. I’m sure you’ll find further reassurance around the forum, do have a look.

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Thanks for the tag lovely @Duncan I would be happy to answer any questions you have @Stuart1982 about my experience, but it is important to note that both BB and I had autologous Stem Cell transplants, meaning our own cells were harvested and returned to us, so our risks of Graft-versus-host-disease ('GVHD') were massively reduced. Also you will need a long time to read that thread, it is over 1k messages long (and neither @Byrnebaby or I use 5 words, when a hundred will do :rofl:)

I can’t comment on the suitability of this match, I would likely be asking for data around matches. For example what is the least compatible match the doctors would move forward with, does this correlate to Graft-versus-host-disease ('GVHD') or success in general (ie is 6/12 a punt or still as likely to succeed?). Those kinds of things. This is one of the areas I find Copilot (or any available AI for) really useful for, developing a list of questions to ask your consultant/team! I say team because I find going to my CNS means I don’t have to wait for answers in between appointments! @DuncanB has given you a great starter too on this and is more aligned to your direct experience even though we all have different cancers (multiple myeloma here)

Go well and good luck, we’re here for you xx

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