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Guidance re. stem cell transplant in 70s (MDS and CLL)
Hello,
I was hoping to get some advice, or just some first hand accounts, from anyone who has been through, or who has had a relative go through, a stem cell transplant at an older age. My mum is potentially going to have a transplant this coming February at the age of 73, though she is still very much undecided as to whether she is going to go through with the procedure.
To provide some background: my mum was diagnosed with CLL in early 2022 at the age of 71, and began treatment in late 2023. Her CLL was initially treated with acalabrutinib, but she relapsed after approx. 6 months, when her blood counts dropped markedly. At the time her doctors suspected Richter's, but a bone marrow biopsy only showed very heavy CLL infiltration, so they determined my mum had become resistant to the acalabrutinib quicker than expected, and that her CLL was "aggressive". Since then she has got into a good remission from the CLL on a second line course of treatment (venetoclax + rituximab), but some persistently low blood counts have prompted further bone marrow biopsies, and these have found several mutations associated with MDS/AML. We spent several months trying to reassure ourselves that these mutations might constitute "CHIP", and that the low blood counts were a response to the CLL and the treatment for it, but after new mutations appeared on a further bone marrow biopsy taken this summer, her doctors made a more definite diagnosis of MDS - initially low-risk MDS, but more recently they seem to have adjusted the diagnosis to intermediate risk MDS.
When my mum's doctors began discussing the possibility of MDS, we of course began reading more about it, and asking lots of questions about the treatment options, including the prospect of a stem cell transplant. Given my mum's age, we knew that the transplant was far from a given (many hospitals where we live have an arbitrary cut-off of 70 for HSCT), but we wanted reassurance that it would at least be considered as an option for my mum if her MDS began showing signs of progressing to AML. The end result is that we were referred to a bone marrow unit within our hospital trust, ostensibly to discuss the procedure and learn whether my mum would be a candidate, and to ask that they do a donor search, as we knew it was important to do this early on in case my mum's MDS transformed into AML rapidly. We were really wanting to know that a transplant would be a potential option in the future if my mum's MDS showed signs of progressing, but weren't expecting that things would necessarily come to a transplant, or that it would be imminent. So we were a bit shellshocked when we had a second meeting with the transplant unit earlier this week and learned that they had found a donor (a 12/12 match) and tentatively scheduled my mum's transplant for this coming Feb, pending some fitness tests that she'll undergo in the coming weeks!
So we are left in an odd position. We are optimistic at the thought of my mum potentially having a cure for her two blood cancers, but now the transplant is becoming a reality, and an imminent one at that, our worries are moving to the transplant itself, and all the risks associated with it. We (or me, really) pushed for my mum to be given the option of a transplant (and we sensed in our most meeting with the haematologist that has looked after my mum from the initial CLL diagnosis, that there is a lot of doubt on her end about the wisdom of having the transplant), but I don't think we expected it would happen immediately. The transplant doctors have of course explained that it's much better to do the transplant before the MDS progresses, and while the CLL is in remission, but as my mum seems so well at the moment (she is very active, still works almost full time), it's hard to reconcile ourselves to the thought of her going into hospital in 3 months’ time and potentially coming out very sick, even in the scenario that the transplant goes well. The mortality figures we've been given by different doctors have been frankly terrifying (we've variously heard 20%, 25% and 40% percent 1 year mortality rate for my mum's age group), as are the figures given for recovery time post-transplant, and all the risks associated with gvhd. At the last meeting, we asked whether the team had handled many transplants for patients in the 70-75 age group. They suggested very few (10-15 since they raised the age limit from 70 a few years ago), and that only half of those had been successful.
We're also struggling to understand the risk level of my mum's MDS, as it's been described at different points as low risk and medium risk in our conversations with my mum's doctors. The intermediate risk grading seems to come from the older IPSS-R calculator, however, whereas under the newer IPSS-M calculator, she actually falls into the low-risk bracket. (This has been the biggest puzzle for me, as the worrying aspects of my mum's bone marrow biopsies have been some of the mutations they've found - ASXL1, TET2, DNMT3A r882 - whereas the other indications have all been good - she is normal karyotype and her blasts haven’t been above 5%). We've tried to ask some of her doctors if they can tell us about the significance of the mutations they've found on my mum's bone marrows and what they tell us about the risk level of her MDS, but we've never really got the sense that any of the doctors have felt competent to answer, and as silly as it might sound, we're just not sure if the transplant is moving ahead because we requested it and set the train in motion, so to speak, or if it's because the doctors have made an assessment of mum's MDS (and CLL) and decided that they are higher risk than we've realised.
I'm sorry - I didn't mean this post to be so long, and I don't even have a question at the end of it! I think I'm really just looking for personal accounts - anecdotal stuff rather than figures - from others who have gone through a transplant at a similar age to my mum, and how they fared. Some of the reports and case studies I’ve read have reassured me that the transplant could go really well for my mum, but others leave me terrified, and wondering if we are walking my mum into something horrible and life-threatening in order to treat a disease that could potentially continue to be treated by the drugs she is already on, given that the venetoclax seems to be keeping both her CLL and MDS under control at present.
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I had my SCT for AML when I was 51, so I was quite a bit younger than your mom. Doctors are now performing transplants on older patients, which can potentially cure her two cancers.
Even if your mom is feeling well now, that doesn’t mean her health won’t deteriorate quickly. In a matter of 4 weeks I went from exercising at the gym three times a week to needing to be rushed to the ER.
The prep and recovery from SCT is rough! In my case, doing it was the only option to survive more than a few months. I am doing very well 9.5 years later and am very thankful for a new lease on life. It’s an individual choice, and people react differently to chemo and the transplant. It’s a tough decision, and I wish your mom the very best!
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3 ReactionsHello- I am 71 and day+4 of SCT. The predictions are unnerving. I tried not to focus on them. When my MDS progressed, I knew it was time to consider the SCT. I have faith God will heal me. I appreciate your sharing your feelings about all of this. It gives me insight into what my kids are going through.
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5 Reactions@janetlen
Hi, I am 71 with TPLL . I have been told that a bone Marrow transplant is very difficult for us older folks. I have decided that I will not put my children through that and will be transitioning to my death in a more peaceful manner. I am stable and am making arrangements for my death so that my children will not be burdened.
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3 ReactionsThanks all for your commets.
@alive. I'm glad to read that your transplant was successful. Can I ask if you've had ongoing complications (e.g. chronic GVHD) in the decade since? My hope is that my mum will still be with us in a decade, and that we'll be able to travel again together and do all the things she can't easily do now, with her cancer defining so much of her life. But I know that's probably a fanciful wish considering her age, her two blood cancers, and the potentially complicated road she'll have to recovery if she does go for the transplant.
@janetlen, you mean to say you have just had your donor cells tranfused 4 days ago? I hadn't quite expected to get a reply from someone in the midst of a transplant right this moment! I hope you're coping well?
@saga2, have you been offered a transplant? My understanding is that they are much better nowadays at getting older patients through them, with reduced chemo regimens in the lead-up to the transplant and better medicines to manage complications afterwards. But it's still a very scary prospect, and I was in truth a little surprised at how freely it was offered to my mum. My dad and I would be my mum's caregivers if she decides to have the transplant. It's not my place to comment on your family situation, but I'm sure your family would want to support you through a transplant if they thought it provided a meaningful chance of a cure.
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1 Reaction@saga2
We make our decisions based upon many factors. I too considered just letting the disease progress until death. After several years of prayer, I took this path. Either choice is hard on family, but there can be a light at the end of this process.
Bless you in your journey!
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3 Reactions@mgol It isn't easy but with the anti-nausea and diarrheal meds plus the assorted other drugs, I am getting through this.
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2 Reactions@mgol I was diagnosed with skin GVHD 5 years ago and now my doctor is weaning me of immunosuppressives. In my experience, my chronic GVHD has been mild compared to the first year immediately after the transplant. I had a lot of complications during the first year. Now my immune system is working normally and my doctor is hoping to have me off most of my meds sometime next year.
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3 Reactions@saga2
Good morning ! I admire your honesty and clear thinking about what your thoughts and plans are . I am 73 years young , but bone marrow has been attacked by PV POLYCYTHEMIA THEN ADVANCED TO MF MYELOFIBROSIS!! High risk !! Not good prognosis for me. I am on my last drug available now which I pray 🙏 improves my blood numbers for few more years. I empathize with what you are thinking and what your plans are, as SAD AS IT IS, I believe that I will NOT ATTEMPT BONE MARROW TRANSPLANT.
I hope to have enough strength mental and physical to enjoy my time with my grandsons !!
I wish you many more years with your family!
May you be blessed
Hanya
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1 ReactionHi Hanya, thank you for your well wishes.
I am at the beginning of my journey with TPLL. I was diagnosed in September 2025. I am recovering from hip surgery at the moment and building up my strength with physical therapy. My blood levels are stable this month.
I have noticed that I am tired and sleep longer. And like you I want to be around to watch my 7 grandchildren grow-up.
So for now, it is one day at a time.
Wishing you quality time with your family !
Sheila
Hi,
I was 60 in Nov 2024 when I had an allogeneic sct for eosinophilic leukemia. I know that’s a bit younger than your mom but they told me 50% chance and I also had lupus and HLH which they weren’t sure would cause further complications. My transplant and recovery went remarkably well until month 11 when I developed GVHD and had to go back on immunosuppressants. But now the GVHD is under control, transplant is 100% donor and no signs of cancer. lol I’m not saying I feel great- I’m still quite fatigued and have some residual GVHD symptoms but I’m here and able to visit friends and family.
It was very hard to make the decision to move forward because I was feeling fine and the pill (jakifi) was keeping everything under control and my disease burden had gone from 37% to 2%. But we decided to move forward since you have the best chance if you’re feeling well and disease is under control.
However it’s a very personal decision and you never know how you’ll respond. I would encourage you to get a second opinion at a bigger, more experienced hospital. They will tell you if they are a better fit for people in their 70’s or they may tell you that your hospital is fine and they agree with their recommendations (that’s what my second opinion said). It is of course easiest to have it near your home but if another place offers something better then it might be worth considering.
Also, very important- it seems that you are feeling surprised about the search and that they scheduled things for February. You are the one in charge here and should have your questions answered (that was told to me from Dana Farber transplant team second opinion). It’s so easy to feel like we are bothering the doctors with our questions but it’s a big decision and it helped to hear a doctor say that.
Ask your current doctor if your mom had many 12/12 matches or if it was hard to find a match. If it’s hard then that’s something to consider since they may not find another match soon.
Good luck. I know it’s very hard to make the decision to move forward.
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