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.