Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.
Connect
Thanks @deb913 for your reply. It sounds like your transplant has gone very well! It must be an immense relief to hit that 12 month marker.
We're going to see an MDS and BMT specialist privately in order to get a second opinion. We're really hoping that meeting will give us a bit more clarity, and make the decision easier for my mum. It may be that the MDS is higher risk than we realise - and that might lessen any hesitation around the transplant.
Mum and I went for a long walk today and she really seems so well. We also had her latest blood test results back today, and everything's looking better than it has for a while - she's no longer anaemic, platelets are getting close to normal, and her neutrophils are at least steady despite her having stopped taking GCSF injections earlier this month. In that context, it's so hard to think of her going into a bone marrow transplant that's likely to make her very sick, at least in the short term. But I know this is also the best - or possibly only - window of opportunity for her to have the transplant.
-
Like -
Helpful -
Hug
3 ReactionsMy husband went through transplant 7 months ago! The side effects are managed with meds. It wasn’t as scary as I thought! Staff at Mayo In Rochester are fabulous! Answered all of our questions! My husband was 68 when he had transplant!
-
Like -
Helpful -
Hug
3 ReactionsMy husband was diagnosed with CLL in 2013 and treated with six cycles of FCR, an intense chemotherapy regimen. We had ten years of remission although his blood counts never recovered vigorously. We were told it was “incomplete recovery of the bone marrow.”
In 2023 at age 73 he began to experience severe shortness of breath and fatigue on exertion. We were shocked by a diagnosis of high risk MDS. His doctors feel it was caused by his FCR treatment. We were referred for allogenic stem cell transplant (anonymous donor, 9 of 10 match) which he was fortunate enough to receive in August 2024. It has been a very difficult process but here we are 15 months after transplant with recent bone marrow biopsy showing FULL REMISSION.
We are truly grateful for the excellent care and brilliance of his transplant team, led by his transplant specialist Aasiya Matin at the Mayo Clinic Rochester.
It can be done. Wishing your mother the best.
-
Like -
Helpful -
Hug
8 Reactions@dwolden
Thanks for your reply. Your profile and username rung a bell, and I've realised it's because I've read some of your posts on the CLL support group (I'm not very active there, but check it frequently and post ocasionally when we need advice re. my mum's CLL). I'm glad to read that your husband is doing well. It sounds like his situation mirrors my mum's in many respects, only I don't think they believe my mum's MDS to be treatment-related given she never had the old chemo regimens for her CLL.
Is there any advice you or your husband would give one year out from the transplant? I know much of the advice is probably universal whe it comes to transplants, but knowing how similar your husband's situation is to my mum's, it might make the advice more meaningful/relevant!
My mum has all of her pre-transplant tests tomorrow. We're not quite sure what to expect from those. I think she is nervous, especially about the one that measures her lung capacity, as she has asthma and has always had pretty dismal results from those peak flow tests they use to monitor asthma.
-
Like -
Helpful -
Hug
2 Reactions@mgol yes I’ve posted on the CLL Health Unlocked site for years. Such wonderful support.
Transplant is not easy but it is the only chance at cure. We trusted our original oncologist and his referral and put ourselves in the hands of the transplant team. I did lots of research and asked so many questions all along the way.
My husband was transfusion dependent in spite of treatment with Vidaza right after diagnosis. While we waited for the team to find a donor he needed transfusions of platelets every week and sometimes red blood cells too. It was very difficult.
We had to move temporarily to be near the transplant center. We rented an apartment very near the hospital. We received excellent transplant education, and I joined a support group for caregivers.
Because of his age, my husband had “reduced intensity” conditioning chemo. We had to be very careful about food safety, infections, etc.
Being a transplant caregiver is a huge responsibility. Your mom will need lots of help and care. He did spend some time in the hospital, but mostly the care was outpatient. He was seen every day for over a month, then gradually went to twice a week.
There were some medical issues. We were in the team’s hands. He did his best every day to follow their urging to “eat, drink and walk.”
We were able to move home after 100 days. There were follow-up visits every three weeks for awhile. He had to have a “boost” of donor cells about eight months after transplant. He is now 100% donor cells and cancer free.
It’s complicated. It means a new life and that means sometimes grieving the old life. But we are grateful for every day together.
We both have great mentor in Lori (she is mentioned often here). I had another mentor through the National Marrow Donor Program, and I still receive free counseling and survivorship support through them (even if you live outside the States, they may be able to help).
I hope this helps. I’ve had a lot of help and would be so happy to provide any assistance I can for you and your mother.
-
Like -
Helpful -
Hug
5 Reactions@mgol this is from NBMT link. It’s another really good resource. I follow them on Facebook:
Many patients say surviving a BMT has taught them a great deal. Here is a blend of survivor voices, common themes in support groups, and insights often shared in oncology and transplant literature:
What Patients Say Surviving a BMT Has Taught Them
1. The meaning of real strength
“That strength isn’t the absence of fear… it’s walking forward even when fear sits on your chest.”
2. The value of small, ordinary moments
“That a warm cup of coffee, a walk outside, or a day without symptoms is no longer ‘ordinary’—it’s sacred.”
3. Patience with their own healing
“That recovery isn’t linear. It loops, dips, surges, and pauses. And that’s okay.”
4. How to live one day at a time
“That long-term thinking can feel impossible in treatment… so living in the moment became their survival skill.”
5. A new respect for their bodies
“That their body is tougher and more miraculous than they ever thought—even when fragile.”
6. Deep gratitude for caregivers
“That no one survives a BMT alone. Caregivers become lifelines, anchors, and partners in endurance.”
7. The importance of advocating for themselves
“That speaking up—about pain, symptoms, confusion, fear—is not weakness but wisdom.”
8. The power of community
“That support groups, nurses, doctors, and fellow patients form a family born from shared fight.”
9. That vulnerability is not the opposite of strength
“That asking for help doesn’t make them less capable… it makes them more human.”
10. The courage to accept uncertainty
“That life after transplant has unknowns, and learning to breathe within them is a victory.”
11. The ability to endure more than they imagined
“That they learned to keep going even when the path was dark or unclear.”
12. That healing includes the mind and spirit
“That emotional recovery is just as real and necessary as physical recovery.”
13. The privilege of second chances
“That a BMT is both a battle and a rebirth, and each new sunrise feels like borrowed grace.”
14. Letting go of what no longer matters
“That the trivial things that once caused stress seem so small compared to what they’ve survived.”
15. The power of hope—even fragile hope
“That hope doesn’t have to roar. Sometimes it whispers. But even a whisper is enough.”
-
Like -
Helpful -
Hug
8 ReactionsThanks @dwolden for your comments, and I'm sorry to be slow in acknowledging them. A lot has happened the last few days.
My mum's had multiple appointments this week, and in one respect we're closer to the transplant but in another respect further way. And I think my mum is more undecided now than at the start of the week.
My mum had all the pre-transplant fitness checks on Monday. We're still waiting for the full results, but the suggestion today when we spoke with the doctors was that the preliminary results hadn't thrown up any issues. So we're assuming my mum will be considered ok to go ahead with the transplant.
But we also had two consultations today, one with my mum's primary haematologist, and one that we arranged privately with an MDS and bone marrow transplant specialist. And both seem to be more hesitant about the transplant than the doctors we've met at the transplant unit. We've always sensed that my mum's primary haematologist was unsure about my mum having the transplant, and made the referral to the transplant unit largely at our request. Today she suggested that the hospital were uncertain about the risk level of my mum's MDS. The MDS specialist wasn't opposed to a transplant as such, but clearly had reservations. She wants to see more results from the most recent bone marrow biopsy (we're still waiting for the myeloid panel), but seemed to imply that she wouldn't recommend a transplant based on the results of the prior bone marrow biopsy - done in May - and would only recommend it if the myeloid panel shows an "evolution" in the MDS. Her opinion was that my mum's MDS is likely low or intermediate risk, which wouldn't warrant a transplant at her age, though she also gave a likely life expectancy of 3-5 years in the absence of a transplant, which for us wasn't very encouraging.
So we are unsure where we are heading. I know my mum is in some sense lucky in being able to choose whether to have the transplant - for lots of people, there's no prospect of a good outcome any other way, whereas in my mum's case, it's possible the MDS won't progress to AML, and that the CLL will continue to be treatable, even in the absence of a transplant. In that sense, today's meetings were positive. But we also know the window of opportunity to have the transplant is probably very narrow considering her age, and if we make the wrong decision now, it's not something we'll necesarily be able to correct later.
My other worry is that my own googling leaves me worried that the risk of my mum's MDS is being understated, but I'm obviously not qualified to interpret most of what I'm reading. I've entered my mum's results into different MDS/AML risk calculators, as best as I can, but the results vary so wildly (from this: https://ibb.co/5dX6jHJ ; to this: https://ibb.co/6cPcM840) that I don't know how on earth we're meant to interpret things.
We're going to have a further meeting with the transplant team later this month. Hopefully we will have the myeloid panel back by then, and know a bit more. But as it stands, I think my mum is going to ask if the decision around the transplant can be deferred to a later date.
-
Like -
Helpful -
Hug
2 Reactions@mgol transplant is not a step to take lightly, so your mum’s caution and your questions are so very valid.
I have learned not to consult Dr. Google as it has been terrifying on the regular. I do thoroughly read all the medical reports and ask questions endlessly.
You are correct, for many people there is little choice involved. We are fortunate to have top notch doctors who were very honest with us every step of the way. When we met with his local oncologist and received the MDS diagnosis, he told us David’s life expectancy (without transplant)at best would be 18 months. I remember the peculiar sensation at that moment, I believe I went into shock.
We passed that point in May of this year and I was able to trade some of that feeling of terror for a rush, every single day, of deep gratitude.
Every patient and every cancer is so unique. I wish you the best and your dear mum the very best as you face these decisions and move forward.
-
Like -
Helpful -
Hug
4 Reactions