Connect
← Return to Guidance re. stem cell transplant in 70s (MDS and CLL)
Discussion
Guidance re. stem cell transplant in 70s (MDS and CLL)
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 2 days ago | Replies (25)Comment receiving replies
My mum didn't go ahead with the transplant in February, no. She decided to ask if the decision could be deferred until later in the year, as she was nervous about going into the procedure, and wanted to plan some travel for this year while she still felt in relatively good health. I think we all sort of wanted to kick the can down the road, and so agreed that this was a good idea. We were hopeful that my mum would still have the option in the future, though I'm worried we may have missed the window of opportunity for the transplant due to the way things have developed since then.
We had a further consultation with the transplant centre in late Jan, after my mum had made the decision to defer the transplant, though on this occasion it was a different doctor that met with us. The transplant doctor we had been seeing at the time I wrote my posts was seemingly a locum. He left the post in January, and the returning doctor we've met with since then has been much more cautious in suggesting a transplant. On our last consultation in Jan, the suggestion was that my mum's blood counts were relatively good and a transplant would be hard to recommend, especially at her age. The doctor didn't really want to get into the risk level of my mum's MDS, or her specific genetic mutations. She spent a lot of time telling us about other treatment options for elderly patients (azacitidine etc) and I got the strong sense that she felt mum shouldn't have been referred for a transplant to begin with based on her age, though we managed to get a vague sort of assurance that a transplant could potentially still be considered in the future if the MDS progressed.
My mum's platelets have dropped markedly over the past month. They've now taken her off the venetoclax and started her on eltrombopag, though it doesn't seem to be helping. She has lots of bruising and the platelets have been dropping with each blood test. She goes into hospital for a transfusion tomorrow, and had a bone marrow biopsy last week, for which we're awaiting the results.
My mum's other counts are ok - she's slightly anaemic, but only just below the normal range, and her neutrophils have climbed back into normal range since stopping the venetoclax. But the platelets are severely low - 8 on today's blood test, against a normal range of 150-400. Below 20 I understand is where they recommend regular transfusions, and below 10 where they begin to worry about internal bleeding. So we're very frightened. In the past, platelet transfusions didn't seem to have much effect for my mum, though we understand they're now HLA matching the platelets, which we hope will help.
We're hoping things might normalise, or that there might be another, more benign explanation for the thrombocytopenia, such as ITP. My worry, however, is that the bone marrow biopsy is going to show the MDS is progressing towards AML, and that based on our last consultation with the transplant doctor, they are no longer going to offer my mum the option of a transplant but instead only offer chemo – with no prospect of curing the disease.
We also have a neighbour who's about 2 weeks into a transplant at the moment, though he's having an autologous transplant. He's having a tough time, which I know has frightened my mum and dad. My mum seems so tired and depressed at the moment, and I worry she’s resigned herself to not having a transplant and letting the MDS run its course.
Replies to "My mum didn't go ahead with the transplant in February, no. She decided to ask if..."
@mgol I had a BMT late last year. I was 71 and turned 72 while recovering. I am 5 months past the transplant and still recovering. My MDS started progressing around 2 years after diagnosis in 2023 even though my blasts were low like your mom's. I did not have the dual diagnosis like your mother. Yes, recovery is higher risk for our age group. Many institutions have strict age cutoffs, typically 75 for BMT, while others do not. I don't know if your Dr is at an MDS center of excellence? You might want to check. I had platelet transfusions when my platelets were below 10, but I was in the hospital at the time. Prayers to your mom! I know this is a difficult decision for her.
Good morning @mgol. I wish I could join you and your mom this morning with a cup of tea and a chat. Not sure where I’d start the conversation but maybe with this…her neighbor who just had an autologous stem cell transplant and its impact on your mom who is waffling with a transplant herself.
The first two to three weeks of either stem cell transplant, autologous (using their own cells) or allogeneic (donor cells) (BMT) are the roughest. The preconditioning chemo and the riggers of the transplant itself are challenging for the body. It’s normal and expected for all blood cell counts to drop to near zero by week 2. There will be deep fatigue, sometimes mouth sores or hair loss, maybe nausea or other gastric issues. Patients feel, for lack of better word, awful. Much like having a horrid bout with influenza.
The good news, usually during that same 2-3 week period, once the newly infused stem cells find their way into the bone marrow they set about regenerating new blood cells. After that happens, there is a noticeable uptick in strength, stamina and decrease in the worst symptoms. I can understand your mom’s reaction to her neighbor but I expect he’ll be feeling much better soon. And that may bring a little more positivity as she sees him recovering. Auto transplants generally have a much faster recovery time.
That brings us to your mom. Not everyone who has developed MDS requires a stem cell transplant. (SCT/BMT) There are different classifications of the disease. Some have more potential to progress into a more serious disease where a stem cell transplant would be suggested. As was the case with @katgob.
Also, many people who are in their 70s+ may not always be good candidates for the BMT because there can be risks and challenges. It’s not an easy decision to make. Doctors take into consideration more than just age when making the determination. There have been significant advances in treatments over the years for older patients and maybe this is all your mom will require.
The bone marrow biopsy will be helpful in giving your mom’s oncologist the overall picture of her marrow health in producing healthy blood products. I know she’s concerned about the drop in her blood numbers, especially her platelets. Treatments, such as Venectoclax, are chemotherapy agents. Chemo tends to target rapidly dividing cells like cancer cells. Unfortunately, they are not discriminatory so they also interrupt other rapidly dividing cells such as our blood cells, hair follicles, mucosal lining of mouth and digestive system, etc. So your mom’s blood numbers dropping are normal and should start to pick up again by week 3. It can take longer for some people to recover after a cycle and that may explain your mom’s low platelets. The transfusions of platelets can be rather routine during treatment for cancer. I can’t even remember how many platelet infusions I had over my courses.
For your mum, right now she’s trying to wrap her head around all of this. It’s a lot! She had it in head that the BMT would be the cure and now she feels she may have lost that opportunity. While a transplant, at this time in history remains the only potential cure, it isn’t a guarantee and there are possible side effects. So, while the treatments she’ll be offered may not be a ‘cure’ they may provide her with many healthy, normal-ish years ahead. I say normal-ish because there will be some commitment for infusion appointments and then a loagy week or so with each cycle. But many members in our Connect family who are in their 70s and 80s+ have been receiving treatments for their MDS or AML (related) and keep moving forward with life. Such as @lindagi in this discussion she posted a few years ago:
https://connect.mayoclinic.org/discussion/aml-age-78-taking-decetabine-venetoclax-no-transplant/
Well, my tea pot is empty and it’s time to take on the day. My heart goes out to you and your mum and dad with all the medical drama that’s hovering over them right now. Distraction and diversion can be wonderful means for incremental mental healing. It’s spring so walks in the sunshine, taking in the sights and sounds of this amazing season can be life affirming. Always find something to look forward to! This may be a setback for your mom but it doesn’t mean it’s the end. ☺️
Will you please let me know what she finds out about the biopsy?
Connect
@mgol
I just found this thread. I had my BMT Apil 9th of 2024. I was 63. Reading about your mom is so very tough to read about. On the other hand, they have new treatments all the time. I did not see Lori pop in until a few posts ago, and for me, she helped me through my transplant.
I am not sure what will happen with Mom, but i offer my thoughts and hopes of more time. A transfusion or two and treatments to stop AML if it is lurking. Make sure you as caregivers take care of you .