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Guidance re. stem cell transplant in 70s (MDS and CLL)
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Dec 4 5:31am | Replies (18)Comment receiving replies
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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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.