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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
@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.
Replies to "@dwolden Thanks for your reply. Your profile and username rung a bell, and I've realised it's..."
@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.”
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@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.