Bone marrow (stem cell) transplant support thread

Question 🙂 I completed a round of pretreatment ahead of a planned stem cell transplant to reduce my myeloblasts from 6% to under 5%. My myeloblasts actually went up to 7.1%. My doctors don't know why or how this could happen. Pretreatment was 5 daily infusions of decitabine and 400 mg of Veneclaxta daily for 28 days.

Any thoughts or ideas on places to research or ask will be much appreciated! I just started a second course of the same pretreatment. Thanks!

@sennep, has there been any change in your myeloblasts in the last few days? Did they test again?

I have had just 2 biopsies. I learned during a second opinion that the first biopsy was “ marginally adequate “ 🙄. Next biopsy is likely the week of Oct 28. I also learned that 50% of my cells have the FLT 3 mutation which may be causing the chemo to be less effective.

My husband has just been diagnosed with MDS. He is 75 and in fairly good health (still works manually every day at his job). A BMT has been suggested as a possible "cure." The doctor said a 60% chance. We thought this might be the answer, but in looking at all the negatives, GvHD, continued medications with side effects, fatigue, loss of appetite, what is the quality of life? Other options suggested are meds that would only be a 1-2 year help.

Welcome to Connect, @librarian5 I am sorry to hear about your husband’s MDS diagnosis. Doesn’t seem fair at all when we’ve been aging along gracefully and then, wham, out of the blue comes a life altering event. That happened to me 5+ years ago (at 65 yrs) with AML (acute myeloid leukemia). Certain types of MDS can progress into this more aggressive form of leukemia making it difficult to treat long term.
I had a bone marrow transplant 5 years and it was 100% successful in preventing a relapse of my AML. I’m now almost 71 and having an amazing 2nd chance at life which would not have been possible without the transplant. I’d be pushing up daisies from the underside for at least 4 years by now. My BMT was late June 2019 and by January 2020 we were back to our winter trips down to Florida. So for a few months of downtime during recovery, it was worth the many healthy years of opportunity ahead. I’m super healthy, active and a huge supporter of this amazing technology we have to give us a new life.

Personally, I have mentored several patients 70-75+ years through their bone marrow transplants and they are all doing very well, returning to their previous enjoyment of life. Years ago there was more of a limitation on the age of recipients for Stem cell transplants because of the radiation and chemo involved in the pre-transplant Conditioning. Through research, statistics, data, those protocols have been modified and are more tolerable for older patients. Most older patients have a reduced chemo lode and no radiation.
There are also new treatments administered post transplant to help avoid graft vs host related issues.

60% seems like a low number for success rates. I’m wondering if that is old information? But even at 60% survival, that is 60% higher than 0% in 2 years with no BMT.

Yes, there will be an interruption of normalcy for a while with the transplant. But without the transplant, there would be constant monthly chemo possibly becoming non-effective as your husband’s doctor mentioned.
With the transplant, many of us no longer require any meds about a year or so after transplant…some even sooner than that. I’m on no meds except for Calcium/Vit D3.

We have a growing number of BMT members in the forum. Here is a good discussion where you can read some of our stories and experiences and meet @katgob, @mary612 @alive @edb1123 @kt2013 @jenmkr63 @jrwilli1 (BMT for mds) @dwolden @graycoose BMT and so many others…

My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Another discussion:
Struggling with decision to move forward with Allogeneic Transplant (with @deb913 who will now be having her transplant Oct 30)
https://connect.mayoclinic.org/discussion/struggling-with-decision-to-move-forward-with-allogeneic-transplant/
And one more: Snapshots of Hope.Life on the other side of transplant: https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

The first few months after transplant are the roughest, feeling fatigued, loss of appetite, possible nausea. But as the body recovers with the cancer cells gone, the new immune flourishes and eventually stamina and endurance is regained…life continues!

There will be other members popping into the conversations so I hope you’ll be able to find some comfort with the fact so many of us have had successful outcomes. I’m here, along with ‘my posse’ for you every step of the way. ☺️
Are you near a large hospital or clinic who does BMTs?

Hello, librarian5. I feel we have a kinship, I was the librarian for my class when I was in 3rd grade and I was awesome at it! 😊.
Thank you for sharing your husband’s story and joining the connection conversation. I was diagnosed with leukemia at age 59 and went through conditioning chemotherapy, followed by transplant. My Hematologist said we were going for cure and I hopped on that train. It was a bumpy ride, but with the support of a great medical team and great family and friends team, I continue in remission now 11 years later.
It is a very personal decision and you are spot on wanting to weigh the pros and cons. Everyone’s journey is different. I am a person on faith and that too was really helpful as I moved through the process.
Whatever you and your husband decide will be the right decision. Ask lots of questions, but only read the medical information that applies to your situation. There is lots of misinformation on the internet that can confuse and complicate the issue.
Being a woman of faith, please know my thoughts and prayers are with you both.

Hi librarian5. I am sorry to hear of your husband’s illness. Depending on the type of MDS your husband has, transplant may be your best chance at longer survival.
My husband was diagnosed last November with MDS that was “subsequent to treatment” ( he had intense chemotherapy ten years earlier for leukemia) that was high risk for becoming AML. His oncologist told us frankly that the MDS would likely take his life within about 18 months. He referred us to Mayo Rochester for consultation about a stem cell transplant, our only hope for a cure. When we met with the transplant specialist here in Rochester she was very honest about everything. She described the risks and explained potential complications like GVHD. She told us the chance of success was 50% (we later learned that was for cure and no relapse: the survival rate is over 90 %).
David was 73 at diagnosis. He was determined to beat MDS.
He had an allogenic stem cell transplant on August 22. It has been extremely difficult and incredibly uplifting. We moved to Rochester temporarily as we have to be very close to the hospital and clinic for the specialized care.
Day 57 and he is doing well. We saw his transplant specialist today and I shook her hand with tears in my eyes. We have had some fearsome challenges but this team has carried us through. We have more challenges ahead but we are so grateful for this new chance at more time together.
The science is amazing and there are advances all the time. I hope for the best for your loved one and you. It takes courage and commitment, but it can be done.