Relapse after BMT

Good morning, @wakop. I’m disappointed to read that your son has had a relapse with his ALL, two years after his bone marrow transplant. This has to be very emotional for him, as well as you and the rest of the family. If I remember, his brother was his donor so there’s a vested interest from all of you. I know your son had a rocky recovery early on and was hoping his health had improved over this past year.

Bone marrow transplants, for all the positive changes they can bring to the immune system, aren’t foolproof and relapses are possible. It’s not an easy process to go through so I’m sorry there has been a relapse.

Are the appointments tomorrow for follow-up testing or is this a consultation with his doctor and BMT team?

My husband is getting ready for Car-T and BMT shortly after. It’s a heartbreaking situation overall. And all too uncertain. We will pray your son’s cancer is at the very least controllable. Hard enough going through it with my husband, can’t imagine with my child. But stay strong for a positive outcome.

Welcome to Mayo Connect, @gmacd. Wow, your husband is running the gamut of complex genetic transplantations. As mentor for the BMT/CAR-T therapy group, I’m really interested in learning more about your husband and his diagnoses that have him receiving both CAR-T and a BMT. I know each therapy can have benefits but are not interchangeable for some types of blood cancer. Does he have multiple blood disorders?

This is challenging for both your husband and yourself. As patients, we pretty much go along for the ride. But our caregivers take the brunt of the stress/worry and taking on both ‘divisions of labor’ from the household.
There are many members in the forum who have gone along a similar journey. We’re here to offer support and answer questions about anything that pops up. I had a BMT almost 7 years ago which gave me a 2nd chance at life. While these procedures aren’t a walk on the beach they can be gifts of life! Is there any information I can provide for you? What is the timeline for your husband’s procedures? Has a donor been found for the BMT?

Hi Lori, thanks for reaching out. Everyone keeps telling me I’m amazing and I just know what he’s gone and going through. What I do is peanuts compared to what he’s endured!
He was diagnosed with Multiple Myeloma almost 10 years ago, and he’s, so far, in remission with that. But around last March he got really bad and we found out it’s B-ALL leukemia, likely caused by the Revlimid he took for the MM. They got that controlled with Blincyto, but in early Dec. just when they thought it was nipped, it has come back with a vengeance. We had talked about Car-T previously to keep it at bay, but their feeling now is very strong to do a BMT 60 days after the Car-T.
The kind of crazy thing is that when he was first diagnosed, his dr. told him he wouldn’t survive a BMT. And now he’s recommending it. And their feeling is that even both procedures may only buy him another year. (I’ll take every second they give me!)
He will be going into the hospital on the 25th to start the Car-T. His platelets are single-digit, but he actually feels pretty good and today walked the length of the Mayo complex and up a flight of stairs and barely huffed. So I take that as a good sign and pray for the best. Someone has to beat the odds, right?
The whole thing is daunting, but finding this group is wonderful. I’m one of those people who likes to get all the “ammo” together to fight, so I’m always looking for answers. It’s great to have others who have gone through this to rely on.
Thank you so much for doing this! It makes a huge difference to newbies!

@gmacd With all that’s happening regarding the CAR-T and eventual BMT, I’m relieved that your husband (and you) are in the hands of the outstanding teams at Mayo Clinic. I’m a little biased because I wouldn’t be here without the life saving care of my BMT team at Mayo Rochester.

There are several members in the forum who have received CAR-T therapy. Most recently @4health4bonnie shares her experiences with CAR-T for her MM. Other members include @kirkwilliams2049 @denisej4032 and many others in this discussion.
~CAR-T Cell Therapy: Introduce yourself and connect with others.
https://connect.mayoclinic.org/discussion/car-t-cell-therapy-introduce-yourself-and-connect-with-others/
Another discussion:
~ Anyone have experience with CAR-T therapy for multiple myeloma? https://connect.mayoclinic.org/discussion/seeking-patient-experience-info-on-car-t-for-mm/

I understand how daunting this all is. If there’s anything I can help you with just give me a poke! ☺️
One question for you…is your husband having an actual bone marrow transplant using cells from a donor. Or is he having an ASCT (autologous stem cell transplant) using his own cells?

@loribmt he is getting donor cells for his BMT. They’re looking for matches now. He had an autologous stem cell transplant about 7-8 years ago for the MM. He actually did pretty well handling the procedure. It wasn’t great, but also not awful. Praying for the same with the BMT.

Good morning, @gmacd. The allogeneic transplant your husband will have this time is a bit different than the ASCT previously for his MM. As already mentioned, he’s receiving donor cells so he won’t be going through the harvesting process. The protocol for pre-conditioning may be different for him this time. And the biggie, will be recovery time. That will be longer than the ASCT and the upcoming CAR-T therapy procedure. Those both have a recovery time of about 6 weeks initially and then several months to feel back to normal. (Just in time for his BMT).

The BMT has a little more challenging recovery time because of the introduction of foreign stem cells to the body and the addition of meds to help avoid a reaction to the cells. However, the CAR-T Therapy and the BMT can be amazing life saving procedures, often allowing some of us a gift of a 2nd chance at life.
I hope you’ll keep me updated on the timeline and progress of his procedures. Wishing him (and you) smooth sailing as he starts the CAR-T journey Jan 25th! I forgot to ask…which Mayo Campus?

@loribmt I’ve been studying up on it all an we do it will be a rough ride. There is a fairly significant possibility of mortality (20-30%), then again that’s a 70%+ possibility of success. He’s 75, but other than the leukemia, in very good health. So for now we’re just focusing on the Car-T, then onward!

@wakop Please let us know how things go with your son. Sending prayers!