Relapse after BMT

@gmacd best wishes for positive outcomes with everything. My husband had an allogenic stem cell transplant in August 2024 at age 74 (he developed MDS subsequent to treatment for CLL in 2013).
There were hellish aspects but he is doing well now 17 months post transplant. Every day is a gift.
You sound like a courageous couple. Best wishes.

@dwolden thanks for the good wishes. He had a stem cell transplant (his own cells) almost 10 years ago for Multiple Myeloma, which went fairly smoothly and got the Myeloma under control. The Leukemia is a result of one of the chemo drugs he was taking to keep the Myeloma in remission, which it is. So far the Car-T is going well so far, and we have good hopes for it. The docs want to do a BMT just a few months after the Car-T. Sigh, that does seem like a lot for him to handle, but thankfully he's basically in good shape, so we'll see. I was kind of hoping we could see how the Car-T does a bit longer term. This cancer thing is quite the roller coaster ride! It's great to have this community to put things into perspective.

@gmacd I am glad Car-T is going well for your husband! I can’t even imagine how disappointing it is to relapse. I had my BMT for AML 9.5 years ago and for a while lived in fear of a relapse. Fortunately, after dealing with severe GVHD during my first year, I have only had one major flare up since then. I have been cancer-free since my transplant.

There are so many unknowns on this journey! Wishing your husband all the best as he finds the treatment that works!

@alive Thanks so much for your encouragement. So far the Car-T has been almost side effect free and, other than the platelets, he's doing very well. They do want to do a BMT shortly after which is quite a big move. I'm so glad to see your BMT has done so well for you, it does help gather all the info we need to make decisions.
Unknowns is an understatement! But I'm learning to take things in stride.

@gmacd Well, that first side-effects free few days was a tease, just about day 5, fever, low blood pressure and general fatigue hit like a ton of bricks. But he's bearing it. I keep telling him he's my hero, going through as much as he's endured the past year. He's starting to look and sound a bit better now, they're weaning him off the steroids, and we're hoping he'll be out of the hospital on sunday, and then an event-free recovery. This is quite the Six-Flags mega roller coaster ride!

Hi @gmacd. This is most likely the side effects from the preconditioning chemo. When blood cells drop to their lowest level after a chemo treatment, it’s referred to as nadir or neutropenia. The side effects are temporary and expected. All the blood cell levels will drop during this period until around day 14 or so, before the newly infused cells engraft in his bone marrow. Once the cells engraft, they will set up housekeeping and start producing blood cells again. As soon as you see his neutrophil value starting to rise, your husband should improve steadily. His doctors will keep an eye on him, monitor his temperature for any signs of infection. His discharge papers will most likely indicate that you need to check his temperature daily as well.

You’re so right, it one heck of a roller coaster ride. You’re doing great as a caregiver/cheer leader! Fingers crossed for his speedy recovery!

I get Talvey bispecific biweekly injections. And yes, my paraprotein is detectable but it is so low that they can't measure it. I also get IVIG once a month. I'm not sure if the medical community will offer me another CAR-T treatment. I received my CAR-T treatment at Fred Hutch, where I see a Multiple Myeloma specialist every June, July, and August. The rest of the year, I see an oncologist in Austin, who they have refered to my MM specialist in Seattle when needed. I can't express enough the importance of seeing a Multiple Myeloma specialist to review ones medical history. They all have saved my life from the brink of death to living an almost normal life.

I'm happy to announce that Talvey is working. This month blood results is NO protein has been detected. Yay.