Relapse after BMT

@loribmt That is so good to know! We keep thinking maybe he's too old to go through all of this, but honestly, he's in good shape. His heart, lungs, kidneys, etc. are all strong and he even still walks very briskly. The other day we both walked from one end of the Mayo complex (we're in Jacksonville) to the other and then back to get the car. He barely breathed hard. I had a hard time keeping up with him. So I'm taking that as a good sign.
The main issue he's been having is his platelets. They will get them up to, say 30k and the next day they'll be back down to 8k, and on and on. They've been infusing him with platelets every other day for over a week and they keep coming down. So they're putting him in the hospital tomorrow to start the Car-T chemo prep and keep his platelets controlled better than if he's at home. Which is a sigh of relief for me.
Hopefully I'll have some good news to share soon!
Thanks so much for the info, it really does help!!

@gmacd
I follow Lori and her post and found yours. I had MDS and a BMT. All your husband is having is what i am reading about. Until you or someone you love has a blood cancer, it is crazy seeing all that can potentially go wrong with any of us. As a former platelet donor, I hope plenty are on hand to give your husband what he needs through this Car-T chemo prep.
One thing i do know is these transplant medical teams know what they are doing. A cure for us and success for them.

@katgob thanks so much for your reply. Platelets are the problem at the moment, they keep going into the low single digits. But there are plenty available and the docs don’t seem too concerned. The one thing that keeps me hopeful is that my husband feels and looks good (total opposite from last March and his diagnosis) and other than the platelets, everything else is strong. So we keep going. He will have the “smarter” T cells reintroduced into his system on Monday. So, on pins and needles until that process takes its course. I do have faith in the Mayo team to do things right!

I've had 2 autologous stem cell transplant and Cart. It has been a long journey for me. You can ask me questions about my experience if you would like. Thanks

@jope Welcome to Connect! Well you’ve been through the wringer with two ASCTs and then having CAR-T! Thank you for popping into the conversation.

If you don’t mind sharing a little more about yourself, what led you to requiring the auto transplants? Did you have multiple myeloma?
We have a great discussion for members having had or entering into the CAR-T experience. I’d love for you to enter your story there! Here is a link to: 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/

When was your CAR-T? How was recovery?

@loribmt Good evening, I was 60 years old when I was diagnosed with IgG Lambda MGUS in February 2015. In May 2017, my M-spike started to rise to 3.0 g/dl., and a bone marrow biopsy showed 85% plasma cells. A fish panel confirmed t(14;16) in 18% of cells, and monosomy 13 in 21% of cells.
In July 2019, my IgG Lambda was .29 g/dl. A fish panel found monosomy 13 in 28% of cells, t(14;16) in 15% of cells and a gain of 1q and loss of 1p in 12% of cells.
In June 2020, a bone marrow biopsy showed 25% plasma cells and 0.3% myeloma cells. Another bone marrow biopsy in November 2020 showed 10-20% plasma cells by morphology and 1% myeloma cells. In December 2020, I had a second Autologous Stem Cell Transplant.
In January 2024, I received treatment with Talvey as bridging therapy. I underwent a CAR-T cell therapy in March 2024. It took me a few years to regain my normal everyday living.
In late September 2025, my Monoclonal IgG Lambda spiked to 0.4 mg/dL and there was an increase in my free light chains. In October 2025, I started Talvey.

@jope Thank you for sharing your “MGUS and beyond” history! Our bodies, especially the blood/marrow systems are amazingly complicated. Your experiences will be helpful to other members so I hope that you’ll be a regular contributor to Connect.

Has your return to Talvey as a treatment been helpful to keep the Mspike under control? Is there any possibility of another CAR-T therapy procedure in the future?? What are next steps?

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.

Thanks all.

@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.