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A MyMyelomaTeam Member asked a question 💭
Lake Charles, LA

https://www.patientpower.info/multiple-myeloma/...

July 25, 2025
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A MyMyelomaTeam Member

My Dr. offered me Car T. at Mayo. I haven’t failed any lines of therapy. I did tell him I wasn’t interested in a stem cell transplant. I also declined the Car T treatment. If and when I relapse, I may or may not consider it but right now, noway. I am responding well to therapy and I want to beat this thing without either procedures.

July 25, 2025
A MyMyelomaTeam Member

I had CAR-T in March 2024, I was 74 years old. My insurance, BCBS, wouldn't approve it until 4 other lines of treatment had failed.

I was in the hospital for 12 days. No complications.

As of now I am in 'Complete Remission.'

My wife was my at home caretaker but she really didn't need to do anything but keep an eye on me to be sure nothing went wrong. It didn't.

BTW, I don't need to take any drugs whatsoever. Feel fantastic and ride a bicycle 10 to 15 miles a day so that should tell you how well I am doing.

I could have done ASCT but my doctor believed I would do better with CAR-T, so I took his advice.

July 29, 2025
A MyMyelomaTeam Member

I know of a person that just got a Car-T at John Hopkins. He’s around 79 (maybe just 76). He had a SCT 9 years ago and recently relapsed after being on Maintenance that finally failed.

His Car-T went well - just 3 weeks of recovery without any complications. He had to stay at John Hopkins housing for the time - it was expected to be 6 weeks but they said he was MRD Negative and good to be released at 3 weeks.

Turns out he was part of a group of 20 people that were getting the same Car-T treatment at John Hopkins. Their oldest was 89 years and went through it without any problems.

July 25, 2025
A MyMyelomaTeam Member

I had a bone marrow transplant about 4 1/2 years ago. My maintenance regimen is Pomalyst, with a Zometa (bone treatment) every 90 days. I was started on Darzalex that was discontinued because it was not beneficial.
My bone marrow transplant team said it ain't broke so let's not try to fix it at this time.
We had a conversation about several options available if and when a relapse happens and I have enough bone marrow cryogenically stored at the hospital for 2 more transplants if needed.
If the CAR-T cell is milder in side effects and discomfort over the bone marrow transplant, I would strongly consider it. I need to research it more about when the benefits outweigh doing a BMT.

July 25, 2025 (edited)
A MyMyelomaTeam Member

Best wishes with the CAR T treatment. I have just finished and returned home from the 30 day stay in Chapel Hill, NC last Wednesday. We were fortunate to have our housekeeper care for our dog, at her house, for that entire period (which we paid for). The secondary care giver was also a challenge for us - and we were again fortunate to have two of my friends share that responsibility - we needed one of them only one day when my husband needed to go back home to take care of a few things. Join the Targeted Treatment group where several people are going through CAR T.

July 28, 2025

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Yardley, PA

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