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MMSURVIVOR
Multiple Myeloma Discussion • July 23, 2025
Sharing My Positive CAR-T Experience
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I’m 75 and I’m 110 days post CAR -T as of this post. Just last week, I had a telemedicine visit with my Stanford doc and she went over my latest bone marrow biopsy results. They did a deep deep deep scan of several million cells and found ZERO myeloma cells, ZERO bad M protein, and low light chain numbers well BELOW normal range. They say I have a “COMPLETE RESPONSE” to my treatment. Stanford docs feel it will years with no myeloma and no maintenance drugs. I just need monthly visits, for now, with my local doc. They use remission for curable cancers; semantics🤔. Early on I did the DRVD chemotherapy. The Darzalex gave me severe breathing problems; the local doc and Stanford doc had never seen this before and stopped the drug. Velcade gave me a full body rash and they stopped the drug. Dex gave me sleepless nights for 2 days. Revlimid I tolerated and eventually remission for a year with Revlimid as my maintenance drug. I relapsed the beginning of this year. They referred me to a CAR-T doc at Stanford to start the process. In February they harvested my T cells and sent them to a lab to be genetically modified to fight myeloma cells. Once the cells were ready I went to Stanford to start the 40 day process. They have a rigid protocol they follow. There is pre work ahead of getting the cells. Daily visits for blood work etc. The modified cells were put back in on April 3rd for an SEEK and DESTROY mission. After 5 days there is a mandatory hospital stay for 7 days; that’s when side effects happen. They want you close to treat them quickly and mine were minimal. Just before I was released they did a bone marrow biopsy (OUCH!) and that showed ZERO myeloma cells👏👏. On a side note; I was a research “lab rat” for the drug company. When I getting blood drawn for them as well as Stanford, sometimes they drew 17 vials of blood. I was happy I had a PICC line. The drug company paid or ALL of our expenses for the 40 day stay. Our room was a suite😄. After my experience I feel CAR-T is the way to attack MM. Good luck with you MULTIPLE MYELOMA JOURNEY.
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