I find out middle of next month if I’ve reached MRD so we can drop maintenance meds. Crossing my fingers and praying it will be all good. Hoping it’s many years before a relapse, but knowing CAR-T is in the wings is very comforting. My treatments are overseen by a specialist at MD Anderson in Houston, but I go to Messino here in Asheville for treatment.
July 19
Not yet. Have relapsed Jan. 2026 with gradual increase in M Spike- will go to Duke cancer center to discuss CAR-T.
July 16
I’m also in the Asheville area. Have you already had CAR-T? If so, where did you receive the treatment?
July 15
Post CAR-T treatment experiences can vary quite a bit from person to person. Here's a general picture of what many people have gone through:
The Good News
Results from clinical trials have been encouraging:
- Around 3 out of 4 people saw a reduction in myeloma signs and symptoms
- 1 in 3 had a complete response (no signs Show Full Answer
Post CAR-T treatment experiences can vary quite a bit from person to person. Here's a general picture of what many people have gone through:
The Good News
Results from clinical trials have been encouraging:
- Around 3 out of 4 people saw a reduction in myeloma signs and symptoms
- 1 in 3 had a complete response (no signs of cancer remaining)
- Of those with a complete response, about 2 in 3 stayed in remission for at least a year Common Side Effects People Experience
Most people do experience some side effects after CAR-T. The most frequently reported include:
- Fatigue
- Fever
- Nausea or diarrhea
- Muscle aches
- Headache
- Infections
- Loss of appetite
- Swelling or cough Cytokine Release Syndrome (CRS)
One of the more significant things people experience is CRS, which happened in about 84% of participants in one major trial. It can feel like a bad flu — fever, chills, breathing difficulties, and confusion.
The reassuring part is that most cases are mild, and treatments are available to manage it. Only about 1.5% of people experienced severe CRS. What to Expect Practically
After the infusion, most people stay in the hospital for several weeks so the care team can monitor progress and manage any side effects. Even after discharge, staying close to the treatment center for a month or more is often recommended, just in case complications arise.
It's always worth having a detailed conversation with your doctor about what to expect based on your specific situation.
July 15
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