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Lori, How long ago did you have your Car-T? Have you had any long term side effects like hair thinning or ankle swelling?

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Replies to "Lori, How long ago did you have your Car-T? Have you had any long term side..."

Hi @jandjerry and welcome to Connect. I didn’t have
CAR-T cell Therapy, but received a bone marrow transplant almost 6 years ago. While the procedures aren’t the same there are some overlapping experiences such as the preconditioning chemo, which can temporary side effects such as all the blood cell numbers to decrease, hair loss, and other side effects. So I can’t really comment on long term hair thinning or ankle swelling.
However, I’m so happy you’ve joined the forum. There’s a small, but growing number of members who have had CAR-T Therapy for numerous conditions. They’re very willing to answer questions and offer support.

I see you already posted a similar question in the CAR-T and joint pain discussion so I’m expecting someone will pop into the conversation to help you out.

Here are a couple more links for you:
CAR-T: Opportunity to Connect
https://connect.mayoclinic.org/discussion/opportunity-to-connect/
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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 did you have your transplant? Did you have Mulitple Myeloma or another blood condition?