1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy
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CAR-T Cell Therapy: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Sep 17, 2018

Welcome to the CAR-T Cell Therapy group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people who have experience with CAR-T cell therapy or are caring for someone on CAR-T cell therapy. There are so few people who have experience with this new cancer immunotherapy. Together we can learn from each other, support one another and share stories about living with cancer and coping with the challenges of treatment.

Let’s chat. Why not start by introducing yourself? When did you or your family start therapy? How are you doing today?

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

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kirkwilliams2049 | @kirkwilliams2049 | Nov 1 2:29pm
In reply to @altabiznet "@kirkwilliams2049 It is great to hear that you had such a positive experience. How was your..." + (show)
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@kirkwilliams2049

It is great to hear that you had such a positive experience. How was your recovery post CAR T? If you do not mind sharing, for how long did you have post-transplant fatigue, dizziness, other side effects, and when were you able to start doing all regular daily activities, like walking, cooking, driving, computer, etc.?

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@altabiznet I really restarted all activities immediately. I should note that I spent 2 weeks being monitored in the cancer facility. The only thing I couldn’t do was drive for 3 months. They were afraid of neurotoxicity during that period. I really could have driven. Like I said: Magic!

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Alta Net | @altabiznet | Nov 1 3:27pm
In reply to @kirkwilliams2049 "@altabiznet I really restarted all activities immediately. I should note that I spent 2 weeks being..." + (show)
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@altabiznet I really restarted all activities immediately. I should note that I spent 2 weeks being monitored in the cancer facility. The only thing I couldn’t do was drive for 3 months. They were afraid of neurotoxicity during that period. I really could have driven. Like I said: Magic!

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@kirkwilliams2049 This does sound like magic. It is great that you had CAR T option for your condition. Where did you have CAR T transplant done - which Mayo Clinic?
I am 9 months post Stem Cell Transplant for a different condition and still very fatigued, need help with my daily activities with a prospect to start recovering only at 12 months post-transplant. But it is good to know, that if I need additional therapy in the future, CAR T will be my first choice. Best regards and thanks for sharing.

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jda28 | @jda28 | Nov 3 8:01am
In reply to @kirkwilliams2049 "@altabiznet I really restarted all activities immediately. I should note that I spent 2 weeks being..." + (show)
Profile picture for kirkwilliams2049 @kirkwilliams2049

@altabiznet I really restarted all activities immediately. I should note that I spent 2 weeks being monitored in the cancer facility. The only thing I couldn’t do was drive for 3 months. They were afraid of neurotoxicity during that period. I really could have driven. Like I said: Magic!

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@kirkwilliams2049

I'm happy for you and also relieved to hear you share that your experience with CAR T was a positive one. Thank you for posting. My 33 year old daughter with Mantle Cell Lymphoma will undergo CAR T after her BTK-i treatment. I'm newer to this site and reading through the posts this week to acquaint myself with members and their helpful insight. Thank you again!

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