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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 CAR-T Cell Therapy Support Group.

alishawith4 | @alishawith4 | Aug 4, 2021
In reply to @greta_k "Hello fellow CAR-T patients and caregivers, My name is Greta. My husband and I are from..." + (show)
@greta_k

Hello fellow CAR-T patients and caregivers,

My name is Greta. My husband and I are from Michigan and getting ready for CAR T cell therapy. Colleen gave us a great introduction to the Mayo Connect last week. We are grateful for any support, knowledge, and/or advice you can give us prior to his T cell infusion next week. The wonderful team here at Mayo has given us a lot of information before we start this critical phase in the process but it would be great to have your patient/caregiver perspective. Thanks in advance for any advice you can provide.

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hello to you. Is this cartcell therapy for a solid tumor?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 4, 2021

Alisha, you can see all your posts in your profile here https://connect.mayoclinic.org/member/00-2a3b9d7d0b49df9c245222/activity/comments/

To get to your profile, click your profile picture in the upper right corner or your @username beside any of your posts.

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smokie | @smokie | Sep 5, 2021

I would be interested in knowing how CAR-T Cell patients are reacting to the shots for COVID 19 or anyone who has had COVID.

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Bob, Alumni Mentor | @grandpabob | Sep 5, 2021

Hello @smokie - good to see you once again. I had the Phizer vaccine, I had a mild reaction to the first dose, tired, headache for about a day, with the second dose, I had no reaction at all. I also had an antibody test, there was an excellent number visible. Of course, this does not mean I am safe from infection. I am comfortable the vaccine works, however I continue to be extra diligent when I am out and about in public.

Did Greg have any reaction?

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1 reply
smokie | @smokie | Sep 5, 2021
In reply to @grandpabob "Hello @smokie - good to see you once again. I had the Phizer vaccine, I had..." + (show)
@grandpabob

Hello @smokie - good to see you once again. I had the Phizer vaccine, I had a mild reaction to the first dose, tired, headache for about a day, with the second dose, I had no reaction at all. I also had an antibody test, there was an excellent number visible. Of course, this does not mean I am safe from infection. I am comfortable the vaccine works, however I continue to be extra diligent when I am out and about in public.

Did Greg have any reaction?

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Sounds about the same. Doing well - lots of golf and Grandkids!

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hthree | @hthree | Dec 31, 2022

I am a 17 year survivor and recent my numbers have been steadily rising. I used many diffy chemo regimens. Many worked, for a time. Then, have to change it

Any here trying the CarT therapies? Which one and please described your experience
How long did it work?
Any other treatments that have been helpful,
Thank you

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2 replies
Moderator
Amanda Roe | @amandajro | Dec 31, 2022
In reply to @hthree "I am a 17 year survivor and recent my numbers have been steadily rising. I used..." + (show)
@hthree

I am a 17 year survivor and recent my numbers have been steadily rising. I used many diffy chemo regimens. Many worked, for a time. Then, have to change it

Any here trying the CarT therapies? Which one and please described your experience
How long did it work?
Any other treatments that have been helpful,
Thank you

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Hello @hthree. Because you mentioned wanting to connect with others who have experience with CarT Therapies, you will notice I have moved you post into an existing discussion which you can find here:
- 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/

I'm hoping members @smokie and @grandpabob who have shared in the discussion and who may be able to come back and give some updates on information they know.

Have you just started exploring CarT therapies?

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363 | @363 | Jan 1, 2023

Hello..My name is Marilyn..my sister underwent Car-T with Kymriah for B-Cell Non Hodgkins and unfortunately just had her Pet Scan at day 87 past infusion and it showed tumours had shrunk, some were totally gone but a new mark on the petscan and will undergo a Biopsy in the next few weeks to see if blood clot, infection or cancer..we are praying its a blood clot. Has anyone else had these results and if so how are you now doing and what further treatments has anyone had..Thank you

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1 reply
Bob, Alumni Mentor | @grandpabob | Jan 2, 2023
In reply to @hthree "I am a 17 year survivor and recent my numbers have been steadily rising. I used..." + (show)
@hthree

I am a 17 year survivor and recent my numbers have been steadily rising. I used many diffy chemo regimens. Many worked, for a time. Then, have to change it

Any here trying the CarT therapies? Which one and please described your experience
How long did it work?
Any other treatments that have been helpful,
Thank you

Jump to this post

Hi there - @hthree, I was treated with Car T, Yescarta, for non Hodgkins Large B Cell Lymphoma after several failed attempts with various chemo therapies, I was treated all within 8 months, so chemo failures were very quickly identified.
There were no visible cancer cells after 100 days. Car T treatment was in August of 2018. I had follow up Pet and MRI scans for two years following the Car T infusion, there has been no signs of cancer since. I am currently seeing my Oncologist every 12 months as follows up.

It is my understanding that Car T is now being used as a treatment for more than just blood cancers, what are you currently being treated for?

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1 reply
hthree | @hthree | Jan 3, 2023
In reply to @grandpabob "Hi there - @hthree, I was treated with Car T, Yescarta, for non Hodgkins Large B..." + (show)
@grandpabob

Hi there - @hthree, I was treated with Car T, Yescarta, for non Hodgkins Large B Cell Lymphoma after several failed attempts with various chemo therapies, I was treated all within 8 months, so chemo failures were very quickly identified.
There were no visible cancer cells after 100 days. Car T treatment was in August of 2018. I had follow up Pet and MRI scans for two years following the Car T infusion, there has been no signs of cancer since. I am currently seeing my Oncologist every 12 months as follows up.

It is my understanding that Car T is now being used as a treatment for more than just blood cancers, what are you currently being treated for?

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Hello Bob
It's nice to hear from you and congratulations for a successful treatmrnt that really was a game changer for you
I have been reluctant to do the CarT. It has had few positive outcomes for Multiple Myeloma.
Still, I haven't eliminated it as a possibility.
Hope you continue to do well
Hallie
Aka Hthree

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