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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.

elwooodsdad | @elwooodsdad | Apr 23 10:06am
In reply to @grandpabob "Hi Bruce, My Car T therapy was performed at Mayo Rochester. The care I received there..." + (show)
@grandpabob

Hi Bruce,

My Car T therapy was performed at Mayo Rochester. The care I received there was wonderful as it was with my local cancer center, however, as in your case the local center did not provide Car T therapy at the time.

Have a great day Bruce.

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Thanks for your quick reply. It is a 10 hour trip, but I find comfort with Mayo. I had ear surgery at Mayo when I was 10. An amazing experience.

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vivian808 | @vivian808 | Apr 23 3:17pm
In reply to @elwooodsdad "My name is Bruce/Elwoodsdad. I was diagnosed with Non Hodgkins large cell B lymphoma, Stage 4...." + (show)
@elwooodsdad

My name is Bruce/Elwoodsdad. I was diagnosed with Non Hodgkins large cell B lymphoma, Stage 4. It didn’t present with the traditional lumps, knots, night sweats, etc. I felt weakness in my hips and legs. I am 75 and figured my issues had more to do with age. I vetted a local oncology group, saw the doctor at 3:15, and was hospitalized by 8:30. I received my first R-Chop infusion the evening of 11/17. I have complete six infusions, but we still have evidence of lymphoma and liver issues. CAR-T is my next stop should I be deemed able to endure it. I am unapologetically fearful.

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Hi Bruce,
I’m 70. I had CAR T-Cell at Cleveland Clinic in Ohio. In Feb 2022. It was easier than RCHOP. The infusion takes a mere 15 minutes. Then you will be monitored for 10 days. I felt fatigued & slept a lot. No energy. Fear not, you can do this. Take good care of your body, eat nutritional foods & avoid sugar & junk food. But most of all, be strong, have faith and remember this is a journey & you can do this. Sending you good thoughts, prayers and blessings.

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elwooodsdad | @elwooodsdad | May 22 7:27pm
In reply to @grandpabob "Hello @elwooodsdad, I was treated for Lymphoma at the age of 62, five years ago. I..." + (show)
@grandpabob

Hello @elwooodsdad, I was treated for Lymphoma at the age of 62, five years ago. I had several different regimes of chemo which all failed prior to undergoing Car T therapy. As this therapy was not available where I live, I had to go away to receive it, we had to travel 400 miles. I was away for 6 weeks as you indicate. The side effects of receiving the treatment are wide ranging however my experience is that they were acceptable. I had many of the side effects post infusion such as cykotine release syndrome and a high fever.

The therapy worked very quickly in my case as 90 days post treatment, scans displayed no cancer present.

I would advise you to get proper accurate information on Car T from your health providers as that is always the best source of accurate information.

If you questions about my experience with Car T, please ask, I am happy to share.

How far away do you reside from a facility that provides Car-T?

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Bob,
Thanks for the note and update. The University of Oklahoma is about 100 miles away, and I know couple of people there who could be of help. I had a rather involved tumor removal at age 10 at Mayo, and it has served me well. I'm crowding 76 and still have similar misgivings which I had at age 10. I'm planning to make contact with the necessary players and see what the math problem looks like. Dealing with quarterbacking your own treatment plan, guesstimating the possible cost, etc…I'm going to ask for illumination by their social work committee at both places. They have likely already worked the problem.
Have a nice evening,
Bruce

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1 reply
Bob, Alumni Mentor | @grandpabob | Jun 1 6:48am
In reply to @elwooodsdad "Bob, Thanks for the note and update. The University of Oklahoma is about 100 miles away,..." + (show)
@elwooodsdad

Bob,
Thanks for the note and update. The University of Oklahoma is about 100 miles away, and I know couple of people there who could be of help. I had a rather involved tumor removal at age 10 at Mayo, and it has served me well. I'm crowding 76 and still have similar misgivings which I had at age 10. I'm planning to make contact with the necessary players and see what the math problem looks like. Dealing with quarterbacking your own treatment plan, guesstimating the possible cost, etc…I'm going to ask for illumination by their social work committee at both places. They have likely already worked the problem.
Have a nice evening,
Bruce

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Hello Bruce, it appears you have a plan in place for next steps. Well done!

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pgollinger | @pgollinger | Jul 2 9:46am
In reply to @colleenyoung "Thanks, @pgollinger. I look forward to your updates as you move through treatments when you're able." + (show)
@colleenyoung

Thanks, @pgollinger. I look forward to your updates as you move through treatments when you're able.

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To All
I am in my 5th cycle of VRd. I took a 2 week break after cycle 4 to harvest stem cells for storage. I was able to complete the harvest in one 4 hour apheresis. I will be randomized for CAR T cell therapy as part of a clinical trial after my 6th VRd cycle. Velcade is causing severe constipation and neuropathy. I am treating the constipation with daily Miralax and Colace. This usually doesn’t work so I take RX Constalose every other day. It is pretty aggressive. The neuropathy is primarily in my feet. Worse at night but still manageable. I am taking gabapentin but I can’t tell if it is helping. My hands are still pretty good. Overall I’m doing ok. My m protein has dropped to .2. It was 2.56. So the chemo is working. I’ll update when I find out if I will be doing CAR T.

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