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.

4health4bonnie | @4health4bonnie | Apr 24 1:05pm

In reply to @oregonami58 "Thanks for good report on the older fellow! I am 66 and in good condition so..." + (show)

I am just finishing Car T at ohsu. Dr Desai is my doctor. I am on day 30. I will find out next week if it worked! I am very immune compromised after everything. I have to get growth factor shots every five days. I didnt realize how long it can takefor immunity to return. My care has been excellent.
Bonnie

kirkwilliams2049 | @kirkwilliams2049 | Apr 24 4:41pm

Day 30 was when I was declared in remission again after a PET scan. At month 14 my immune system is still not great. I may be going back on ivig infusions again in May. It’s really not all that bad though. I contracted a flu bug from my wife and both of us recovered at the same time.

Anyway, good luck. It’s nothing but up from here! Positivity is the best therapy.

anthea29 | @anthea29 | Jul 5 1:23pm

Hi-Anthea here. Had CAR-T early June and will have my PET scan and bone marrow biopsy this next week. I had stem cell transplant (my own cells) and large b-cell cancer came back. Praying CAR-T is working! Glad I found this site.

Lori, Volunteer Mentor | @loribmt | Jul 6 9:33am

In reply to @anthea29 "Hi-Anthea here. Had CAR-T early June and will have my PET scan and bone marrow biopsy..." + (show)

Welcome to Connect, @anthea29 Wishing you continued success with your CAR-T journey! A couple of our more recent CAR-T members @4health4bonnie and @kirkwilliams2049 have had some really encouraging results so far.

I’m sure you’re a teensy bit anxious to see the results of the PET scan and the BMB. So I’ll cross my fingers, eyes and toes for you too! I know how Scanxiety can tax the brain. 😁

It looks like you’re about a month out from the procedure. How are you feeling? Have you noticed a gradual increase in stamina and energy?

kirkwilliams2049 | @kirkwilliams2049 | Jul 6 10:19am

In reply to @loribmt "Welcome to Connect, @anthea29 Wishing you continued success with your CAR-T journey! A couple of our..." + (show)

I am actually 17 months from the procedure and am doing very well. I am in a clinical trial and my quarterly checkup with my oncologist is in August. I don't have my final(?) PET scan until February. There are no signs of relapse yet. I have/had a relatively rare type: histiocyte rich DLBCL. A study of 58 patients with this type was conducted a few years ago. All were treated with CAR-T. After 2 years 29% were still in remission. So here's to the odds! Living life and looking forward to the continuing ride.

anthea29 | @anthea29 | Jul 6 4:12pm

In reply to @loribmt "Welcome to Connect, @anthea29 Wishing you continued success with your CAR-T journey! A couple of our..." + (show)

Thanks!! I have been fortunate. Other than being really tired, especially the first couple of weeks post infusion, I have been pretty ok. Do have some joint (shoulder and hip primarily) pain, but nothing too awful.

4health4bonnie | @4health4bonnie | Jul 17 9:01pm

I was told yesterday that I am in remission! This is after having car t carvykti on March 26. I feel so good - better than I have felt since starting cancer treatment over a year ago. This is truly a miracle!

kirkwilliams2049 | @kirkwilliams2049 | Jul 17 9:47pm

That’s great! Remission is always the best part of cancer! When did you have your PET scan?

Lori, Volunteer Mentor | @loribmt | Jul 18 7:46am

In reply to @4health4bonnie "I was told yesterday that I am in remission! This is after having car t carvykti..." + (show)

“You’re in remission!” One of the most beautiful phrases to hear, @4health4bonnie. Congratulations for everything you’ve gone through to get to this point!

And High praise for CAR-T Therapy! I recall our earlier conversations about the procedure and the potential concerns. Your news is so encouraging and shows a promising treatment for MM!
Thank you for this update, Bonnie! You’ll never know how many people you’ve just encouraged by this report! ☺️❤️

kobe2026 | @kobe2026 | Jul 18 12:31pm

In first go round was stage 4, started with daily Venetoclax & 6 infusions of Obinutuzumab. Time 2021-2022, one year total to clear it up. Now in 2025 it has returned as of results of latest PET Scan 7/12, visited my oncologist on 7/17 to discuss results. It's not stage 4 but still very evident in lymph nodes. Will be starting zanubrutinib by month's end. Last thing to do get genetic blood test next week to verify no changes in chromosome sequences .

Thank God no infusions this time.

ONWARD

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