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.

floridaed | @floridaed | Sep 28 12:40pm

Hi.
My double hit lymphoma (DLBCL) is active again in right psoas muscle. I didn't make it through all cycles of R-EPOCH, so my doctor says CAR-T is next. Preparation includes glofitamab.
Breyanzi is the CAR-T name.
Anyone have experience with this regimen?

kirkwilliams2049 | @kirkwilliams2049 | Sep 28 5:49pm

I relapsed in October 2023 and was treated with CAR T the following February. It was really a smooth ride compared with RCHOP and RGDP. I am still in remission and feeling great.

Best wishes and best of luck! And remember that positivity is the best therapy.

anthea29 | @anthea29 | Sep 29 12:53pm

In reply to @floridaed "Hi. My double hit lymphoma (DLBCL) is active again in right psoas muscle. I didn't make..." + (show)

@floridaed
Went through Breyanzi CAR-T this last June. It worked...so far! I am in remission. For me it was so much easier than the steam cell transplant. I had light chemo and some radiation as my bridge treatment. There can be complications with this regimen such as cytokine release syndrome (affects immune system) and neurotoxicity. I was very fortunate and did not have any issues. Let me know if you have any other questions regarding the experience. Good luck to you!!!!

floridaed | @floridaed | Sep 29 3:51pm

In reply to @kirkwilliams2049 "I relapsed in October 2023 and was treated with CAR T the following February. It was..." + (show)

@kirkwilliams2049
Hi Kirk. Thank you for the reply. Wow! That's great.
Are you still seeing the same doctor at Mayo for regular check-ups?

floridaed | @floridaed | Sep 29 3:56pm

In reply to @anthea29 "@floridaed Went through Breyanzi CAR-T this last June. It worked...so far! I am in remission. For..." + (show)

@anthea29
Hi Anthea. Thanks for getting back to me.
I've been reading about the potential side effects. Happy you made it through without issues.
If you don't mind me asking, which doctor has been treating you?

kirkwilliams2049 | @kirkwilliams2049 | Sep 29 4:45pm

In reply to @floridaed "@kirkwilliams2049 Hi Kirk. Thank you for the reply. Wow! That's great. Are you still seeing the..." + (show)

@floridaed I am actually in a clinical trial at the Cross Cancer Institute in Edmonton Alberta. I have been seeing the same oncologist since 2015 when I was first diagnosed - great guy!

hanya | @hanya | Oct 2 11:19am

In reply to @loribmt "Hehe I’m no angel…ask my husband!! 😇😂 It sounds like you’ve hit a sweet spot with..." + (show)

@loribmt
Good morning LORI ! It is oct 3 2025 ! I am actually at a beach enjoying the water air sound of waves gently rolling! One of my favorite places to spent time !!
Follow up on my situation
I did have BMB MIDdle OF SEPTEMBER! Got unfavorable results which I sort of expected because I know how I feel and I try to educate myself on my symptoms! Sadly I have
MYELOFIBROSIS PRETTY ACUTE ! New drug the PRECIOUS OJJAARA 200 !
Now seventh day ! At very beginning I did have two side effects! Neusea and
Loose painful bowels!
I am taking one gelcap of IMMODIUM ! WORKS GREAT BUT MUst BE TAKEN BEFORE DIARRHEA BIGINS ! So now no GI PROBLEMS
I TAKE ZOFRAN ONLY AS NEEDED! IMMODIUM AS PREVENTION!
ON OCTOBER 9th I am GOING TO A A COMPLETE ULTRASOUND OF ALL MY ORGANS!
On Oct 14 th CBC AND ALL OTHER LABS TO see seeSERWHAT IS HAPPENING INSIDE MY BLOOD !I did lots of reading about OJJAARA
ONE ISSUE WHICH CONCERNS ME IS POSSIBLE IRREGULAR HEART BEATS ?! At your pleasure time , see what you can dig up ? I certainly would appreciate it greatly
! Thank you LORI ! I hope you are blessed to stay healthy and strong for many many more years ❤️

Lori, Volunteer Mentor | @loribmt | Oct 3 9:23am

In reply to @hanya "@loribmt Good morning LORI ! It is oct 3 2025 ! I am actually at a..." + (show)

Hi, @hanya. What a great place to be…at the beach, enjoying the breezes and the water! In a month I’ll be doing the same! Can’t wait! ☺️

Sorry to hear your recent BMB showing a possible change in your myelofibrosis. Hopefully with the new medication the Ojjaara will help slow the progression.

You mentioned having some side effects of the medication, such as GI problems. Glad to hear you’ve gotten that under control. What a pain in the…well, you know! 😅

As for possible heart related issues. They are listed in possible side effects but from what I’m reading they’re not common. Certainly if you experience skipped beats or heart palpitations report that to your doctor immediately.

Possible side effects of meds have to be listed, even if they are not common. I know some of what we read can scare the bejeepers out of us! But we also have to weigh the benefits against the possible risks! In the case of MF, if you can prevent any further damage of the marrow and keep producing healthy blood cells then it is important to stay on the Ojjaara.
Best wishes for only good news with your upcoming tests! Will you please let me know what you find out? Hugs…enjoy the beach for me!

hanya | @hanya | Oct 3 11:24am

In reply to @loribmt "Hi, @hanya. What a great place to be…at the beach, enjoying the breezes and the water!..." + (show)

@loribmt
Hi ! I did enjoy the beach for a couple of hours ! I stroll for one and then rest for another hour! For me no rush !
I do have the GI ISSUES FIGURED OUT AND MY ROUTINE IS working!
I pray this stay like this
Also ! Pray that OJJAARA WILL HELP INCREASE MY BLOOD LEVELS !!
I read these post everyday so after my labs and results on the 14 th I WILL GIVE UP AN UPDATE!
Have good couple of weeks !
Thank you ! 🙏 I feel I have many friends on this site who understand me on some levels! Because I do not appear as if I am ill , I believe that even close friends whom I confide in , do not understand! I do not wear my pain on my sleeve !
Best wishes to all friends who have to endure these types of issues! ❤️

4health4bonnie | @4health4bonnie | 2 days ago

I just wanted to report that I am doing so well after my Car T Carvykti in March 2025. Its been six months, and I feel almost normal! I love not having any treatments. I am in total remission. I am starting IVIG infusions for my low IGG, but otherwise I feel so good. I am very grateful. It seems like a miracle!

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