CAR-T: Opportunity to Connect

Thanks, Bob. I have a wonderful support system with a great wife and 3 grown daughters (2 with spouses).
I teach high school math, with no more than 3 classes per day. I’m not usually actively teaching more than 45 minutes to an hour tops per class. The rest of the day is spent one-on-one tutoring, grading, preparing future lessons, tests, etc.
My marrow biopsy finally came back and now the oncologist decided I need to be admitted tomorrow for 5 days of chemo. I think they had been treating this leukemia a little too casually from the blood tests, but now have gotten more urgent after seeing how rapidly it is spreading through the biopsy. I’ve been pushing for faster action all along as I remember how bad I got the first time. Hopefully I can get some more info on how the timeline for the T-cell therapy is coming along.

Darrin

Hello Darrin, I am so glad to hear you have a great support system, I found it so comforting to know that there was a group of people I could count on for help when I needed it which was often.

It is good that you have been advocating for yourself to get quicker action for your condition. When we are waiting for results and treatment, sometimes it seems there are as many twists and turns as a mountain road.

I wish you all the best during your Chemo treatments.

Please reach out at anytime.

Is your treatment centre a close to where you reside?

Bob

Hello Darrin, I am assuming you have completed your Chemo sessions at this time, i hope all went well for you. How are you feeling?

Do you have a date for the Car T treatment as yet?

Bob

Anybody has Richter's Transformation (a rare and very aggressive Diffuse Large B-Cell non Hodgkin lymphoma) with CAR T treatment? I'm in remission after targeted therapy. High risk for relapse so CAR T is the next treatment if relapse.
Betty

Hi All - Wanted to learn if anyone has experience of CAR-T or similar in LMD & BM that has been our latest development post TNBC BRCA2 METS in the past- please advise and thank you in advance

Hello @rohitkachroo - Welcome to Mayo Clinic Connect. I hope someone on Connect can help you with your question. The Car T treatment I had was for large B cell lymphoma. I am not aware of Car T being used for solid tumors as that is my understanding of what you are asking, though treatments change continually.

I would suggest asking your heath care providers who should be able to provide some information and guidance to you.

Are you, or someone you know currently undergoing treatment?

@rohitkachroo, it sounds like you or your loved one has triple negative breast cancer that has now metastacized to the brain (BM) and developed leptomeningeal disease (LMD). @grandpabob is correct that the use of CAR-T is still in the research stage for solid tumors.

I found this article
– CAR-T Trial for Triple-Negative Breast Cancer Under Way https://www.cancertherapyadvisor.com/home/news/conference-coverage/san-antonio-breast-cancer-symposium-sabcs/sabcs-2018/car-t-trial-for-triple-negative-breast-cancer-under-way/

Trials for CAR-T for TNBC are in early phases (phase 1) as yet.

Here is a recent article about promising research at Mayo Clinic for TNBC:
– Mayo researchers identify potential new treatment for subset of women with triple-negative breast cancer https://newsnetwork.mayoclinic.org/discussion/mayo-researchers-identify-potential-new-treatment-for-subset-of-women-with-triple-negative-breast-cancer/

You can find more clinical trials being conducted currently at Mayo Clinic for triple negative breast cancer here: https://www.mayo.edu/research/clinical-trials/search-results?keyword=triple%20negative%20breast%20cancer

My wife underwent CAR T Cell in the fall of 2022 for Acute Lymphoblastic Leukemia at UC Davis Medical Center. So far so good. I'm curious if other CAR T Cell patients have made life changes in activity levels and diet after their CAR T cell. I know nobody who has gone through this treatment or has even heard of the treatment. Her non cancer doctors have not even heard of it.

My husband’s “reprogrammed” cells will be re-infused in about two weeks. Since learning that his CLL had morphed into DLBCL, aka Richters Transformation, this past May, he has had two different courses of chemo (RCHOP and GEMOX) and is currently on an oral medication that will supposedly keep the lymphomas from growing/spreading. Yesterday’s PET scan revealed more tumors and existing tumors have increased in size.
As excited as I am for him to have CAR-T therapy, I am struggling with fear that this won’t work. I could use some words of hope from anyone who has been there.

Welcome to Connect, @denisej4032 Oh golly, this cancer journey your husband (and you) are on is quite a roller coaster ride, isn’t it? I can empathize. I went through similar with a different type of leukemia and a bone marrow transplant. We are fortunate to live in an era with these rapidly advancing, life saving treatments, are available. They offer hope!
There’s another discussion in the forum on CAR-T that’s a little more recent and active than this particular discussion so I’d like to introduce you to members, @sunnyd
@kirkwilliams2049 @ntsimpson @barbarneson @burchfield and many others who have either had CAR-T therapy or are caregivers.
They’ve all been talking about their experiences in this conversation:
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/
Click the link to post any questions or concerns you might have. I know they’ll jump right in to give you more detailed information.
With the change in your husband’s PET scan, did this treatment schedule change? Will he need more chemo before the CAR-T procedure and conditioning can begin?