CAR-T: Opportunity to Connect

You have had a lot thrown at you. I know the feeling! Day four after CAR T and no reactions thus far. Just tired. 🥱 Happy to keep you updated. As a caregiver…I have been keeping my husband company in the hospital each day. And I will do so for his two weeks stay. I have set up a little office so that I can do my stuff, but be there to keep him company. Each day I bring a little surprise, a cereal he prefers, a cookie he likes, a softer towel! When you go through this, honestly, it’s a little things that matter most! One piece of advice that was given to me by another CAR T recipient, is always have something on the calendar for the future. There will be a future! We have a lovely transatlantic cruise booked for August and can’t wait. By then, my husband will be revaccinated and is looking forward to that trip immensely.

Hello NT,
Thank you for sharing your (and your husband’s) story.
My husband’s diagnosis of Richters Transformation came a few months after losing my dad to a 4 month battle with cancer and in the middle of downsizing, selling a house, building a house in another state and moving. Too many stressors going on at the same time. I am a think ahead, plan ahead person and learned during that time that I couldn’t think or plan my way out of anything, just had to hang on and ride the wave of each day. Thank you for the reminder of “One day at a time”!
Fortunately our new home is in St. Augustine, FL, and we transferred David’s care to Mayo in Jacksonville. It feels like we, too, are at the end of our options, I pray that CAR-T is the treatment for both our husbands to achieve complete remission. If you are willing to share, please let me know how he is doing.
Kindest Regards,
Denise

Hello Denise,
I am currently sitting in isolation with my husband at a hospital in Toronto, where he received his new re-engineered cells on Tuesday. Our options were limited when my husband (age 75) relapsed in January. In fact, we felt we were at the end of the line. We opted for a clinical trial. And while the wait was longer than we had anticipated, this new (and hopefully improved) CAR T treatment in Canada offers us hope. We know this won’t end the CLL, but we hope for more time, whatever that is. We have dealt with the ups and downs of CLL and different treatments for 13 years. My husband always seems to relapse after three years as his strain is aggressive. I’m not sure we ever lost hope. Though I must add, a caregivers role is as difficult as being the patient. Science is amazing. Medical science is changing every single day. We have been lucky to follow different treatments as they come available. I do a lot of research, I speak to experts around North America, I actively pull very valuable information from the CLL society website and connect with patients there. We have three different oncologists at three different hospitals, including Mayo. I have a new motto, one day at a time. This is difficult for me, because I’m always thinking ahead and trying to plan. I’ve had to slow down during this very long adventure. Remain positive, remain optimistic, and never lose hope for what might be.

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?

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.

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.

@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

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?

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

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