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.

burchfield | @burchfield | Jul 28 1:11pm

In reply to @colleenyoung "@burchfield, can you believe it? Almost another whole week has gone by. How is your husband..." + (show)

He is doing great. He was discharged from hospital on Friday. Today's lab work was good. He has not had any adverse side effects so far. We are so thankful for his care team.

ntsimpson | @ntsimpson | Aug 26 9:33am

In reply to @sunillall "Hello CAR-T patients and survivors, I'm Sunil from Michigan. I was diagnosed with DLBCL in '23...." + (show)

@sunillall

Hello CAR-T patients and survivors,

I'm Sunil from Michigan. I was diagnosed with DLBCL in '23. I went through radiation and 6 cycles of R-CHOP. I rang the bell, went through IV methotrexate cycles, and after the last treatment, I was told I was in remission/cured. 6 months later, the cancer was back. My first symptom at the time was severe abdominal pain....later misdiagnosed as pancreatic cancer.
My memory of the next part is extremely hazy, but this is what my wife told me. I was approved for CAR-T. Went through counseling, chemotherapy, and radiation. T cells were harvested, modified, and infused back into me. This was done on December 18, 2023. A day later, I was in the ICU. Christmas Eve, I was put on a vent. I had a severe case of cytokine release syndrome (CRS). I had brain swelling, CMV viremia, Clostridium difficle infection...and many other symptoms etc.
After 1 month in the ICU, I was transferred to a step-down unit for a couple of weeks and finally released. I lost 40 lbs, couldn't walk, lost significant memory, and was severely depressed. For months, I had appointments with my doctor at the stem cell clinic 2x a week. Over the months, I've received blood transfusions, platelet infusions, IgG infusions, and shots to treat neutropenia. Since the beginning of the year, I've gone from not being able to walk without a walker/wheelchair to slowly walking 3 miles a day. The neuropathy and joint pain make exercising a challenge. I've started back to the gym to lift light weights, and I plan on going back to work after Labor Day. My memory regarding work is back to normal, but there are many things that I still don't recall, including all my time in the ICU and the step-down clinic. I forgot my father passed away and don't remember my children graduating from high school, college, and post-graduate programs. In the beginning, I even forgot I was married or how old my wife and children were. The months after I came home were dark days indeed.
It's been a tough journey, but I feel it was well worth it. I had a PET scan this week and see my oncologist in 2 days. If this latest PET is clear, I probably will be released from the stem cell clinic. I'm very anxious about getting the results of the PET scan and am trying to keep my mind from going down the dark path.
Thank you for allowing me to express myself.

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Thank you for sharing your story. It could not have been easy to relive it on this site.

barbarneson | @barbarneson | Oct 15 8:54am

Hello! My name is Barb. I am the wife of a CAR-T recipient. We are home (ND) for a short 2 weeks prior to heading back to Mayo for continued evaluation & transfusion of his "energized cells". I would appreciate any information I could use during these next days and time after cells are reintroduced.
Thanj You!

ntsimpson | @ntsimpson | Oct 15 9:21am

In reply to @barbarneson "Hello! My name is Barb. I am the wife of a CAR-T recipient. We are home..." + (show)

Good morning. There are three wonderful videos on the CLL Society website that were made by individuals who received CAR T treatment. The stories tell about their journey, which are all different, and offered some really incredible information. I am in the same situation right now. My husband is in a clinical trial in Toronto. He will get his new re-engineered cells on November 4. Every situation is completely different, but I felt that these videos were very helpful. I also connect directly with CAR T recipients, and talk to them on the phone. People that have gone through this procedure, treatment are very helpful and always willing to talk about their experience. As a caregiver, I hate that word, I don’t want to leave any stone unturned.

ntsimpson | @ntsimpson | Oct 15 9:25am

Barb,
If you want to reach me directly, by private message.
There are a few spouses of CAR T recipients online.

Colleen Young, Connect Director | @colleenyoung | Oct 15 11:47am

In reply to @barbarneson "Hello! My name is Barb. I am the wife of a CAR-T recipient. We are home..." + (show)

Welcome @barbarneson, I'm sure your team at Mayo Clinic directed you to this helpful resource for CAR-T caregivers.
- Caregivers for BMT, CAR-T, and Hematology https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/

Hearing from other caregivers to know what to expect really helps. @ntsimpson, I know that you offered to contact other caregivers personally, but I might suggest that by sharing here, you can help many.

I'm also bringing in fellow CAR-T caregivers like @burchfield @ntsimpson @charlenekeogh @raemark2010 @greta_k @valerie912 @smokie @ruttgerbay @sunnyd @gregolson to rejoin the conversation.

So, back to you, Barb. You mentioned that you and your husband are home for a 2-week break before heading back to Mayo Clinic for evaluation and transfusion of his "energized cells". You'd like to hear from other caregivers to understand more of what you can expect. Do I have that right?

SunnyD | @sunnyd | Oct 15 7:42pm

Hi Barb,

I was the caregiver to my mom who went through CAR-T (and a Stem Cell transplant, and every chemo you can imagine). I was there every step of the way and more than happy to help with any questions or thoughts. Fellow native ND gal myself 🙂

Dana (@sunnyd)🌻

kirkwilliams2049 | @kirkwilliams2049 | Oct 23 9:35pm

Just introducing myself to this group. I was diagnosed with DLBCL first in 2015 at age 65. I had 6 sessions of RCHOP to remission the following April. I relapsed last October, had 3 rounds of RGDP until CART therapy which completed in February. I was declared clear March 20. It has overall just proved to be an inconvenience with few side effects. Chemo isn’t fun but it is certainly tolerable, at least for me. This past week I met with a dermatologist to discuss an itchy rash that appeared about a month ago. We did a biopsy yesterday to determine the cause. He feels that there may be CART cell involvement. We will see. Happy to discuss details with anyone in this group.

Colleen Young, Connect Director | @colleenyoung | Oct 31 9:44am

In reply to @kirkwilliams2049 "Just introducing myself to this group. I was diagnosed with DLBCL first in 2015 at age..." + (show)

Welcome @kirkwilliams2049, I moved your introduction here:
- 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/
I did this so you can connect with other members who have experience with diffuse large B cell lymphoma (DLBCL) and/or CAR-T cell therapy, like @valerie912 @taichung0812 @grandpabob @secglc2 @annberkowitz @judyhelensmith2022 @gregolson @sunillall and others.

Any update on the rash? How are you doing?

kirkwilliams2049 | @kirkwilliams2049 | Oct 31 10:02am

In reply to @colleenyoung "Welcome @kirkwilliams2049, I moved your introduction here: - CAR-T Cell Therapy: Introduce yourself and connect with..." + (show)

Thanks Colleen - The rash is doing much better. Being treated with prednisone, betaderm and light therapy. Can't wait to get off the prednisone.

My dermatologist felt that there may be CAR-T involvement. Apparently, there are cutaneous cells in some people which have the CD19 marker which is the target of the CAR receptor. He biopsied and found no evidence of this.

Thanks for asking.

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