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CAR-T Cell Therapy: Introduce yourself and connect with others
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?
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Hi, I'm Planaria from Los Angeles. I'm 80 and suffer from post polio syndrome with severe scoliosis...have had joint and muscle pain all my life...... Since April, 2022, I have been diagnosed with rare, aggressive mantle cell Lymphoma and did a bout of chemo for 6 months, starting in June at the City of Hope, Pasadena.......The PET scan showed it was in remission after 6 months (instead of the predicted 18 months)...I am now consulting at the City of Hope, main campus, in Duarte, California. My oncologist, Dr. Tycel Phillips, is supposed to be an expert in mantle cell...... I hope so. Because my initial chemo was Bendamustine, (and Rituxan) evidently there is a bad reaction to the CAR T with the Bendamustine, so I need to wait a one more month until it leaves my body.....I am curious and a bit freaked about the side effects of this treatment. I am now on imbruvica (which has no side effect) and have developed lymphoma tumors in my eye, and my brain.....(right side and basal ganglia). Dr. Phillips wants to start CAR T in February and wants someone to stay with me in the hospital....not too sure what they need to do? Answer???? experience??? thanks so much for your support and information..., Planaria
@planaria, I can imagine that you're freaked out about the unknown. As you know, every patient is different and everyone experiences CAR-T cell therapy differently. I'm tagging fellow members like @grandpabob @maryangelasmith @elwooodsdad @esperanza3a @pgollinger @henry55 to share how treatment was for them and the role of their caregivers.
Caregivers are integral to treatment. You may find it helpful to understand the role of caregivers in this information that Mayo Clinic wrote to help caregivers prepare.
- Caregivers for BMT, CAR-T, and Hematology https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/
Some of the information may be Mayo Clinic specific, but it can be a place to start and ask questions.
Planaria, Do you have someone who is able to commit to being your caregiver during treatment and after? Often people will have 2 caregivers to split the commitment.
Yes, thankfully I’ve had lots of support. My husband the whole time and kids came and helped some as well.
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1 ReactionI am 86 years old and recently diagnosed with Mycosis Fungoides. My dermatologist said I was in stage 1B
She suggested light therapy. Today, my insurance approved the treatment. My PCP has located a dermatologist who performs this treatment. I have scoured the internet trying to learn all I can about this disease. Let the adventure begin!
Hello Everyone,
First time on the Mayo chat. My daughter has Glioblastoma. She is heading into her 5th year, which is a milestone with this disease. She was diagnosed at the age of 39. I won't get into all the details, but she is experiencing her third recurrence. Slow progression at this time. MGH (Mass General Hospital) had quite a breakthrough this week with Car-T. For GBM. Anyone have any insight on the trial?
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1 ReactionBruce,
Did you have CAR T treatment? You’d be a year post treatment, or there about. I’m finding some of the threads in this chat hard to navigate!
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1 Reaction@positibilitarian1, thanks for bringing this early trial results to my attention. Here's more info for anyone else interested:
- Preliminary Clinical Trial Results Show ‘Dramatic and Rapid’ Regression of Glioblastoma after Next Generation CAR-T Therapy https://www.massgeneral.org/news/press-release/clinical-trial-results-show-dramatic-regression-of-glioblastoma-after-next-generation-car-t-therapy
It's early days and shows data for 3 patients only, but hopeful.
Here's further information from Mayo Clinic advances as well:
New approaches to immunotherapy for glioblastoma https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/new-approaches-to-immunotherapy-for-glioblastoma/mac-20488153
@positibilitarian1, have you inquired if your daughter may be eligible for a current or future clinical trial?
I hope so. She is a Mass General patient. That is her surgeon in the photo. He is wonderful! There is so much research happening!
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1 ReactionI spoke to my daughter's Oncologist and this is what she had to say.
"Maciej Mrugala is a great and trusted colleague. Not, sure if they have something imminently available for patients, but it wouldn't hurt for you to connect with the team there to inquire about it!" How do I go about connecting with her?
@positibilitarian1, here is more info about Mayo Clinic neurologist Maciej M. Mrugala, M.D., Ph.D. https://www.mayoclinic.org/biographies/mrugala-maciej-m-m-d-ph-d/bio-20308903
You have a couple of possibilities
To inquire about an appointment with Dr. Mrugala, start here: http://mayocl.in/1mtmR63
To inquire about current research trials, you can also contact a research coordinator.
https://www.mayo.edu/research/clinical-trials
Cancer-related clinical studies questions
Phone: 855-776-0015