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?

Interested in more discussions like this? Go to the CAR-T Cell Therapy Support Group.

@charlenekeogh

Good morning @beeclee
My 33 yr old son was diagnosed in July with CTCL\MF and is receiving light therapy as well. It has been very good for him. We found a dermatologist close to our home who has been such a help to my son mentally and physically. Generally we travel to NYC to Sloan but now he doesn't have to go monthly but every 3 months. Less Stress. There is so much to know and read about this disease/Lymphoma don't stress yourself out.
Enjoy life, every second of it.
I hope your light therapy treatments are going well.

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Thank you for your well wishes. I have had 18 treatments (3 a week) and some of my lesions have disappeared and the rest are receding. My main complaint is fatigue but that could be age related.

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@beeclee

I 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!

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Good morning @beeclee
My 33 yr old son was diagnosed in July with CTCL\MF and is receiving light therapy as well. It has been very good for him. We found a dermatologist close to our home who has been such a help to my son mentally and physically. Generally we travel to NYC to Sloan but now he doesn't have to go monthly but every 3 months. Less Stress. There is so much to know and read about this disease/Lymphoma don't stress yourself out.
Enjoy life, every second of it.
I hope your light therapy treatments are going well.

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My husband will most probably start a CAR T clinical trial in the next month. He has CLL. This will be his fourth treatment.

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@ntsimpson

Bruce,
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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Hi @ntsimpson, I can help with navigating the site. This article might help:
Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/
See more tips in the Help Center https://connect.mayoclinic.org/help-center/

Along with @elwoodsdad, I'm tagging a @grandpabob @maryangelasmith @vivian808 who also have experience with CAR-T celll therapy.

@ntsimpson, are you eligible to CAR-T cell therapy? Will you be starting treatment soon?

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@positibilitarian1

I 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?

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@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

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I 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?

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@colleenyoung

@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?

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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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@positibilitarian1

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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@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?

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@elwooodsdad

My name is Bruce/Elwoodsdad. I was diagnosed with Non Hodgkins large cell B lymphoma, Stage 4. It didn’t present with the traditional lumps, knots, night sweats, etc. I felt weakness in my hips and legs. I am 75 and figured my issues had more to do with age. I vetted a local oncology group, saw the doctor at 3:15, and was hospitalized by 8:30. I received my first R-Chop infusion the evening of 11/17. I have complete six infusions, but we still have evidence of lymphoma and liver issues. CAR-T is my next stop should I be deemed able to endure it. I am unapologetically fearful.

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Bruce,
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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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?

REPLY
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