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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 CAR-T Cell Therapy Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 6 11:37am
In reply to @ntsimpson "Bruce, Did you have CAR T treatment? You’d be a year post treatment, or there about...." + (show)
@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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ntsimpson | @ntsimpson | Apr 6 10:56pm

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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charlenekeogh | @charlenekeogh | Apr 11 8:52am
In reply to @beeclee "I am 86 years old and recently diagnosed with Mycosis Fungoides. My dermatologist said I was..." + (show)
@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.

REPLY
1 reply
beeclee | @beeclee | Apr 11 11:12am
In reply to @charlenekeogh "Good morning @beeclee My 33 yr old son was diagnosed in July with CTCL\MF and is..." + (show)
@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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