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 Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

Profile picture for Lori, Volunteer Mentor @loribmt

@hanya You are always such a bright spirit, Hanya! Your positivity is golden and as I’ve seen in my own life, it can be the driving force behind our survival! ☺️

Oh my gosh, I know it’s not funny but I couldn’t help chuckle with your comment about ‘your house and finances not being in order’…needing more time! Is there EVER enough time??? I’ve been through that myself. I’d always thought I was ‘fairly’ organized until leukemia hit out of the blue for me! Boom! Was in the hospital for 5 weeks the first time, with no certainty that I would return home.
My husband and I always had a tacit division of labor. He had his jobs and I had mine. Along with household issues, I also paid bills, fortunately through online checking. But husband had no clue of the utility accounts, passwords, etc. So here I was, plugged into my chemo in a hospital bed with my iPad, opening a new email account for bills only, so that my husband got the notifications, when to pay, etc. We are both organized in our own right, but when it came to merging our ‘jobs’ it was obvious we had a lot of work to do. I believe we are now better organized to the point where we’ve made it easier for our daughter to find pertinent paperwork/financials. But our house…le sigh…no matter how hard I try there is always excess somewhere!

When we’re not feeling well, the last thing we want to focus on is cleaning and prepping for the end. We should be enjoying our time on the planet! So whatever you feel you need to do, mete it out…set a timer and only do so much work at a time, devoting the rest of the day to focus on essentials and joyful moments.

Now, for that 2nd opinion on your health…if you’d like to make an appointment with Mayo Clinic, here’s a link to get you started!
http://mayocl.in/1mtmR63
There are 3 Mayo Clinic Campuses. Rochester, MN
Phoenix, AZ and Jacksonville, FL. They all have impressive hematology departments. I wouldn’t be here today without the amazing care I received in Rochester. So of course I’m a little biased. ☺️

Happy Thanksgiving to you and your family, Hanya. Hugs.

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@loribmt GOOD MORNING! Wednesday morning! Nov 19th
Had good appointment and decent CBC . Liver ok
All numbers stable not going down . Some even up by hairline 😍Next appointment on December with HEM/ONC PA . I CERTAINLY CHALLENGE HER TO LEARN AS MUCH AS POSSIBLE ABOUT MF ,
Treatments, and most advanced!
She reassured me she is there for my needs ! Very important to be able to access medical specialists!
I have been reading and re-
Reading medical information! I am driving distance from MASS GENERAL AND DANA FARBER , MSK AND OTHERS . My husband will drive me where I need and want to go !
Thanksgiving in a week from tomorrow! I will be thankful if I can go to my church on the day!!
My new friend I met on this forum , we have been privately chatting and there for each other!
I will be reading posts on this forum !
Enjoy THANKSGIVING

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At Mayo now. Had my CAR T infusion on Tuesday. Nurses signed a card wishing me a happy 2nd birthday.
So far I feel pretty good. I am 72 hours out and have only a slight fever. My ANC is low - which is to be expected.
I'm praying a lot and asking the Holy Spirit to protect and heal me. Doing some visual exercises as well. Imagining those receptors seeking out the cancer cells in my body and destroying them.

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Profile picture for floridaed @floridaed

At Mayo now. Had my CAR T infusion on Tuesday. Nurses signed a card wishing me a happy 2nd birthday.
So far I feel pretty good. I am 72 hours out and have only a slight fever. My ANC is low - which is to be expected.
I'm praying a lot and asking the Holy Spirit to protect and heal me. Doing some visual exercises as well. Imagining those receptors seeking out the cancer cells in my body and destroying them.

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@floridaed I am approaching my 2 year anniversary of my CAR T therapy in February. It was like magic! Interesting that you are “reaching out to your receptors” . In addition to CAR T, I did Ayurvedic healing with a guru in London (remotely). I see this as the same thing. I also meditate and use the energy that I acquire for healing. My motto is: Positivity is the best therapy.

I know you will do well. Good luck and best wishes! Oh and Merry Christmas!

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Profile picture for kirkwilliams2049 @kirkwilliams2049

@floridaed I am approaching my 2 year anniversary of my CAR T therapy in February. It was like magic! Interesting that you are “reaching out to your receptors” . In addition to CAR T, I did Ayurvedic healing with a guru in London (remotely). I see this as the same thing. I also meditate and use the energy that I acquire for healing. My motto is: Positivity is the best therapy.

I know you will do well. Good luck and best wishes! Oh and Merry Christmas!

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@kirkwilliams2049 Thank you for your wonderful message.
Merry Christmas to you.

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Profile picture for floridaed @floridaed

At Mayo now. Had my CAR T infusion on Tuesday. Nurses signed a card wishing me a happy 2nd birthday.
So far I feel pretty good. I am 72 hours out and have only a slight fever. My ANC is low - which is to be expected.
I'm praying a lot and asking the Holy Spirit to protect and heal me. Doing some visual exercises as well. Imagining those receptors seeking out the cancer cells in my body and destroying them.

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@floridaed Wishing you the best! Positivity does help. I trust you’ll be healed. Please keep us posted.

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