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

ntsimpson | @ntsimpson | Feb 6 8:02pm
In reply to @bikerider2025 "Thank you for your story, I will be at PMH commencing on February 15." + (show)
@bikerider2025

Thank you for your story, I will be at PMH commencing on February 15.

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Are you in a trial or a regular CAR T treatment? How long are you going to be in the hospital? I ask, because the diet provided in the hospital is outrageously poor. I needed my husband to get healthy calories and I literally started bringing his meals into the hospital. He was in for 15 days. The food was literally the only complaint I had. Everything else about PMH is phenomenal.

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bikerider2025 | @bikerider2025 | Feb 6 8:59pm

I’m in for regular CAR-T , I will be at PMH for 10 days and then released to a nearby condominium for another 15 days. My wife will be my caregiver when I get released from hospital. I am very worried about my diet.

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1 reply
Bob, Alumni Mentor | @grandpabob | Feb 7 3:49pm
In reply to @bikerider2025 "Hello everyone, I am from Canada A town just north of Toronto and last summer I..." + (show)
@bikerider2025

Hello everyone, I am from Canada A town just north of Toronto and last summer I was diagnosed with Non-HODGKINS lymphoma and Large Diffuse B Cell Lymphoma, right in the middle of marathon training to have qualified for Boston. For the most part R-CHOP chemo was successful in Most of my body, but it was not successful in my hip and groin area. I qualified for CAR-T in December , had my cells extracted on January 20 and and I begin my treatments on February 15. As some of you may know, CAR-T is a second line of defence up here in Canada. What I am really struggling with right now is what type of diet to commence on the 15th and onwards, do I follow a strict keto diet or do I take the pesco vegetarian route? All the research I’ve done seems to be pretty much split in the middle, The keto crowd saying that all the carbs in the PVG will cause a glucose rise and cancer loves glucose. Where the PVG crowd is totally anti Keto. Prior to my diagnosis, I was very successful in maintaining my fitness level and my weight on a Mediterranean diet. If anyone has stories that combine a certain type of diet and lymphoma with CAR-T treatment, I would be very interested.

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I had Car T for the same cancer. I also was very fit. I did not waste my time on any specific diet. I ate a well balanced meal supplemented by a bit of extra protein. Worked great.

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nvorias1 | @nvorias1 | 6 days ago

My name is Nancy haven’t started therapy yet getting ready to sign the paperwork

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nvorias1 | @nvorias1 | 6 days ago

How do you feel through this process

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nvorias1 | @nvorias1 | 6 days ago

I’m very nervous I resorted anxiety meds I’m just not sure

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ntsimpson | @ntsimpson | 6 days ago
In reply to @bikerider2025 "I’m in for regular CAR-T , I will be at PMH for 10 days and then..." + (show)
@bikerider2025

I’m in for regular CAR-T , I will be at PMH for 10 days and then released to a nearby condominium for another 15 days. My wife will be my caregiver when I get released from hospital. I am very worried about my diet.

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PMH has dieticians to help with food choices. This is helpful if you don’t have someone to bring in food everyday. If your wife is with you daily, there is the opportunity to bring in healthy food. You’ll be on the cell ward (floor 15). A fridge and microwave available! You’ll be fine!

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1 reply
ntsimpson | @ntsimpson | 6 days ago
In reply to @nvorias1 "My name is Nancy haven’t started therapy yet getting ready to sign the paperwork" + (show)
@nvorias1

My name is Nancy haven’t started therapy yet getting ready to sign the paperwork

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You are having CAR T? I’m happy to report, my husband is doing better today (3 1/2 months since his CAR T) than he has for years. A new lease on life. Plays tennis every day and back to hiking. His treatment has been miraculous. He didn’t have any other options left and is so happy CAR T was available. He was/is in a clinical trial. The actual process - getting the re re-engineered cells - was easy. They drip in and it takes an hour! There are, however, lots of prep appointments and procedures before you get your improved cells. Amazing science!!

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kirkwilliams2049 | @kirkwilliams2049 | 6 days ago
In reply to @nvorias1 "My name is Nancy haven’t started therapy yet getting ready to sign the paperwork" + (show)
@nvorias1

My name is Nancy haven’t started therapy yet getting ready to sign the paperwork

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"Complete Metabolic Response" are my 3 favorite words in oncology. I just had my 1 year PET scan after CAR T on Thursday. It is magic! I had relapsed and there was a node on my duodenum that would not respond to chemo. So I was put on a CAR T clinical trial. 30 days later I was clear. I know the side effects can be scary but they are very low probability. They kept me in hospital for 2 weeks for observation. And they know how to fix whatever happens to go wrong. In my case that was nothing. If fact, I learned a new(to me) programming language when I was in there. So do what you need to do and get on with your life. Please take my best thoughts and best wishes for a prompt recovery with you!

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1 reply
bikerider2025 | @bikerider2025 | 6 days ago
In reply to @ntsimpson "PMH has dieticians to help with food choices. This is helpful if you don’t have someone..." + (show)
@ntsimpson

PMH has dieticians to help with food choices. This is helpful if you don’t have someone to bring in food everyday. If your wife is with you daily, there is the opportunity to bring in healthy food. You’ll be on the cell ward (floor 15). A fridge and microwave available! You’ll be fine!

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Thanks for the reply, she won’t be there everyday but most days.

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