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.

kirkwilliams2049 | @kirkwilliams2049 | Aug 9 2:07pm

In reply to @aalietz "Thank you! So glad to hear that you are doing well. We are learning that the..." + (show)

Sounds like my exact reaction. They suspected that some of the B cells had migrated to the cutaneous level and that the modified T cells were interacting with them. The biopsy did not confirm.

kobe2026 | @kobe2026 | Aug 9 11:35am

Started Zanubrutinib about 1 1/2 week ago, last Thrusday had to go to emergency room because my side had stabbing plans like a chef knife going in. They kept my till Friday, ran various blood tests and smears, CT scan ,echocardiogram, chest X-ray. Bottom line inflammatory spleen caused by excess WBC PRODUCTION WHICH IS 86 AND SECOND TIME MEASURED 94. See my oncologist this Tuesday.
This is wild.

aalietz | @aalietz | Aug 9 10:34am

In reply to @kirkwilliams2049 "Sorry to hear about the neurotoxicity. I had CAR-T to remission about 18 months ago. I..." + (show)

Thank you!
So glad to hear that you are doing well.
We are learning that the medical professionals still have a lot to learn about long term effects of CAR-T.
My wife also had an itchy reaction about a month after infusion. She had what appeared to be numerous bug bites in various areas of her body. Her care team, who we feel are excellent, did not know why she had them.
We also are very cautious about her immune status.

kirkwilliams2049 | @kirkwilliams2049 | Aug 9 9:50am

Sorry to hear about the neurotoxicity. I had CAR-T to remission about 18 months ago. I had a full body rash about 12 months ago. After biopsy, they couldn't pin it down to CAR-T as a cause. I think there is high probability that this was the cause as I have never had that sort of thing before. I am 76. My immune system has not completely returned. My immunoglobulins are quite low and so are my red counts and hemoglobin. Having said that, my wife passed on a flu bug to me in the spring and we both recovered at the same time. So maybe these are just numbers. Other than that I am doing very well - golfing, gardening, camping. I do stay away from crowds, however, and still wear a mask when shopping. Hope the neurotoxicity is short lived. Best wishes! And remember: positivity is the best therapy.

aalietz | @aalietz | Aug 9 8:33am

In reply to @colleenyoung "Welcome @aalietz. I moved your post to the introduction thread of the Bone Marrow Transplant (BMT)..." + (show)

My wife had CAR-T therapy for Lymphoma cancer in her brain.
Her modified T cells were infused on May 20. She is now, 2-1/2 months later, experiencing symptoms of neurological toxicity.
I am interested in hearing from other CAR-T patients regarding their long term side effects.

Colleen Young, Connect Director | @colleenyoung | Aug 7 7:30pm

In reply to @aalietz "Looking for CAR-T treated patients and their experiences with subsequent side effect" + (show)

Welcome @aalietz. I moved your post to the introduction thread of the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy support group https://connect.mayoclinic.org/group/car-t-cell-therapy/

@aalietz, I look forward to learning more about you. Are you a candidate for CAR-T cell therapy?

aalietz | @aalietz | Aug 7 6:08pm

Looking for CAR-T treated patients and their experiences with subsequent side effect

anthea29 | @anthea29 | Aug 3 12:49pm

In reply to @loribmt "Hi @anthea29, I think we all get stuck in our own headspace for a time after..." + (show)

Thanks Lori! Wise advice. I have worked at keeping a positive attitude all along and do feel it has helped me with healing.

Returned on day 30 and will return to them on day 100 to BMT but visit my oncologist (or nurse practitioner) every week for now. They are all part of my team.

Lori, Volunteer Mentor | @loribmt | Aug 2 6:18pm

In reply to @hanya "HAHAHA 😂🤩I love the bus joke !! You are so right ! Thank you for encouraging..." + (show)

Anna, now you have me laughing! I think the member you’re referring to is @dirtycowgirl. Does that sound familiar? Her name made me smile too. Memorable!

While it’s fine to contact members with personal messages, keep in mind that we’re an online forum where information shared among the entire group can be helpful to so many people! Ope, now I sound like my 3rd grade teacher…if you have something to say, share it with the class! 😂. Well, you get the drift.
And watch out for those busses. 🤣

hanya | @hanya | Aug 2 3:23pm

HAHAHA 😂🤩I love the bus joke !! You are so right !
Thank you for encouraging and coming statements !! I am very much a realist! Like to know what the facts are but certainly believe that no doctor can predict how much time each of us is given !!
Lori I texted a friend on secure site but can not find if she responded! Maybe she chose not to share personal details! I gave her a brief rundown on what my experience was and is .
She stated she had PV WHICH DEVELOPED INTO MF ! She had a funny handle like cow poop or similar! Anyway, maybe I will run into the i formation!
I find that friends or families can not comprehend the impact of any of theses MPN BLOOD CANCERS OR MALIGNANCY
SO AGAIN !! Thank you so very kindly! Anna
If you come across any one who needs to connect with me , feel free to give them my information!💕anna

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