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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.

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carolm25 | @carolm25 | May 27 8:19pm

In February ‘24, I was diagnosed in the Arizona Mayo Clinic with LDBCL in a progressive stage. I had little to no symptoms. I was 79. I was offered a trial of applying CAR-T as the first line therapy vs. the standard of 6 hits of chemo. Choosing the trial was apparently the right decision. I went through the steps in preparation for the infusion of my strengthen T cells including one hit of RCHOP chemo and several short hits prior to the trial hospitalization. The CAR-T infusion process (2weeks in the hospital included 5 days in ICU) took 16 days; and another 2 weeks in an intensive PT, OT, facility to regain my strength as most of that period I had been bed ridden although never in pain nor experienced any nausea.

I’m not sure if the rehab was part of the trial but my total month long process was definitely successful. My hematologist soon told me I was in complete remission. That was two years ago and the remission has been maintained. Fatigue was the biggest challenge but exercise was essential. Nearly two years later my immune system had/has not recovered enough though. Therefore, my hematologist has prescribed a series of once-monthly infusions to strengthen that. Next week will be my 2nd visit.

Three months ago I contracted a pneumonia which developed into severe sepsis. This latest illness has caused more impactful fatigue than the CAR-T. My hematologist thinks my low immune system allowed me to contract the pneumonia. Therefore I am currently recuperating from the combination of pneumonia and the sepsis. It is complex but am hopeful the infusions will restore my strength and stamina back to where I was one year after CAR-T. At my age of 81, I still feel optimistic more often than not and realize aging requires much more maintenance than my 60’s or 70’s to begin with. So, I’m working at enjoying my life at my best possible ability.

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Colleen Young, Connect Director | @colleenyoung | 2 hours ago
In reply to @carolm25 "In February ‘24, I was diagnosed in the Arizona Mayo Clinic with LDBCL in a progressive..." + (show)
Profile picture for carolm25 @carolm25

In February ‘24, I was diagnosed in the Arizona Mayo Clinic with LDBCL in a progressive stage. I had little to no symptoms. I was 79. I was offered a trial of applying CAR-T as the first line therapy vs. the standard of 6 hits of chemo. Choosing the trial was apparently the right decision. I went through the steps in preparation for the infusion of my strengthen T cells including one hit of RCHOP chemo and several short hits prior to the trial hospitalization. The CAR-T infusion process (2weeks in the hospital included 5 days in ICU) took 16 days; and another 2 weeks in an intensive PT, OT, facility to regain my strength as most of that period I had been bed ridden although never in pain nor experienced any nausea.

I’m not sure if the rehab was part of the trial but my total month long process was definitely successful. My hematologist soon told me I was in complete remission. That was two years ago and the remission has been maintained. Fatigue was the biggest challenge but exercise was essential. Nearly two years later my immune system had/has not recovered enough though. Therefore, my hematologist has prescribed a series of once-monthly infusions to strengthen that. Next week will be my 2nd visit.

Three months ago I contracted a pneumonia which developed into severe sepsis. This latest illness has caused more impactful fatigue than the CAR-T. My hematologist thinks my low immune system allowed me to contract the pneumonia. Therefore I am currently recuperating from the combination of pneumonia and the sepsis. It is complex but am hopeful the infusions will restore my strength and stamina back to where I was one year after CAR-T. At my age of 81, I still feel optimistic more often than not and realize aging requires much more maintenance than my 60’s or 70’s to begin with. So, I’m working at enjoying my life at my best possible ability.

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@carolm25, I'm just catching up with your story now. Pneumonia and sepsis are no walk in the park. Your optimism and gentle fighting spirit come throuh in your words.

How did the second infusion go last week? Are you noticing any positive effects yet? What brings your joy in life?

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