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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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Replies to "In February ‘24, I was diagnosed in the Arizona Mayo Clinic with LDBCL in a progressive..."

@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?