Has anyone else had Car-T as first line therapy for LDBCL?
Has anyone else had Car-T as first line therapy for LDBCL?
I was diagnosed with LDBCL early spring 2024 and took a trial offered at Mayo to try Car-T as first line therapy or the standard R-CHOP chemotherapy. I was 79 YO yet my hematologist assured me I was a healthy 79.
I had very little symptoms. Therefore my husband and I carefully reviewed the procedure and possible side effects of Car-T but ultimately decided on the trial vs standard chemotherapy. The trial required certain preparation procedures which were performed on outpatient basis. The procedure required one R-CHOP up front which helped reduce the amount of lymphoma by almost 1/2. After harvesting my T cells and waiting for their bioengineered return I was admitted to the hospital for the Car-T infusion. I was told early on that the trial would require 2 weeks in the hospital which I planned for. In my case they had me in ICU during the “cytokine storm”. I remember most of that period but not all. But I have never suffered even a hint of nausea or pain. Being bored and fatigued were the most negative experiences. I was very hungry eating large meals and drinking lots of protein supplement. The protein helped my strength in recovering from extreme fatigue. My doctor prescribed 2 weeks in an intense but excellent rehab facility. Sitting or lying down I felt perfectly normal. Walking was another matter - at first. But the PT rebuilt my strength and Homecare PT finished the recovery needed for complete independence. In the first followup appointment with my hematologist/oncologist I was diagnosed in complete remission. Two years later we have 6 month reviews per the trial.
Early this 2026 I was diagnosed in our Mayo ER with pneumonia and sepsis which was occurred because my immune system is compromised because of specific very low blood counts. My blood has not recovered enough from the Car-T. Since the pneumonia I have blood tests once per month to determine whether I need to strengthen my immunity with an infusion. I’ve needed it twice and one time was OK.
I have recuperated significantly since the pneumonia-sepsis event. I am also dealing with a previous Afib condition which returned with the pneumonia. We are discussing long term solutions for that with my Mayo cardiologist.
I had felt so much better by summer 2025 that my husband and I took a two week trip to friends and family. I felt on my way to a complete recovery. The pneumonia this spring though threw a wrench into my completed recovery.
Fatigue has been my main impact overall but the low immunity is another factor now, along with reoccurring Afib.
I am now 81 and give myself lots of space for a positive outlook. I never felt scared from the first day of the LDBCL diagnosis. My confidence has continued from research which satisfies my curiosity, as much as our confidence in our doctors at Phoenix Mayo Clinic.
Keeping up with research on Car-T therapy for more cancers is showing good results as well. This should increase our confidence as survivors even more.
Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.
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