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Has anyone else had CAR-T as first line therapy for DLBCL?
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.
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@carolm25, I appreciate your sharing your experience with the trial of CAR-T cell therapy as a first line treatment for diffuse large B-cell lymphoma (DLBCL).
It's also a good reminder of the precautions one has to take when one is immunoocompromised. I'm so glad you are in good hands at Mayo Clinic, Arizona.
For anyone considering a clinical trial for CAR-T cell therapy, what is one tip you would offer? Is there something you wish you had known?
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1 Reaction@colleenyoung thanks for responding.
My reason for choosing the trial of Car-T as the first line therapy was thinking that because it was immunotherapy it would not ruin my immune system as much as chemo. I do not have the information but I had understood chemo was very hard on the immune system. I am still learning about the advantages vs disadvantages of either, although I needed to make my choice rather quickly at the time and my hematologist assured me I was healthy enough to do either.
The Car-T trial was as a first line therapy vs chemotherapy. Because it has been over two years since my procedure there may be some statistics for comparison. Prior to the trial Car-T was used on patients after they had a relapse from using other therapies.
The trial required two weeks hospitalization for the process. It was important in case patients needed intensive attention which I evidently did because I was in the ICU for almost a week; although I didn’t remember much difference at the time I may have been sedated in the ICU. I learned more and still have questions as time passes. Bottom line is that the therapy wiped out my strength beyond anything I knew existed. The extreme fatigue was the worst part of the ordeal because it required an additional two weeks of intense PT in a rehabilitation facility - after the 2 week hospitalization.
I was also prescribed homecare PT which allowed independence.
So far I have no idea what the other trial patients experienced.
I was possibly the oldest @79 years of age in the trial of my clinic’s participants. I want to say though that the rehabilitation was excellent. I do feel deeply grateful that I am in remission. My frustration was the debilitating and some lingering fatique, that time lost, and the tough impact to my immune system which turned up as a pneumonia with sepsis earlier this spring. That has resulted in having infusions to improve my blood. I was prescribed four infusions since and needed only two so far which makes me optimistic.
I was grateful never feeling nauseated nor did I have any pain. In fact I had a stronger than normal appetite - at least when I wasn’t in the ICU which I later learned they had inserted a feeding tube. I was unaware of that until they removed it back in my regular room. So I wasn’t eating food obviously during that period but evidently sedated enough to not realize I had it in me. I have more questions as time goes by of that period. But it’s now been over two years that I have been in remission so that’s very important!
The Car-T process itself includes some chemotherapy up front to reduce the cancerous cells before they harvest the T cells. Therefore I completely lost my hair anyway.
I am not sure I would have tips for anyone choosing Car-T therapy AS FIRST LINE THERAPY since I have nothing to compare it to. I guess if there are anythings I would recommend are 1) taking as much protein before during and after the process; as well as 2) getting as strong physically as possible beforehand to restore your strength more quickly after the hospitalization.
I would also ask the hematologist about the loss of immunity with Car-T vs the standard chemo therapy recommended for LDBCL.
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2 ReactionsHello! I just completed CAR-T after eight rounds of DA – EPOCH and methotrexate. I have double hit DLBCL. It’s still early only 6 weeks out. But my recent PET scan and CT – DNA test were negative. Happy to answer any questions you might have.
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3 Reactions@dsmith6812 The “Negative” response is great news! My Car-T was given over 2 years ago as the KITE 1st line therapy trial for LDBCL My lymphoma was concentrated in the left side abdominal branch of lymph nodes. The cancer disappeared immediately and I’m still in remission. What is “double hit” mean? Was DA – EPOCH and methotrexate the first therapy you received?
If your Car-T is showing success now I have great confidence in your results long term!!
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2 Reactions@dsmith6812 I had DA-ERCHOP, I think that is right, I know the E was the key, it was a lot rougher than regular RCHOP. I was double hit too, I finished treatment in Sept of 2025 so far am in remission as of last week. Doing pretty good, will go to CAR -T if it comes back if they will give it to me at 82. The ECHOP wasn't as bad as I expected, my scan after my second treatment was clear. I had a total of four E CHOP treatments, one week in the hospital each time with 24 hour a day chemo for six days then two R CHOP on an out patient basis. I also would answer any questions anyone has.
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1 Reaction@dsmith6812, weclome. I echo @carolm25's congratulations and questions.
What does "double hit" DLBCL mean?
A couple more weeks have passed. How are you doing? Any tips you would offer?
@omalley, I extend a belated welcome to you. Great that you remain in remission and the CAR-T may be available for you should you need treatment in the future.
Can you explain "double hit"?
@carolm25 double hit refers to a more rare and aggressive form of DLBCL from two genetic rearrangements/mutations that showed up when they performed a FISH test from my biopsy. I had one round of RCHOP, but once the test came back, they switched me to DA – EPOCH followed by two rounds of methotrexate. When a new cancerous lymph node popped up just after treatment, they immediately decided on CAR-T. Post treatment PET and the ct-DNA test show I’m in remission. So today, I can say that I am cancer free.
Car-T is like a miracle!
So glad to hear of your remission too.
In What city do you live? My hospital is the Phoenix Mayo Clinic.
@colleenyoung I had Car-T over two years ago as part of a trial applying Car-T as a first line therapy vs chemotherapy first.
I’m still in remission and the trail will continue for years. So I am still hoping to hear from others who have had Car-T as their first line therapy to see how they are doing.
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