CAR-T Cell Therapy: Introduce yourself and connect with others

My name is Lynn, I’m 77 years old.
I had CarT cell therapy August 2023 at Methodist Hospitin San Antonio, Tx. I was in the hospital 23 days to monitor side effects.
I am in complete remission and slowly gaining back strength and endurance.
I am experiencing fatigue and muscle and joint pain. I hope this improves with time. I see a physical therapist once a week but it takes days to recover from a light workout.
Wishing you all the best.

To All
I was randomized to Car T in my trial. The trial is to compare Car T to VRd as an initial therapy for multiple myeloma. I had my Car T infusion on Oct 16. I was hospitalized for 10 days with one grade 1 fever. After being home for one day I fevered again and was hospitalized for 4 more days. Since then I’ve had no more CRS and no neuro-toxic reactions. I was returning to the cancer center every other day for bloodwork and evaluation. On the 11th of December I was changed to monthly observation. My monoclonal protein went to none. Not even a trace. My bone marrow biopsy still showed some plasma cells but no increase. I will have another bone marrow biopsy in January. I am hoping for MRD negativity. I am still immuno-compromised. So I stay home and don’t expose myself to others. My neutrophils are normal but my lymphocytes are still .28. This is as a result of the pre-infusion chemo. It is slowly getting better. I am scheduled to have all of my vaccinations in January. I feel great. I went to the driving range (empty) and hit balls yesterday and have been spending some time on the exercise bike. I’m a high risk myeloma patient due to a heavy tumor load at diagnosis and p17 del so getting to MRD negative will be encouraging. I am fortunate to be able to have this trial as an upfront treatment.

To All
I am in my 5th cycle of VRd. I took a 2 week break after cycle 4 to harvest stem cells for storage. I was able to complete the harvest in one 4 hour apheresis. I will be randomized for CAR T cell therapy as part of a clinical trial after my 6th VRd cycle. Velcade is causing severe constipation and neuropathy. I am treating the constipation with daily Miralax and Colace. This usually doesn’t work so I take RX Constalose every other day. It is pretty aggressive. The neuropathy is primarily in my feet. Worse at night but still manageable. I am taking gabapentin but I can’t tell if it is helping. My hands are still pretty good. Overall I’m doing ok. My m protein has dropped to .2. It was 2.56. So the chemo is working. I’ll update when I find out if I will be doing CAR T.

Hello Bruce, it appears you have a plan in place for next steps. Well done!

Bob,
Thanks for the note and update. The University of Oklahoma is about 100 miles away, and I know couple of people there who could be of help. I had a rather involved tumor removal at age 10 at Mayo, and it has served me well. I'm crowding 76 and still have similar misgivings which I had at age 10. I'm planning to make contact with the necessary players and see what the math problem looks like. Dealing with quarterbacking your own treatment plan, guesstimating the possible cost, etc...I'm going to ask for illumination by their social work committee at both places. They have likely already worked the problem.
Have a nice evening,
Bruce

Hi Bruce,
I’m 70. I had CAR T-Cell at Cleveland Clinic in Ohio. In Feb 2022. It was easier than RCHOP. The infusion takes a mere 15 minutes. Then you will be monitored for 10 days. I felt fatigued & slept a lot. No energy. Fear not, you can do this. Take good care of your body, eat nutritional foods & avoid sugar & junk food. But most of all, be strong, have faith and remember this is a journey & you can do this. Sending you good thoughts, prayers and blessings.

Thanks for your quick reply. It is a 10 hour trip, but I find comfort with Mayo. I had ear surgery at Mayo when I was 10. An amazing experience.

My name is Bruce/Elwoodsdad. I was diagnosed with Non Hodgkins large cell B lymphoma, Stage 4. It didn’t present with the traditional lumps, knots, night sweats, etc. I felt weakness in my hips and legs. I am 75 and figured my issues had more to do with age. I vetted a local oncology group, saw the doctor at 3:15, and was hospitalized by 8:30. I received my first R-Chop infusion the evening of 11/17. I have complete six infusions, but we still have evidence of lymphoma and liver issues. CAR-T is my next stop should I be deemed able to endure it. I am unapologetically fearful.

Hi Bruce,

My Car T therapy was performed at Mayo Rochester. The care I received there was wonderful as it was with my local cancer center, however, as in your case the local center did not provide Car T therapy at the time.

Have a great day Bruce.

Bob,
Meant to ask yesterday, can you share where your CAR T therapy was done?
Blessings,
Bruce