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

Hi Lynn, I'd like to add my welcome. You may also be interested in this related discussion:
- CAR-T cell Therapy: Joint and muscle pain
https://connect.mayoclinic.org/discussion/joint-and-muscle-pain-1/
What helps you recover after a light workout? Rest? Pacing yourself?

Hi Bob,
I follow your regiment except for yoga. My bone marrow was 97% impacted with myeloma cells by the time I received carT my bones are weakened. I fractured two lumbar vertebraes as result so yoga is out. Surgeons packed them with med cement and that has worked pretty well. I walk about 2 miles a day and adding more steps.
It amazes me that 3 months post treatment there is zero evidence of myeloma. This treatment is a wonder. My blood counts are still low as there are still CarT cells at work attacking good cells but that will slow down eventually. Everyone has a different response to CarT.

Yes, I have to be here 30 days after day 0 of CAR T-Cells.

Hello Mary, I am so glad to hear thatCar T is expanding through trials, it would be wonderful if it worked for all cancers.
I had my treatment in Rochester as well, i feel you are in great hands.
Hopefully others on this platform will weigh in with their experiences as well.
When I had the treatment some years ago, I had to be within a few minutes of the cancer centre for 45 days, is this still the case?

Take care.

I would be interested in hearing about research or clinical trials about CAR-T therapy for AML. It is a difficult problem, but there is research on it.

I saw a blog post about it on https://www.cancer.gov/news-events/cancer-currents-blog/2023/universal-car-t-cell-blood-cancer

I have relapsed AML, so that is why I am looking at exotic treatment possibilities.

Hello Lynn, I had Car T 5 years ago, I am 68 years old. I am so glad to hear that you are progressing so well. My experience at 4 months out sounds very similar to yours. Fatigue, muscle and joint pain still dodge me today, though not as bad as earlier, given it has been 5 years I am reluctant to point the finger at Car T. From my experience, I suggest you are doing the correct things to get your strength back. What I feel worked for me was to insure I ate very healthy, small portions often, exercise as able, incorporate some yoga if you can and most importantly rest whenever you need to. (Don’t worry about having a quick rest or nap anytime, I still do.)

What do you find alleviates the muscle pain.

Keep up the great work!

Hello,

I was infused with CAR-T Cells this past Monday, 12/11, at Mayo in Rochester. I am doing the trial for the colon rectal therapy.

So far no side effects and getting discharged tomorrow, 12/18.

Would love to hear from others if you’ve done this new trial.

Of course, hoping/praying it works.

Mary

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.