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

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

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.

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!

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.

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.

Car T does work well in many cases, unfortunately as you mention, not in all cases. Given that it tends to be a last line of treatment, it certainly gives a better life to many.

I understand what you mean by low blood levels, mine are extremely low, I am told that this will be my normal going forward.

Are you receiving IGG infusions periodically to bring those levels back up from time to time?

I receive IvIg montly and still get platelets and blood infusions as needed. I still have half my collected red cells from transplant 6 years ago. I’ll have those infused next month with hopes of jump starting better CBC results.

My wife had Yescarta in June for refractory single hit DLBCL after successful R-CHOP and consolidative radiation last year and Polar-R immunotherapy as a bridging treatment. We are happy to report that her roughly 6 month CT last week is still clear of any disease. Her 90 day PET/CT was also clear and she has been deemed in remission since the 90 day scan. And up until this week's labs, her WBC and Neutrophils just haven't been cooperating but are now at the highest since before her apheresis and CAR-T. Still, she's immunocompromised and needs to be careful and does experience muscle/joint aches and pains but exercise, stretching and a cortocosteroid shot in her left shoulder have helped somewhat. Is still on the mend but has been able to be physically active for a few months now just maybe a little less than her old self. It's turning out to be a great ending to a tumultuous year.