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

Hi, I'm Planaria from Los Angeles. I'm 80 and suffer from post polio syndrome with severe scoliosis...have had joint and muscle pain all my life...... Since April, 2022, I have been diagnosed with rare, aggressive mantle cell Lymphoma and did a bout of chemo for 6 months, starting in June at the City of Hope, Pasadena.......The PET scan showed it was in remission after 6 months (instead of the predicted 18 months)...I am now consulting at the City of Hope, main campus, in Duarte, California. My oncologist, Dr. Tycel Phillips, is supposed to be an expert in mantle cell...... I hope so. Because my initial chemo was Bendamustine, (and Rituxan) evidently there is a bad reaction to the CAR T with the Bendamustine, so I need to wait a one more month until it leaves my body.....I am curious and a bit freaked about the side effects of this treatment. I am now on imbruvica (which has no side effect) and have developed lymphoma tumors in my eye, and my brain.....(right side and basal ganglia). Dr. Phillips wants to start CAR T in February and wants someone to stay with me in the hospital....not too sure what they need to do? Answer???? experience??? thanks so much for your support and information..., Planaria

So glad the hear Greg. Thanks for sharing on the joints and aches.

Most excellent, forward progress is all one can ask for.

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.

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.

That is great, being close by the treatment center is very important.

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?

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.