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

@positibilitarian1, thanks for bringing this early trial results to my attention. Here's more info for anyone else interested:
- Preliminary Clinical Trial Results Show ‘Dramatic and Rapid’ Regression of Glioblastoma after Next Generation CAR-T Therapy https://www.massgeneral.org/news/press-release/clinical-trial-results-show-dramatic-regression-of-glioblastoma-after-next-generation-car-t-therapy

It's early days and shows data for 3 patients only, but hopeful.

Here's further information from Mayo Clinic advances as well:
New approaches to immunotherapy for glioblastoma https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/new-approaches-to-immunotherapy-for-glioblastoma/mac-20488153

@positibilitarian1, have you inquired if your daughter may be eligible for a current or future clinical trial?

Hello Everyone,
First time on the Mayo chat. My daughter has Glioblastoma. She is heading into her 5th year, which is a milestone with this disease. She was diagnosed at the age of 39. I won't get into all the details, but she is experiencing her third recurrence. Slow progression at this time. MGH (Mass General Hospital) had quite a breakthrough this week with Car-T. For GBM. Anyone have any insight on the trial?

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.

@planaria, I can imagine that you're freaked out about the unknown. As you know, every patient is different and everyone experiences CAR-T cell therapy differently. I'm tagging fellow members like @grandpabob @maryangelasmith @elwooodsdad @esperanza3a @pgollinger @henry55 to share how treatment was for them and the role of their caregivers.

Caregivers are integral to treatment. You may find it helpful to understand the role of caregivers in this information that Mayo Clinic wrote to help caregivers prepare.
- Caregivers for BMT, CAR-T, and Hematology https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/

Some of the information may be Mayo Clinic specific, but it can be a place to start and ask questions.

Planaria, Do you have someone who is able to commit to being your caregiver during treatment and after? Often people will have 2 caregivers to split the commitment.

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

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.