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

Welcome to the CAR-T Cell Therapy group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people who have experience with CAR-T cell therapy or are caring for someone on CAR-T cell therapy. There are so few people who have experience with this new cancer immunotherapy. Together we can learn from each other, support one another and share stories about living with cancer and coping with the challenges of treatment.

Let’s chat. Why not start by introducing yourself? When did you or your family start therapy? How are you doing today?

Interested in more discussions like this? Go to the CAR-T Cell Therapy Support Group.

I am 86 years old and recently diagnosed with Mycosis Fungoides. My dermatologist said I was in stage 1B
She suggested light therapy. Today, my insurance approved the treatment. My PCP has located a dermatologist who performs this treatment. I have scoured the internet trying to learn all I can about this disease. Let the adventure begin!

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@colleenyoung

@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.

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Yes, thankfully I’ve had lots of support. My husband the whole time and kids came and helped some as well.

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@planaria

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

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@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.

REPLY

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

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@gregolson

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.

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

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@esperanza3a

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.

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

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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.

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@grandpabob

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?

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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.

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@maryangelasmith

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

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

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@esperanza3a

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.

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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?

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