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.

@esperanza3a

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.

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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?

REPLY
@grandpabob

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!

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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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@grandpabob

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.

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

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@maryangelasmith

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

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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.

REPLY

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.

REPLY
@esperanza3a

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.

Jump to this post

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!

REPLY

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

REPLY

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.

REPLY
@pgollinger

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.

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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.

REPLY
@colleenyoung

Thanks, @pgollinger. I look forward to your updates as you move through treatments when you're able.

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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.

REPLY
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