Did anyone undergo Car-T therapy for B cell lymphoma?

Posted by 2012lemi30 @2012lemi30, Aug 21, 2017

Did anybody on here undergo car-t therapy

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

@mena2020

Hello..Hope your husband continues to get better...Can you please tell me which Mayo Clinic location did your husband attend to? I went to Jacksonville once and it did not go so well.

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Rochester.

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@kevin_153

Hi, my name is Kevin. I have Follicular B­-cell non­Hodgkin's lymphoma. I am currently receiving TTI-622 by Trillium Therapeutics, an experimental drug clinical trial. They are trying to extend me into the Allogene Car T Cell trial on August 11, 2019. I am going through the Colorado Blood Cancer Institute in Denver. I have had several treatments since 2015, including R-CHOP and RICE chemotherapy and an autologous stem cell transplant (at CBCI). I relapsed from my stem cell transplant within 10 months. Everything seems so surreal to me. I am scared and feel somewhat lonely. It helps reading about other people's journey on this site. This is the first time I have accessed information in this manner. Kevin

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Hi Kevin, my name is Cindy & on 2/2/22 I was just diagnosed with non Hodgkin Lymphoma, I had no idea a skin sore could be a blood disease. How long have you been Know of your lymphoma.?

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@cindycoult, Welcome to Mayo Clinic Connect Cindy, I see this is your first post, there is a large group on Mayo Connect that is willing to help answer your questions and are willing to share their experiences.
I have added a link to the blood cancer group on connect below, you may find this group has more answers to your questions, feel free to re-post there as well.

https://connect.mayoclinic.org/group/blood-cancers-disorders/

How long have you had the skin sore?

I encourage you to reach out at anytime.

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@cindycoult

Hi Kevin, my name is Cindy & on 2/2/22 I was just diagnosed with non Hodgkin Lymphoma, I had no idea a skin sore could be a blood disease. How long have you been Know of your lymphoma.?

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Hi Cindy, I add my welcome. How are you doing? Do you know what treatment you'll need, if any?

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Hello. I had CAR-T in February this year (2022) and I had cytokine release toxicity as well as neurotoxicity. I was very sick for quite some time & I still suffer bone pain, fatigue & muscle weakness…
My cancer was DLBCL & I am in remission now. I had undergone 16 months of chemo/radiation/methotrexate/more high dose chemotherapy and I never had any luck at all. Therefore I was eligible for CAR-T (yescarta)

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@judyhelensmith2022

Hello. I had CAR-T in February this year (2022) and I had cytokine release toxicity as well as neurotoxicity. I was very sick for quite some time & I still suffer bone pain, fatigue & muscle weakness…
My cancer was DLBCL & I am in remission now. I had undergone 16 months of chemo/radiation/methotrexate/more high dose chemotherapy and I never had any luck at all. Therefore I was eligible for CAR-T (yescarta)

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Hello, Judy Congratulations on your CAR-T transplant. You’re on the cutting edge of science. It’s fascinating, isn’t it? (More so if you didn’t have to go through that!). Having had the procedure in February, you’re still pretty early in your recovery so I hope you start feeling much better over the next several months. It takes time to rebuild your body and your life after the disease, the rounds of chemo and your reaction to the CAR-T therapy.

I’m so happy to hear you’re in remission. What an amazing feeling that is. A reward for all you’ve gone through this year!
I had AML and we’d talked about CAR-T but I wasn’t eligible for that therapy so I had a bone marrow transplant. May I ask what your follow up treatment is like? Are you on any medications?

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@judyhelensmith2022

Hello. I had CAR-T in February this year (2022) and I had cytokine release toxicity as well as neurotoxicity. I was very sick for quite some time & I still suffer bone pain, fatigue & muscle weakness…
My cancer was DLBCL & I am in remission now. I had undergone 16 months of chemo/radiation/methotrexate/more high dose chemotherapy and I never had any luck at all. Therefore I was eligible for CAR-T (yescarta)

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Hello Judy,
I am so glad the hear that you had the opportunity to be treated with Yescarta. I like you had Yescarta treatment, I was infused in August of 2018 for large B Cell Lymphoma that would not react to any of the more common treatments. It sounds like our post treatment symptoms may be somewhat similar. My toxicity levels were very high as well, I spent 1 week in the ICU and another in the hospital recovering. Fatigue, muscle weakness, skin irritation lasted well over a year. (I was 62 years old at the time which could reflect on the length of recuperation.) I struggled with my appetite for quite some time. I found that eating a high protein diet helped.
How is your appetite?
Take care in your recovery.
Bob

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@grandpabob

Hello Judy,
I am so glad the hear that you had the opportunity to be treated with Yescarta. I like you had Yescarta treatment, I was infused in August of 2018 for large B Cell Lymphoma that would not react to any of the more common treatments. It sounds like our post treatment symptoms may be somewhat similar. My toxicity levels were very high as well, I spent 1 week in the ICU and another in the hospital recovering. Fatigue, muscle weakness, skin irritation lasted well over a year. (I was 62 years old at the time which could reflect on the length of recuperation.) I struggled with my appetite for quite some time. I found that eating a high protein diet helped.
How is your appetite?
Take care in your recovery.
Bob

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Hello Bob - my appetite was only bad while I was in hospital - I lost 10 kgs in 4 weeks. I was also put on a high protein, high energy diet & I still use Sustagen as a meal replacement from time to time.
I was prepped for icu but pulled through at the last minute. I’d spent my first months of treatment in Darwin (1000 kilometres) at the top end of the Northern Territory and then because nothing worked on my NHL - DLBCL I was referred to Melbourne and the Peter MacCallum cancer centre in January this year.
I live in Alice Springs, Central Australia so a long way to travel both times. I hadn’t lived in my home for nearly two years 😢

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@judyhelensmith2022

Hello Bob - my appetite was only bad while I was in hospital - I lost 10 kgs in 4 weeks. I was also put on a high protein, high energy diet & I still use Sustagen as a meal replacement from time to time.
I was prepped for icu but pulled through at the last minute. I’d spent my first months of treatment in Darwin (1000 kilometres) at the top end of the Northern Territory and then because nothing worked on my NHL - DLBCL I was referred to Melbourne and the Peter MacCallum cancer centre in January this year.
I live in Alice Springs, Central Australia so a long way to travel both times. I hadn’t lived in my home for nearly two years 😢

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Hi Judy, - I am going to consider you very strong of character, allow me to “tip my hat to you.”Being away from home for that length of time undergoing treatment is no small feat! I hope that you have had family and friends that have been able to support you both close by and from a distance. Car T was not yet available here in Canada when I was treated, the logistics of it all were a problem, however not to the degree I expect you encountered.

Are you scheduled to have scans soon to review the progress of the treatment?

If you celebrate a holiday this time of the year, Happy Holiday. Please keep in touch as there is always someone on connect to listen.

Bob

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@annmillercarr

CAR-T Immunotherapy is the newest treatment for some leukemias and for non-Hodgkin lymphoma. A good overview can be found on the National Cancer Institute website:

https://www.cancer.gov/about-cancer/treatment/research/car-t-cells

and on the Mayo Clinic page for CAR-T

https://www.mayoclinic.org/departments-centers/car-t-cell-therapy-program/home/orc-20404317

Copy and paste each in your browser to find out more.

My husband had this procedure in May-June 2018. It's very rough, but it worked for him. CAR-T is, as I understand, is not a first option treatment. Before his CAR-T, my husband had exhausted every other treatment option, including R-CHOP chemotherapy (in our city) and an autologous stem cell transplant (at Mayo). But his cancer, T-Cell Rich B-Cell non-Hodgkin Lymphoma, returned, and he was considered terminal in March 2017. But CAR-T passed clinical trials and was approved as a treatment by the FDA that autumn. After CAR-T, however, he is now in remission. Not all patients are eligible for CAR-T. Luckily, my husband's cancer advanced very slowly, and he was still asymptomatic and feeling find, with no other underlying health issues (diabetes, heart disease, etc.) when we went to Mayo's for the pre-tests. A patient must undergo a battery of pre-tests to ensure he or she can withstand the serious, but temporary, neurological and other side effects and the stress the treatment inflicts on the heart, kidneys, liver, etc. My husband had these serious side effects, but none was permanent. CAR-T treatment lasts about eight weeks, including, most often, one to two weeks of in-patient hospitalization when the side effects happen (usually very shortly after the T-cells are reinfused). If the patient is not hospitalized, he or she must go to outpatient clinic every day to be monitored over the course of the treatment. To undergo the CAR-T treatment, a patient must bring along a caregiver who is willing to assist in every way possible and observe the patent--24 hours a day. (Believe me, this was needed!) When the patient returns home, there is usually a week or two of recuperation before the patient feels like returning to work for a sendentary job (like my husband's). This recuperation would be longer if your had a job that required more physical or strenuous work. Also, the patient must return to Mayo's every three months or so for follow-up PETs and blood tests for a year and more. My husband was treated at Mayo's. I can't recommend Mayo's enough. The CAR-T team--everyone from doctors, physician assistants, nurses, physical and occupational therapists, well--everybody!!--was stellar. We will never forget the wonderful people we met. They are the very best!

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How is your husband doing? Is Rich in T-Cell Rich B-Cell non-Hodgkin Lymphoma so called Richter's Transformation? I have been looking for patients with Richter's but could not find any. I'm in remission for both CLL and Richter's. High risk for Relapse. Plan to try CAR-T if relapse. Would love to contact you if possible.
Thanks!

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