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 group.

@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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