1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy
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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 Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

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Bob, Alumni Mentor | @grandpabob | Aug 17, 2023
In reply to @ronkampner "Bob, you are lucky that your IGG hovers around 400. Mine will keep dropping without the..." + (show)
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Bob, you are lucky that your IGG hovers around 400. Mine will keep dropping without the treatments Keep doing what works because that’s all we have. I am happy in my life right now and intend to stay that way. I have grandkids that insist I play golf with them. I have to stay this way. Haha. You too.

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Hi Ron, thank you for the information. I am so glad your grandkids are dragging you out to the golf course.

How are you shooting? Have fun.

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ronkampner | @ronkampner | Aug 18, 2023
In reply to @grandpabob "Hi Ron, thank you for the information. I am so glad your grandkids are dragging you..." + (show)
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Hi Ron, thank you for the information. I am so glad your grandkids are dragging you out to the golf course.

How are you shooting? Have fun.

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Well Bob, I’m shooting my regular 95-105. My 11 year old grandson beats me 70% of the time. My fault, I started him when he was 8. Very proud of him. 😃

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Bob, Alumni Mentor | @grandpabob | Nov 6, 2023
In reply to @peggybyses "Yes, I’m June 2023" + (show)
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Yes, I’m June 2023

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Hello @peggybyses - that is not long ago, how are you feeling?

I found that several months after therapy it was a real learning curve for my body to adjust while it mended.

So glad to hear you were able to receive this therapy.
Stay safe.

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peggybyses | @peggybyses | Nov 7, 2023
In reply to @grandpabob "Hello @peggybyses - that is not long ago, how are you feeling? I found that several..." + (show)
Profile picture for Bob, Alumni Mentor @grandpabob

Hello @peggybyses - that is not long ago, how are you feeling?

I found that several months after therapy it was a real learning curve for my body to adjust while it mended.

So glad to hear you were able to receive this therapy.
Stay safe.

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It has been tough. As someone said to me “you don’t know what tired is”. So true.
I have worked hard, physical therapy 2 a week, just starting a new program to go with that at hospital for cancer patients

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Bob, Alumni Mentor | @grandpabob | Nov 7, 2023

Oh so true Peggy. Glad to hear you are working at PT. I found it beneficial to eat super healthy when I was trying to regain strength and activity. Good luck with the new program.
What do you find the toughest?

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annberkowitz | @annberkowitz | Aug 29, 2025
In reply to @grandpabob "Hi Ron, to add to what you are saying, I will add a third process, in..." + (show)
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Hi Ron, to add to what you are saying, I will add a third process, in the hospital that treats me, their approach to the IVIG infusions is; as long as you are not getting infections, we will not treat you. My levels hover just below 400, I have not had an infusion in three years. I am super cautious around people and never knowingly have contact with people that are sick. So far that has worked for me. I am super happy for you that you get the treatments, I am envious to say the least, that aside, I am even more thankful that I was able to undergo the Car T treatment, it has added five wonderful years to my life and hoping for many more.
Thanks for your response.

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Interesting conversation re IVIG. I underwent CAR-T December 22 and am still C free at 2.5 years. It was rough but came out the other side just fine. My IgG, platelets and WBC are low as well as other immunity numbers. As of late I have been suffering from sinusitis, actually 6 months now. Nothing really works. I am wondering how low the numbers have to get before treatment? I would hate to come down with something minor and it get serious due to immunity issues.

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clea | @clea | Sep 30, 2025

My mother was diagnosed with DLBCL in the peritoneal area in February 2025. From March until August, she underwent first-line chemotherapy with the POLA-R-CHOP protocol.
We did a PET scan, and the Deauville score came out as 5. We are very scared, and in the meantime, we started a second treatment with POLA-R-DHAP.
Clinically, compared to the initial stage when she had abdominal pain, my mother is now more stable and with less discomfort. I would like a recommendation on whether we are on the right treatment path or not. One doctor recommended CAR-T therapy, but it is not available in the country where we live. Please help me 😢

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