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.

@dazlin

Can anyone explain the difference between Reactive and Predominant lymphoid nodules?

Jump to this post

Sorry--We would love to be able to help you, but this is a patient support group. We are not licensed medical professionals, and therefore are not qualified to answer your question. (And even if some of us may know the answer, we should not answer it on this forum.) Your question should be answered by a physician, specifically a hematologist/oncologist. If you are being treated for a lymphoma, you can ask your own hematologist/oncologist. Or perhaps Lisa, our moderator, can direct you to a Mayo Clinic medical professional who is qualified to answer your question.

REPLY
@annmillercarr

Sorry--We would love to be able to help you, but this is a patient support group. We are not licensed medical professionals, and therefore are not qualified to answer your question. (And even if some of us may know the answer, we should not answer it on this forum.) Your question should be answered by a physician, specifically a hematologist/oncologist. If you are being treated for a lymphoma, you can ask your own hematologist/oncologist. Or perhaps Lisa, our moderator, can direct you to a Mayo Clinic medical professional who is qualified to answer your question.

Jump to this post

Oh, sure...not a problem. I asked because I read a post here about a patient with Predominant. Thanks!

REPLY
@dazlin

Oh, sure...not a problem. I asked because I read a post here about a patient with Predominant. Thanks!

Jump to this post

Really wish we could help, but it is not wise to be "practicing medicine without a license" on a forum like this. LOL! We are wishing you the best and hope you find a medical professional to answer your question soon.

REPLY
@annmillercarr

Really wish we could help, but it is not wise to be "practicing medicine without a license" on a forum like this. LOL! We are wishing you the best and hope you find a medical professional to answer your question soon.

Jump to this post

@ann...not a big deal.
I didn't mean for anyone to go out of guidelines. Was simply a vocabulary definition...which I could easily Google...no concerns. Wishing you and your husband the very best! Have a great day!

REPLY
@dazlin

@ann...not a big deal.
I didn't mean for anyone to go out of guidelines. Was simply a vocabulary definition...which I could easily Google...no concerns. Wishing you and your husband the very best! Have a great day!

Jump to this post

Easier said than done actually, @dazlin. Google returns few clear, plain language answers regarding the definitions of "reactive and predominant lymphoid nodules". Here's an extensive article from Science Direct on
- Lymph nodes https://www.sciencedirect.com/topics/neuroscience/lymph-node

Additionally I found the following:
"Nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL) is a type of lymphoma that develops from abnormal B lymphocytes (B cells, which are a type of white blood cell). NLPHL is not very common – around 1 in 20 cases (5%) of Hodgkin lymphoma are NLPHL."
In this case predominant means that lymphocytes are the predominant cell type.

What Are Reactive Lymph Nodes? https://www.healthline.com/health/reactive-lymph-node

I'd be interested in hearing how your hematologist explains these terms to you. Please let us know.

REPLY
@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

Jump to this post

@kevin_153, here are a few additional resources should you be interested in researching a bit more about CAR-T trials at Mayo Clinic or a potential second opinion:

- Clinical trials at Mayo Clinic search, https://www.mayo.edu/research/clinical-trials
- If you are interested in inquiring about a potential second opinion at Mayo Clinic, http://mayocl.in/1mtmR63
- Mayo Clinic's CAR-T cell therapy homepage, https://www.mayoclinic.org/departments-centers/car-t-cell-therapy-program/home/orc-20404317

@kevin_153, you mentioned that you relapsed from your stem cell transplant within 10 months. Many members have inquired about the process of undergoing a stem cell transplant, even though you relapsed, are you comfortable sharing your overall experience with your autologous stem cell transplant?

REPLY

My son received CAR T Cell Transplant 11 mo ago.
He is still cancer free. He is well, but gets very tired.
Does anyone else have this problem? Barb

REPLY
@smokie

My son received CAR T Cell Transplant 11 mo ago.
He is still cancer free. He is well, but gets very tired.
Does anyone else have this problem? Barb

Jump to this post

I am 11 months in as well tiredness has long past for me. Did a lot of exercise to help me get past that.

REPLY
@JustinMcClanahan

@kevin_153, here are a few additional resources should you be interested in researching a bit more about CAR-T trials at Mayo Clinic or a potential second opinion:

- Clinical trials at Mayo Clinic search, https://www.mayo.edu/research/clinical-trials
- If you are interested in inquiring about a potential second opinion at Mayo Clinic, http://mayocl.in/1mtmR63
- Mayo Clinic's CAR-T cell therapy homepage, https://www.mayoclinic.org/departments-centers/car-t-cell-therapy-program/home/orc-20404317

@kevin_153, you mentioned that you relapsed from your stem cell transplant within 10 months. Many members have inquired about the process of undergoing a stem cell transplant, even though you relapsed, are you comfortable sharing your overall experience with your autologous stem cell transplant?

Jump to this post

The overall experience was good. There were some very tough days. However, I tried to remain active every day I was in there. I would walk laps no matter how bad I felt. The day my ANC was zero is etched into my memory forever. I did an on-line course while I was in the hospital for a month. It helped to keep me distracted. I was very blessed through the process.

REPLY
@smokie

My son received CAR T Cell Transplant 11 mo ago.
He is still cancer free. He is well, but gets very tired.
Does anyone else have this problem? Barb

Jump to this post

I am about 8 months out and I am doing well also. I think one of the biggest side effects I have experienced not only with CAR-T but also multiple rounds of chemo has been fatigue. I can get tired very quickly sometimes and at other times I am fine. I try to take time to rest before I get tired. I have found that it is different for everyone and it just takes time to recover. Graydon

REPLY
Please sign in or register to post a reply.