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.

@dazlin

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

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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.

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@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.

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@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!

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@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!

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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.

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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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@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?

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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

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@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

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

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@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?

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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.

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@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

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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

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@gkrapohl

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

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Thanks for your reply. Greg is almost 18 mo out now. I can still see fatigue , but less now. Good luck and Happy New Yrar!

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@smokie

Thanks for your reply. Greg is almost 18 mo out now. I can still see fatigue , but less now. Good luck and Happy New Yrar!

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Happy new year all.
@smokie, great to hear that Greg continues to improve. How is he feeling about the level of fatigue. Is he seeing improvements?
@gkrapohl Graydon, It's been a few months since you posted. How is your fatigue doing? Getting better?

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My diagnosis is CLL/SLL , Hashimoto and Hypogammaglobulinemia. Having frequent infections. I don’t have any treatment yet because the doctor isn't clear if I should begin or not…but Lymphomas are manifesting more aggressively in my case and inflammation episodes cause scary neurological symptoms. Can anyone tell me how do I qualify for Cart T cell therapy or what is the protocol for it? I have extreme allergies and sensitivities to medicines, and everything. I am afraid to take Imbruvica and since the doctor refuses to start me with a lower dose. I react badly to MRIs contrast and even iodine. I am terrified every time they mention any drugs because I could die from medicines reactions…I need guidance on treatment and which doctor I should see aside from my Hematologist to support the immune deficiency (or suspected plasma deficiency) Where do I get this treatment and if anyone knows a the name of a good doctor ???

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Over the summer there were clinical trials for CAR-T in Philadelphia. I do not know if they are still open. Have you spoken to your doctor regarding CAR-T? I also know that Mayo is doing clinical trials on high dose intravenous sodium ascorbate for some blood cancers including I believe lymphoma, and has also completed a clinical trial for FMD (fasting mimicking diet) prior to chemotherapy. I don't yet see the results of this trial online though. Consulting with Riordan Clinic in Kansas about complementary and first line therapies for blood cancers has been very helpful for me. God bless you.

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