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
@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:
@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?
@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!
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.
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.
@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!
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.
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.
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.
Kevin--My husband was diagnosed in 2009 with a rare Hodgkin lymphoma, Nodular Lymphocyte Predominant, which in 20 percent of cases transforms into a B-Cell non-Hodgkin's. His did in autumn 2015 (T-Cell Rich B-Cell). The affected nodes for both were two of his mesenteric nodes on the right side of his body. He had R-CHOP, refractory R-Chop, and an autologous stem-cell transplant at Mayo's in Nov-Dec 2016. The cancer was back by his 100-day checkup in March 2017, but, for some inexplicable reason, it didn't grow as fast as usual. By the time the FDA approved his type of CAR-T (not a trial) in Nov 2017, he was completely asymptomatic and the mass was still not large enough to biopsy. When it was finally time to biopsy in March 2018, docs thought it might actually be the Hodgkin's returning! It really was acting more like that. But it was the non-Hodgkin's. That's when (YESCARTA) CAR-T was recommended. Have you considered a second opinion from Mayo's?
I hadn't thought about a second opinion from Mayo until now. I did get a second opinion from the UCHealth University of Colorado Hospital. They didn't have the Allogene Car-T trial. They wanted me to go through radiation and then to a bone marrow transplant with a donor.
Kevin--My husband was diagnosed in 2009 with a rare Hodgkin lymphoma, Nodular Lymphocyte Predominant, which in 20 percent of cases transforms into a B-Cell non-Hodgkin's. His did in autumn 2015 (T-Cell Rich B-Cell). The affected nodes for both were two of his mesenteric nodes on the right side of his body. He had R-CHOP, refractory R-Chop, and an autologous stem-cell transplant at Mayo's in Nov-Dec 2016. The cancer was back by his 100-day checkup in March 2017, but, for some inexplicable reason, it didn't grow as fast as usual. By the time the FDA approved his type of CAR-T (not a trial) in Nov 2017, he was completely asymptomatic and the mass was still not large enough to biopsy. When it was finally time to biopsy in March 2018, docs thought it might actually be the Hodgkin's returning! It really was acting more like that. But it was the non-Hodgkin's. That's when (YESCARTA) CAR-T was recommended. Have you considered a second opinion from Mayo's?
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?
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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1 Reaction@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!
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.
Oh, sure...not a problem. I asked because I read a post here about a patient with Predominant. Thanks!
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.
Can anyone explain the difference between Reactive and Predominant lymphoid nodules?
I hadn't thought about a second opinion from Mayo until now. I did get a second opinion from the UCHealth University of Colorado Hospital. They didn't have the Allogene Car-T trial. They wanted me to go through radiation and then to a bone marrow transplant with a donor.
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1 ReactionKevin--My husband was diagnosed in 2009 with a rare Hodgkin lymphoma, Nodular Lymphocyte Predominant, which in 20 percent of cases transforms into a B-Cell non-Hodgkin's. His did in autumn 2015 (T-Cell Rich B-Cell). The affected nodes for both were two of his mesenteric nodes on the right side of his body. He had R-CHOP, refractory R-Chop, and an autologous stem-cell transplant at Mayo's in Nov-Dec 2016. The cancer was back by his 100-day checkup in March 2017, but, for some inexplicable reason, it didn't grow as fast as usual. By the time the FDA approved his type of CAR-T (not a trial) in Nov 2017, he was completely asymptomatic and the mass was still not large enough to biopsy. When it was finally time to biopsy in March 2018, docs thought it might actually be the Hodgkin's returning! It really was acting more like that. But it was the non-Hodgkin's. That's when (YESCARTA) CAR-T was recommended. Have you considered a second opinion from Mayo's?
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Helpful -
Hug
2 ReactionsHi, 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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