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Eric Drew posted an update in the group Non-Hodgkin’s Lymphoma Advocate Network
Here are the results of a consultation we recently arranged with the LLS for a previously untreated young man with Diffuse Large B Cell Lymphoma. Lots of great information here! (see below)
Subject: Information from the Clinical Trial Support Center of the Leukemia & Lymphoma Society
For patient diagnosed with DLBCL. Current treatment plan is to start RCHOP as soon as possible. He has received a second opinion at New Hope Unlimited. Patient has markers/mutations including CD10+, CD20+, BCL2, and BCL12. You are interested in what options are available and contacted the Leukemia & Lymphoma Society Clinical Trial Support Center for support regarding information on possible clinical trials that patient may be eligible for.
We reviewed the standard of care for DLBCL. We discussed the Clinical Trial Support Center’s role, what clinical trials are, and the phases of clinical trials. We reviewed that trials are designated to certain centers and this could mean staying in a different location for an extended timeframe while in the clinical trial. You feel it would be better to begin the search locally because of difficulty with travel. The search will be expanded if needed.
Below, and attached, to this email you will find the clinical trial table. I was only able to find 1 trial for the designated area and currently the trial is not recruiting in your area. The trial is for treatment naïve (no treatment yet) individuals that are required to meet criteria and have not initiated therapy before. Within the table I have listed some of the inclusion and exclusion criteria to be aware of. If this is a trial you would like to have further information on I can reach out and find out if there is information on when the trial is anticipated to start in your area. Please remember if at any time the patient’s situation changes or you obtain further information regarding his diagnosis I can provide you with an updated list usually within 24- 48 business hours.
To access information about a particular trial, right click on the title of the trial and ‘open hyperlink’. This will bring you to a brief description; a list of centers where the trial is taking place; and some general information about the protocol. If you are interested in one of these trials and there is not specific information about the site, let me know and I can research that information for you
NCT Number Title Phases Location/ Comments
NCT03274492
Currently only recruiting in CO A Study Comparing the Efficacy and Safety of Polatuzumab Vedotin With Rituximab-Cyclophosphamide, Doxorubicin, and Prednisone (R-CHP) Versus Rituximab-Cyclophosphamide, Doxorubicin, Vincristine, and Prednisone (R-CHOP) in Participants With Diffuse Large B-Cell Lymphoma (POLARIX)Contact: Reference Study ID Number: GO39942 888-662-6728
global-roche-genentech-trials@gene.com*ECOG 2 or less
*CNS involvement is an exclusionI did look to see how many trials were available for newly diagnosed DLBCL in the US. I am including the link here if you would like to look at it. There was a total of 13 trials:
https://www.clinicaltrials.gov/ct2/results?term=Newly+Diagnosed+OR+Untreated+OR+treatment+Naive&recrs=abc&type=Intr&cond=DLBCL&cntry=US&age_v=24I know you have consulted with New Hope Unlimited so I wanted to provide some information regarding second opinions. Many people find it helpful to seek a second opinion at some point throughout their diagnosis. Second opinions can be helpful in answering questions, discussing other potential treatments, or confirming the current treatment plan. LLS does have a nice factsheet on Choosing a Blood Cancer Specialist or Treatment Center which does contain information on seeking a second opinion. This factsheet can be accessed online at: http://www.lls.org/sites/default/files/FS6_ChoosingABCSOTC%20Facts.pdf.
Usually when patients are seeking a second opinion, it is helpful to have the opinion at an NCI designated Cancer Center. You can go to https://www.cancer.gov/research/nci-role/cancer-centers/find to find a center close to you. It is also helpful to seek a second opinion at a site that may be offering a clinical trial of your interest.
I am also providing a few links to further information regarding DLBCL including standard treatment RCHOP, new treatment possibilities, a YouTube video, and a LLS podcast.
This article discusses RCHOP:
R-CHOP Remains the Standard of Care in Previously Untreated Diffuse Large B-Cell LymphomaThis article discusses treatment possibilities:
Treatment of Diffuse Large B-Cell Lymphoma Continues to EvolveYou Tube video discussing DLBCL treatment regimens:
Diffuse Large B-Cell Lymphoma (DLBCL) RegimensDiscusses immunotherapy used in NHL:
Immunotherapy for Non-Hodgkin LymphomaLLS podcast discussing DLBCL:
Diagnosed with Diffuse Large B-Cell Lymphoma (DLBCL). Now what?A clinical trial, as we discussed, is a carefully controlled research study conducted by doctors to improve the care and treatment of people with cancer or other illnesses. You can find more information at these links:
• Clinical Trials: http://www.lls.org/treatment/types-of-treatment/clinical-trials
• LLS booklet, Understanding Clinical Trials for Blood Cancers: http://www.lls.org/sites/default/files/file_assets/understandingclinicaltrials.pdf
• Questions to Ask Your Healthcare Provider About Clinical Trials: http://www.lls.org/sites/default/files/National/USA/Pdf/clinical%20Questionaire2012.pdf
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Aarchi Advani joined the group Non-Hodgkin’s Lymphoma Advocate Network
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Bayou joined the group Non-Hodgkin’s Lymphoma Advocate Network
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Daniel Christian Patient Advocate joined the group Non-Hodgkin’s Lymphoma Advocate Network
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Polly joined the group Non-Hodgkin’s Lymphoma Advocate Network
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Gracie007 posted an update in the group Non-Hodgkin’s Lymphoma Advocate Network
Roundup class-action
Roundup Injury EvaluationThose affected by Non-Hodgkin’s Lymphoma after using the weed killer Roundup may be entitled to compensation. Take this short evaluation. -
Gracie007 joined the group Non-Hodgkin’s Lymphoma Advocate Network
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Chris Murdock joined the group Non-Hodgkin’s Lymphoma Advocate Network
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Eric Drew posted an update in the group Non-Hodgkin’s Lymphoma Advocate Network
CRI – Kymriah (tisagenlecleucel), a CAR T Cell Immunotherapy, Approved for LymphomaA second CAR T cell immunotherapy targeting the CD19 receptor was approved by the FDA for patients with relapsed or refractory large B cell lymphoma. -
Eric Drew posted an update in the group Non-Hodgkin’s Lymphoma Advocate Network
Here are the results of a consultation we recently arranged with the LLS for a previously untreated young man with Diffuse Large B Cell Lymphoma. Lots of great information here! (see below)
Subject: Information from the Clinical Trial Support Center of the Leukemia & Lymphoma Society
For patient diagnosed with DLBCL. Current treatment plan is to start RCHOP as soon as possible. He has received a second opinion at New Hope Unlimited. Patient has markers/mutations including CD10+, CD20+, BCL2, and BCL12. You are interested in what options are available and contacted the Leukemia & Lymphoma Society Clinical Trial Support Center for support regarding information on possible clinical trials that patient may be eligible for.
We reviewed the standard of care for DLBCL. We discussed the Clinical Trial Support Center’s role, what clinical trials are, and the phases of clinical trials. We reviewed that trials are designated to certain centers and this could mean staying in a different location for an extended timeframe while in the clinical trial. You feel it would be better to begin the search locally because of difficulty with travel. The search will be expanded if needed.
Below, and attached, to this email you will find the clinical trial table. I was only able to find 1 trial for the designated area and currently the trial is not recruiting in your area. The trial is for treatment naïve (no treatment yet) individuals that are required to meet criteria and have not initiated therapy before. Within the table I have listed some of the inclusion and exclusion criteria to be aware of. If this is a trial you would like to have further information on I can reach out and find out if there is information on when the trial is anticipated to start in your area. Please remember if at any time the patient\’s situation changes or you obtain further information regarding his diagnosis I can provide you with an updated list usually within 24- 48 business hours.
To access information about a particular trial, right click on the title of the trial and ‘open hyperlink’. This will bring you to a brief description; a list of centers where the trial is taking place; and some general information about the protocol. If you are interested in one of these trials and there is not specific information about the site, let me know and I can research that information for you
NCT Number Title Phases Location/ Comments
NCT03274492
Currently only recruiting in CO A Study Comparing the Efficacy and Safety of Polatuzumab Vedotin With Rituximab-Cyclophosphamide, Doxorubicin, and Prednisone (R-CHP) Versus Rituximab-Cyclophosphamide, Doxorubicin, Vincristine, and Prednisone (R-CHOP) in Participants With Diffuse Large B-Cell Lymphoma (POLARIX)Contact: Reference Study ID Number: GO39942 888-662-6728
global-roche-genentech-trials@gene.com*ECOG 2 or less
*CNS involvement is an exclusionI did look to see how many trials were available for newly diagnosed DLBCL in the US. I am including the link here if you would like to look at it. There was a total of 13 trials:
https://www.clinicaltrials.gov/ct2/results?term=Newly+Diagnosed+OR+Untreated+OR+treatment+Naive&recrs=abc&type=Intr&cond=DLBCL&cntry=US&age_v=24I know you have consulted with New Hope Unlimited so I wanted to provide some information regarding second opinions. Many people find it helpful to seek a second opinion at some point throughout their diagnosis. Second opinions can be helpful in answering questions, discussing other potential treatments, or confirming the current treatment plan. LLS does have a nice factsheet on Choosing a Blood Cancer Specialist or Treatment Center which does contain information on seeking a second opinion. This factsheet can be accessed online at: http://www.lls.org/sites/default/files/FS6_ChoosingABCSOTC%20Facts.pdf.
Usually when patients are seeking a second opinion, it is helpful to have the opinion at an NCI designated Cancer Center. You can go to https://www.cancer.gov/research/nci-role/cancer-centers/find to find a center close to you. It is also helpful to seek a second opinion at a site that may be offering a clinical trial of your interest.
I am also providing a few links to further information regarding DLBCL including standard treatment RCHOP, new treatment possibilities, a YouTube video, and a LLS podcast.
This article discusses RCHOP:
R-CHOP Remains the Standard of Care in Previously Untreated Diffuse Large B-Cell LymphomaThis article discusses treatment possibilities:
Treatment of Diffuse Large B-Cell Lymphoma Continues to EvolveYou Tube video discussing DLBCL treatment regimens:
Diffuse Large B-Cell Lymphoma (DLBCL) RegimensDiscusses immunotherapy used in NHL:
Immunotherapy for Non-Hodgkin LymphomaLLS podcast discussing DLBCL:
Diagnosed with Diffuse Large B-Cell Lymphoma (DLBCL). Now what?A clinical trial, as we discussed, is a carefully controlled research study conducted by doctors to improve the care and treatment of people with cancer or other illnesses. You can find more information at these links:
• Clinical Trials: http://www.lls.org/treatment/types-of-treatment/clinical-trials
• LLS booklet, Understanding Clinical Trials for Blood Cancers: http://www.lls.org/sites/default/files/file_assets/understandingclinicaltrials.pdf
• Questions to Ask Your Healthcare Provider About Clinical Trials: http://www.lls.org/sites/default/files/National/USA/Pdf/clinical%20Questionaire2012.pdf -
Eric Drew posted an update in the group Non-Hodgkin’s Lymphoma Advocate Network
Hello Barbara! So great to be working with you and sharing here.
