MANTLE CELL LYMPHOMA: MCL Cancer Web Page and Resources

 

 

 

This document describes important information gathered from the web regarding Mantle Cell Lymphoma, a type of Non-Hodgkin’s Lymphoma. This includes information about diagnosis and treatment, financial support, questions to ask your providers, abbreviations, live events, and recent presentations on MCL and Non-Hodgkins Lymphoma.

 

 

Main Menu

 

 

1.    Getting Started

2.    COVID-19 Resources for NHL Patients

3.    MCL Online Communities

4.    Information About MCL Disease and Supporting Organizations

5.    What Questions Should I Ask my doctor?

6.    Financial and Legal Issues during MCL/Cancer Treatment

7.    Upcoming Live and Virtual Events, Telephone Conferences and Webinars

8.    Recent Seminars and Conference Calls

9.    Finding MCL Treatment

10. Treatment Options for MCL Patients

11. More Information on Specific Treatments

12. Upcoming Ideas in MCL and NHL Cancer Diagnosis and Treatments

13. MCL Patient Care Information

14. Abbreviations and Terms

 

If you have any questions or comments or would like help with our resources, please feel free to send an email to: beth@mclpage.com

 

 

 

 

For those getting started with MCL

1. Review this online resource:

A great place to start finding out about information is with the

National Comprehensive Cancer Network (NCCN) 2023

patient brochure-

NCCN Guidelines for MCL Patients

 

2. Listen to an introductory online talk:

For those who have not yet started treatment, we recommend this talk
on "Initial Treatment for MCL" by Dr. Anita Kumar from Memorial Sloan
Kettering: https://player.vimeo.com/video/692600995

Another aspect of Mantle Cell Treatment is the approach if the cancer recurs.  Here is a talk on that topic:
"Mantle Cell Lymphoma: Relapsed/Refractory" by Kami Maddocks, MD, from Ohio State University Comprehensive Cancer Center

https://player.vimeo.com/video/765301446

 

3.  Explore more comprehensive MCL talks:

Here's another talk on initial treatment choices. This alternative
goes into much more technical detail and talks about some of the
prognosis information:
"Mantle Cell Lymphoma: Newly Diagnosed"
by Timothy Fenske, MD from Medical College of Wisconsin
https://player.vimeo.com/video/764242098

Excellent talk by Dr. Brad Kahl (Washington University, St. Louis) which is helpful to understand complex concepts in MCL and provides an update on treatment approaches (talk from November, 2023) is at:

 https://player.vimeo.com/video/881221727

 

4. Join a discussion group:

ACOR Online MCL Group:  https://listserv.acor.org/scripts/wa-ACOR.exe?A0=MANTLECELL

This article from Patient Power lists a number of online support groups:

https://www.patientpower.info/mantle-cell-lymphoma/living-with-mantle-cell-lymphoma/finding-your-community

 

5. Key Organizations to know about:

LEUKEMIA AND LYMPHOMA SOCIETY

https://www.lls.org

 

LYMPHOMA RESEARCH FOUNDATION

https://lymphoma.org

 

BLOOD & MARROW TRANSPLANT INFORMATION NETWORK

https://bmtinfonet.org

 

CANCERCARE

https://www.cancercare.org

 

Many more organizations are mentioned in the following sections of this document.

 

6. Be aware of these abbreviations: http://mclpage.com/mcllinks.html#abbrevi

 

If you have any questions or comments or would like help with our resources, please feel free to send an email to: beth@mclpage.com

 

 

 

COVID-19 Resources for NHL Patients

 

LLS.ORG covid-19-resources

LLS has been advocating for vaccination policies that consider and serve the unique needs of blood cancer patients since the beginning of the pandemic. Here, you’ll find the latest information on COVID-19, vaccines, and other prevention strategies to help people with blood cancer and survivors protect themselves. 

Antiviral Treatments for COVID-19 in Non-Hospitalized Patients

COVID-19 Protection: Four Steps Blood Cancer Patients Can Take

Fact Sheet: Respect and Protect Blood Cancer Patients

Navigating a Post-Pandemic World: A guide for immunocompromised patients (in collaboration with the International COVID-19 Blood Cancer Coalition) 

 

Updated July 5,  2024

 

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MCL Online Communities

 

Acor.org MCL Listserv and Mailing List

Mantle Cell Lymphoma mailing list brought to you by the Association of Cancer Online Resources (ACOR).

ACOR's story

If you are interested in getting more information about MCL, and to communicate with other participants on the list, sign up at the link on the left.

Patient Power List of Online MCL Communities

Mantle Cell Lymphoma Online Resources

Patients facing an MCL diagnosis can find others to talk to, to compare experiences with, to discuss treatment strategies, to offer a virtual hug, and more. 

Facebook MCL Support group

Facebook Mantle Cell Lymphoma Support Group

This is a closed group—you will need to apply for permission to post and see contents.  There are several other MCL related groups on Facebook.

Facebook MCL Warriors

Facebook MCL Warriors

This is a support group for anyone who has Mantle Cell Lymphoma, this group is for all patients, caregivers, and survivors from newly diagnosed, to in remission, to stem cell transplants patients.

Facebook Group Mantle Cell Lymphoma: The Journey

Mantle Cell Lymphoma: The Journey has been described by its own members as a loving site that truly cares about each and every person as if they were family. “We don't just talk about MCL, but about anything that has challenged MCL survivors and their caregivers, situations that they have nowhere else to talk over”.

Facebook MCL Support Group UK

Facebook MCL Support Group UK

This is a closed group specifically for UK MCL patients.

Facebook Group MCL @ MDA

Facebook MCL @ MDA

Specifically for people or their caregivers with Mantle Cell Lymphoma that are being treated at MD Anderson.

Facebook MCL Group Ohio State

Facebook: MCL at The James Cancer Hospital at Ohio State:

This group is specifically for those who have MCL and are treated at The James Cancer Hospital at Ohio State. Adlai JN is the administrator.

Facebook Group Watch and Wait

Facebook: MCL Watch and Wait

This is a support and information-sharing group for people who've been diagnosed with MCL and have not yet started any treatment OR who delayed treatment for at least a few months before starting treatment. If you are interested in joining this group, you must first answer all the membership questions.

Macmillan MCL Forum UK

Macmillan Cancer Support UK-

Online MCL Discussion Group

If you're suffering from MCL, or know someone who is, join this support group. Find information including diagnosis, treatments, and drugs, as well as advice to help with the different ways cancer may impact your life. 

 

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Information About MCL Disease

And Supporting Organizations

 

Twenty Years of Advancing Discoveries and Treatment of Mantle Cell Lymphoma: Report of the 2023 Lymphoma Research Foundation’s Mantle Cell Lymphoma Consortium Workshop

Researchers gathered at the 20th MCL Scientific Workshop held May 2-3, 2023, in Chicago, IL to discuss recent developments in both scientific and clinical research. The following report includes technical information on MCL genetics, mechanisms of resistance or response to treatment, personalization of therapy and prognostics using bioMRDs, and an international overview of clinical trials.

 

MCL 2023 Scientific Workshop Report

Published Fall 2023

Annual Clinical Updates in Hematological Malignancies:

Mantle cell lymphoma in 2022—A comprehensive update on molecular pathogenesis, risk stratification, clinical approach, and current and novel treatments

 

MCL 2022 Update from MD Anderson

A comprehensive overview of MCL disease and treatment published by MD Anderson Cancer Center, Houston, TX.

Supporting Organizations:

Leukemia and Lymphoma Society

 

LLS website en espanol

Leukemia and Lymphoma Society (LLS):

Download or order free information booklets

LLS MCL Fact Sheet

Financial aid information

Other financial resources

The Bloodline with LLS

Download the LLS Health Manager app

Join the LLS Community

Lymphoma Research Foundation

 

LRF website en espanol

Lymphoma Research Foundation (LRF):

LRF Mantle Cell Lymphoma Fact Sheet

 

LRF Relapsed/Refractory Mantle Cell Lymphoma Fact Sheet

The LRF Clinical Trials Information Service provides patients with information about investigative treatments for lymphoma being evaluated at cancer centers nationwide:

Clinical Trials Information Service

LRF-The Lymphoma Support Network

The Lymphoma Support Network (LSN) is a one-to-one peer support program for people with lymphoma and their caregivers. LSN connects patients and caregivers with volunteers who have had similar experiences. More than 6,000 lymphoma survivors and their caregivers have joined LSN to connect with others, share their personal histories as they relate to lymphoma and offer emotional support.

Lymphoma Coalition

Lymphoma Coalition

Lymphoma Coalition, a worldwide network of patient groups with a focus on providing support to patients with lymphoma, was formed in 2002 to establish a central hub of consistent, reliable, and current information. LC recognizes the need for lymphoma patient organizations to share resources, best practices, and policies and procedures. Today, there are over 80 member organizations from over 50 countries.

Leukemia & Lymphoma Society of Canada

The Leukemia & Lymphoma Society of Canada (LLSC) is a voluntary health agency dedicated to blood cancers. They provide free information and support services to patients and caregivers. The LLSC mission: Cure leukemia, lymphoma, Hodgkin's disease, and myeloma, and improve the quality of life of patients and their families. Click here for the French language version

Lymphoma Action UK

Lymphoma Action UK

UK based Lymphoma information and services:

Support Services

MCL specific information

Clinical Trials Link

The Lymphoma Study Association FR

LYSA

A French based Lymphoma information and services resource. Available in both French and English.

(Click on flag at top right for language preference).

NCCN Patient Guidelines for MCL

National Comprehensive Cancer Network

NCCN is a not-for-profit alliance of 31 leading cancer centers devoted to patient care, research, and education. Clinical professionals at NCCN Member Institutions develop resources that present valuable information to the numerous stakeholders in the health care delivery system. NCCN promotes and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers around the world.

Patient Power- MCL

Patient Power

Patient Power is devoted to supporting cancer patients, care partners and other loved ones through education and advocacy - to get the right treatment at the right time working with the right healthcare team. Patient Power offers an ever-expanding library of online programs, organized by health condition.

Lymphomation.org

Patients Against Lymphoma

The Lymphomation website has general lymphoma information, including a list of lymphoma related acronyms

Lymphomahub.com

Lymphoma Hub.com

The Lymphoma Hub shares new data, evidence-based articles, therapy approvals, expert opinions, and international congress coverage to treatment teams and researchers around the world.

Lymphomainfo.net

LymphomaInfo.net

Lymphoma news, support, and information.

MEDLINE: National Library of Medicine

PubMed

A free search engine accessing the MEDLINE database of references and abstracts on life sciences and biomedical topics. Search the database for scholarly publications on MCL disease and treatment. Maintained by NCBI.

National Cancer Institute

NCI Adult NHL Treatment

NIH sponsored general information and treatment options guide with a version for patients and healthcare providers.

Navigating Care

Navigating Care

Support, resources, and tools to manage patients’ cancer care. Patients can organize care and manage health records in one place.

Blood & Marrow Transplant Information Network

BMT InfoNet

A valuable resource dedicated to providing transplant patients, survivors and caregivers high quality information on blood and marrow transplants and related issues.

A handbook on Autologous SCT is available for $11.95

BMT Transplant videos en Espanol

BMT Infonet en Espańol

Una colección de videos sobre trasplantes y terapia CAR T en espańol.

The National Marrow Donor Program

BeTheMatch.org

Helping patients by providing one-on-one support to them and their families every step of the way along the transplant journey.

NCI Office of Cancer Survivorship

NCI Office of Cancer Survivorship

The office works to enhance the quality and length of survival of all persons diagnosed with cancer and to minimize adverse effects experienced during cancer survivorship. The office supports research that addresses the physical, psychological, social, and economic effects of cancer and its treatment.

Cancer.net site from ASCO & Conquer Cancer Foundation main web site

Cancer.Org

Devoted to information about all cancers. From the website developed by the American Society of Clinical Oncology:

MCL specific information

Cancercare.org Services

Cancercare.org

Provides counseling, support groups, education, publications, financial assistance, and community programs.

Cancercare MCL page

Cancercare Counseling

Cancercare social workers are experienced in the mental health aspects of cancer and provide free counseling services.

Phone number 800‑813‑HOPE (4673) (select option 5 for counseling services); or email  info@cancercare.org

NCI clinical trial search engine

Cancer.gov

A US Government search engine for clinical trial information from the National Cancer Institute.

OncLive MCL related videos

OncLive News Network

Covers every angle of oncology practice, from new technology to treatment advances to important regulatory decisions with videos presented by experts specific to MCL disease. These articles are primarily designed for physicians but can provide some useful ideas about treatment possibilities.

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What Questions Should I Ask my Doctor?

 

American Cancer Society General Questions

 

 

American Cancer Society general questions for all cancers.

ACS Questions for Lymphoma Patients

American Cancer Society questions on Non-Hodgkin’s lymphoma.

ACS Guidance on seeking Second Opinions

Second Opinions:

You might want to find another doctor who can look at your test results, talk with you about your personal situation, and maybe give you a different take on it. Getting a second opinion can help you feel more sure about your diagnosis and treatment plan.

LLS Booklet: COMMUNICATING WITH YOUR HEALTHCARE TEAM

Talking Through Treatment for the Best Care:
Once your treatment plan is in place, maintaining good communication with your healthcare team is as important as ever.

Effective Communication within Cancer Care

This LLS podcast provides information on how both healthcare professionals and patients can improve their communication as they discuss diagnosis and treatment.

 

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Financial and Legal Issues During MCL/Cancer Treatment

 

U.S. Social Security Disability Benefits

US Government website link explaining the expedited process for people diagnosed with MCL to automatically qualify for federal Social Security Disability benefits.

See more about Compassionate Allowances 

See more about MCL allowances

(Note: The MCL survival statistics in this website are out of date.) 

The Bloodline Podcast Series

You Aren’t Alone: Navigating The Financial Impact of Cancer

Monica Bryant, Esq., a cancer rights attorney and Co-founder/Chief Operating Officer of Triage Cancer reviews the financial hurdles that may arise during treatment and provides practical strategies to help with economic hardships. She also highlights a wealth of resources designed to aid patients, covering everything from financial grants to transportation, Social Security benefits and navigating the complex world of health insurance.

Recorded April 10, 2024

Cancer and Your Finances

This booklet published by LLS describes health insurance options and resources to help patients and their families who are coping with the financial aspects of cancer care, including worksheets to help you stay organized.

Cancer and Careers

Empowers and educates people with cancer to thrive in their workplace by providing expert advice, interactive tools, and educational events.

Cancer Legal Resource Center

Provides invaluable cancer-related legal information and resources to people nationwide. Their Telephone Assistance Line hosts conferences, seminars, workshops, education and outreach programs, and other cancer community activities.

CAR T-Cell Travel Assistance Program

The Leukemia & Lymphoma Society's (LLS) Susan Lang Pre CAR-T-cell Therapy Travel Assistance program is available to blood cancer patients with significant financial need. The fund provides financial assistance to patients diagnosed with a blood cancer who are being evaluated to receive CAR T-cell therapy as either standard treatment or a clinical trial. Those who qualify will receive $2,500 in financial assistance to support approved travel and lodging expenses.

Triage Cancer Resources

Health and financial resources including state laws related to employment, disability, and health insurance. International resources list cover cancer research, disability benefits, legal assistance, and employment health insurance in Australia, Canada, and England.

Conquer Patient Guide to Cancer Support Services

Conquer Magazine’s patient guide is a comprehensive list of organizations offering services related to obtaining financial support and cancer care management.

Cancercare.org financial assistance website

Helpful site with support services for cancer patients, especially financial and counseling.

Department of Energy Employees

Giving Home Health Care helps qualifying blood cancer patients who have worked at a Department of Energy (DOE) facility. Giving Home Health Care is an organization that helps individuals, who were employed with the DOE, receive financial assistance and other services they are legally entitled to under the Energy Employees Occupational Illness Program (EEOICPA).

PAN Foundation for Financial Support

PAN Foundation provides support for medical expenses.

LLS Co-Pay Assistance Program

LLS sometimes has funding for patients related expenses. A fund that is “fully subscribed” is at maximum capacity. There is no waitlist and encourage all to continue to check the website regularly for updates.

LLS Financial Support Page

Leukemia and Lymphoma Society Financial Support Page

Co-pay assistance program

LLS Ways to Reduce the Financial Burden of Cancer

Leukemia and Lymphoma Society virtual lecture can be accessed at any time to help patients and caregivers deal with financial concerns.

LRF Resources for Financial Assistance

Lymphoma Research Foundation Financial Support Page

LRF has compiled a list of available resources providing financial assistance.

LLS Veteran Dental Program

VETERAN DENTAL FINANCIAL ASSISTANCE

Dental services provided to eligible veterans at sites in New York, NY, Chapel Hill, NC and San Antonio, TX.

LLS Dollar For

Dollar For helps you apply for financial assistance from your hospital stay. Take a 3-minute survey to see if you qualify.

UNDUE Medical Debt

Undue Medical Debt is a national nonprofit whose purpose is to strengthen communities by erasing financially burdensome medical debt. Founded in 2014 by former debt collection executives, Undue Medical Debt is one of the leading charitable organizations that help pay medical bills. 

Singlecare.com

Singlecare.com offers insights on managing medical debt, offering strategies, resources, and practical advice to navigate healthcare finances effectively.

NeedyMeds.org

NeedyMeds is a national non-profit that connects people to programs that will help them afford their medications and other healthcare costs.

Cancer Supportive Care

A listing of Drug Assistance Programs from pharmaceutical companies.

Job Accommodation Network

The Job Accommodation Network (JAN) is the leading source of free, expert, and confidential guidance on workplace accommodations and disability employment issues.

 

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Upcoming Live and Virtual Events, Telephone Conferences and Webinars

 

LRF Webinar

Update on B-Cell Lymphomas from the American Society of Hematology (ASH) Annual Meeting 2024

 

Jan 15, 2025 2:00 PM ET/ 11:00 AM PT

The Lymphoma Research Foundation's free webinars are hour-long interactive programs led by leading lymphoma experts who discuss lymphoma, treatment options, clinical trials, and promising innovative research. Webinars can be listened to live on the telephone or via web streaming. This program will cover updates in B-Cell lymphoma research for lymphoma patients and their care partners.

Presenter: Ann LaCasce, MD, MMSc

Click here to Register

LLS Blood Cancer Conferences

Northern California Blood Cancer Conference - REGISTRATION IS NOW OPEN!
In-Person Education Program
Saturday, February 1, 2025
9:00am – 2:15pm
Hyatt Regency
San Francisco, CA
www.LLS.org/NCABCC25
Experts in the areas of blood cancer research, treatment, and survivorship will present information on each topic. The goal is to educate conference participants about treatment options, emerging therapies, management of survivorship issues, and LLS resources. 

SAVE THE DATE

Winter/Spring 2025

Florida Blood Cancer Conference
February 22, 2025
JW Marriott Orlando Bonnet Creek Resort & Spa | Orlando, FL

 

Rocky Mountain Blood Cancer Conference
March 1, 2025
Hyatt Regency | Aurora, CO

 

Southern California Blood Cancer Conference
March 15, 2025
Anaheim Marriott | Anaheim, CA

 

Tri-State Blood Cancer Conference
April 5, 2025
New York Marriott Marquis | New York, NY

 

Texas Blood Cancer Conference
May 3, 2025
Westin Galleria | Dallas, TX

LRF Ask The Doctor Series

 

Ask the Doctor About Lymphoma:

Ask the Doctor is a national series of two-hour, topic-specific, community-based programs that combine a presentation by a medical doctor with an extensive question and answer session. Virtual Ask the Doctor programs provide access to local lymphoma experts, and you can tune in over the phone or online. Note: Ask the Doctor programs are not recorded or archived. We encourage you to tune in live.

Click on the links for more information and registration:

 

Information for Newly Diagnosed Patients

Featuring: Dr. Ryan Lynch, Fred Hutchison Cancer Center

January 28, 2025

4:00 PM – 6:00 PM ET/ 1:00-3:00 PT

This program is for individuals who have been recently diagnosed with lymphoma/CLL or have received one line of treatment.

Click here to Register

 

Cancer and Careers Webinars

Balancing Work & Cancer: Webinars/ Teleconferences

Cancer and Careers’ Balancing Work & Cancer Webinar Series offers sessions related to the challenges of balancing work and cancer.

Click on the links for more information and to register for the sessions:


JAN 22, 2025

Balancing Work & Cancer: Making Key Decisions 

Webinar/Teleconference

Learn how to figure out the steps and considerations when making decisions about work when managing a diagnosis.

 

FEB 5, 2025

Balancing Work & Cancer Webinar: Managing Long-Term Stress 

Webinar/Teleconference

Discover ways to care for yourself and create new strategies to manage stress and maintain a professional presence in the workplace.

 

MAR 5, 2025

Balancing Work & Cancer Webinar: Building Confidence at Work 

Webinar/Teleconference

Explore the impact of cancer upon body confidence and self-confidence and how those changes can affect patients and survivors in the workplace. 

 

MAR 28, 2025

12th Annual Midwest Conference on Work & Cancer 

Webinar/Teleconference

This free daylong event explores the complexities of balancing treatment and recovery with employment.

 

APR 2, 2025

Balancing Work & Cancer Webinar: Marketing Yourself: Job Search and Beyond 

Webinar/Teleconference

Knowing how to sell yourself is a key skill when applying for jobs, writing a cover letter, and in an interview. You know why you are perfect for the 

MAY 6, 2025

Balancing Work & Cancer Webinar: Job Search Tools: Using AI Strategically 

Webinar/Teleconference

This session will take a practical look at using AI in your job search by explaining what AI is, and isn’t, and demonstrating how to use it.

 

JUN 4, 2025

Balancing Work & Cancer Webinar: First Impressions: Resumes and LinkedIn 

Webinar/Teleconference

Learn all the resume basics to ensure it tells a compelling story of your professional experiences and accomplishments.

 

JUL 9, 2025

Balancing Work & Cancer Webinar: Career Shifting: Tips, Tools & Techniques 

Webinar/Teleconference

Explore the challenges of seeking a change in your career following a cancer diagnosis or treatment, and methods to overcome them.

 

AUG 6, 2025

Balancing Work & Cancer: Balancing Work & Cancer 

Webinar/Teleconference

Learn ways to manage work after a cancer diagnosis

 

SEP 10, 2025

Balancing Work & Cancer Webinar: Communicating Effectively Part 1 

Webinar/Teleconference

Explore tools and techniques for communicating effectively in the workplace after a cancer diagnosis and treatment. 

 

OCT 8, 2025

Balancing Work & Cancer Webinar: Communicating Effectively Part 2 

Webinar/Teleconference

Explore tools and techniques for communicating effectively in the workplace after a cancer diagnosis and treatment. 

 

NOV 5, 2025

Balancing Work & Cancer Webinar: Balancing Work & Caregiving 

Webinar/Teleconference

There are unique challenges in balancing caregiving responsibilities and work. This webinar will touch on considerations to make it manageable. 

 

DEC 3, 2025

Balancing Work & Cancer Webinar: Self-Care: Practical Approaches at Work and Beyond 

Webinar/Teleconference

Between doctor appointments, treatment schedule and work, we often neglect to take time for ourselves.

 

 

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Recent Seminars and Conference Calls

Link

Description

Acor.org MCL Listserv

ACOR MCL Zoom Meeting Series

Recordings of monthly discussions hosted by ACOR MCL

 

Q and A with Dr Tycel Phillips

Presented by Tycel Phillips, MD, Associate Professor of Hematology and Bone Marrow Transplant at City of Hope, Duarte, CA

Recorded July 1, 2024

 

Searching Online for MCL Medical Information

Presented by Daniel Schneider and Larry Fagan

Recorded June 1, 2024

 

MCL Webpage Resources and Finding Clinical Trials

Presented by Beth Parle and Larry Fagan

Recorded April 6, 2024

 

High Risk MCL and Watch and Wait

Presented by Tycel Phillips, MD, Associate Professor of Hematology and Bone Marrow Transplant at City of Hope, Duarte, CA

Recorded March 2, 2024

LLS Patient Education

Spotlight on Mantle Cell Lymphoma

Topics Covered:

·         Latest treatment advances for mantle cell lymphoma

·         Relapse management

·         Quality-of-life and side-effect management

Presented by Tycel Philips, MD, City of Hope National Cancer Center, Duarte, CA

Recorded March 1, 2024

LLS National Blood Cancer Conference

Presentations from the National Virtual Blood Cancer Conference
Presented on September 14, 2024 

Lymphoma High Grade
Lymphoma Low Grade

Transforming Cancer Care with Integrative Oncology
Treatment Decision Making: How Do I Navigate My Options?

LRF Webinar

Update on Lymphoma from the 2023 American Society of Hematology (ASH) Annual Meeting

Program Overview

  • Overview of Lymphomas
  • New Research Presented at ASH
    o B-cell Non-Hodgkin Lymphomas and Chronic Lymphocytic Leukemia
    o Hodgkin Lymphoma and Pediatric Lymphomas
    o T-cell Non-Hodgkin Lymphomas
  • The Role of Clinical Trials
  • Questions for Our Panel of Experts

Featuring:

John P. Leonard, MD, New York Presbyterian Hospital, Weill Cornell Medicine, LRF Scientific Advisory Board Member

Jamie E. Flerlage, MD, MS, Golisano Children’s Hospital
Director of Clinical Research, Wilmot Cancer Institute

Neha Mehta-Shah, MD, MSCI
Institute of Clinical and Translational Sciences, Siteman Cancer Center

Recorded January 29, 2024

LRF Conference MCL

Mantle Cell Lymphoma

Presented by Brad Kahl, MD

Washington University, Siteman Cancer Center, St Louis, MO

This comprehensive one-hour presentation from the National Lymphoma Workshop is an in-depth dive about all aspects of MCL. Recorded November 4, 2023

 

Dr. Brad Kahl - MCL treatment & survivorship

In addition, a patient Q and A session was recorded on December 1, 2023

To view that content Please click here

Enter Passcode: Yn9*VR3w

LRF Bispecifc antibody Webinar

Treating Lymphoma with Bispecific Antibodies

This one-hour video is an in-depth overview of how bispecific antibodies are being used to attack lymphoma using a two-pronged approach to recognize the targets expressed on the cell surface called anitgens.

 Glofitamab (COLUMVI), Odronextamab (ODRON) and Epcoritamab (Epkinly) are currently being studied in clinical trials to treat mantle cell lymphoma.

Presented by:

Lorenzo Falchi, Memorial Sloan Kettering, New York, NY and Jennifer Crombie, MD, Dana Farber Cancer Institute, Boston, MA

Recorded July 19, 2023

LLS Patient Education

Resilience Through Progress: Slow Growing Non-Hodgkin Lymphoma (NHL)

Topics Covered

·         How your NHL subtype determines treatment goals and strategies

·         Navigating the uncertainty of a chronic disease

·         New therapies on the horizon

·         Methods to manage side effects

Speaker

J.C. Villasboas B., MD
Assistant Professor, Medicine and Oncology 
Mayo Clinic College of Medicine and Science, Rochester, MN 

Recorded December 1, 2023

LRF CAR T Webinar

Update on CAR T-Cell Therapy Webinar

This one-hour video is an in-depth overview of the history of lymphoma treatment from chemotherapy to immunotherapy with a detailed summary of best practices in CAR T therapy.

Presented by Manali Kamdar, MD, University of Colorado

Recorded August 16, 2023

Cancernetwork.com

Updates in Treatment and Management of B-Cell Malignancies

André Goy, MD, and Andrew Ip, MD, discuss clinical trial data and the evolving treatment landscapes for mantle cell lymphoma and diffuse large B-cell lymphoma.

Episodes 1 through 5 are MCL specific.

Recorded April-May 2023

LRF Webinars

Update on Relapsed/Refractory Mantle Cell Lymphoma

This one-hour presentation by Alexy Danilov, MD, of City of Hope is an in-depth summary of available treatment options for relapsed/refractory patients.

Recorded March 23, 2023

Medscape.com

In Discussion: Mantle Cell Lymphoma Podcast Series:

Episode 1: Autologous Stem Cell Transplant for MCL and the Transition Toward the Use of BTK Inhibitors

 

Episode 2: Unpacking the Addition of New Variables to the MCL International Prognostic Index and MRD

Episode 3: The Past, Present and Future of Bendamustine in MCL

Episode 4: CAR T and Immunotherapy in MCL: Bridging Therapy, Toxicities, and Bispecific Antibodies

Episode 5: Pathology of Mantle Cell Lymphoma: Biopsies, Diagnostic Markers, and Options for Clinicians Treating This Disease

Episode 6: Bruton Tyrosine Kinase Inhibitors in Mantle Cell Lymphoma: Mutations and Mechanisms of Resistance

 

Presented by Peter Martin, MD, Weill Cornell Medical College

Recorded March, 2023

Onclive.com

Recent Advances in the Treatment of Mantle Cell Lymphoma

In these 13 episodes, a panel of experts in hematologic malignancies have an engaging discussion on the current and potential future treatment approaches for MCL.

Alexey V. Danilov, MD, PhD; City of Hope, Duarte, CA
Bijal D. Shah, MD; Moffitt,Tampa, FL
Matthew J. Matasar, MD; Rutgers, New Brunswick, NJ
Boyu Hu, MD; University of Utah, Salt Lake City, UT

Recorded January-February 2023

Blood Cancers Today.com

Martin Dreyling, MD, Talks TRIANGLE Trial, MCL Management

During this 46-minute video, Dr. Dreyling, Associate Professor of Medicine at the University of Munich, leads listeners through the management of mantle cell lymphoma in newly diagnosed patients. He also answers questions on treating patients without access to upfront ibrutinib access as per the TRIANGLE trial, if allogeneic transplant has a role in MCL, and more.

Recorded May 3, 2023

LRF Webinars

Mantle Cell Lymphoma Research and Clinical Trials

John P Leonard, MD of Weill Cornell Medicine discusses recent advances in MCL treatments such as BTK inhibitors, CAR-T, bispecific antibodies, antibody drug conjugates and other agents available through clinical trials.

Recorded March 2023

CancerCare Connect Workshops

What’s New in Diagnostic Technologies for People Living with Blood Cancers

CancerCare Workshops are intended for patients and caregivers.

Presented by:

Peter Martin, MD, Weill Cornell Medicine, NY Presbyterian

Michael J. Mauro, MD, Memorial Sloan Kettering Cancer Center

Ruben A. Mesa, MD, FACP, MD Anderson, Mays Cancer Center

Elizabeth K. O’Donnell, MD, Massachusetts General Hospital

Joseph Khoury, MD, FCAP, MD, M. D. Anderson Cancer Center

Sarah Thibault-Sennett, PhD, Association for Molecular Pathology (AMP)

Recorded January 31, 2022

Master Listings of MCL and Cancer Talks:

Medscape.com

DECISION POINT: Medscape Hematology & Oncology

This interactive tool enables users to filter their searches to find a variety of MCL videos on diagnosis, evaluation, management, treatment, emerging therapies and care.

LLS Patient Education webcasts

Listings of past webcasts from the Leukemia and Lymphoma Society. These educational programs cover topics related to lymphoma and its subtypes. Click on the links to access webcasts, audio replays, transcripts, and program slides

The Bloodline Podcast Series

The Bloodline with LLS

Listen in as experts and patients guide listeners in understanding diagnosis, treatment, and resources available to blood cancer patients. Join The Patient Education Team at The Leukemia & Lymphoma Society as they explore various survivorship topics.

Click here to subscribe by email

Cancer Care past presentations on cancer related topics

CancerCare

A listing of past presentations from Cancercare.org.

 

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Finding MCL Treatment: Cancer Centers and Physician Information

 

List of Cancer Centers:

 

National Cancer Institute-

Designated comprehensive cancer centers

 

NIH Find a Cancer Center locator

US News & World Report:

Best Hospitals for Leukemia, Lymphoma & Myeloma

 

https://health.usnews.com/best-hospitals/hospital-ratings/leukemia-lymphoma-myeloma

 

US News & World Report:

Best Hospitals for Cancer

 

https://health.usnews.com/best-hospitals/rankings/cancer

 

A guide to choosing doctors and finding treatment:

 

LLS Information Booklet

Choosing a Specialist or Treatment Center

This guide offers suggestions on selecting your doctor, healthcare team and treatment center.

Findexpertmd.com

This database gathered information on 1,207 top medical experts on Mantle-Cell Lymphoma across 40 countries and 40 U.S. states, including 1,180 physicians. This is based on an objective analysis of their Scientific Publications, Clinical Trials, Medicare, and NIH Grants.

 

Find Expert Doctors on Mantle Cell Lymphoma*

 

* findexpertmd.com, calculates a ranking of specialty doctors using their own proprietary algorithm. Many of the doctors mentioned are very active in MCL research.  Please use additional information and your own research to select a provider to see. ACOR and the MCL community are not responsible for the use of this list.

The American Cancer Society’s online aid to finding the right treatment team.

 

Choosing Your Treatment Team

Doctors with an interest in treating MCL:

Disclaimer: The following physicians have been mentioned in our MCL/ACOR mailing list or have been involved in instructional presentations related to MCL. Providers are presented alphabetically by US state and no rank ordering is implied. No endorsement by ACOR or members of the MCL mailing list is implied by this information. This list is presented solely as a possible starting point for the many patients that are seeking additional opinions about their medical care.

MCL Physician List


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Treatment Options for MCL Patients

 

Researching Treatment Options:

Link

Description

ClinicalTrials.gov

Clinical Trials Home page

A US Government registry of clinical trials maintained by the NIH. It is the largest database of trials with currently over 230,000 trials from 195 countries.  You can search for MCL clinical trials while filtering results by location, stage, and eligibility.

How to search clinicaltrials.gov

LLS Clinical Trial Nurse Navigators

LLS Clinical Trial Support Center

Work one-on-one with an LLS Clinical Trial Nurse Navigator who will personally assist you throughout the entire clinical-trial process. Clinical Trial Nurse Navigators are registered nurses with expertise in blood cancers. 

LLS Treatment Booklet

Knowing All Your Treatment Options

The booklet is written in both English and Spanish.Topics covered-

·         Treatments for Blood Cancer

·         Ask Your Healthcare Provider to Explain Your Treatment Options

·          What Is a Clinical Trial?

·         Are Clinical Trials Safe?

·         Informed Consent

·         Clinical Trials: An Important Option for Everyone

·         How to Talk to Your Healthcare Providers

·         Questions to Ask Your Healthcare Providers About Treatment Options

·         Clinical Trials Support

American Cancer Society

Types and Phases of Clinical Trials

An overview of the types and phases of clinical trials and what they mean to pateints.

Cancer.gov

Adult Non-Hodgkin Lymphoma Treatment

National Cancer Institute overview of Non-Hodgkin’s Lymphoma diagnosis and treatment.

FDA.gov

FDA Expanded Access

FDA information on gaining access to unapproved drugs.

Treatment Stage

Link

Description

All Stages of Treatment

 

OncLive.com First Line Treatment

 

OncLive.com Second Line Treatment

 

OncLive.com Third Line Treatment

Current Treatment Options in MCL

Experts on mantle cell lymphoma discuss first-line, second-line and third-line treatment options available for patients.

While intended for oncologists, MCL patients may find these videos informative.

 

Recorded January-Februay 2024

All Stages of Treatment

 

Onclive.com

Maddocks Shares Updates on Emerging Treatment Strategies in MCL

Efforts to widen the treatment armamentarium for patients with mantle cell lymphoma have been thwarted by increased toxicities and resistance mechanisms with effective therapies such as BTK inhibitors.Published online September 12, 2023

All Stages of Treatment

 

CancerNetwork.com

Current Treatments in

Mantle Cell Lymphoma

A comprehensive overview of MCL with up-to-date information on treatments and risk stratification.

Avyakta Kallam, MD, City of Hope

Julie Vose MD, University of Nebraska Medical Center

Published August 16, 2023

All Stages of Treatment

 

MD Anderson Treatment Algorithm

MCL Treatment Algorithm

from MD Anderson, Houston, Texas

Updated May 21, 2024

Frontline Treatment

Onclive.com 2023 ASH Updates

ASH 2023 Updates on Frontline Therapies in MCL

In this 7 minute video, a panel of MCL experts discuss advances in the front-line setting.

Published February 6, 2024

Frontline Treatment for Older Patients

The Asco Post

First-Line Treatment for Older Patients With Mantle Cell Lymphoma: Venetoclax Plus Standard Chemoimmunotherapy

The phase II PrE0405 achieved a complete response rate of 85% in 33 patients with MCL over age 60 who received bendamustine and rituximab along with venetoclax. The combination was generally well tolerated, according to Craig A. Portell, MD, who presented the data at the 2023 ASH Annual Meeting & Exposition (Abstract 733).

Posted online December 18, 2023  

Frontline Treatment

Onclive.com

Wang Details Caveats to Standards of Care for Treating Patients With MCL

Michael Wang, MD of MD Anderson discusses early identification and appropriate frontline therapy. Therapies may vary for those 65 years and older compared with patients under the age of 65, with several additional factors also having a role in approaching treatment options for a new patient in the clinic.

Published February 23, 2023

Central Nervous System Involvement

Patientpower March 17 2022

Mantle Cell Lymphoma and Central Nervous System Involvement

In this 7-minute video, Peter Martin, MD, at Weill Cornell discusses the approaches taken for treating patients that show CNS involvement.

Published March 18, 2022

Central Nervous System Involvement

British Society for Haematology

Complete response of MCL with CNS involvement at diagnosis with acalabrutinib

This case report describes the first patient to have a complete response with front-line treatment with single agent acalabrutinib for MCL CNS.

Published December 26, 2023

Relapsed/Refractory

OncLive.com November 2023

Evolving Treatment Patterns Lead to Improved Outcomes in Relapsed/Refractory MCL

Patients with R/R MCL have experienced event-free survival and overall survival benefits due to advances in second-line treatment approaches over time.

Published November 20, 2023

Relapsed/Refractory

Targeted Oncology Ocotber 15, 2022

Evaluating Effective Treatment Options and Strategies for Relapsed/Refractory Mantle Cell Lymphoma

Tycel Phillips, MD, City of Hope National Medical Center in Durate, California discussed different strategies that can be effective as second-line treatments in various patients who have relapsed/refractory mantle cell lymphoma.

Published October 15, 2022

Indolent MCL

Indolent MCL

Article about Indolent MCL

 

 

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More Information on Specific Treatments

 

Bispecific Antibodies:

Bispecific Antibodies

LRF Handout

Understanding Lymphoma and Bispecific Antibodies

Bispecific antibodies (bsAbs) are an innovative class of immunotherapy drugs designed to recognize two different targets expressed on the cell surface, called antigens.

Bispecific Antibodies

Dana Farber Cancer Institute

Bispecific Antibody Therapy for Lymphoma: What You Need to Know   

Bispecific antibodies are designed to recognize and bind to more than one cell marker. These therapies provide a valuable new option for patients. 

Published March 14, 2024

Bispecific Antibodies

Onclive.com

The Role of Bispecific Antibodies in Mantle Cell Lymphoma

A comprehensive look at the role of bispecific antibodies, including glofitamab, in the treatment of mantle cell lymphoma.

Presented by Alexy V. Danilov, MD and Bijal D. Shah, MD

Published February 21, 2023

Glofitimab (Columvi)

 

AJMC.com

City of Hope’s Dr Tycel Phillips Discusses Promise of Glofitamab in Heavily Pretreated MCL

An updated analysis from a phase I/II study show that most patients with heavily pretreated relapsed/refractory MCL with a complete response at the end of therapy were alive and progression free at 15 months after therapy ended.

Recorded June 1, 2024

Glofitimab (Columvi)

Curetoday.com

Columvi Shows High Response Rates and Safety in R/R Mantle Cell Lymphoma

After a median follow-up of 19.6 months, the complete response (CR) rate was 78.3% and the overall response rate (ORR) was 85%. 

Published November 19, 2024

Glofitimab( Columvi)

Cancernetwork.com

Glofitamab Yields High Responses in Small R/R Mantle Cell Lymphoma Cohort

Complete responses in patients with pretreated relapsed/refractory mantle cell lymphoma treated with glofitamab appear to be early and enduring.

Published online October 9, 2023

BCL-2 inhibitor

Venetoclax

(Venclexta)

 

Blood ASH Publications

A multicenter analysis of the outcomes with venetoclax in patients with relapsed mantle cell lymphoma

Published June 28, 2023

Venetoclax

(Venclexta)

Onclive.com July 22, 2021

Venetoclax Plus Lenalidomide -Rituximab Elicits High Response Rates in Newly Diagnosed MCL

Published online July 22, 2021

BTK Inhibitors:

Pirtobrutinib

(LOXO-305)

FDA.gov/drugs

FDA Approves Pirtobrutinib (Jaypirca) for Relapsed or Refractory Mantle Cell Lymphoma

On January 27, 2023, the Food and Drug Administration (FDA) granted accelerated approval to pirtobrutinib (Jaypirca) for relapsed or refractory mantle cell lymphoma (MCL) after at least two lines of systemic therapy, including a BTK inhibitor.

Pirtobrutinib

 

The Asco Post

ASH 2023: Jonathon B. Cohen, MD, on Mantle Cell Lymphoma: New Data on Pirtobrutinib

Jonathon B. Cohen, MD, of Winship Cancer Institute, Emory University, discusses safety and efficacy findings from the phase I/II BRUIN study. The trial found that pirtobrutinib continues to demonstrate durable efficacy and a favorable safety profile in heavily pretreated patients with relapsed or refractory mantle cell lymphoma (Abstract 981).

Recorded December, 2023

Pirtobrutinib

Journal of Clinical Oncology

Pirtobrutinib in Covalent Bruton Tyrosine Kinase Inhibitor Pretreated Mantle-Cell Lymphoma

A report of the safety and efficacy of pirtobrutinib in patients with pretreated MCL.

Published August 20, 2023

Pirtobrutinib

Cancernetwork.com

Pirtobrutinib Yields Sustained Efficacy in R/R Mantle Cell Lymphoma

The non-covalent BTK inhibitor shows an encouraging duration of response in patients with heavily pretreated, relapsed/refractory mantle cell lymphoma, according to data.

Published June 12, 2023

Orelabrutinib

(ICP-022)

Ashpublications.org

Orelabrutinib for the treatment of relapsed or refractory MCL: a phase 1/2, open-label, multicenter, single-arm study

ORR was 81.1%, with 27.4% achieving complete response and 53.8% achieving partial response.

Published April 20, 2023

Orelabrutinib

 

Ashpublications.org

Orelabrutinib Effective for the Treatment of R/R MCL

New research from China indicates that the irreversible BTK inhibitor orelabrutinib is an effective treatment for patients with R/R MCL and has an acceptable side effect profile.

Published December, 2023

Ibrutinib

Onclive.com

Dr Habermann on Data Leading to the Withdrawal of Ibrutinib in MCL

In this video, Thomas M. Habermann, MD, discusses the data that led to the decision to withdraw the indication for ibrutinib for the treatment of patients with mantle cell lymphoma.

Published May 16, 2023

Ibrutinib

Targeted Oncology.com

Ibrutinib Withdrawn from Market by Developer for MCL and MZL Indications

Mixed study results for ibrutinib have led the developer to voluntarily withdraw the agent from the United States market for the treatment of mantle cell and marginal zone lymphoma subgroups.

Published Apr 10, 2023

Ibrutinib

Hemasphere.com

Long-term Outcomes With Ibrutinib Treatment for Patients With Relapsed/Refractory MCL:

A Pooled Analysis of 3 Clinical Trials with Nearly 10 Years of Follow-up

A multi-center retrospective study.

Published May 2022.

Acalabrutinib

(Calquence)

Onclive.com/acalabrutinib

Acalabrutinib Demonstrates Long-Term Activity in Relapsed/Refractory MCL

Acalabrutinib monotherapy continued to be highly active and safe in patients with relapsed/refractory mantle cell lymphoma with longer-term follow-up.

Published August 14, 2021

Zanubrutinib

(Brukinsa)

Onclive.com

Zanubrutinib Associated With Longer Treatment Persistence, Duration, and TTD in Real-World MCL

MCL patients treated with ibrutinib (Imbruvica), acalabrutinib (Calquence), or zanubrutinib (Brukinsa) showed that those treated with zanubrutinib experienced longer treatment persistence, treatment duration, time to discontinuation (TTD), and lower switching rates compared with acalabrutinib and ibrutinib.

Published April 17, 2024

Zanubrutinib

(Brukinsa)

Blood and Lymphatic Cancer: Targets and Therapy

Zanubrutinib in Mantle Cell Lymphoma Management: A Comprehensive Review

Zanubrutinib (BGB-3111) is the newest BTK inhibitor used for the treatment of MCL. It was approved by the FDA on November 14, 2019, for adult patients with MCL who have received at least one prior therapy.

Published November 24, 2023

CAR T:

CAR-T

LLS CAR T Fact Sheet

 

CAR T Flow Chart

 

This fact sheet provides information about chimeric antigen receptor (CAR) T-cell therapy, which is a type of immunotherapy.

CAR-T

Breyanzi

lisocabtagene maraleucel

FDA.gov

FDA Approves CAR T Cell Treatment for Resistant Mantle Cell Lymphoma

On May 30, 2024, the Food and Drug Administration approved lisocabtagene maraleucel (Breyanzi, Juno Therapeutics, Inc.) for adult patients with relapsed or refractory mantle cell lymphoma (MCL) who have received at least two prior lines of systemic therapy, including a Bruton tyrosine kinase inhibitor (BTKi).

CAR T

brexucabtagene autoleucel (brexu-cel; Tecartus) 

Onclive.com

Long-Term Data Support Continued Use of Brexu-Cel in R/R Mantle Cell Lymphoma

Five-year follow-up data from cohorts 1 and 2 of the phase 1/2 ZUMA-2 trial (NCT02601313) showed that treatment with the CAR T-cell therapy brexucabtagene autoleucel (brexu-cel; Tecartus) led to durable responses and high overall survival (OS) rates in patients with relapsed/refractory MCL.

Published December 18, 2024

CAR-T

Onclive.com

Meta-Analysis Shows Efficacy, Safety of CAR T-Cell Therapy in R/R Mantle Cell Lymphoma

Key Takeaways

·         CAR T-cell therapy in MCL shows high efficacy with an ORR of 89% and CR rate of 74%.

·         Safety concerns include 86% incidence of any-grade CRS and 52% of any-grade ICANS.

·         Subgroup analyses highlight response variability based on Ki-67 index, TP53 mutations, and prior treatments.

·         Brexucabtagene autoleucel and lisocabtagene maraleucel are FDA-approved for relapsed/refractory MCL.

·         Future research should focus on long-term efficacy and optimizing treatment strategies.

Published Ocotvber 14, 2024

CAR-T

Tecartus (brexucabtagene autoleucel, also known as brexu-cel),

Curetoday.com

‘Remarkable’ Results from Tecartus in Patients With R/R MCL

Patients with relapsed/refractory MCL described as “older, sicker and more heavily pretreated” than those previously studied experienced impressive responses to treatment with CAR-T cell therapy Tecartus (brexucabtagene autoleucel, also known as brexu-cel), according to recent study findings.

Published January 4, 2024

CAR-T

Blood-ASH Publications

Does BTKi improve CAR T-cell therapy in MCL?

The phase 1/2 TARMAC study establishes the use of ibrutinib, starting before apheresis, with CAR T cells to be both safe and feasible in patients with MCL. Correlative analyses presented successfully lay the foundation to determine whether BTKi inhibition augments CD19 CAR T-cell activity in patients with MCL and other lymphomas.

Published February 22, 2024

CAR-T

Blood Cancers Today

Liso-cel Effective in Patients with Relapsed or Refractory MCL with High-risk Disease Features

Lisocabtagene maraleucel (liso-cel) demonstrated clinically meaningful efficacy across subgroups of patients with relapsed or refractory MCL with high-risk disease features such as high proliferation index (Ki-67 ≥30%), TP53 mutation, blastoid morphology, and secondary central nervous system (CNS) lymphoma, according to a recent study.

Published December 6, 2023

CAR-T

Targeted Oncology

Lisocabtagene Maraleucel Induces Significant Response in FL and MCL Populations

Treatment with lisocabtagene maraleucel (liso-cel; Breyanzi) led to statistically significant and clinically meaningful responses in the phase 2 TRANSCEND FL study (NCT04245839) of the agent in patients with relapsed/refractory follicular lymphoma (FL), and in the phase 1 TRANSCEND NHL 001 study (NCT02631044) of patients with relapsed/refractory B-cell non-Hodgkin lymphoma, including mantle cell lymphoma.

Published May 2, 2023

CAR-T

FDA.gov

CAR T cell Immunotherapies: FDA Safety Communication - FDA Investigating Serious Risk of T-cell Malignancy

The FDA warns that T-cell malignancies have occurred in patients treated with several products in the class. The products include:

  • Abecma (idecabtagene vicleucel)
  • Breyanzi (lisocabtagene maraleucel)
  • Carvykti (ciltacabtagene autoleucel)
  • Kymriah (tisagenlecleucel)
  • Tecartus (brexucabtagene autoleucel)
  • Yescarta (axicabtagene ciloleucel)

Posted online November 28, 2023

CAR-T

Biospace.com

Oncologists Defend CAR-T After FDA Advisory

The FDA announced that BCMA- or CD19-directed autologous CAR T cell therapies were under review after the agency received reports of several secondary blood cancers in patients who have been treated with them. But leading oncologists say the cancers appear to be rare and the therapy is lifesaving in the context of deadly malignancies that have already outwitted chemotherapy and radiation.

Published December 18, 2023

CAR-T

BMTinfonet.org Free Booklet

CAR T-Cell Therapy: What to Expect Before, During and After

If you are considering CAR T-Cell Therapy. This free easy-to-read colorful booklet will help you understand what to expect when going through treatment.

CAR-T

Bmtinfonet.org

Quality of Life after CAR T-cell Therapy

Most patients who receive CAR T-cell therapy report a good quality of life long-term. In this 40 minute videso, learn how CAR T-cell therapy is performed and its short-term and long-term effects on patients and caregivers. Discover key differences between CAR T-cell, stem cell transplant and other and chemotherapy treatments.

Recorded April 30, 2024

CAR-T with Radiation

MDAnderson.org

Optimizing CAR T cell therapy with bridging radiation therapy

The more tumor cells that are eliminated with radiation therapy before CAR T cell therapy, the less work the CAR T cells have to do.

Published September 29, 2023

HT Scoring

 

Targetedonc.com

HT Scoring Identifies Risk and Outcomes of CAR T Therapy for MCL

Analyses show that a hematoxicity scoring system could identify poor treatment outcomes for patients with MCL treated with brexucabtagene autoleucel (brexu-cel; Tecartus) CAR T-cell therapy.

Published October 29, 2023

Allogenic CAR-T

Onclive.com August 2020

ALLO-501– and ALLO-647–Based Lymphodepletion Well Tolerated in Advanced Non-Hodgkin Lymphoma

Sattva Neelapu, MD, MD Anderson, discusses the potential of donor CAR-T cell therapy.

Cytokine Release Syndrome (CRS)

Frontiers in Immunology

Cytokine release syndrome and cancer immunotherapies – historical challenges and promising futures

This review sheds light on the potential immunotherapeutic approaches that can be used to overcome CRS associated with T cell activation.

Published May 25, 2023

Chemotherapy:

R-CHOP

 

Hyper-CVAD

 

VcR-CAP

 

WebMD.com

Combination Chemotherapy for Mantle Cell Lymphoma

Doctors use several chemotherapy combinations to treat MCL, named for the first letter of each drug. Here is an overview of the drugs used in these therapies.

Updated February 24, 2023

Combination Therapies:

Acalabrutinib

(Calquence) and Zanubrutinib

(Brukinsa)

Onclive.com

BTK Inhibitor–Associated AEs Can Influence Treatment Selection in MCL

A discussion of the current roles of acalabrutinib and zanubrutinib in MCL management, how the AE profiles of each agent influence treatment decisions, and ongoing research efforts that aim to determine the feasibility of leveraging BTK inhibitors in combination regimens for specific patient subsets.

Acalabrutinib and Rituximab

CancerTherapyAdviser.com

Regimen Produces High Response Rate in Newly Diagnosed MCL

Acalabrutinib and rituximab (AR) given before and after chemoimmunotherapy and transplant appears safe and active in patients with mantle cell lymphoma (MCL), according to research presented at the ASH Annual Meeting 2023.

Published online December 12, 2023

Acalabrutinib

+Bendamustine

+Rituximab

Onclive.com

Frontline Acalabrutinib/BR Regimen Significantly Improves PFS in Mantle Cell Lymphoma

The addition of Acalabrutinib to bendamustine and rituximab demonstrated a statistically significant and clinically meaningful improvement in PFS.

Published June 17, 2024

Acalabrutinib

+Bendamustine

+Rituximab

Targetedonc.om

Discussing The Role of Acalabrutinib in Triplet Therapy for MCL

Tycel Phillips, MD discusses the addition of the BTK inhibitor acalabrutinib to the combination of bendamustine and rituximab proved to be tolerable and effective enough to warrant expansion to a phase 3 trial for patients with either treatment-naive or relapsed/refractory mantle cell lymphoma.

Published July 18, 2023

Acalabrutinib

+Venetoclax

+Obinutuzumab

Onclive.com

Acalabrutinib Triplet Shows Early Signals of Activity, Safety in R/R Mantle Cell Lymphoma

The combination regimen comprised of acalabrutinib, venetoclax, and obinutuzumab proved to be safe and feasible and to elicit responses in patients with high-risk, relapsed or refractory mantle cell lymphoma.

Published December 19, 2023

Ibrutinib plus Venetoclax

 

ASHpublications.org/Blood

Ready, AIM, stop: ibrutinib plus venetoclax in MCL

A 7-year follow-up of the AIM trial assessing the combination of ibrutinib and venetoclax in patients with MCL, most of whom had relapsed or had refractory disease. In this updated report, they highlight the long-term benefit and the results of a protocol amendment allowing patients in confirmed measurable residual disease (MRD)-negative complete remissions to stop therapy after a 1-year minimum of combination treatment.

CAR T CTL019 Plus Ibrutinib

 

Onclive.com

CTL019 Plus Ibrutinib is Feasible and Effective in Relapsed/Refractory MCL

Treatment with CTL019 CAR T cells, the investigational form of tisagenlecleucel (Kymriah), in combination with time-limited ibrutinib (Imbruvica) demonstrated efficacy in patients with relapsed/refractory mantle cell lymphoma (MCL), according to findings from the phase 2 TARMAC trial (NCT04234061) published in Blood.

Published March 29, 2024

CAR T CD19 Plus Acalabrutinib

 

Onclive.com

CD19 CAR T Cells Plus Acalabrutinib Shows Early Activity in Relapsed/Refractory MCL

CD19 CAR T cells paired with acalabrutinib (Calquence) was found to be well tolerated and to elicit responses in patients with relapsed/refractory mantle cell lymphoma.

Published January 29, 2024

Mosunetuzumab Plus Polatuzumab Vedotin 

 

Blood Cancers Today

Promising Response Rates with Mosunetuzumab Plus Polatuzumab Vedotin in MCL

Patients with relapsed or refractory MCL who were previously treated with BTK inhibitor therapy achieved high rates of complete response (CR) when treated with a doublet regimen of fixed-duration subcutaneous (SC) mosunetuzumab plus polatuzumab vedotin (M-Pola), according to an ongoing phase Ib/II trial.

Published November 21, 2023

Bendamustine/Obinutuzumab

Onclive.com

Bendamustine/Obinutuzumab Induction Generates Responses and MRD Negativity in Treatment-Naive MCL

Induction therapy achieved higher complete response rates than historical bendamustine plus rituximab data in mantle cell lymphoma.

Published November 18, 2024x

Zilovertamab and Ibrutinib

 

ASH publications November 15, 2022

Phase 1/2 Study of Zilovertamab and Ibrutinib in Mantle Cell Lymphoma MCL, CLL, or MZL

The combination is very promising in patients with R/R MCL compared with historical results for Ibrutinib alone.

Ibrutinib and Umbralisib

 

Ibrutinib and Umbralisib

CLL and MCL Survival Benefit from Umbralisib Plus Ibrutinib Holds Up in 4-Year Follow-Up

Published online July 8, 2020

Ibrutinib and Venetoclax

ASH Meeting 2023

Mantle cell lymphoma patients see improved outcomes with oral combination of ibrutinib and venetoclax

The targeted therapy combination of ibrutinib and venetoclax significantly improved progression-free survival and achieved an overall remission rate in 82% of patients with relapsed/refractory MCL according to researchers at MD Anderson Cancer Center.

Published December 11, 2023

Ibrutinib and Venetoclax

Patientpower.info

ASH 2023: Mantle Cell Lymphoma Updates

In this 3-minute video, Matthew Matasar, MD discusses the results of the Sympatico trial in MCL and what it means for relapsed patients.

Published online December 14, 2023

Lenalidomide and Rituximab

Oncology Nursing News

Lenalidomide/Rituximab Induces Durable Responses in Mantle Cell Lymphoma in 9-Year Follow-Up

The combination of lenalidomide and rituximab led to a median progression-free survival of 9 years—with 17 ongoing responses—among patients with mantle cell lymphoma.

Published November 27, 2023

Graft -versus- Host Disease:

Graft-versus-Host Disease

FDA Approval

FDA.gov

FDA approves axatilimab-csfr for chronic graft-versus-host disease

On August 14, 2024, the Food and Drug Administration approved axatilimab-csfr (Niktimvo, Incyte Corporation), a colony stimulating factor-1 receptor-blocking antibody, for the treatment of chronic graft-versus-host disease after failure of at least two prior lines of systemic therapy.

Graft-versus-Host Disease

BMTinfonet.org Free Booklet

Graft-versus-host disease (GVHD) is a complication that often occurs after a transplant using cells from a donor. This free booklet covers:

·         The symptoms of GVHD

·         The organs it can affect

·         Treatment options

·         Steps you can take to minimize the impact of GVHD on your daily life.

Graft-versus-Host Disease

PatientPower.info

Why 2022 Was a Banner Year for GVHD

For the first time ever, transplant doctors had three different drugs at their disposal to treat it. Two of these drugs the U.S. Food and Drug Administration (FDA) had approved in 2021. Learn more about why patients with chronic GVHD have more reason for optimism than ever before.

Published March 10, 2023

Stem Cell Transplantation:

Stem Cell Transplants

LLS Transplantation Booklet

Blood and Marrow Stem Cell Transplantation

This 72-page PDF booklet extensively covers the many issues associated with ASCT.

Updated April 2023

Stem Cell Transplants

Bmtinfonet.org

Celebrating My Second Re-Birthday: 15 Lessons Learned on Surviving and Thriving after a Bone Marrow Transplant

Nancy Dana underwent a stem cell transplant after being diagnosed with MCL. In this video, she shares 15 helpful lessons she learned about preparing for a transplant, making the hospital stay as comfortable as possible, and strategies for recovering and approaching life after transplant.

Recorded May 22, 2024

Stem Cell Transplants

BMT InfoNet ASCT Patient connect

BMTInfoNet Caring Connections Program

Connecting patients with people who have had transplants.

Stem Cell Transplants

ASH.confex.com

Lack of Benefit of Autologous Hematopoietic Cell Transplantation in MCL Patients in First Complete Remission with Undetectable Minimal Residual Disease

In this interim analysis, in the era of highly effective induction and maintenance regimens, MCL pts in first CR with uMRD6 did not benefit from consolidative auto-HCT. Pts who remain MRD+ after induction may benefit from auto-HCT. Longer follow-up will be important to confirm these findings.

 

ASCT Induction and Maintnance options-

Obinutuzumab VS Rituximab

 

Hematologyadvisor.com

Obinutuzumab May Control MCL Better Than Rituximab

The use of obinutuzumab rather than rituximab for induction prior to and maintenance after transplantation among patients with newly diagnosed MCL resulted in improved disease control, according to the results of a study published in the journal Blood. The researchers also observed longer survival with obinutuzumab compared with rituximab.

Published August 8, 2024

ASCT vs CAR-T

Current Treatment Options in Oncology

Is There Still a Role for Transplant for Patients with Mantle Cell Lymphoma in the Era of Cell Therapy?

MCL specialists discuss the value of ASCT, the current standard of care, to the newer CAR-T option and what subtypes would benefit most from each.

Published October 13, 2022

Radiation:

Radiation

MDAnderson.org

Radiation treatment for blood cancers

This article details the four special therapy types of radiation used during blood cancer treatment.

Published April 21, 2022

PRadiation

Low dose radiation for MCL

Low-dose radiation (4 Gy) with/without concurrent chemotherapy is highly effective for relapsed, refractory mantle cell lymphoma.

Published July 9, 2019

Testing:

Biomarkers

LLS Information Booklet

Biomarker Testing for Cancer Treatment

This fact sheet provides information about biomarker testing, which offers a way to look for genes, proteins, and other substances that can provide information about cancer.

Minimal Residual Disease (MRD)

LLS The Bloodline.org

Mission to Complete Remission: Utilizing MRD Testing in Blood Cancer

In this podcast episode, Dr. Adriana Rossi of Mt. Sinai Hospital in New York talks about how MRD testing is being utilized for blood cancer patients and how MRD testing is guiding treatment decisions, predicting relapse and prognosis.  

Minimal Residual Disease (MRD)

MRD Information

 

MRD Chart

 

Minimal Residual Disease Video

LLS pamphlet on MRD

A two- page document which explains MRD and related testing techniques.

 

LLS video explaining MRD

Genomics Testing

LLS The Bloodline Podcast

The Revolution of Genomics: How Testing Leads to Individualized Treatment

In this podcast you will learn about the crucial collaboration between pathologists and oncologists to make sure patients are getting the most accurate diagnosis and best possible treatments for their blood cancers.

November 27, 2023

Molecular Profiling

Cancer Molecular Profiling

LLS Information Booklet

An overview of molecular profiling technologies, which include immunohistochemistry (IHC), fluorescence in situ hybridization (FISH), next-generation sequencing (NGS) and quantitative polymerase chain reaction (qPCR).

Tumor Lysis Syndrome:

Tumor Lysis Syndrome (TLS)

 

 

Targeted Oncology February 2023

Evaluating Risk Factors and Treatment for Tumor Lysis Syndrome

Javier Pinilla-Ibarz, MD, Moffit Center, discusses risk factors and treatment options for tumor lysis syndrome.

 

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Upcoming Ideas in Mantle Cell Lymphoma:

NHL Cancer Diagnosis and Treatments

 

 

Topic:

 

Article:

 

 

Link:

CAR-E

Genetic Engineering & Biotech News

 

CAR-T Meets CAR-E, an Enhancer Platform to Prevent Cancer Relapse

Scientists at Dana-Farber have developed what they call the CAR-E therapeutic platform. The “E” in CAR-E stands for “Enhancer.” With this platform, a target antigen is fused with a low-affinity enhancer molecule to enable the precise targeting of the CAR-T molecule. The platform also facilitates the preferential delivery of immune-modulating agents post-infusion.

Published July 30, 2024

BTK Degrader

NX-2127

 

Blood ASH Publications

 

A First-in-Human Phase 1 Trial of NX-2127, a First-in-Class Bruton's Tyrosine Kinase (BTK) Dual-Targeted Protein Degrader with Immunomodulatory Activity, in Patients with Relapsed/Refractory B Cell Malignancies

This trial consisted of 5 MCL patients and is actively enrolling. NX-2127 is administered orally once daily in 28-day cycles.

Published November 28, 2023

Omidubicel

 

Targeted Oncology.com

 

FDA Approves Omidubicel for Blood Cancers in Need of Transplant 

Omidubicel showed encouraging clinical benefit in a phase 3 study vs standard myeloablative umbilical cord blood in patients with blood cancers in need of an allogeneic hematopoietic stem cell transplant. Now, the FDA has approved the agent for this indication.

Published April 17, 2023

AT101

Pennmedicine.org

 

First-in-human clinical trial of CAR T cell therapy with new binding mechanism shows promising early responses

Early results from a Phase I clinical trial of AT101, a new CAR T cell therapy that uses a distinct binding mechanism to target CD19, show a 100 percent complete response (CR) rate at the higher dose levels studied in the trial, according to researchers from the University of Pennsylvania Perelman School of Medicine.

Published online December 9, 2023

CB-010

Targetedonc.com

 

CB-010 Yields Promising Data in R/R B-Cell Non-Hodgkin Lymphoma

Treatment with CB-010, an allogeneic anti-CD19 CAR T-cell therapy, in patients with relapsed or refractory B-cell non-Hodgkin lymphoma was generally well-tolerated with a safety profile consistent with autologous or allogeneic anti-CD19 CAR-T cell therapies.

Published July 17, 2023

LP-284

CancerNetwork.com

 

FDA Grants Orphan Drug Designation to Investigational Drug for Mantle Cell Lymphoma

The agent produced anti-tumor activity in MCL. LP-284 shrunk and delayed progression in MCL xenograft tumors that had developed resistance following pretreatment with ibrutinib and bortezomib.

Published January 16, 2023

LP-284

Oncotarget.com/article

 

LP-284, a small molecule acylfulvene, exerts potent antitumor activity in preclinical non-Hodgkin's lymphoma models and in cells deficient in DNA damage repair.

DDR is an intricate and sophisticated system where different types of DNA damage is repaired through different routes. Understanding the specific DNA damage and the genes involved in the corresponding repair pathway would help pinpoint targeted NHL patient populations. 

Published June 12, 2023

LV20.19

Onclive.com

 

Bispecific CD20/CD19-targeted CAR T-cell Therapies May Improve Outcomes in MCL

Improved responses and favorable toxicity profiles were seen with the use of a lentiviral bispecific CAR T-cell therapy targeting both CD19 and CD20 B-cell antigens (LV20.19 CAR) in patients with mantle cell lymphoma, indicating that dual-targeting strategies could maximize patient benefit with CAR T-cell therapy in this space, according to Nirav N. Shah, MD.

Published March 15, 2023

CAR-T

Technologynetworks.com/biopharma

 

Blood Tests Could Predict Poor CAR T-Cell Therapy Outcomes

Two common and easily measured blood tests can identify in advance which patients are at high risk for poor outcomes after treatment with CD19-targeted CAR T cells.

Published February 6, 2024

CAR-T

Mediacl University of South Carolina

 

CAR-T-cell therapy without side effects? Hollings researchers show results in preclinical models

Graduate student Megan Tennant and Richard O'Neil, Ph.D., have promising preclinical results of a new way to administer CAR-T-cell therapy that could mean fewer side effects and the possibility of treating more disease types. 

Published September 7, 2023

CAR-Ts VS

CAR-NKs

 

Scrip PharmaIintelligence.informa.com

 

The Cancer Cell Therapy Showdown: CAR-Ts Versus CAR-NKs

Will CAR-NK cell therapies overshadow traditional CAR-T options for the treatment of some cancers? While preliminary data for CAR-NKs point to enhanced safety and solid tumor penetration, oncologists and executives discuss the pros and cons of these two approaches to cell therapy.

Published March 8, 2023

CRISPR

Onclive.com

 

CRISPR-Based Anti-CD19 CAR T-Cell Therapy Is Safe and Effective in Relapsed/Refractory NHL

The CRISPR-based nonviral PD-1 locus-specific integrated CD19-directed CAR T-cell therapy BRL-201 was associated with a manageable safety profile and elicited early indications of efficacy in patients with relapsed/refractory non-Hodgkin lymphoma (NHL).

Published January 9. 2024

CRISPR

MSKCC.org

 

Testing CRISPR-Edited CAR T Cell Therapy in Lymphoma Clinical Trial

CRISPR allows researchers to precisely target and modify specific genes within the T cell genome, which makes the CAR T cells work better.

Published March 8, 2023

Epitope editing

Science Translational Medicine

 

Epitope base editing CD45 in hematopoietic cells enables universal blood cancer immune therapy

By targeting a pan-hematologic antigen, a single therapeutic could be used to treat almost all hematologic malignancies, thereby accelerating clinical development.

Published August 31, 2023

Ga-PentixaFor Imaging

MedicalXpress: Society of Nuclear Medicine

 

Novel PET agent effectively detects multiple cancers, identifies patients for targeted therapies.

A new molecular imaging radiotracer can precisely diagnose a variety of cancers, providing a roadmap to identify patients who may benefit from targeted radionuclide therapies.

Published November 17, 2022

FOXO1

The Journal of Clinical Investigation

 

Discovery Suggests New Way to Target Mantle Cell Lymphoma

A research team at Weill Cornell discovered that inhibiting the protein FOXO1 is a targetable vulnerability of mantle cell lymphoma, potentially leading to new treatments.

Published October 25, 2022 

Zilovertamab

+Ibrutinib

Cancernetwork.com January 6, 2022

 

Study Design Confirmed for Phase 3 Trial of Zilovertamab/Ibrutinib in Mantle Cell Lymphoma

A first-in-class, humanized monoclonal antibody, zilovertamab achieves high-affinity binding with to an epitope on ROR1 that is expressed on the plasma membrane of different cancer cells.

BTK Resistance

Targeted Oncology March 25, 2021

 

Addition of Obinutuzumab and Venetoclax to Ibrutinib Overcomes Resistance in R/R MCL, Shows Activity in Newly Diagnosed MCL

In relapsed and untreated patients, the combination of obinutuzumab, ibrutinib, and venetoclax achieved molecular response rates and was found to be well tolerated, results from the phase 1/2 OAsIs trial demonstrate.

SOX11

Onclive.com

 

SOX11 Inhibitors Demonstrate Early Activity in MCL Models

Published June 24, 2021

TG-1701

Cancernetwork.com

 

Patients With CLL and Other B-Cell Malignancies Benefitted from TG-1701

Published June 5, 2021

Vaccine

Journal of Experimental Medicine June 19, 2020

 

Autologous tumor cell vaccine induces antitumor T cell immune responses in patients with mantle cell lymphoma: A phase I/II trial

Published June 19, 2020

 

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MCL Patient Care Information

 

Topic

 

Link

Description

3D Model Anatomical Library

LLS 3D library

Interactive 3D models help to visualize the lymph node system, node aspiration, bone marrow biopsies, blood cell development, imaging tests, and more.

BTK Inhibitor Side Effects

IWMF.com

BTK inhibitors come with a wide range of potential side effects. This article discusses ways to manage them.

Published October 2023

Caregivers

Medlineplus.gov

Caregiving can be an extremely rewarding experience, but it can also be physically and emotionally draining. This article provides some excellent tips for taking care of yourself.

Caregivers

LLS Webcast

Caregiving Over Coffee: Giving Yourself Grace

This video discusses the important role of caregivers and emphasizes their need to take care of themselves.

Recorded November 28, 2023

Drug Information

Medline Plus drug information

Detailed information on prescription drugs, herbs, and supplements.

Drug Interactions

DrugBank Online

Simply enter the names of two or more drugs and The Drug Interaction Checker will check for contraindications.

Drug Interactions and Citrus

Citrus fruits and drug interactions

Undesirable effects of citrus juice on the pharmacokinetics of drugs with a focus on recent studies.

Drug Interactions and Grapefruit

Mayoclinic.org

Mixing grapefruit with some medicines can cause serious health problems. If you take prescription medicines, ask your doctor whether it's OK to eat grapefruit or other citrus products while taking the medicines.

Blood Clots and Deep Vein Thrombosis (DVT)

 

LLS Fact Sheet

Two-page information sheet about blood clots and deep vein thrombosis (DVT) with information on prevention, treatment, and emergency complications. 

Exercise

The Bloodline.org

Exercise and Cancer: Celebration That You CAN

Exercise and Cancer: Celebration That You CAN

Exercise and Cancer: Celebration That You CAN

Exercise and Cancer: Celebration That You Can

Exercise, or simply moving the body, can be an important part of cancer recovery, both physically and emotionally. In this episode, Dr. Shernan Holtan of Roswell Park and blood cancer survivors, Paul Rothweiler and Joe Grey, share about a clinical trial they developed to introduce a personalized strength training program to patients and caregivers.

Fatigue

Bmtinfonet.org

Living Well after Treatment: Coping with Fatigue

Many patients experience significant fatigue for months or years after a stem cell transplant or CAR T-cell therapy. Learn a variety of strategies you can try to manage chronic fatigue and lessen its impact on your daily activities.

Recorded April 28, 2024

Fatigue

Bmtinfonet.org

Fighting Fatigue: Ways to Save Energy and Build Back Endurance

Learn about strategies to conserve energy; adaptive equipment that can help with energy conservation; and improving stamina and strength through exercises that patients can perform at home.

Recorded April 28, 2024

Fatigue

LLS.org/booklet/cancer-related-fatigue

Cancer-Related Fatigue

This fact sheet addresses some common questions that people may have about cancer-related fatigue.

Insomnia

Managing Sleep Problems after Transplant

Insomnia is a common problem after a stem cell transplant. Traditional treatments, such as medications, can have side effects and are often ineffective long-term. An audio recording presented by Eric Zhou PhD, Division of Sleep Medicine, Dana-Farber Cancer Institute.

Lab and Imaging

Tests

Lab and imaging tests video

This LLS video series aims to answer many questions patients have about lab and imaging tests.

Immunoglobulin

Patientpower.info

Normal Immunoglobulin Levels by Age: Understanding Immunoglobulin

IVIG

Intravenous Immunoglobulin Treatment

An overview of the clinical uses of intravenous immunoglobulin with a brief discussion regarding its use in hematology.

IVIG

IVIG Patient Information

More information and resources on IVIG by UpToDate.com

Medical Dictionary

Merriam Webster Medical Dictionary

Search medical term definitions online.

Medical calculators

MDCalc.com

 

An assortment of medical calculators.

MIPI calculator

Calculator.com

This MCL prognostic index (MIPI) score calculator stratifies patients into low, intermediate, and high-risk groups based on independent prognostic factors.

Neuropathy

BMT Infonet July 2020

Managing Peripheral Neuropathy after Transplant:

A Prerecorded workshop presented by Sasha Knowlton, MD, Massachusetts General Hospital

Neutropenic Diet

MSKCC.org

Neutropenic Diet

Information from Memorial Sloan Kettering on the diet, food preparation, storage, and recipes.

Neutropenic Diet

Neutropenia Diet Tips

This video from Patient Power features Julie Lanford, an oncology-certified dietitian; she shares the four keys to food preparation and safety for cancer patients on a neutropenic diet

Nutrition

BMTinfonet.org

Nutrition: What You Eat Does Matter

This presentation explains how to manage some common eating difficulties experienced by stem cell transplant recipients. It also discusses the impact of transplant and diet on long-term health problems such as metabolic syndrome and osteoporosis, and common myths about the relationship between cancer and certain foods and diets.

Nutrition

LLS Free Nutrition Consultation

 

LLS Nutrition Fact Sheet

 

LLS Nutrition and Cancer En Espanol

 

LLS Nutrition Series

Patients and caregivers may receive free one-on-one phone and email consultations with an oncology dietitian. A Spanish Language video is also available.

Nutrition

ACS Nutrition Guides for patients and survivors

Nutrition guidance during and post-treatment.

Nutrition

ACS Nutrition FAQs

Nutrition and Physical Activity During and After Cancer Treatment: Answers to Common Questions.

Open Notes

Opennotes.org

After an office visit, doctors, nurses and other health care providers write notes that summarize important information about you. These notes can help you manage your healthcare.

How to use Open Notes

Pets

Cancer and Pets

Joys and Challenges of Pets in Your Home When You Have Cancer- a webcast from CancerCare.

Port maintenance

Drugs.com

How to care for an Implanted Venous Access Port.

Side Effects

LLS Education Video

Managing Side Effects

Jeffrey Zonder, MD of Karmanos Cancer Institute in Detroit, MI discusses the side effects that blood cancer patients may experience during and after treatment. 

Stress

LLS Booklet

Managing Stress: How stress affects you and ways to cope

Information about how stress affects you and tips for stress management.

 

Survivorship

LLS Survivorship Workbook

Navigating Life During and After a Blood Cancer Diagnosis

Use the Survivorship Workbook to collect all the important information you need throughout diagnosis, treatment, follow-up care and long-term management of a blood cancer.

 

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Abbreviations and Terms Used on the MCL Mailing List

 

Listings of Abbreviations:

 

FDA.gov

FDA Patient Friendly Language for Cancer Clinical Trials

Hemeonc.org

Listing of MCL Chemotherapies and their abbreviations

LymphomaInfo.net

 

Glossary of Lymphoma Terms

Burkitts.org

Common Cancer Acronyms from Burkitt’s Lymphoma Resources

ClinicalTrials.gov

 

Clinical Trial Glossary Terms

Abbreviations:

Definitions:

Information:

CBC

Complete Blood Count

Listing of laboratory tests

Search for the lab test of interest

for the CBC blood test

Labtestsonline.org

CI

Confidence Interval

In study results, the confidence interval represents the accuracy or precision of an estimate.

CR

Complete Response

The disappearance of all signs of cancer in response to treatment. This does not always mean the cancer has been cured.

CRS

Cytokine Release Syndrome 

CRS is an acute systemic inflammatory syndrome characterized by fever and multiple organ dysfunction that is associated with chimeric antigen receptor (CAR)-T cell therapy, therapeutic antibodies, and haploidentical allogeneic transplantation.

DoR

Duration of Response

Duration of response (DoR) is the length of time that a tumor continues to respond to treatment without the cancer growing or spreading. Cancer drugs that demonstrate improved DoR can produce a durable, meaningful delay in disease progression.

PR

Partial Response

Partial response (PR) implies that further treatment will probably be required to attempt a cure. In some slow-growing tumors (including low-grade lymphomas) no further treatment may be immediately necessary until the disease starts increasing in size again.

ORR

Overall response rate

 

Overall response rate (ORR) is the proportion of patients in a trial whose tumor is destroyed or significantly reduced by a drug. ORR is generally defined as the sum of complete responses (CRs) and partial responses (PRs).  Improved ORR offers tangible proof that the drug is working.  

OS

Overall Survival

Overall survival (OS) measures how long patients, who undergo a certain treatment regimen, live compared to patients who are in a control group. If a clinical trial demonstrates improved OS, it provides evidence of the drug’s value. OS is a strong and precise endpoint, as it requires having more patients and longer follow-ups compared to other clinical trial endpoints. OS is often considered the “gold standard” for measuring the clinical benefits of a cancer drug.

PFS

Progression-free survival

 

The length of time during and after the treatment of a disease, such as cancer, that a patient lives with the disease but it does not get worse.

BR, RB, B+R, R+B, B-R, R-B

 

Rituximab plus Bendamustine: various combination therapy

Alternative treatment to R-CHOP see this article

R-CHOP

Rituximab, cyclophosphamide, doxorubicin, vincristine, and prednisone

A regimen of cyclophosphamide, doxorubicin, vincristine, and prednisone, with rituximab (R-CHOP) (or without-CHOP) is the standard first-line treatment for aggressive non-Hodgkin lymphoma.

 

R2

Lenalidomide (Revlimid) and rituximab

A combination therapy of the oral drug Revlimid with Rituxan infusions.

 

W&W

Watch and Wait

Purposeful delay of the initial treatment see this article

 

BMT

Bone Marrow Transplant

A lay discussion on types of stem cell transplants see this article

Overview of the three different types of stem cell transplants-

ASCT overview MedlinePlus

 

Allo SCT

Allogeneic Transplant

Allogeneic stem cell transplantation-LLS

 

Auto SCT

Autologous Stem Cell Transplant

A series of videos on transplantation issues before and after treatment:

Be the Match Basics of BMT

 

VR-CAP

5 drug combination therapy

VR-CAP definition and studies

GVHD

Graft vs Host Disease

Graft vs. Host Disease definition

 

 

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Last updated January 11, 2025 by: ACOR MCL Listserver group