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Non-Hodgkin Lymphoma Booklet Understanding Understanding Non-Hodgkin Non-Hodgkin Lymphoma Lymphoma This patient guide is supported through unrestricted educational grants from: A Guide for Patients, 8th Edition Survivors, and Loved Ones Contact the Lymphoma Research Foundation Helpline: (800) 500-9976 [email protected] Website: lymphoma.org Fall 2020 Lymphoma Research Foundation (LRF) Helpline and Clinical Trials FOCUS ON LYMPHOMA Information Service MOBILE APP CONTACT THE LRF HELPLINE The Lymphoma Research Foundation’s Trained staff are available to answer questions mobile app, Focus on Lymphoma, is a and provide support to patients, caregivers and great tool and resource for lymphoma healthcare professionals in any language. patients to manage their disease. Our support services include: Focus on Lymphoma is the fi rst mobile • Information on lymphoma, treatment options, app that provides patients and side effect management and current research fi ndings caregivers comprehensive content • Financial assistance for eligible patients and based on their lymphoma subtype and tools to help manage their diagnosis, referrals for additional fi nancial, legal and including a medication manager, doctor sessions tool and side effects tracker. insurance help • Clinical trial searches based on patient’s The Focus on Lymphoma mobile app was recently named Best App by PR News and diagnosis and treatment history is available for free download for iOS and Android devices in the Apple App Store • Support through LRF’s Lymphoma Support and Google Play. Network, a national one-to one volunteer patient peer program For further information on LRF’s award winning mobile app or any of our Monday through Friday programs and services, call the LRF Helpline toll free (800) 500-9976, 9:30 am − 7:30 pm Eastern Standard Time (EST) Toll-Free (800) 500-9976 email [email protected] or visit us at lymphoma.org. or email [email protected] Understanding Non-Hodgkin Lymphoma A Guide For Patients, Survivors, and Loved Ones Fall 2020 8th Edition This guide is an educational resource compiled by the Lymphoma Research Foundation (LRF) to provide general information on adult non-Hodgkin lymphoma. This booklet is not intended to replace individualized medical care or the advice of a patient’s doctor. Patients are strongly encouraged to talk to their doctors for complete information on how their disease should be diagnosed, treated, and followed. Before starting treatment, patients should discuss the potential benefits and side effects of cancer therapies with their physician. Contact the Lymphoma Research Foundation Helpline: (800) 500-9976 [email protected] Website: lymphoma.org This patient guide is supported through unrestricted educational grants from: © 2020 Lymphoma Research Foundation. Information contained herein is the property of the Lymphoma Research Foundation (LRF). Any portion may be reprinted or reproduced provided that LRF is acknowledged to be the source and the Foundation’s website (lymphoma.org) is included in the citation. ACKNOWLEDGMENTS The Lymphoma Research Foundation wishes to acknowledge those individuals listed below who have given generously of their time and expertise. We thank them for their contributions, editorial input, and professional knowledge, which have truly enhanced this publication. The review committee guided the content and development of this publication. Without their dedication and efforts, this publication would not have been possible. We hope those in the lymphoma and chronic lymphocytic leukemia community will now be better informed and have a better understanding of these diagnoses because of the gracious efforts of those involved in the planning and execution of this comprehensive disease guide. Review Committee Editorial Board Steering Committee Editorial Chairman *Morton Coleman, MD, FACP, NewYork-Presbyterian Hospital/ Weill Cornell Medicine Medical Review Board Jeremy S. Abramson, MD, FACP, Massachusetts General Hospital/Harvard Medicine Nancy L. Bartlett, MD, Washington University School of Medicine *Bruce D. Cheson, MD, FACP, FAAAS, FASCO, Lombardi Comprehensive Cancer Center/Georgetown University Hospital *Kieron M. Dunleavy, MD, GW Cancer Center/George Washington University David R. Freyer, DO, MS, Children’s Hospital Los Angeles and USC Norris Comprehensive Cancer Center *Leo I. Gordon, MD, FACP, Robert H. Lurie Comprehensive Cancer Center of Northwestern University ii Understanding Non-Hodgkin Lymphoma *Thomas M. Habermann, MD, Mayo Clinic, Rochester, MN *Brad S. Kahl, MD, Washington University Medical School *Ann S. LaCasce, MD, MMSc, Dana-Farber Cancer Institute/ Harvard Medicine *John P. Leonard, MD, NewYork-Presbyterian Hospital/Weill Cornell Medicine *Peter Martin, MD, NewYork-Presbyterian Hospital/Weill Cornell Medicine John M. Pagel, MD, PhD, Center for Blood Disorders and Transplantation/Swedish Cancer Institute Lauren C. Pinter-Brown, MD, FACP, Chao Family Comprehensive Cancer Center/University of California at Irvine Pierluigi Porcu, MD, Sidney Kimmel Cancer Center/Jefferson Health Lymphoma Research Foundation Reviewers Victor Gonzalez, Associate Director of Support Resources and Strategic Partnerships Meghan Gutierrez, Chief Executive Officer Sarah Quinlan, Senior Director of Programs and Strategy Izumi Nakano, Associate Director of Support Services Uchenna Esomonu, Support Services Coordinator *Member of LRF Scientific Advisory Board (SAB), which is comprised of 45 world-renowned lymphoma experts who seek out the most innovative and promising research projects for support. Understanding Non-Hodgkin Lymphoma iii TABLE OF CONTENTS Abbreviations ..........................................4 Introduction ............................................7 Part 1 — Learning the Basics. 8 Chapter 1: Understanding the Disease ...................8 Table 1.1. Main Types of Indolent and Aggressive NHLs (Listed Alphabetically) ..............................17 Chapter 2: Seeking Medical Attention ...................30 Table 2.1. Signs and Symptoms Commonly Found in Patients With NHL .................................31 Chapter 3: Receiving a Diagnosis ......................35 Table 3.1. The Three Main Types of Biopsies ............37 Table 3.2. Immunohistochemistry and Flow Cytometry Tests ..............................40 Chapter 4: Work-Up Before Treatment Can Begin. 45 Table 4.1. The Eastern Cooperative Oncology Group (ECOG) Performance Status Scale ...........................47 Table 4.2. Types of Imaging Tests .....................48 Table 4.3. Other Types of Biopsies ....................50 1 Understanding Non-Hodgkin Lymphoma Part 2 — Treatment of Non-Hodgkin Lymphoma .....55 Chapter 5: What to Know Before Starting Treatment ......55 Table 5.1. International Prognostic Index for Diffuse Large B-Cell Lymphoma and NHL. .58 Chapter 6: Treatments for Non-Hodgkin Lymphoma .......69 Table 6.1. Common Chemotherapy Regimens for NHL ...73 Table 6.2. Catheters Used to Administer Drug Treatments ...................................97 Table 6.3. Methods for Delivering Radiation Therapy ...100 Table 6.4. Terms Used to Describe Treatment and Its Outcomes .................................106 Table 6.5. Forms of Complementary Therapy. 110 Part 3 — Survivorship and Living With the Side Effects of Treatment. 112 Chapter 7: Common Treatment Side Effects ............ 112 Table 7.1. Five Common Conditions Caused by Decreased Blood Cell Production ................... 115 Chapter 8: Managing Life During and After Treatment ....142 Table 8.1. Coping Strategies ........................142 Understanding Non-Hodgkin Lymphoma 2 Part 4 — Hospital Admission .......................148 Chapter 9: Preparing to Go to the Hospital. .148 Part 5 — Clinical Trials and Advances in Treatment. .155 Chapter 10: Overview of Clinical Trials .................155 Table 10.1. The Four Phases of Clinical Trials ..........156 Chapter 11: Advances in Treatment of Patients With Non-Hodgkin Lymphoma ............................161 About The Lymphoma Research Foundation ..............166 3 Understanding Non-Hodgkin Lymphoma ABBREVIATIONS 3D-CRT three-dimensional CSF cerebrospinal fluid conformal radiation CT computed tomography therapy CTCL cutaneous T-cell ABMS American Board of lymphoma Medical Specialties DHL double-hit lymphoma AIDS acquired DLBCL diffuse large B-cell immunodeficiency lymphoma syndrome DNA deoxyribonucleic acid; AIHA autoimmune hemolytic genetic material anemia EATL enteropathy-associated AITL angioimmunoblastic T-cell lymphoma T-cell lymphoma EBV Epstein-Barr virus ALCL anaplastic large cell ECHO echocardiogram lymphoma ENMZL extranodal marginal zone ALK anaplastic lymphoma lymphoma kinase FACP Fellow of the American ALL acute lymphoblastic College of Physicians leukemia FDA U.S. Food and Drug ANC absolute neutrophil count Administration ASCO American Society of FISH fluorescence in situ Clinical Oncology hybridization ASH American Society of FL follicular lymphoma Hematology FLIPI Follicular Lymphoma β2M beta-2 microglobulin International Prognostic BTK Bruton tyrosine kinase Index CAR chimeric antigen receptor FNA fine needle aspiration CGVHD chronic graft-vs-host GCB germinal center B-cell– disease like CBC complete blood count GVHD graft-versus-host disease CLL chronic lymphocytic GVL graft-versus-lymphoma leukemia HBV hepatitis B virus CNS central nervous system HCV hepatitis C virus CPR cardiopulmonary HDAC histone deacetylase resuscitation HIV human CR complete remission immunodeficiency virus Abbreviations 4 HGBCL high-grade B-cell NCCN National
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