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Understanding CLL/SLL Chronic Lymphocytic Leukemia and Small Lymphocytic Lymphoma

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Understanding CLL/SLL Chronic Lymphocytic Leukemia and Small Lymphocytic Lymphoma Understanding CLL/SLL Chronic Lymphocytic Leukemia and Small Lymphocytic Lymphoma A Guide for Patients, Survivors, and Loved Ones September 2019 Understanding CLL/SLL Chronic Lymphocytic Leukemia and Small Lymphocytic Lymphoma A Guide for Patients, Survivors, and Loved Ones September 2019 This guide is an educational resource compiled by the Lymphoma Research Foundation to provide general information on chronic lymphocytic leukemia and small lymphocytic lymphoma. Publication of this information 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 therapy with their physician. Contact the Lymphoma Research Foundation Helpline: (800) 500-9976 Email: [email protected] Websites: lymphoma.org lymphoma.org/CLL This patient guide is supported through unrestricted educational grants from: © 2019 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 (LRF) wishes to acknowledge the individuals listed below who have given generously of their time and expertise. We thank them for their contributions, editorial input, and advice, 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 CLL/SLL and lymphoma community will have a better understanding of their illness because of the 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*, NewYork-Presbyterian Hospital/Weill Cornell Medicine Medical Review Board Jennifer R. Brown, MD, PhD, Dana-Farber Cancer Institute, Harvard Medical School Jan A. Burger, MD, PhD, The University of Texas MD Anderson Cancer Center Bruce D. Cheson, MD, FACP, FAAAS, FASCO*, Lombardi Comprehensive Cancer Center, Georgetown University Hospital Joanna L. Fawzy Morales, Esq., Triage Cancer Alessandra Ferrajoli, MD, The University of Texas MD Anderson Cancer Center David A. Frank, MD, PhD, Dana-Farber Cancer Institute, Harvard Medical School ii Understanding CLL/SLL Richard R. Furman, MD, NewYork-Presbyterian Hospital/Weill Cornell Medicine Les Gallo-Silver, ACSW, LCSW-R, LaGuardia Community College Leo I. Gordon, MD, FACP*, Robert H. Lurie Comprehensive Cancer Center of Northwestern University Neil E. Kay, MD, Mayo Clinic, Minnesota Thomas J. Kipps, MD, PhD, UC San Diego, Moores Cancer Center Nicole Lamanna, MD, NewYork-Presbyterian Hospital/Columbia University Medical Center John P. Leonard, MD*, NewYork-Presbyterian Hospital/Weill Cornell Medicine Anthony Mato, MD, MSCE, Memorial Sloan Kettering Cancer Center Kanti R. Rai, MD*, Hofstra Northwell Cancer Institute Parameswaran Venugopal, MD, Rush University Medical Center Lymphoma Research Foundation Victor Gonzalez, Senior Manager of Support Services Meghan Gutierrez, Chief Executive Officer Izumi Nakano, Associate Director of Support Services *Member of LRF Scientific Advisory Board (SAB), comprised of 45 world-renowned lymphoma experts, seeks out the most innovative and promising lymphoma research projects for support Understanding CLL/SLL iii TABLE OF CONTENTS Abbreviations ..........................................1 Introduction ............................................2 Part 1 — Learning the Basics .........................3 Chapter 1: Understanding the Disease ...................3 Chapter 2: Seeking Medical Attention ...................14 Table 2.1. Signs and Symptoms Commonly Found in Patients With CLL/SLL ..............................15 Chapter 3: Receiving a Diagnosis ......................17 Table 3.1. The Three Main Types of Biopsies ...........19 Table 3.2. Flow Cytometry and Immunohistochemistry Tests ........................23 Table 3.3. Types of Genetic Tests .....................24 Table 3.4. Chromosomal Changes and Genetic Mutations Most Commonly Found in CLL/SLL ...................27 Chapter 4: Work-Up Before Treatment Can Begin .........29 Table 4.1. The Eastern Cooperative Oncology Group Performance Status Scale ...........................31 Table 4.2. Types of Imaging Tests .....................32 Table 4.3. Other Types of Biopsies ....................34 Table 4.4. The Rai Staging System for CLL .............36 Table4.5. The Binet Classification System for CLL ......36 Table4.6. The Lugano Modification of the Ann Arbor Staging System for SLL .............................37 iv Understanding CLL/SLL Part 2 — Treatment of CLL/SLL ......................38 Chapter 5: What to Know Before Starting Treatment ......38 Table 5.1. Known Prognostic Factors for CLL/SLL .......40 Chapter 6: Treatments for CLL/SLL .....................51 Table 6.1. Common Regimens for CLL/SLL .............54 Table 6.2. Catheters Used to Administer Drug Therapy ...57 Table 6.3. Terms Used to Describe Treatment and Its Outcomes ..................................69 Table 6.4. Forms of Complementary Therapy ...........72 Part 3 — Survivorship and Living With the Side Effects of Treatment .........................................74 Chapter7: Common Treatment Side Effects ..............74 Table 7.1. Five Common Conditions Caused by Decreased Blood Cell Production ..............................76 Chapter 8: Managing Life During and After Treatment .....96 Table 8.1. Coping Strategies .........................96 Understanding CLL/SLL v Part 4 — Hospital Admission .......................102 Chapter 9: Preparing to Go to the Hospital ..............102 Part 5 — Clinical Trials and Advances in Treatment .............................109 Chapter 10: Overview of Clinical Trials .................109 Table 10.1. The Four Phases of Clinical Trials .......... 110 Chapter 11: Advances in Treatment of Patients With CLL/SLL ...................................... 116 About the Lymphoma Research Foundation ...............120 vi Understanding CLL/SLL ABBREVIATIONS ABMS American Board of HL Hodgkin lymphoma Medical Specialties IgG immunoglobulin G ANC absolute neutrophil count IGHV immunoglobulin heavy app application chain variable region ASCO American Society of gene Clinical Oncology IHC immunohistochemistry ASH American Society of IRB institutional review board Hematology IV intravenous Bcl2 B-cell lymphoma 2 LRF Lymphoma Research BTK Bruton tyrosine kinase Foundation CAR chimeric antigen receptor MR minor response CBC complete blood count MRD minimal residual disease CLL chronic lymphocytic MRI magnetic resonance leukemia imaging CPR cardiopulmonary MUGA multigated acquisition resuscitation scan CR complete remission NCI National Cancer Institute CSF cerebrospinal fluid NHL non-Hodgkin lymphoma CT computed tomography NIH National Institutes of del deletion Health DNA deoxyribonucleic acid; NK natural killer cell genetic material PET positron emission DNR do not resuscitate tomography FDA U.S. Food and Drug PI3K phosphoinositide Administration 3-kinase FISH fluorescence in situ PICC peripherally inserted hybridization central catheter FL follicular lymphoma PML progressive multifocal leukoencephalopathy FNA fine needle aspiration GVHD graft-versus-host disease PR partial remission GVL graft-versus-lymphoma PS performance status effect SEER Surveillance, Epidemiology, and End GVT graft-versus-tumor effect Results HBV hepatitis B virus SLL small lymphocytic HCV hepatitis C virus lymphoma HIV human TLS tumor lysis syndrome immunodeficiency virus Abbreviations 1 INTRODUCTION The purpose of this guide is to educate and support patients with chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL) and their loved ones. It is designed to allow them to familiarize themselves with this disease and to become active participants in healthcare decisions. Chapters in this guide address different issues faced by patients with CLL/SLL, including what to expect during diagnosis, work-up, and treatment; how to cope with treatment side effects; and what questions to ask doctors, nurses, physician assistants, social workers, and other members of the healthcare team. In addition to this guide, the Lymphoma Research Foundation (LRF) provides a comprehensive series of expert programs and services for people with lymphoma and their caregivers. Our services include: Clinical Trials Information Service, Publications focused on lymphoma; Financial Assistance Resources; In-Person Education Conferences; Lymphoma Support Network; LRF’s award-winning mobile app Focus On Lymphoma (lymphoma.org/mobileapp); Webinars and Videos; and Webcasts and Podcasts. For additional information, please visit our website at lymphoma.org or lymphoma.org/CLL. The LRF Helpline can also provide additional information and copies of LRF educational and support publications free of charge. For individual support, contact the LRF Helpline at (800) 500-9976 or email [email protected]. 2 Understanding CLL/SLL Part 1 — Learning the Basics Chapter 1: Understanding the Disease Part 1 Chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL) are forms of non-Hodgkin
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