Understanding Non-Hodgkin Lymphoma. A Guide for Patients, Survivors, and Loved Ones. September 2015
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About this ebook
This guide is an educational resource compiled by the Lymphoma Research Foundation (LRF) that provides general information on adult non-Hodgkin lymphoma. Publication of this information is not intended to take the place of 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.
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Understanding Non-Hodgkin Lymphoma. A Guide for Patients, Survivors, and Loved Ones. September 2015 - Lymphoma Research Foundation
A Guide For Patients, Survivors, and Loved Ones
September 2015
This guide is an educational resource compiled by the Lymphoma Research Foundation to provide general information on adult
non-Hodgkin 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 therapies.
National Headquarters
115 Broadway, Suite 1301
New York, NY 10006
(212) 349-2910 phone
(212) 349-2886 fax
Helpline: (800) 500-9976; helpline@lymphoma.org
Website: www.lymphoma.org
Email: LRF@lymphoma.org
This patient guide is supported through unrestricted educational grants from:
© 2015 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.
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 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 leukemia and lymphoma community will now be better informed and have a better understanding of their illness 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, NewYork-Presbyterian Hospital/Weill Cornell Medical College
Senior Advisors
Bruce D. Cheson, MD, FACP, FAAAS, Lombardi Comprehensive Cancer Center, Georgetown University Hospital
Jonathan W. Friedberg, MD, MMSc, James P. Wilmot Cancer Institute, University of Rochester Medical Center
Leo I. Gordon, MD, FACP, Robert H. Lurie Comprehensive Cancer Center of Northwestern University
John P. Leonard, MD, NewYork-Presbyterian Hospital/Weill Cornell Medical College
Review Committee
Myron S. Czuczman, MD, Roswell Park Cancer Institute
Kieron M. Dunleavy, MD, National Cancer Institute
Nathan H. Fowler, MD, The University of Texas MD Anderson Cancer Center
Arnold S. Freedman, MD, Dana-Farber Cancer Institute
Randy D. Gascoyne, MD, FRCPC, British Columbia Cancer Agency
Meghan Gutierrez, Lymphoma Research Foundation
Thomas M. Habermann, MD, Mayo Clinic, Rochester
Brad S. Kahl, MD, Washington University in St. Louis
Izidore S. Lossos, MD, Sylvester Comprehensive Cancer Center, University of Miami
Owen A. O’Connor, MD, PhD, Columbia University Medical Center
Izumi Nakano, Lymphoma Research Foundation
John M. Pagel, MD, PhD, Swedish Cancer Institute
Lauren C. Pinter-Brown, MD, FACP, David Geffen School of Medicine at UCLA
Oliver W. Press, MD, PhD, Fred Hutchinson Cancer Research Center
Barbara Pro, MD, Robert H. Lurie Comprehensive Cancer Center of Northwestern University
Steven T. Rosen, MD, City of Hope
Eduardo M. Sotomayor, MD, GW Cancer Center, George Washington University
Anita E. Welborn, LMSW, Lymphoma Research Foundation
Michael E. Williams, MD, ScM, University of Virginia Cancer Center
Andrew D. Zelenetz, MD, PhD, Memorial Sloan Kettering Cancer Center
Table of Contents
List of Abbreviations 4
Introduction 6
Part 1 — Learning the Basics 7
Chapter 1: Understanding the Disease 7
Table 1.1. Main Types of Indolent and Aggressive NHLs
(Listed Alphabetically) 18
Chapter 2: Seeking Medical Attention 29
Table 2.1. Symptoms Commonly Found in Patients
With Lymphoma 30
Chapter 3: Receiving a Diagnosis 34
Table 3.1. The Three Main Types of Biopsies 37
Table 3.2. Immunohistochemistry and
Flow Cytometry Tests 41
Table 3.3. Types of Additional Genetic Tests 46
Chapter 4: Work-Up Before Treatment Can Begin 48
Table 4.1. Types of Imaging Tests 52
Table 4.2. Other Types of Biopsies 54
Part 2 — Treatment of Non-Hodgkin Lymphoma 58
Chapter 5: What to Know Before Starting Treatment 58
Table 5.1. International Prognostic Index 60
Table 5.2. The Eastern Cooperative Oncology Group
PS Scale 61
Chapter 6: Treatments for Non-Hodgkin Lymphoma 72
Table 6.1. Common Chemotherapy Regimens for NHL 76
Table 6.2. Catheters Used to Administer
Chemotherapy 79
Table 6.3. Common Monoclonal Antibodies for NHL 82
Table 6.4. Common Targeted or Novel Therapies
for NHL 86
Table 6.5. Methods for Delivering Radiation Therapy 92
Table 6.6. Terms Used to Describe Treatment
and Its Outcomes 98
Table 6.7. Forms of Complementary Therapy 101
Part 3 — Living With the Side Effects
of Treatment 103
Chapter 7: Common Treatment Side Effects 103
Table 7.1. The Four Main Conditions Caused by
Decreased Blood Cell Production 107
Chapter 8: Managing Life During and After Treatment 129
Table 8.1. Coping Strategies 129
Part 4 — Hospital Admission 135
Chapter 9: Preparing to Go to the Hospital 135
Part 5 — Clinical Trials and Advances
in Treatment 142
Chapter 10: Overview of Clinical Trials 142
Table 10.1. The Four Main Types (or Phases) of Clinical Trials 143
Chapter 11: Advances in Treatment of Patients With
Non-Hodgkin Lymphoma 149
About The Lymphoma Research Foundation 154
List of Abbreviations
3D-CRT three-dimensional conformal radiation therapy
ABMS American Board of Medical Specialties
ACA Affordable Care Act
AIDS acquired immunodeficiency syndrome
AIHA autoimmune hemolytic anemia
AITL angioimmunoblastic T-cell lymphoma
ALCL anaplastic large cell lymphoma
ALK anaplastic lymphoma kinase
ALL acute lymphoblastic leukemia
ANC absolute neutrophil count
ASCO American Society of Clinical Oncology
ASH American Society of Hematology
ATLL adult T-cell leukemia/lymphoma
B2M beta-2 microglobulin
BTK Bruton’s tyrosine kinase
CAR chimeric antigen receptor
CBC complete blood count
CLL chronic lymphocytic leukemia
CNS central nervous system
CPR cardiopulmonary resuscitation
CR complete remission
CSF cerebrospinal fluid
CT computed tomography
CTCL cutaneous T-cell lymphoma
DLBCL diffuse large B-cell lymphoma
DNA deoxyribonucleic acid; genetic material
DNR do not resuscitate
EATL enteropathy-type T-cell lymphoma
EBV Epstein-Barr virus
ECHO echocardiogram
ENMZL extranodal marginal zone lymphoma
FDA U.S. Food and Drug Administration
FISH fluorescence in situ hybridization
FL follicular lymphoma
FNA fine needle aspirate
GVHD graft-versus-host disease
HBV hepatitis B virus
HCV hepatitis C virus
HDAC histone deacetylase
HIV human immunodeficiency virus
HL Hodgkin lymphoma
HTLV-1 human T-lymphotropic virus type 1
IgM immunoglobulin M
IGRT image-guided radiation therapy
IHC immunohistochemistry
IMiD immunomodulatory drug
IPI International Prognostic Index
IRB institutional review board
ITP immune thrombocytopenia
IV intravenous
LDH lactate dehydrogenase
LRF Lymphoma Research Foundation
MALT mucosa-associated lymphoid tissue
MCL mantle cell lymphoma
MMAE monomethyl auristatin E
MR minor response
MRI magnetic resonance imaging
mTOR mammalian target of rapamycin
MUGA multi-gated acquisition
MZL marginal zone B-cell lymphoma
NCCN National Comprehensive Cancer Network
NCI National Cancer Institute
NHL non-Hodgkin lymphoma
NIH National Institutes of Health
NK natural killer (cell)
PCR polymerase chain reaction
PET positron emission tomography
PFT pulmonary function test
PI3K phosphoinositide-3 kinase
PICC peripherally inserted central catheter
PMBCL primary mediastinal B-cell lymphoma
PNP purine nucleoside phosphorylase
PR partial remission
PS performance status
PTCL peripheral T-cell lymphoma
PTCL-
NOS peripheral T-cell lymphoma, not otherwise specified
SAB Scientific Advisory Board
SALT skin-associated lymphoid tissue-related
SEER Surveillance, Epidemiology, and
End Results
SLL small lymphocytic lymphoma
SMZL splenic marginal zone lymphoma
Syk spleen tyrosine kinase
TLS tumor lysis syndrome
TNF tumor necrosis factor
TSEBT total skin electron beam therapy
Introduction
The purpose of this booklet is to assist patients with non-Hodgkin lymphoma and their caregivers. It is designed to allow them to become familiar with their illness and to become active participants in their healthcare decisions. Chapters in this book address different issues faced by these patients, including what to expect during diagnosis, work-up, and treatment; how to cope with treatment side effects; and what questions to ask doctors. In addition to this booklet, information is available online at the Lymphoma Research Foundation’s website at www.lymphoma.org.
Chapter 1: Understanding the Disease
Non-Hodgkin lymphoma (NHL) is a type of blood cancer that affects specialized white blood cells called lymphocytes. Lymphocytes work together with other cells in the immune system to defend the body against invasion by bacteria, viruses, parasites, and other foreign substances. Lymphocytes travel in the bloodstream and in another network of mostly small vessels called the lymphatic system. Lymphocytes are also found in specialized structures called lymph nodes. Lymph nodes are bean-shaped structures that act as sentinels (ie, soldiers or guards who keep watch) because they are often the first defense against invading organisms, such as viruses and bacterial infections.
This chapter explains these and other terms that will help you understand