NAVIGATING LUNG CANCER NAVIGATING LIFE DOESN’T COME WITH INSTRUCTIONS, BUT LIVING WITH LUNG CANCER NOW HAS THIS SURVIVOR’S GUIDEBOOK. NAVIGATING INSIDE YOU WILL GET THE MOST UP-TO-DATE NAVIGATION TOOLS ON: • THE DIAGNOSIS PROCESS • LIVING WITH LUNG CANCER • LUNG CANCER STAGING • FINANCING YOUR CARE LUNG CANCER • TREATMENT OPTIONS • HOPE FOR SURVIVING LUNG CANCER • CLINICAL TRIALS • AND MORE In my house we call it “the lung bible.” It has been an invaluable resource 360º OF HOPE for me, my family and (sadly) a newly diagnosed friend. FIFTH EDITION – FALL 2020 —Diane Broderick I love this handbook! It has great information that I have shared with my family and friends. I often pick it up and re-read. Each time I learn something new, or it triggers something that I need to talk to my doctor(s) about. —Kimberly Buchmeier 360º OF HOPE When my husband was first diagnosed with stage IV Adenocarcinoma we were paralyzed with fear and found ourselves starved for good information about the fight we were beginning. The University of Colorado/ Anchutz hospital advised us to contact the foundation and we were sent this wonderful handbook that answered all of our questions and enabled us to feel knowledgeable when choosing an oncologist and when facing surgery and treatments. It is an invaluable resource to us. —Peter & Donna Blum This is the most comprehensive manual I’ve ever seen written...focused for the lung cancer patient. BONNIE —Roy S. Herbst, MD, PhD BONNIE J. ADDARIO Ensign Professor of Medicine (Oncology), Professor of Pharmacology, Chief of Medical Oncology, Associate Director for Translational Research, Director—Thoracic Oncology SURVIVOR Research Program, Yale Comprehensive Cancer Center, Yale School of Medicine J. ADDARIO SINCE 2003 WWW.GO2FOUNDATION.ORG NAVIGATING LUNG CANCER 360º OF HOPE 5TH EDITION – FALL 2020 PEH(74)ENGLISHINTERIOR(8.625x11.25)RESIZE11320.indd 1 11/3/20 9:27 AM GO2 FOUNDATION FOR LUNG CANCER In April 2019, the Addario Lung Cancer Foundation (ALCF), formerly the Bonnie J. Addario Lung Cancer Foundation, and the Lung Cancer Alliance in Washington, D.C., announced joining forces to become the GO2 Foundation for Lung Cancer. “We are thrilled to blend our talent, resources, commitment, and compassion to create this powerhouse foundation,” said GO2 Foundation co-founder and board chair Bonnie J. Addario.“ The GO2 Foundation will transform what it means to live with lung cancer and increase the patient survival rate of the world’s number one cancer killer annually. Together we will continue to break barriers and save lives.” www.GO2foundation.org PEH(74)ENGLISHINTERIOR(8.625x11.25)RESIZE11320.indd 2 11/3/20 9:27 AM CONTRIBUTORS AUTHORS Bonnie J. Addario, Founder & Survivor Shane P. Dormady, MD, PhD Editor-in-Chief GO2 Foundation for Lung Cancer Valley Medical Oncology Consultants Chief Patient Officer, Danielle Hicks Senior Writer / Editor, Eileen Johnson, RN, MSN, CPHQ Project Manager / Contributing Writer, Alicia Sable-Hunt, RN, MBA AUTHORS / ADVISORY BOARD Lisa Boohar, MD Radiation Oncology, Kaiser Permanente Elizabeth A. David, MD Assistant Professor of Surgery, Thoracic Surgeon at University of California Davis Shane P. Dormady, MD, PhD Director of Thoracic Medical Oncology at El Camino Cancer Center Valley Medical Oncology Consultants David R. Gandara, MD Professor of Medicine at the University of California, Davis School of Medicine and Associate Director of Clinical Research, and Director of Thoracic Oncology UC Davis Comprehensive Cancer Center Paul Hesketh, MD Director of Thoracic Oncology Sophia Gordon Cancer Center and Director of Thoracic Oncology Lahey Clinic Medical Center Richard Lanman, MD Chief Medical Officer, Guardant Health Robert Sinha, MD Medical Director, El Camino Hospital Radiation Oncology CONTRIBUTING AUTHORS Daniel Saez, MSc Navigator, Treatment & Clinical Trials Disclaimer: Information presented in Navigating Lung Cancer 360° of Hope is not intended as a substitute for the advice given by your health care provider. The opinions expressed in Navigating Lung Cancer 360° of Hope are those of the authors. Although Navigating Lung Cancer 360° of Hope strives to present only accurate information, readers should not consider it as professional advice, which can only be given by a health care provider. The GO2 Foundation for Lung Cancer, its authors, and its agents shall not be responsible or in any way liable for the continued currency of the information or for any errors, omissions or inaccuracies in this publication, whether arising from negligence or otherwise or for any consequences arising there from. The GO2 Foundation for Lung Cancer, its authors, and its agents make no representations or warranties, whether express or implied, as to the accuracy, completeness or timeliness of the information contained herein or the results to be obtained from using the information. The GO2 Foundation for Lung Cancer is not engaged in rendering medical or other professional services. The publication of advertisement, whether paid or not, and survivor stories are not an endorsement. If medical or other expert assistance is required the services of a competent professional person should be sought. For Additional Copies: To order additional copies go to www.go2foundation.org, call us at 1-800-298-2436 or email [email protected]. GO2 FOUNDATION FOR LUNG CANCER • 1100 Industrial Road #1 • San Carlos, CA 94070 Design: White Space, Inc. PEH(74)ENGLISHINTERIOR(8.625x11.25)RESIZE11320.indd 3 11/3/20 9:27 AM ACKNOWLEDGMENTS ACKNOWLEDGMENTS The GO2 Foundation for Lung Cancer is proud to publish the 5th Edition of Navigating Lung Cancer 360º of Hope with the most recent advancements and updates to help patients in real time. We are eternally grateful to Dr. Shane Dormady for his leadership and expertise editing this guidebook and to the leading lung cancer clinicians who provided insight and direction on the original content. It is only through the generosity of our supporters that we are able to publish and re-publish this guidebook and offer it free of charge to the lung cancer community, lung cancer patients and their families. For this 5th edition, special thanks goes to Amgen, AstraZeneca, Bristol-Myers Squibb, Daiichi-Sankyo, EMD Serono, Foundation Medicine, Genentech, Janssen Oncology, Jazz Pharmaceuticals, Eli Lilly and Company, Merck, Novartis, Regeneron I Sanofi Genzyme, and Takeda. If you or your company would like information on supporting future editions, please contact Andrea Beltramo Parks: [email protected]. PEH ENGLISH 2021 FINAL 51721(2).indd 4 5/17/21 6:49 PM FOREWARD BY DAVID R. GANDARA, MD Dear Patients, I have been with the Bonnie J. Addario Lung Cancer Foundation (ALCF), and now the GO2 Foundation for Lung Cancer, from its beginning in 2006 and I am honored to help them lead patients to the best possible outcomes. If you are holding this handbook or reading it online, you’ve taken the first best step to connecting yourself with the most experienced clinicians worldwide and with a foundation that provides the information you need on your cancer journey. One of the most important resources that we provide is the Living Room. On the third Tuesday of every month, you can tune into the https://go2foundation.org/resources-and-support/lung- cancer-living-room/ to meet other patients who are either exactly where you are or years ahead and LIVING with lung cancer—patients all over the world. I have spoken many times over the years at the Living Room, am a co-author of this handbook, and am part of a team of leaders in lung cancer who support this foundation and its patients. This foundation is a lifeline for many of my patients and we are all here to help you and your family in every way we can. It’s important to know that there are many, many kinds of lung cancer. It’s complex. The way we approach lung cancer today, as opposed to 11 years ago, is through personalized medicine and individualized care, because each of you is different. The pace of advancement and learning new things in lung cancer has never been faster than it is today. More and more, lung cancer is a poster child for all the other cancers where we can take the information from the laboratory and translate it into how we take care of patients. All of us need to have our running shoes on if we’re going to keep up. Today, when something is found in the laboratory it takes less than a year to make its way to the clinic and right to the patient. From the start, getting information must be part of your lung cancer journey. Most of my patients are informed before they come to see me. Sometimes they pick up bad information, but by and large they know a lot. Having knowledgeable patients make decisions together with their doctors, as a partnership, is very positive approach for both patients and physicians. It is important for you to know that often, there are options, not always right or wrong answers. You are a patient who now holds in your hands a resource that is your best first step toward understanding and living with lung cancer. In this book and through the lung cancer Living Room you will become educated, informed and most important…you will find answers, directions, options and HOPE. What we want all our patients to do is live their lives every day to the fullest. Warmly, David R. Gandara, MD Professor of Medicine at the University of California, Davis School of Medicine and Associate Director of Clinical Research, and Director of Thoracic Oncology UC Davis Comprehensive Cancer Center PEH(74)ENGLISHINTERIOR(8.625x11.25)RESIZE11320.indd 5 11/3/20 9:27 AM 29 QUESTIONS TO ASK YOUR ONCOLOGIST AND HEALTHCARE TEAM 1. What type of lung cancer do I have? 2.