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<< Go back to the Podcast page EPISODE 26: WHAT TO KNOW ABOUT LUNG NETS Download the transcript here: LACNETS Podcast Episode 26_Lung NETs .pdf Download PDF • 208KB ABOUT THIS EPISODE What are lung NETs? What is DIPNECH? How is lung NET similar or different from lung cancer? Dr. Vineeth Sukrithan from Ohio State University Comprehensive Cancer Center gives a comprehensive overview of lung NET and DIPNECH, including the work-up and treatment options. He also discusses open clinical trials and exciting advances in lung NET research on the horizon. MEET DR. VINEETH K. SUKRITHAN Dr. Vineeth Sukrithan is a medical oncologist who specializes in the study and treatment of neuroendocrine cancer, thyroid cancer and adrenocortical cancer. He utilizes traditional chemotherapy, molecularly targeted oral medications, novel immunotherapy and peptide-receptor radiotherapies in the treatment of these unique cancers. As a comprehensive cancer center, the OSUCCC – James has unrivaled experience and expertise in the treatment of neuroendocrine, thyroid and adrenal tumors. Their world-renowned faculty are leaders in the study and treatments of these rare cancers, and as such, they are able to provide their patients with options beyond standard therapies that may not be available anywhere else. The strong focus on translational research at The James means that the treatment breakthroughs of tomorrow are being discovered in their laboratories today. Dr. Sukrithan is part of a tight-knit team of surgical oncologists, radiation oncologists and interventional radiologists who work together to provide cutting-edge care for our patients with neuroendocrine tumors. In addition to his clinical work, Dr. Sukrithan is a member of the Translational Therapeutics Program at the OSUCCC – James and the co-director of the Adrenal Tumor Clinic. He was recently selected to lead an externally funded effort through the International Thyroid Oncology Group to operationalize a multi-institutional registry database for patients with medullary thyroid cancer. Dr. Sukrithan also serves as an assistant professor in the Division of Medical Oncology at The Ohio State University and has completed postdoctoral fellowships in clinical research at Johns Hopkins University. His research has been published in numerous peer-reviewed journals, including Cancer Research, American Journal of Clinical Oncology and Clinical Lung Cancer. As every individual’s cancer is molecularly unique in countless ways, Dr. Sukrithan believes in tailoring therapies to the individual with the precision made available through cutting-edge scientific research. He feels it is a privilege to make a difference in the lives of patients as we work together to achieve a cancer-free world. TOP 10 QUESTIONS What are lung NETs? Where are they located? How are lung NETs found? What are the symptoms of a lung NET? How is lung NETs different (or similar) to what is commonly referred to as “lung cancer”? How is it different or similar to DIPNECH? Do all lung NET patients have DIPNECH and do all DIPNECH patients have lung NET? How is lung NET similar or different from other types of NETs? What makes it unique? What types of labs, scans, or testing is done to determine if someone has a lung NET and DIPNECH? What is the best type of scan for lung NETs? How do you decide if the lung NET can be surgically removed? What type of surgeon would make that determination and when in their patient journey might they see a surgeon? How are lung NETs treated medically (or nonsurgically)? How are the treatments different from other NETs? How are treatments sequenced? How are lung NETs monitored? What types of blood work, tests and scans should be done and how often should they be done? What advances in the field or clinical trials should we be aware of? What new advances or treatments in the pipeline for lung NETs are you most excited about? RESOURCES Lung NET Clinical Trials mentioned in this episode: PRRT TRIAL for lung NET: phase 2 trial studying the effect of lutetium Lu 177 dotatate (PRRT) compared to the usual treatment (everolimus) in treating patients with somatostatin receptor positive ADVANCED bronchial Neuroendocrine Tumors CABINET: Cabozantinib in Advanced pNET and Carcinoid Tumors A Phase II Clinical Trial of Nivolumab and Temozolomide for Neuroendocrine Neoplasms in Clinical Cancer Research Lung NET Resources: LACNETS Lung NET Resources Lung NET Clinical Trials in the LACNETS Clinical Trials Guide WATCH: NET Patient Dorinda shares her NET Journey "Focus on Lung Carcinoid Tumors" with Dr. Robert Ramirez "Update on Lung NETs" with Dr. Sukhmani K. Padda DISCLAIMER LACNETS Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of LACNETS. Please contact your medical team with questions or concerns about your individual care or treatment. THANK YOU TO OUR SPONSORS

Confirmation page of the Support Line, provided in collaboration with the Carcinoid Cancer Foundation Confirmation Thank you for providing this information so we can better support you or your loved one. You will receive a confirmation email after your submission containing various NET resources. We are here to help and look forward to connecting with you soon. The Neuroendocrine Cancer Foundation does not substitute for medical advice, diagnosis, treatment or other healthcare services. The Neuroendocrine Cancer Foundation may provide information and connections to physicians, products, services, clinical trials or treatments related to neuroendocrine cancer, but the Neuroendocrine Cancer Foundation neither recommends nor endorses any particular healthcare institution or provider. Please consult your medical team about your individual care or treatment.

Learn more about the Neuroendocrine Cancer Foundation's mission to provide a community of support and education for patients (those with neuroendocrine cancer), history, and community. About the Neuroendocrine Cancer Foundation MISSION STATEMENT The mission of the Neuroendocrine Cancer Foundation is to provide a community of support and education for patients (those with neuroendocrine cancer or neuroendocrine tumor or NET) and to advocate for all people impacted by this rare disease by expanding awareness and by voicing the patient’s perspective in collaborative dialogue with healthcare professionals. We aim to improve the quality of life of those with neuroendocrine cancer by offering support and expanded access to information on diagnosis, treatment options, research, and resources. The Neuroendocrine Cancer Foundation makes it possible for patients to share experiences, encouragement, and hope. We work to improve outcomes for patients through early diagnosis by raising awareness among healthcare professionals and the public about neuroendocrine and carcinoid cancers. HISTORY Giovanna Joyce Imbesi , a NET patient and patient advocate, founded a non-profit organization named GeneratePossibility in 2012. She launched Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS) to offer Patient Education Speaker Series. Since 2012, LACNETS has presented leading NET experts in oncology, gastroenterology, radiology, nuclear medicine, clinical trials, pain management, surgery, and psychiatry and has addressed patient concerns about insurance coverage and nutrition. Starting in 2014, the patient educational programs are recorded for a global audience and posted on the LACNETS YouTube Channel. In November 2022, LACNETS changed its name to Learn Advocate Connect Neuroendocrine Tumor Society, keeping the acronym to reflect the intent for the NET community to learn, advocate and connect. In March 2025, the organization chose "Neuroendocrine Cancer Foundation" as its name to better represent the organization it is today and the broader community it serves. Although the Neuroendocrine Cancer Foundation will expand its reach and provide more access to educational resources, experts, and support, its commitment to the Neuroendocrine Cancer Community remains steadfast and reaffirmed. Contact: info@ncf.net The Neuroendocrine Cancer Foundation is a 501(c)(3) California non-profit corporation. All or part of your donation may be tax deductible as a charitable contribution.

Surgery < Back to Topics Play Video Play Video 46:13 Episode 27: What to Know About Neuroendocrine Tumor Liver Metastases ABOUT THIS EPISODE What do you call NETs in the liver? How often do NETs spread and what causes NETs to spread? How do you determine if surgery is an option? Dr. Xavier Keutgen from the University of Chicago brings clarity to NET tumors found in the liver and describes how surgery fits in with other treatments for metastatic NETs. MEET DR. XAVIER KEUTGEN Xavier M. Keutgen MD is a board-certified, double-fellowship trained surgeon who specializes in the treatment of gastro, entero, pancreatic neuroendocrine tumors and neoplasms of the thyroid, parathyroid and adrenal glands. A native from Belgium, Dr. Keutgen graduated magna cum laude from the University of Heidelberg Medical School in Germany and completed a general surgery residency and surgical oncology research fellowship at New York Presbyterian Hospital-Weill Cornell Medical Center. He then completed a hepato-pancreato-biliary fellowship at the University Hospital of Zurich in Switzerland as well as an endocrine oncology and surgery fellowship at the National Cancer Institute, National Institutes of Health (NIH) in Bethesda, Maryland. Dr. Keutgen currently serves as the director of the Neuroendocrine Tumor Program, director of the Endocrine Research Program and co-director of the Von Hippel-Lindau Clinical Care Program at the University of Chicago Medicine. Throughout his career Dr. Keutgen has developed a particular interest in clinical, translational and basic science research. His laboratory specializes in investigating the role of radiation therapy and DNA damage repair in pancreatic, lung and small bowel neuroendocrine tumors, discovering new actionable molecular targets for neuroendocrine tumors, and elucidating new mechanisms of drug delivery for endocrine malignancies. TOP TEN QUESTIONS 1. What is liver NETs? How often do NETs spread? Is it expected that NETs will eventually spread? 2. If the primary tumor was already removed, do you now call this liver NET or do you still refer to it by the primary site of origin – and why? How is this different from liver cancer? 3. What causes NETs to spread? Is there anything that is done to cause NET tumors to spread? Is there anything that can be done to keep them from spreading? 4. How do you determine if surgery is an option? What is involved in evaluating metastases? What scans or labs are needed? 5. How do you decide what the “tumor burden” is? 6. How do you weigh the grade or ki67? How do you weigh tumor size? Is there a cut-off for tumor size or the number of tumors that is too much to operate? 7. How does one decide between surgery versus other options? How often can surgery or other treatments be done? How safe is liver surgery? 8. How do you approach surgery for someone with liver tumors who also has tumors in the tail versus the head of the pancreas? 9. When someone has had a Whipple surgery and later is found to have tumors in the liver, what are the options? 10. What advances in the field are you most excited about? For more information, visit https://www.lacnets.org/podcast/27. Play Video Play Video 01:35:06 "Evolving Management of NET Liver Metastases" Dr. Gagandeep Singh • 2024 #LACNETS Educational Event Join us to hear renowned liver and pancreas surgeon Dr. Gagandeep “Gaugs” Singh discuss the evolving algorithms in the management of NET liver metastases. Dr. Singh, Chief of Surgical Oncology at City of Hope® Cancer Center in Phoenix, asks the question of whether it is prudent to be aggressive surgically or if it is all about timing and strategy. For more information, visit LACNETS.org. Play Video Play Video 20:38 "Surgical Treatments" • Alexandra Gangi, MD • 2023 NET Cancer Day Symposium @NCFCancer "Surgical Treatments" • Alexandra Gangi, MD • 2023 NET Cancer Day Symposium • Santa Monica, CA Speaker: Alexandra Gangi, MD Surgical Oncologist Cedars-Sinai For more information, visit LACNETS.org. Play Video Play Video 17:28 "Understanding Carcinoid Crisis" with Dr. Julie Hallet • 2024 #LACNETS Patient Conference 6) Understanding Carcinoid Crisis • 2024 Neuroendocrine Tumor Patient Conference Our 2024 LACNETS Neuroendocrine Tumor Patient Conference is designed for neuroendocrine cancer (NET) patients and caregivers to deepen your understanding of NETs. Whether you are newly diagnosed or have been living with NET for many years, we encourage you to attend: - Learn from top NET experts from across North America on a range of topics relevant to the NET patient journey. - Topics include work-ups, scans, surgery, carcinoid crisis, liver-directed therapy, PRRT, systemic treatments, treatment sequencing, NET guidelines, and clinical trials. - Gain insight into NET decision-making through the NET tumor board panel discussion. - Hear stories from NET patients and caregivers. - Join virtually, where you can pause, rewind, or replay. - There is no cost to attend. This event is made possible by the generosity of donors and sponsors. #LACNETS #neuroendocrinecancer #clinicaltrials #lungcancer #NETcancer #Letstalkaboutnets For more information, visit LACNETS.org. Play Video Play Video 16:01 "Understanding Surgery for Liver NETs" with Dr. Clarke •2024 Neuroendocrine Tumor Patient Conference 5) Understanding Surgery for Liver NETs • 2024 Neuroendocrine Tumor Patient Conference Our 2024 LACNETS Neuroendocrine Tumor Patient Conference is designed for neuroendocrine cancer (NET) patients and caregivers to deepen your understanding of NETs. Whether you are newly diagnosed or have been living with NET for many years, we encourage you to attend: - Learn from top NET experts from across North America on a range of topics relevant to the NET patient journey. - Topics include work-ups, scans, surgery, carcinoid crisis, liver-directed therapy, PRRT, systemic treatments, treatment sequencing, NET guidelines, and clinical trials. - Gain insight into NET decision-making through the NET tumor board panel discussion. - Hear stories from NET patients and caregivers. - Join virtually, where you can pause, rewind, or replay. - There is no cost to attend. This event is made possible by the generosity of donors and sponsors. #LACNETS #neuroendocrinecancer #clinicaltrials #lungcancer #NETcancer #Letstalkaboutnets For more information, visit LACNETS.org. Play Video Play Video 41:04 Episode 17: Key Considerations for NET Surgery ABOUT THIS EPISODE How do surgeons decide the type, extent, and approach of NET surgery? NET surgeon Dr. Alexandra Gangi of Cedars-Sinai answers 10 common questions about what to expect before, during, and after NET surgery. Gain insight on preparing for surgery and what is important for your surgeon to know about your recovery goals. Dr. Gangi’s comprehensive approach illustrates why surgeons are an integral part of your NET medical team. MEET DR. ALEXANDRA GANGI Dr. Alexandra Gangi is a board-certified surgical oncologist at Cedars-Sinai Medical Center in Los Angeles. Dr. Gangi completed a general surgical residency at Cedars-Sinai and completed her surgical oncology fellowship at the H. Lee Moffitt Cancer Center in Tampa, Florida. She currently serves as the director of the Gastrointestinal Tumor and Cancer Regional Therapies Programs with specialization in Pancreatic and GI Neuroendocrine tumors, Metastatic colorectal cancer, and Peritoneal Surface Malignancies. Her research focuses on understanding GEPNET heterogeneity between and within tumors subtypes and mechanisms of chemotherapy induced liver injury. TOP 10 QUESTIONS 1. How do you decide if the tumors can and should be cut out? How does tumor location, tumor size, and amount of tumors factor into your decision? 2. How do you decide if someone should have a laparoscopic surgery versus open surgery? What about robotic surgery? 3. How do you decide whether or not to remove the ileocecal valve? 4. What work up should NET patients have before surgery? Should all NET patients have an echo? 5. What is the risk of carcinoid crisis with a dental procedure, a biopsy, or with surgery? How do you manage this? 6. Should NET patients be on somatostatin analogs before surgery? What about after surgery? If so, when would you restart it? 7. When would you want someone on chemotherapy or PRRT to shrink a tumor before surgery? When might you want to do surgery first followed by another treatment? 8. When would you recommend imaging after NET surgery? What type of imaging would you order? 9. Why are there differing opinions from NET specialists, specifically about surgery and what treatment should be offered as the next option? 10. What questions would you recommend NET patients ask at their surgical consultation? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast17. Play Video Play Video 39:43 Episode 3: Surgery for NETs ABOUT THIS EPISODE To cut or not to cut? A crossroad many neuroendocrine cancer patients are faced with along their journey. NET surgeon Dr. Gagandeep Singh of City of Hope answers the top 10 surgery questions for NETs. MEET DR. GAGANDEEP SINGH Gagandeep Singh, M.D., is an internationally recognized liver and pancreas surgeon. He is head of hepatobiliary and pancreatic surgery service City of Hope, a National Cancer Institute-designated comprehensive cancer center. He is also the surgical director of the Neuroendocrine Tumor Program and is the lead for the gastrointestinal disease team. He started his faculty academic career at Keck School of Medicine of USC in Los Angeles. From there, he was appointed as director of the Liver and Pancreas Center at the John Wayne Cancer Institute, Santa Monica, California, where he also served as chair of the Cancer Committee and vice president for Fellowship Education. In 2010, City of Hope asked Dr. Singh to spearhead the liver and pancreatic cancer program. He was appointed clinical professor of surgery and as the new chief of the Division of Surgical Oncology (2011 to 2019) and hoisted the program to national recognition. He has an extensive referral base that reflects peer recognition of his clinical acumen and surgical expertise and is listed in “America’s Top Surgeons,” “Best Doctors of America,” “Super Doctors” and “Top Doctors of America.” TOP 10 SURGERY QUESTIONS 1. Should all NET patients have surgery? How do I know if I’m a candidate for surgery? If 1 surgeon says I’m not, would another surgeon say something different? 2. How much control would a patient have regarding the approach and extent of surgery? 3. How do you control for carcinoid crisis during surgery? 4. Should all NET patients have their gallbladder removed? If mine wasn’t removed in my initial surgery, would you recommend going back to have it taken out? 5. If there are already liver mets, would you recommend having surgery? If so, how much should be taken out? Is there a role for taking out the primary tumor when there are liver mets? 6. Is there a role for surgery if there are bone mets? 7. What is the role of liver transplantation? 8. What are the risks of scar tissue from multiple surgeries? What can be done about it? (how many surgeries can a body handle?) 9. What is the role of adjuvant therapy for net? (Please also explain what adjuvant therapy is.) 10. What treatment or other development in this field are you most excited about? (What hope might you offer to those living with NET or their loved ones?) For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast3. Play Video Play Video 01:25:46 "Surgery: The What, Where & When" with Dr. Eric Liu • LACNETS • July 2023 Join LACNETS to hear NET expert Dr. Eric Liu of Rocky Mountain Cancer Centers discuss “Surgery: The What, Where & When.” To learn more, visit LACNETS.org. Play Video Play Video 27:33 A Conversation with Three NET Surgeons • Dr. Clarke, Dr. Gangi & Dr. Anaya • 2023 LACNETS Conference Watch 'A Conversation with Three NET Surgeons' featuring Dr. Callisia Clarke, Dr. Alexandra Gangi and Dr. Daniel Anaya Saenz. This presentation is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. For more information, visit LACNETS.org. Play Video Play Video 07:53 Patient Story: How to Prepare for Surgery NET patient Julie’s “show and tell” of tips, tricks, and specific items she found useful during her hospital stay and recovery at home Click here for a list of the items Julie mentioned in this video: bit.ly/3vEenQf Read our blog post, 'Practical Tips for Patients Preparing for Surgery" here: bit.ly/3Ac0xHF For more information on LACNETS, visit www.LACNETS.org. Play Video Play Video 15:22 05. NET Surgery: Making Decisions & Preparing for Surgery (Dr. Clarke) - 2022 LACNETS Conference Dr. Callisia Clarke addresses surgery for neuroendocrine cancer including decision-making & preparing for surgery. Presenter: Callisia Clarke, MD Surgical Oncologist Medical College of WI 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 01:42:11 LACNETS - "Surgical Resection/Cytoreduction -The Best Treatment Option for GI NETs" Dr. Yi-Zarn Wang "Surgical Resection/Cytoreduction - The Best Treatment Option for GI NETs - Why? & How?" Speaker: Yi-Zarn Wang, DDS, PC, MD, FACS Surgical Oncologist, Chairman of the NET Research & Treatment Center, Sammons Cancer Center, Baylor University Medical Center Play Video Play Video 34:00 Surgery - Liver + Pancreas: Kambiz Kosari, MD, FACS - 2019 LA NET Conf Surgery - Liver + Pancreas: Kambiz Kosari, MD, FACS Kambiz Kosari, MD, FACS Surgeon, Cedars-Sinai Medical Center 2019 Annual Los Angeles NET Patient Education Conference Saturday, June 8th www.LACNETS.org Play Video Play Video 17:47 Surgery - GI: Farin Amersi, MD - 2019 LA NET Conf Surgery - GI: Farin Amersi, MD Farin Amersi, MD Surgical Oncology, Cedars-Sinai Medical Center 2019 Annual Los Angeles NET Patient Education Conference Saturday, June 8th www.LACNETS.org Play Video Play Video 01:16:51 LACNETS - "Defining Order Beneath the Chaos - Living with NET Liver Metastases" (City of Hope) LACNETS - "Defining Order Beneath the Chaos - Living with NET Liver Metastases" with Dr. Gagandeep Singh (City of Hope) SPEAKERS: Gagandeep Singh, MD, FACS, Liver & Pancreatic Surgeon, City of Hope Daneng (Dan) Li, MD, Medical Oncologist, City of Hope Date: Saturday, March 9th, 2019 Location: City of Hope (Duarte, Calif.) To learn more about LACNETS, please visit www.LACNETS.org. Play Video Play Video 24:29 2018 LA NET Conf 04 - Surgical Management : Girgis, Agopian Surgical Management: Girgis, Agopian Mark Girgis, MD Assistant Professor of Surgery at the David Geffen School of Medicine, UCLA Health Vatche G. Agopian, MD Assistant Professor of Surgery, Department of Surgery, David Geffen School of Medicine at UCLA Play Video Play Video 42:50 Finding a NET Expert + Surgery for NETs - 2020 LACNETS Virtual NET Conference Virtual 2020 Los Angeles Neuroendocrine Tumor Patient Education Conference Presented by LACNETS Presentations & Times: LACNETS Conference Welcome (0:00 - 5:44) Lindsey Jeu De Vine, Director of Communications, LACNETS Lisa Yen, NBC-HWC, Program Director, LACNETS "Finding a NET Expert" (5:44 - 22:25) Cindy Lovelace , Executive Director Healing NET Foundation "Surgery for NETs" (22:25 - end of video) Alexandra Gangi, MD , Surgical Oncology Cedars-Sinai Medical Center For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 15:08 05. To Cut or Not to Cut? Surgery for NETs (Dr. Clarke) - 2021 LACNETS Virtual Conference 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Presenter: Callisia Clarke, MD Surgical Oncologist Medical College of WI For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. < Back to Topics Next Topic >

SSAs (Somatostatin Analog Therapies) READ CLICK HERE FOR AN EXCELLENT SUMMARY OF SSA'S BYNFEZIA PEN™ (OCTREOTIDE ACETATE) INJECTION COPAY ASSISTANCE - BYNFEZIA PEN™ (OCTREOTIDE ACETATE) Read 'Practical Tips for Patients on "The Shot" LISTEN Podcast Episode 32: Focus on Somatostatin Analogues (SSAs)

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Sign up for a series of free one-on-one virtual coaching sessions available to neuroendocrine tumor (NET) patients and caregivers in the United States. Health Coaching The coaching process was remarkably beneficial! When my cancer load increased, and the painful and disruptive symptoms undermined my resiliency and quality of life, my coach helped me set new goals and manifest them one by one. From exercise and meditation to dietary changes, these lifestyle corrections vastly improved my health and well-being during a difficult time. I could not have accomplished so much without it! — NM (NET patient) WHAT IS HEALTH COACHING? Health coaching is an opportunity for individuals to invest time and energy in self-care by going through a personal journey of change with a health coach as a guide. To be clear, coaching is not about seeking or receiving medical advice, nor is it therapy. The role of the health coach is not to give advice, prescribe a plan, or tell the client what to do. Health coaching is not about obtaining information about NET. (For NET-specific information and resources, visit our resources page.) Instead, health coaching is a personal journey of making positive behavioral change toward self-care with a coach as a guide. Health coaching is not intended to specifically address the medical aspects of the NET journey. The focus is not on disease management or treatment but rather, the focus is on improving one’s quality of life. The coach guides the client in defining and clarifying his/her own health and wellness goals and helps the client move toward those goals in an incremental, manageable way. “Health Coaching helped me move through a very difficult time in my journey with cancer. It was the support I needed to regain my energy and motivation. I recommend Health Coaching to anyone who wants to build physical, mental and/or emotional strength while struggling with illness.” — Mary Zoeller (NET patient) While the NET journey may be unpredictable with factors outside of the patient’s control, the client can choose to work on lifestyle choices within one’s control that may include nutrition, movement, sleep/rest, mind-body connection, spirituality, environment, or relationships, just to name a few. Through this process, the client gains the knowledge, skills, and confidence to make lasting and positive behavioral choices. A health and wellness coach (or simply “health coach”) can serve as a guide on your journey. By partnering with a health coach, you experience the powerful message that you are not alone. Connecting with a coach and with a deeper community of past, current, and future fellow travelers through groups such as the Neuroendocrine Cancer Foundation cultivates and inspires resilience. These experiences positively influence the traveler’s narrative to create one of resilience. My health coach has given me a life jacket. My coach, like the life jacket, kept my head above the uncertainty and sometimes murky waters of cancer. Doctors work diligently to save our bodies, my health coach works diligently to save our lives. She is giving us the tools, to not just live in cancer, but to THRIVE through cancer. — Beth DeBlase (NET Patient) HOW DOES IT WORK? Interested parties can click here to find out more information. LACNETS is offering a series of one-on-one telephonic coaching sessions (8-10 total) to NET patients and caregivers within the United States who are motivated to invest in their own self-care. Coaching sessions occur weekly or biweekly for approximately 3-5 months. The first 8 sessions are FREE OF CHARGE TO THE CLIENT. Two additional optional sessions are offered at a reduced cost. Session structure: Session #1: Review the client’s current state of health. Session #2: Future visioning and setting 3-6 month goals. Sessions #3-10: Work toward 3-6 month goals incrementally. Note: This program is currently available for U.S. residents only. Limited spaces available. Applicants will be taken on a first-come basis. Sign up for Health Coaching The Neuroendocrine Cancer Foundation Health Coaching Program was featured in a case study that focused on the effects of health and wellness coaching with an adult cancer caregiver. The key finding showed that health coaching proves to be a viable option for supporting caregivers in the multiple physical, psychological, and emotional challenges they face. Check out the full study published in "The Permanente Journal.” Health coaching helped me identify my roadblocks, pointed me in the right direction for valuable resources and tools, opened new doors, and provided me with action steps to help me make the changes I wanted to make. Thanks to health coaching, I have become a healthier and happier person. — Pam Wagner (NET patient) WHO ARE THE HEALTH COACHES? National Board for Health and Wellness Coaching (NBHWC), the credentialing organization for Health and Wellness Coaches, defines them as coaches who “partner with clients seeking self-directed, lasting changes, aligned with their values, which promote health and wellness and, thereby, enhance well-being. In the course of their work health and wellness coaches display unconditional positive regard for their clients and a belief in their capacity for change, and honoring that each client is an expert on his or her life, while ensuring that all interactions are respectful and non-judgmental.” Our health coaches have completed a NBHWC-approved health and wellness coaching program and demonstrated the knowledge, tasks, and skills essential to the practice of health and wellness coaching. Our coaches have passed the new Health and Wellness Certifying Exam, recognized by the National Board of Medical Examiners, earning the title of National Board Certified Health & Wellness Coach (NBC-HWC). Our coaches are graduates of the Vanderbilt Health Coaching Program under the direction of Ruth Wolever who serves on the National Board for Health and Wellness Coaching , the team that developed and created national standards, and formed a partnership with the National Board of Medical Examiners in May 2016 to launch a National Board Certification for Health & Wellness Coaches in 2017. While health coaches may be medical professionals, their function is solely that of health coach. This means although a health coach may know a great deal about health, in this role, their greatest expertise is in the process of sustainable change. This relationship is different from relationships that clients may have with their healthcare providers. It is not prescriptive in nature. Health coaches are not here to give advice, prescribe a plan, or tell their clients what to do. Instead, they serve as a guide in the client’s journey. Through this process, the client gains knowledge, skills, and confidence to make lasting and positive behavioral changes. I have been blessed to receive care from world class doctors and nurses at centers of excellence for Neuroendocrine cancer. Now I realize that the very best medical and pharmaceutical expertise is vastly enhanced by qualified Health Coaching, which addresses the emotional and motivational components of managing a life-threatening disease. — NM (NET patient) Webinar: Thriving with NETs - How Health & Wellness Coaching Can Help You OUR COACHES LEEANN HAYS RN, NBC-HWC (CST) Location: Nashville, TN Leeann Hays is a Registered Nurse and a Nationally Board-Certified Health and Wellness Coach. Her past nursing experience were in neurology, neurosurgery, and neuro-intensive care at the Vanderbilt University Medical Center. She later spent years in the pharmaceutical industry learning to network and connect with physicians. Her passion to help others also led her to volunteer with women who were victims of abuse and addiction and help them find healthier alternatives. Leeann chose to become a health coach through Vanderbilt University’s Health Coaching Program because she strongly believes that a person’s well-being is more than the absence of disease and that the heart is capable of holding both suffering and joy. Her area of expertise is in supporting positive behavior change through small, forward steps towards a more fulfilling and happy life. Her interest in the Neuroendocrine Tumor population is to care, connect, and empower patients to discover ways to cope and thrive. Leeann believes that NET patients have the power and ability to use their inherent strengths to improve the quality of their life through self-care. Leeann enjoys spending time partnering with clients to customize and discover what brings unique value and meaning to each person’s life. JULIE OIJALA RN, NBC-HWC Julie Oijala is a Registered Nurse with over 18 years of nursing experience in hospital pediatrics, surgery, intensive care, outpatient clinic, and school nursing including with medically fragile children. She has also monitored vaccine clinical trials as a Clinical Research Associate for the pharmaceutical industry. Julie received her Bachelor of Science in Nursing degree from CSU Fresno. Later she continued studying in Finland, receiving her nurse licensure and certification in Perioperative Nursing. Having lived overseas for more than 20 years through challenging and amazing times, Julie believes it has given her ‘sisu’, a Finnish concept described as bravery, resilience and hardiness. Julie’s interest in holistic health and well-being sparked her curiosity in health coaching. During her training for the Vanderbilt Health Coaching Program, she had the opportunity to coach a few clients with cancer, including neuroendocrine cancer. She is excited to provide health coaching to the NET population so they can realize their internal strengths to find forward momentum with their health and their life. She believes in the importance of the ‘here and now’ and the interconnectedness of body, mind and spirit. Julie loves the outdoors, yoga and being a life long learner. She helps as a caregiver for her elderly parents and enjoys visiting family around the world. KATHERINE SMITH NBC-HWC (EST) Location: Maryland Katherine Smith has been in the field of integrative health and wellness for over 25 years and is passionate about empowering clients to attain their highest possible quality of life. As a health coach, educator, trainer, and mind-body researcher she has delivered health-focused programs and services to children, patients, healthcare clinicians, medical and nursing students, members of the military, corporate executives, and Members of Congress and their staff. She is particularly excited to work as a health coach with the NET population after seeing her mother go through rigorous treatment for Stage 4 metastatic breast cancer and slowly rebuild a vibrant life. Katherine is faculty in the coaching department at the Maryland University of Integrative Health (MUIH) in Laurel, MD, where she teaches behavior change, motivational interviewing, positive psychology and principles of self-care. Katherine is also a longtime meditator and mindfulness instructor, teaching meditation and mind-body skills at the Georgetown University School of Medicine, George Washington University Milken School of Public Health and through MINDS Inc., a local organization that brings mindfulness into public and private schools in the local area. Katherine received her Master of Public Health (MPH) degree from the University of Michigan in 2003 and a Bachelor of Science in psychology from Duke University an 1987. Most recently, Katherine completed the Vanderbilt University’s Health Coaching Program and became one of the first National Board Certified Health & Wellness coaches in the country. An avid reader, runner, and outdoor enthusiast, Katherine lives in Arlington, VA with her husband and two daughters. PROGRAM ADVISOR RUTH Q WOLEVER PhD, NBC-HWC (CST) Location: Tennessee Ruth Q. Wolever, PhD, NBC-HWC serves as Interim Director of the Osher Center for Integrative Medicine at Vanderbilt and the Director of Vanderbilt Health Coaching . She is an Associate Professor of Physical Medicine & Rehabilitation at Vanderbilt University Medical Center, with secondary appointments in the Department of Psychiatry & Behavioral Sciences and the Vanderbilt University School of Nursing, and an Adjunct Associate Professor at Meharry Medical College. Ruth is the Chief Science Officer for eMindful, Inc. , is a founding member and was the inaugural President of the National Board for Health and Wellness Coaching . A clinical health psychologist and nationally-board certified health and wellness coach (NBC-HWC) , Ruth has over 25 years of experience training and mentoring medical and allied health professionals in behavioral medicine, emotional health and coaching. She also has over 25 years of experience designing, implementing, and evaluating behavior change programs for medical patients and those at risk for chronic disease. Internationally recognized for her expertise on mindfulness and health coaching, Ruth studies mindfulness-based approaches to self-regulation and lifestyle change. Her research has been funded by the National Institutes of Health (NCCAM – now NCCIH, Office of Women’s Health, NHLBI, NIDCD, and NIDDK), the United States Air Force, Centers for Medicare and Medicaid Services, industry, and philanthropy. Ruth is particularly interested in the intersection of mindfulness, behavior change, and inter-professional training. I would recommend the Health Coaching program for anyone looking for an avenue to deepen their self- introspection and awareness, their personal gratitude and their relationship with themselves and in turn others in their lives.” Health Coaching provided me with the motivation to concentrate on the aspects of my life that have been adversely affected by my health situation. My goal was to learn to manage the psychological, social and personal struggles associated with my PNET in a more productive and positive way. The Health Coaching Program did just this. — Mary Donlevy (NET patient) Health coaching helped me to see that I have the tools within me to navigate the tough days with this disease. I learned HOW to use these tools. I am in control of my life even with stage 4 cancer. Living and loving each day to the fullest is much easier when you can bring yourself back to the moment and be in the now. Health coaching taught me to do this. I highly recommend this process for anyone facing uncertainty. — NET Patient FORMS TO DOWNLOAD Health Coaching Agreement Intake Form Wheel of Health Health Coaching Survey Recording authorization (optional) HIPAA Release (optional) Sign up for Health Coaching Click Here to Read More About Health Coaching

Symptom Tracking Health Storylines App (FREE) by The Carcinoid Cancer Foundation + LACNETS Download Here Evernote Download Here

Our Vision The Vision initiative is in memory of Giovanna Joyce Imbesi, the late founder of LACNETS (now Neuroendocrine Cancer Foundation), whose vision was to empower neuroendocrine cancer patients and caregivers by providing a healing exchange of educational resources. The Neuroendocrine Cancer Foundation provides education, advocacy, and support through its programs, which play a key role in treatment decisions. Giovanna left behind a profound legacy. The Neuroendocrine Cancer Foundation has a great responsibility to help sustain this organization and keep her vision alive due to the impact she had on the neuroendocrine cancer community. The Neuroendocrine Cancer Foundation invites you to participate in our vision initiative supporting neuroendocrine cancer patients and their loved ones. Be a part of the healing. Make a difference today! Large or small, every gift matters and is genuinely appreciated. Your generous contribution will go towards funding the Neuroendocrine Cancer Foundation's greatest needs, such as the production of our educational webinars, podcasts, and conferences. Donate to the Neuroendocrine Cancer Foundation to carry on Giovanna's legacy and vision. Thanks to the generosity of a few committed donors, your gift will be matched dollar for dollar. Help Fund the Vision Watch the tribute video honoring Giovanna Joyce Imbesi by Rich Tamayo, Emmy Winning Video Producer & a friend In Loving Memory Giovanna Joyce Imbesi Our founder, hero & inspiration to live life fully… Giovanna Joyce Imbesi, LACNETS founder, was a patient advocate, pianist, and composer based in Los Angeles. She lived fully with neuroendocrine cancer for 14 years and served as a model of compassion, love and kindness. In 2005, after several years of misdiagnosis, Giovanna was diagnosed with metastatic small bowel neuroendocrine cancer. She understood that those with a rare cancer may feel isolated, and sharing similar experiences may lessen the fear of the unknown and offer comfort. It became her mission to help others in the NET community. Her vision was to create a community for a healing exchange of educational resources and emotional support for all affected by neuroendocrine cancer. Against all odds, Giovanna went on to receive an MBA from UCLA Anderson School of Management with the sole intent of launching LACNETS. In 2012, she founded the non-profit GeneratePossibility and the Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS) program. Giovanna's physician, Dr. Edward Wolin, was the inaugural speaker for the first LACNETS' patient education meeting. Through LACNETS, Giovanna's aspiration was to create a more "NET-fluent" world. She wanted to change the narrative from associating NET with famous people who die from the disease to raising awareness of the more than 180,000 people who live with the disease. Giovanna wrote, "Each one of us has the ability to help change those numbers in our own community. There are more opportunities to share more about NET and add one more person to the extended global family of NET awareness." Giovanna helped create tools, such as NET VITALS, to improve communication between patients and physicians. She believed that increased awareness equates to more research, which leads to improved treatments and patient outcomes. Giovanna received the 2016 Monica Warner Advocacy Award, as well as the 2019 Cedars-Sinai Patient Leadership Award , for her inspiring work in patient advocacy. Giovanna Joyce Imbesi passed away peacefully on November 24th, 2019. On her last day, Giovanna said with great pride that her greatest legacy was LACNETS. She felt blessed by this community. Giovanna often said, "Aging is a privilege." She celebrated life and connectedness. She believed in practicing gratitude, even appreciating the difficult times. She was grateful for the thousands of neuroendocrine tumor physicians, researchers and healthcare providers who work on the behalf of NET patients every day. The Neuroendocrine Cancer Foundation works daily to honor Giovanna's vision by serving the NET community she established and helping others to live life richly and fully with NET like she did. Participate in the Vision GENERATE POSSIBILITY For Giovanna, music was medicine. Her musical compositions can be heard on "Short Stories - piano music for healing, meditation & relaxation" recorded while in recovery from neuroendocrine cancer surgery. These pieces were inspired by her belief in the healing power of music as a vital element of our well-being. She frequently contributed music to NET causes. A frequent speaker on living with neuroendocrine cancer and the healing power of music, Giovanna was featured as one of six leaders in Integrative Cancer Care at the 2018 Symington Public Forum at Commonweal. We hope that Giovanna's song and her own words, "Give Me Peace," bring some comfort and peace. I’ll always be grateful for Giovanna and her work through LACNETS (now Neuroendocrine Cancer Foundation). The information I learned and connections I made through the educational meetings changed the course of my medical care and helped me to get back to a place where I could enjoy life. — Tom, NET Patient

Resources for Children CancerCare for Kids® provides free, professional support services for parents, children, and adolescents affected by cancer, as well as information about helping children understand cancer and additional resources. Help with Hope is a support group to the children whose parent has cancer. If you are a parent with cancer and have a child between the ages of 8 and 17, they can attend an online meditation support group with other kids who understand what they are going through, parents are also invited! Kesem is committed to creating a world where every child who has a parent with a cancer diagnosis or has lost a parent to cancer is never alone. Kesem supports these children through and beyond their parent’s cancer with free, fun-filled creative programs and a lasting community. Lynn Lyons helps families navigate through fear and anxiety. GRIEF RESOURCES FOR CHILDREN Child Life Services at City of Hope – addresses the needs of infants, children, teens, and families during hospitalization and outpatient treatment. Our House Grief Support – provides children with grief support services, education, resources, and hope. Comfort Zone – offers a two-day camp for grieving kids. Inner Harbor – offers mental health support for grieving students. They also train high school and college teachers and counselors and even Greek houses to support young adults. High Mark Caring Place – manages the Children's Grief Awareness Day page, helping to remind us that grieving kids need our love. Click here for Caregiver Resources SPREADING AWARENESS Designer: Lauren Buntin Download

Save the Date - June 17, 2023 Watch the 2023 LACNETS Neuroendocrine Tumor Patient Conference 2023 LACNETS Neuroendocrine Tumor Patient Conference 2023 LACNETS Neuroendocrine Tumor Patient Conference Play Video Share Whole Channel This Video Facebook Twitter Pinterest Tumblr Copy Link Link Copied Now Playing Welcome & Introduction • 2023 LACNETS Neuroendocrine Tumor Patient Conference • June 17, 2023 13:08 Play Video Now Playing NETS 101: Overview of NET Terms & Concepts • Dr. Aman Chauhan • 2023 LACNETS Patient Conference 21:51 Play Video Now Playing A Conversation with Three NET Surgeons • Dr. Clarke, Dr. Gangi & Dr. Anaya • 2023 LACNETS Conference 27:33 Play Video Join us virtually for our biggest event of the year to hear from 12 NET experts from North America. Click Here to Read Speaker Bios Visit Sponsor Booths 2023 Conference Sponsors VISIT SPONSOR BOOTHS IPSEN Booth TerSera Booth Curium Booth AAA Booth Crinetics Booth Camurus Booth The information provided is for educational purposes only and does not substitute for medical advice. Talk to your medical team if you have any questions or concerns about your individual care and treatment. The opinions expressed in this program are those of the speakers and do not represent the opinion of LACNETS.

Medical Treatments/Sequencing Treatments < Back to Topics Play Video Play Video 01:30:51 "Understanding Treatments for NETs and Rationale for Sequencing of Therapy" • Dr. Wolin • Apr 1, 25 Learn from internationally-renowned neuroendocrine cancer expert Dr. Edward Wolin in a discussion on the latest in neuroendocrine tumor treatments and understanding how to sequence them. Dr. Wolin has pioneered many of the NET treatments including somatostatin analogues (SSAs, sandostatin and octreotide), mTOR inhibitors (i.e. everolimus), anti-angiogenic drugs (i.e. cabozantinib), and peptide receptor radiotherapy (PRRT, i.e. Lutathera). Join us for an insightful presentation and live question and answer session. Learn more at https://www.ncf.net/events/apr2025 Play Video Play Video 53:12 Episode 40: "NEN Treatments: Focus on External Radiation Therapy" ABOUT THIS EPISODE What is radiation oncology, and how is it used for neuroendocrine cancer? UCSF radiation oncologists Dr. Will Chen and Dr. Alexandra Hotca-Cho describe external radiation therapy (SBRT) and how, when, and where it may be used for select patients with neuroendocrine cancers. They address common concerns about the planning process, safety concerns, and treatment sequencing. TOP TEN QUESTIONS ABOUT EXTERNAL RADIATION THERAPY FOR NEUROENDOCRINE CANCERS: 1. What is radiation oncology? How does it work? How is it different from other types of radiation? 2. What are the types of radiation therapies used for neuroendocrine cancer? 3. Which neuroendocrine cancers are they used for, and when are they used? How do you decide who is a good candidate and if it will be effective? - Where in the body can SBRT be used? (bone, liver, pancreas, rectal?) Where can it not be used in the body, and when is SBRT NOT used? - Is there a number or size limit of the tumor(s)? 4. For Bone: How do NETs affect the bones? Are they “on” or “in” the bone, and does the tumor tend to weaken it? - If given to the bone, does SBRT weaken the bone? What are the chances of fracture with radiation to the bone? Does it matter which area of the bone/body is treated? What other factors influence fracture risk? (age, dose, number of treatments)? Should patients have a bone density scan before SBRT? - If bone lesions are causing pain, how soon after treatment might a patient expect to have pain alleviated? - How common is increased pain after treatment to the bone? What causes that? 5. Safety: - How much radiation is given with these procedures? Is there a concern about radiation safety following the procedures? (Do patients need to avoid others in the hours or days after the treatment?) - Is there a lifetime limit to the amount of radiation one can receive, especially considering surveillance CT & PET scans? - How often can these procedures be repeated? - Does it damage other tissues or organs? How common are secondary cancers? What types and how treatable are they? - Is there a risk with fertility? - What other risks are there? 6. How do these therapies compare to PRRT or radioembolization in terms of safety? If someone has had PRRT or radioembolization, can they also receive radiation therapy to the liver or bones? Is there increased risks if someone has had PRRT, radioembolization or CAPTEM or alkylating agents? 7. Is there an optimal sequence for treatments? 8. What is SBRT like for patients? What is the planning and preparation process? How do you determine how many treatments and what dose to give? 9. What does the patient experience during and after the procedure? Does it hurt? What are the side effects? How much time do I need to take off of work? 10. How effective is SBRT in terms of managing symptoms? How effective is SBRT in controlling or destroying the tumor? How do you know if the treatment “worked”? Bonus: What is the future of radiation therapy in neuroendocrine cancer treatment? For more information, visit LACNETS.org/podcast/40 Play Video Play Video 47:48 Episode 39: "NEN Treatments: Focus on Liver-Directed Therapies (Part II) In this 2-part series, Dr. Osman Ahmed from the University of Chicago covers liver-directed therapies for neuroendocrine neoplasms (NENs or neuroendocrine cancer). In this second episode, he details the embolization techniques, including bland embolization (TAE), chemoembolization (TACE), and radioembolization (TARE, SIRT, y90). He discusses decision-making, sequencing, and follow-up after these procedures. Play Video Play Video 31:32 Episode 38: "NEN Treatments: Focus on Liver-Directed Therapies (Part 1) In this 2-part series, Dr. Osman Ahmed from University of Chicago covers liver-directed therapies for neuroendocrine neoplasms (NENs or neuroendocrine cancer). In this first episode, he outlines the types of liver-directed therapies and elaborates on ablative techniques including the newest technique, histotripsy. Listen to a frank discussion of how histotripsy works, when it might be used, and what its current limitations are. MEET DR. OSMAN AHMED Osman Ahmed, MD, is an expert vascular and interventional radiologist who diagnoses and treats a wide range of conditions. Using image-guided technology and small, sophisticated instruments, Dr. Ahmed performs minimally invasive procedures for acute and chronic deep vein thrombosis, benign prostatic hyperplasia, peripheral vascular disease, liver/bone/lung/kidney cancer, spinal fractures, uterine fibroids and more. He also implants inferior vena cava (IVC) filters, which prevent a blood clot from traveling around the body or creating a blockage. In addition to his clinical expertise, Dr. Ahmed researches novel treatment options that improve outcomes for patients. His research on liver cancer, IVC filters and venous diseases has been published in several high-impact, peer-reviewed journals, including the Journal of Vascular and Interventional Radiology, Radiology, Chest, Journal of American College of Radiology, and Journal of Surgical Oncology. Dr. Ahmed also believes in the importance of educating medical students, residents, fellowships and peers in order to enhance health care across the world. He has been invited to speak at a number of symposiums, practicums and national/international meetings about the newest advancements in interventional radiology. TOP TEN QUESTIONS ABOUT LIVER-DIRECTED THERAPY INCLUDING HISTOTRIPSY: 1. What is liver-directed therapy? How does it work? Is this considered “surgery”? What is a surgery and what is a “procedure?” 2. What are the types of liver-directed therapies used for neuroendocrine cancer? 3. Which neuroendocrine cancers are they used for and when are they used? How do you decide who is a good candidate and if it will be effective? 4. When are liver-directed therapies NOT used? Can someone who has had a Whipple undergo liver-directed therapy? 5. What is the ablation zone? What is a heat sink effect? 6. What is histotripsy? How does it work? 7. When is histotripsy used (tumor grade, type of tumor - PNET/lung NET, size, number of tumor, location)? Can they be used for liver tumors even if there are tumors outside the liver? 8. What are the limitations to histotripsy? 9. What happens to the liver tissue after ablation? What are the results or success rates of patients being treated? Can histotripsy “cure” NET? 10. How do you decide between the various types of liver-directed therapies? For more information, transcript and resources, visit https://www.lacnets.org/podcast/38. Play Video Play Video 39:13 Episode 36 - NEN Treatments: Focus on Immunotherapy • Dr. Jennifer Eads ABOUT THIS EPISODE What is immunotherapy? How effective are they for neuroendocrine neoplasms (NENs)? Dr. Jennifer Eads from Penn Medicine answers common questions about immunotherapy. She discusses the latest in CAR T therapy, DLL3, and vaccine therapy for NENs. MEET DR. JENNIFER EADS Dr. Jennifer Eads is an associate professor of medicine at the University of Pennsylvania, Abramson Cancer Center where she is a gastrointestinal medical oncologist focusing on the treatment of and research in patients with neuroendocrine tumors and gastroesophageal cancers. She is the Physician Lead for GI Clinical Research, overseeing the Penn GI clinical research portfolio. She is the Penn institutional principal investigator for the Eastern Cooperative Oncology Group (ECOG-ACRIN) and serves as the Director of the National Clinical Trials Network (NCTN) for the Abramson Cancer Center. She has served as principal investigator for multiple phase I/II/III clinical trials, including as the national study chair for multiple cooperative group trials. She has served on the National Clinical Cancer Network (NCCN) neuroendocrine tumors guidelines committee, is a former member of the North American Neuroendocrine Tumor Society (NANETS) Board of Directors and is currently on the Board of Scientific Advisors for the Neuroendocrine Tumor Research Foundation (NETRF). In 2022, she was named as the ECOG-ACRIN Young Investigator of the Year. TOP TEN QUESTIONS ABOUT NEN TREATMENTS: 1. What is immunotherapy? How does it work? 2. How does immunotherapy differ from other treatments? 3. When is immunotherapy used? Which neuroendocrine cancers are they used for? 4. What are the various immunotherapy drugs used for neuroendocrine cancer and how do they work? What are immune checkpoint inhibitors? 5. What is CAR-T therapy? 6. What is DLL3? 7. What is vaccine therapy? 8. What side effects might someone have when taking immunotherapy? How does it make me look (will I lose my hair)? How will it make me feel (will I be able to work)? Does immunotherapy cause someone to be immunocompromised? What monitoring needs to be done while on immunotherapy? 9. How do you decide when to use immunotherapy, which to use, and for what patient? 10. What do you see as the future of immunotherapy in neuroendocrine cancer treatment? For more information, visit https://www.lacnets.org/podcast/36 Play Video Play Video 36:39 Episode 35 - NEN Treatments: Focus on Chemotherapy • Dr. Pamela Kunz ABOUT THIS EPISODE What is chemotherapy? When are they used for neuroendocrine neoplasms (NENs)? Dr. Pamela Kunz from Yale Medicine discusses the benefits, potential side effects and latest advances in chemotherapy for NENs. She explains how it differs from other treatments for NENs and how she counsels patients as they consider chemotherapy. MEET DR. PAMELA KUNZ Dr. Pamela Kunz is an Associate Professor of Medicine in the Division of Oncology at Yale School of Medicine where she also serves as the Director of the Center for GI Cancers and Division Chief of GI Medical Oncology at Yale Cancer Center and Smilow Cancer Hospital. She received her medical degree from the Dartmouth Geisel School of Medicine. Her postgraduate training included a medical residency, chief residency, and oncology fellowship at Stanford University School of Medicine. Dr. Kunz is an international leader in the treatment and clinical research of patients with GI malignancies and neuroendocrine tumors (NETs). She holds several key leadership positions in the field including President Emeritus of the North American Neuroendocrine Tumor Society, recent past Chair of the Neuroendocrine Tumor Taskforce of the NCI and standing member of FDA’s Oncology Drug Advisory Committee. She was recently appointed Editor-in-Chief of JCO Oncology Advances. In addition to her focus on NETs, she is a leading voice for promoting diversity, equity and inclusion in medicine. She served as the Vice Chief of DEI for the Section of Medical Oncology at Yale School of Medicine and in 2021, she was awarded ‘Woman Oncologist of the Year’ by Women Leaders in Oncology for her work in promoting gender equity. TOP TEN QUESTIONS ABOUT NEN TREATMENTS: 1. What is chemotherapy? How does it work? 2. What are the chemotherapy drugs used for neuroendocrine cancer? When are they used? Which neuroendocrine cancers are they used for? 3. How does chemotherapy differ from other treatments such as SSAs or targeted therapies (everolimus, sunitinib, cabozantinib)? 4. What side effects might someone have when taking chemotherapy? Will my hair fall out? How might it affect my day-to-day ability to work and function? Can I live a “normal life” while taking this medication? Do any of these side effects have long-lasting effects? 5. Would taking chemotherapy cause someone to be immunocompromised? 6. When in one’s neuroendocrine journey might you recommend chemotherapy? Where does it fall in sequencing? 7. How do you decide which chemotherapy medication to recommend? Can they be stopped and restarted? Can they be repeated? 8. Can you take more than one drug in the category? Can they be taken in combination with another drug? 9. Does taking chemotherapy preclude someone from getting another treatment in the future such as Lutathera PRRT or a clinical trial of alpha PRRT? 10. What do you see as the future of chemotherapy in neuroendocrine cancer treatment? For more information, visit https://www.lacnets.org/podcast/35 Play Video Play Video 54:40 Episode 34 - NET Treatments: Focus on PRRT • Dr. Riham El Khouli ABOUT THIS EPISODE What is PRRT? How is it different from the more commonly used radiation treatment? What are the possible side effects? Dr. Riham El Khouli from the University of Kentucky in Lexington discusses common questions and concerns about PRRT and shares some of the latest advances. MEET DR. RIHAM EL KHOULI, MD, PHD Associate Professor of Radiology, UK College of Medicine Chief, Division of Nuclear Medicine/Molecular Imaging & Radiotheranostics (NM/MI&R) Director, Radiotheranostics Program University of Kentucky Dr. Riham El Khouli, MD PhD, is the director of the Radiotheranostics program and Chief of the division of NM/MI&R at the University of Kentucky and an Associate Professor of Radiology, Nuclear Medicine and Molecular Imaging at UK school of Medicine. The Radiotheranostics Program at UK is a multidisciplinary program that provides state of art standard of care clinical radiopharmaceutical therapy (RPT) techniques as well as a robust research program that constantly runs multiple RPT clinical trials aiming to explore new RPT management options for various cancers. Dr. El Khouli is fellowship trained double board certified, ABR and ABNM, academic Nuclear Radiologist with two decades of clinical and research experience. Her research initially focused on the evaluation and improvement of the acquisition and interpretation of advanced MRI techniques such as dynamic contrast enhanced (DCE) MRI, Diffusion weighted imaging (DWI), and 1H MR Spectroscopy in breast cancer. On 2013, Dr. El Khouli started a new journey in Nuclear Medicine, Molecular Imaging and Radioheranostics (NM/MI&R) and completed a nuclear medicine and dedicated PET/CT fellowships. During her new training, her passion toward molecular imaging and PET/CT grew and she participated in multiple nuclear medicine and PET/CT related research projects. Dr. El Khouli is passionate about research and education and active in the field of neuroendocrine tumor. She is one of the key team members of the dedicated biweekly intramural NET tumor boards. She also attended and presented in multiple regional NANETS and NET awareness group meetings (NCAN). Dr. El Khouli serves as a peer reviewer for multiple prestigious Journals such as Radiology and Radiographics, among others, and is an active member of the Radiologic Society of North America (RSNA), Society of Nuclear Medicine and Molecular Imaging (SNMMI), and the American College of Radiology (ACR). She serves as an active member of the RSNA Awards Committee, RSNA Scientific Abstract Review Committee, and Radiographic NMMI review panel committee. Dr. El Khouli is an active panel member of multiple ACR Appropriateness Criteria Panels. TOP TEN QUESTIONS ABOUT NET TREATMENTS: 1. What is PRRT? How does it work? 2. What is theranostics and what does it mean? What are the terms radiotheranostics, radiopharmaceutical, radioligand therapy, PRRT? 3. How do you determine who is eligible for PRRT? 4. When is PRRT given in one’s treatment journey? 5. How does PRRT differ from other treatments? 6. What are the common side effects of Lutathera? a. Does Lutathera have long-lasting effects? b. Would receiving Lutathera affect one’s blood counts? c. How might Lutathera affect one’s liver function? When, if ever is there concern about liver failure? 7. How might PRRT affect my quality of life and my day-to-day ability to work and function? What is the risk and effects of radiation with receiving Lutathera? a. What precautions do I need to follow? b. Can I hug my child? Can I pet my dog? c. Would receiving Lutathera cause someone to be immunocompromised? 8. How to you decide who should get PRRT? a. What is peritoneal disease and how effective is PRRT with peritoneal disease? 9. How do you assess the response to PRRT? 10. What advances in PRRT are you most excited about? For more information, visit https://www.lacnets.org/podcast/34 Play Video Play Video 48:21 Episode 33: Focus on Targeted Therapies • Dr. Scott Paulson ABOUT THIS EPISODE What are Targeted Therapies and how do they work? How and when would they be used in NETs? Dr. Scott Paulson from Baylor Cancer Center in Dallas discusses common questions and concerns about targeted therapies including side effects, dosing and treatment sequencing. Bonus: Dr. Paulson shares how we can learn from Harry Potter’s invisibility cloak in understanding treatment goals with NETs. MEET DR. SCOTT PAULSON Dr. Paulson is a medical oncologist and the medical director for the Neuroendocrine Research and Treatment Center at Baylor Charles A. Sammons Cancer Center in Dallas, Texas. He also serves as the co-director of the Gastrointestinal Research Program for the Sarah Cannon Research Institute. Dr. Paulson earned his medical doctorate at The University of Texas Southwestern Medical School. He took his residency and an internship in internal medicine at Brigham and Women's Hospital in Boston, Massachusetts. His fellowship was completed in medical oncology at the University of California, San Francisco. Dr. Paulson is active in clinical research focused on neuroendocrine tumors as well as cancers of the pancreas, liver, esophagus, stomach, and colon. Dr. Paulson is active in clinical research focused on neuroendocrine tumors as well as cancers of the pancreas, liver, esophagus, stomach, and colon. He currently is an investigator on a clinical trial studying nab-sirolimus, a mTOR inhibitor, which is a type of targeted therapy. TOP TEN QUESTIONS ABOUT TARGETED THERAPIES FOR NETs: 1. What are targeted therapies? Are they considered chemotherapy? How do they work? 2. What are the different types of targeted therapies for NETs? 3. When and how are targeted therapies used? 4. What side effects might someone have when taking a targeted therapy? a. Can targeted therapies affect blood sugars or cause diabetes? b. Can targeted therapies cause one to be immunocompromised? c. Can targeted therapies affect one’s blood counts? 5. What is the goal of treatment with targeted therapies? (Why would one take these drugs given the potential side effects? Can the side effects be managed?) 6. How do you decide which targeted therapy to recommend for a patient? 7. Can a NET patient take more than one drug in this category? Can the medications be stopped and restarted? 8. What is your approach with dosing? 9. What is your approach with monitoring? What and how often do people need blood work? 10. Does taking a targeted therapy preclude someone from getting another treatment in the future, such as Lutathera/PRRT, or a clinical trial of alpha PRRT? BONUS: What are the latest advances in targeted therapy? What is the future of targeted therapies? For more information, visit https://www.lacnets.org/podcast/33 Play Video Play Video 53:53 Episode 32: Focus on Somatostatin Analogues (SSAs) How do SSAs work? Should all NET patients be on one? What are the side effects? Dr. Edward Wolin from Mount Sinai Health System answers several common questions about the current and future role of somatostatin analogues in NET treatment. MEET DR. EDWARD M. WOLIN Professor of Medicine, Medical Oncology, Icahn School of Medicine Director, Center for Carcinoid and Neuroendocrine Tumors Tisch Cancer Institute, Mount Sinai Health System Dr. Edward M. Wolin is an internationally renowned authority on neuroendocrine tumors. Dr. Wolin is the Director of the Center for Carcinoid and Neuroendocrine Tumors at the Tisch Cancer Institute at Mount Sinai and Professor of Medicine, Medical Oncology at the Icahn School of Medicine at Mount Sinai. The multidisciplinary Center for Carcinoid and Neuroendocrine Tumors features a robust research program with clinical trials aimed at finding the most effective treatments, including immunotherapy, biologic agents, targeted radiation therapy, and new approaches in molecular imaging for diagnosis. Dr. Wolin has pioneered innovative therapies with novel somatostatin analogs, mTOR inhibitors, anti-angiogenic drugs, and peptide receptor radiotherapy. Prior to joining Mount Sinai, Dr. Wolin was Director of the Neuroendocrine Tumor Program at Montefiore Einstein Cancer Center. Previously, he worked for more than two decades with Cedars-Sinai Medical Center in Los Angeles, where he founded and directed one of the largest Carcinoid and Neuroendocrine Tumor Programs in the country, and subsequently directed the Neuroendocrine Tumor Program at University of Kentucky. Dr. Wolin is also the Co-Medical Director for the Carcinoid Cancer Foundation and is on the Carcinoid Cancer Research Grants Scientific Review Committee for the American Association for Cancer Research. He has published in many prestigious journals, including the New England Journal of Medicine and Journal of Clinical Oncology, and is a reviewer for numerous journals, including Journal of Clinical Oncology, Molecular Cancer Therapeutics, Clinical Cancer Research, and The Lancet Oncology. During Dr. Wolin’s two decades at Cedars-Sinai Medical Center in Los Angeles, he developed a close friendship with LACNETS founder Giovanna Joyce Imbesi. Dr. Wolin was instrumental in the co-founding and development of LACNETS. LACNETS has always been very dear to his heart and he cherishes and honors the memory of Giovanna. Dr. Wolin earned his medical degree from Yale School of Medicine. He completed both his residency in internal medicine and fellowship in medical oncology at Stanford University Hospital. He was also a clinical fellow at the National Cancer Institute of the National Institutes of Health. Dr. Wolin is board certified in internal medicine and medical oncology. TOP TEN QUESTIONS ABOUT SOMATOSTATIN ANALOGUES (SSAs) FOR NETS: (1) What are somatostatin analogues (SSAs)? How do they work? (2) When and how are SSAs used? (3) Which SSA should a patient be on? What is the difference? How do you decide? Do SSAs shrink tumors? (4) How do you know if a SSA will be helpful? Should ALL NET patients be on a SSA? (5) What about patients whose tumors don’t “light up” on a DOTATATE scan? (6) How long can someone stay on a SSA? Do SSAs stop working after a period of time? Do people develop a “resistance” to the medication? (7) What side effects may patients experience from the shot? What can patients do to prevent or manage these symptoms? How might it affect one’s day-to-day ability to work and function? Can I live a “normal life” while taking this medication? Many patients complain of diarrhea after getting the shot. What might you recommend to prevent or manage diarrhea from the injection? I’ve heard SSAs cause issues with the gallbladder. Could you explain more about the possible correlation? Do SSAs cause diabetes? Many patients note soreness after getting the shot. What might you recommend to prevent soreness from the injection? (8) If the tumor is growing does this mean the SSA did not work? Do you continue it when patients are treated with another treatment? When do you stop a SSA? (9) What is the future of SSAs? I heard there is a pill that is available in a clinical trial. Can I take a pill instead of getting the injection? (10) What words of hope do you have for the NET community? For more information, visit https://www.lacnets.org/podcast/32 Play Video Play Video 43:41 Episode 30: Bone & Brain Metastases in Neuroendocrine Cancer When and how often do NETs spread to the bones or brain? How are they found? What is the treatment? Dr. Robert Ramirez of Vanderbilt University addresses concerns surrounding bone metastases (or “mets”) as well as rare brain metastases. MEET DR. ROBERT RAMIREZ, DO, FACP Dr. Robert Ramirez is a medical oncologist specializing in the treatment of thoracic and neuroendocrine malignancies and an Associate Professor of Medicine at Vanderbilt University Medical Center in Nashville, TN. He earned his medical degree from the University of Medicine and Dentistry of New Jersey School of Osteopathic Medicine. He completed an internal medicine residency at Cooper University Hospital in Camden, New Jersey. He then completed a hematology and medical oncology fellowship at the University of Tennessee Health Sciences Center in Memphis, Tennessee and served as chief fellow. He is a Fellow of the American College of Physicians, and a member of American Society of Clinical Oncology, the International Association for the Study of Lung Cancer (IASLC), and the North American Neuroendocrine Tumor Society (NANETS). He serves on the Board of Directors for NANETS as well as the Scientific Review and Research Committee. His clinical and research interests include neuroendocrine tumors (NETs) and lung cancer. He has a specific interest in NETs of the lung ranging from diffuse idiopathic pulmonary neuroendocrine tumor cell hyperplasia (DIPNECH) and carcinoid tumors to small cell lung cancer and other high-grade neuroendocrine carcinomas. He is active in clinical trial design including investigator-initiated trials. He enjoys teaching residents and fellows and has multiple publications and given many lectures for the scientific community on the topics of NETs and lung cancers. TOP TEN QUESTIONS Bone mets: 1. When and how often do NETs spread to the bones? 2. Where in the bones are tumors? What does it mean when NETs spread to the bones? How does this compare to other cancers? 3. How are bone spots found and monitored? Should they be biopsied? 4. What is the treatment for bone mets? Should I have radiation? Would radiation limit my ability to get PRRT? 5. Should I be on bone strengthening medication? Am I at higher risk for fractures (or breaking my bones) if I have NETs in the bones? 6. Do bone mets respond to PRRT? 7. Does having bone mets put me at a higher risk of MDS? Brain mets: 8. When and how often do NETs spread to the brain? Do all types of NETs have the potential to spread to the brain? 9. How are brain mets found and monitored? When should I suspect this? 10. How are brain mets treated? What does having brain mets mean for my life? *Bonus: What final words of hope do you have for the neuroendocrine cancer community? For more information, visit https://www.lacnets.org/podcast/30. Play Video Play Video 46:13 Episode 27: What to Know About Neuroendocrine Tumor Liver Metastases ABOUT THIS EPISODE What do you call NETs in the liver? How often do NETs spread and what causes NETs to spread? How do you determine if surgery is an option? Dr. Xavier Keutgen from the University of Chicago brings clarity to NET tumors found in the liver and describes how surgery fits in with other treatments for metastatic NETs. MEET DR. XAVIER KEUTGEN Xavier M. Keutgen MD is a board-certified, double-fellowship trained surgeon who specializes in the treatment of gastro, entero, pancreatic neuroendocrine tumors and neoplasms of the thyroid, parathyroid and adrenal glands. A native from Belgium, Dr. Keutgen graduated magna cum laude from the University of Heidelberg Medical School in Germany and completed a general surgery residency and surgical oncology research fellowship at New York Presbyterian Hospital-Weill Cornell Medical Center. He then completed a hepato-pancreato-biliary fellowship at the University Hospital of Zurich in Switzerland as well as an endocrine oncology and surgery fellowship at the National Cancer Institute, National Institutes of Health (NIH) in Bethesda, Maryland. Dr. Keutgen currently serves as the director of the Neuroendocrine Tumor Program, director of the Endocrine Research Program and co-director of the Von Hippel-Lindau Clinical Care Program at the University of Chicago Medicine. Throughout his career Dr. Keutgen has developed a particular interest in clinical, translational and basic science research. His laboratory specializes in investigating the role of radiation therapy and DNA damage repair in pancreatic, lung and small bowel neuroendocrine tumors, discovering new actionable molecular targets for neuroendocrine tumors, and elucidating new mechanisms of drug delivery for endocrine malignancies. TOP TEN QUESTIONS 1. What is liver NETs? How often do NETs spread? Is it expected that NETs will eventually spread? 2. If the primary tumor was already removed, do you now call this liver NET or do you still refer to it by the primary site of origin – and why? How is this different from liver cancer? 3. What causes NETs to spread? Is there anything that is done to cause NET tumors to spread? Is there anything that can be done to keep them from spreading? 4. How do you determine if surgery is an option? What is involved in evaluating metastases? What scans or labs are needed? 5. How do you decide what the “tumor burden” is? 6. How do you weigh the grade or ki67? How do you weigh tumor size? Is there a cut-off for tumor size or the number of tumors that is too much to operate? 7. How does one decide between surgery versus other options? How often can surgery or other treatments be done? How safe is liver surgery? 8. How do you approach surgery for someone with liver tumors who also has tumors in the tail versus the head of the pancreas? 9. When someone has had a Whipple surgery and later is found to have tumors in the liver, what are the options? 10. What advances in the field are you most excited about? For more information, visit https://www.lacnets.org/podcast/27. Play Video Play Video 44:15 Episode 26 - What to Know About Lung NETs ABOUT THIS EPISODE What are lung NETs? What is DIPNECH? How is lung NET similar or different from lung cancer? Dr. Vineeth Sukrithan from Ohio State University Comprehensive Cancer Center gives a comprehensive overview of lung NET and DIPNECH, including the work-up and treatment options. He also discusses open clinical trials and exciting advances in lung NET research on the horizon. MEET DR. VINEETH K. SUKRITHAN Dr. Vineeth Sukrithan is a medical oncologist who specializes in the study and treatment of neuroendocrine cancer, thyroid cancer and adrenocortical cancer. He utilizes traditional chemotherapy, molecularly targeted oral medications, novel immunotherapy and peptide-receptor radiotherapies in the treatment of these unique cancers. As a comprehensive cancer center, the OSUCCC – James has unrivaled experience and expertise in the treatment of neuroendocrine, thyroid and adrenal tumors. Their world-renowned faculty are leaders in the study and treatments of these rare cancers, and as such, they are able to provide their patients with options beyond standard therapies that may not be available anywhere else. The strong focus on translational research at The James means that the treatment breakthroughs of tomorrow are being discovered in their laboratories today. Dr. Sukrithan is part of a tight-knit team of surgical oncologists, radiation oncologists and interventional radiologists who work together to provide cutting-edge care for our patients with neuroendocrine tumors. In addition to his clinical work, Dr. Sukrithan is a member of the Translational Therapeutics Program at the OSUCCC – James and the co-director of the Adrenal Tumor Clinic. He was recently selected to lead an externally funded effort through the International Thyroid Oncology Group to operationalize a multi-institutional registry database for patients with medullary thyroid cancer. Dr. Sukrithan also serves as an assistant professor in the Division of Medical Oncology at The Ohio State University and has completed postdoctoral fellowships in clinical research at Johns Hopkins University. His research has been published in numerous peer-reviewed journals, including Cancer Research, American Journal of Clinical Oncology and Clinical Lung Cancer. As every individual’s cancer is molecularly unique in countless ways, Dr. Sukrithan believes in tailoring therapies to the individual with the precision made available through cutting-edge scientific research. He feels it is a privilege to make a difference in the lives of patients as we work together to achieve a cancer-free world. TOP 10 QUESTIONS 1. What are lung NETs? Where are they located? 2. How are lung NETs found? What are the symptoms of a lung NET? 3. How is lung NETs different (or similar) to what is commonly referred to as “lung cancer”? 4. How is it different or similar to DIPNECH? Do all lung NET patients have DIPNECH and do all DIPNECH patients have lung NET? 5. How is lung NET similar or different from other types of NETs? What makes it unique? 6. What types of labs, scans, or testing is done to determine if someone has a lung NET and DIPNECH? What is the best type of scan for lung NETs? 7. How do you decide if the lung NET can be surgically removed? What type of surgeon would make that determination and when in their patient journey might they see a surgeon? 8. How are lung NETs treated medically (or nonsurgically)? How are the treatments different from other NETs? How are treatments sequenced? 9. How are lung NETs monitored? What types of blood work, tests and scans should be done and how often should they be done? 10. What advances in the field or clinical trials should we be aware of? What new advances or treatments in the pipeline for lung NETs are you most excited about? Play Video Play Video 45:52 Episode 25 - What to Know About Grade 3 Poorly Differentiated Neuroendocrine Carcinoma (NEC) ABOUT THIS EPISODE What are Grade 3 Poorly Differentiated Neuroendocrine Carcinoma (NEC)? What makes NEC unique? Can a NET transform to NEC? Dr. Nitya Raj from Memorial Sloan Kettering Cancer Center in New York City explains NEC tumor biology and how it guides treatment strategy. She also discusses current clinical trials and research. MEET DR. NITYA RAJ Nitya Raj, MD is a gastrointestinal medical oncologist with a clinical practice devoted to caring for people with gastrointestinal and endocrine cancers, including neuroendocrine tumors, adrenal cancer, colorectal cancer, pancreatic cancer, and other gastrointestinal cancers. Dr. Raj’s research focuses on advancing treatments for neuroendocrine cancers (a rare group of tumors that often begin in the body’s digestive organs as well as adrenocortical cancers. Dr. Raj is also studying ways to improve our understanding of how neuroendocrine tumors change at the genetic level over time and as a result of different treatments, in order to better personalize our care for people with these cancers. Dr. Raj’s work has been recognized and supported by the American Society of Clinical Oncology with a Young Investigator Award and Career Development Award, as well as by the Neuroendocrine Tumor Research Foundation with a Pilot Award. Nationally, Dr. Raj serves on the Neuroendocrine Tumor Task Force of the National Cancer Institute. Dr. Raj is on the faculty of Memorial Sloan Kettering Cancer Center and Weill Cornell Medical College. TOP 10 QUESTIONS 1. What is a poorly differentiated grade 3 neuroendocrine carcinoma (NEC)? Are all NEC poorly differentiated and are all poorly differentiated NEC? Where are they located? 2. How are NEC found? How does one know it is a NEC? 3. How is NEC unique compared to other types of neuroendocrine cancers? In particular, how is it different from grade 3 NET? 4. What types of labs, scans, or testing for NEC? 5. Can a NEC be surgically removed? How would you decide if, when, and how? 6. How are NEC treated medically (or nonsurgically)? 7. What treatment might you use as second-line? What is the role of liver-directed therapy? What is the role of immunotherapy? 8. What are clinical trials we should be aware of or exciting new treatments in the pipeline for NEC? 9. How are NEC monitored? What types of bloodwork or tests should be done and how often should they be done? 10. What words of hope would you like to leave the neuroendocrine cancer community with? For more information, visit https://www.lacnets.org/podcast/25. Play Video Play Video 40:58 Episode 24 - What to Know About Grade 3 Well-Differentiated NETs ABOUT THIS EPISODE What are grade 3 NETs and how is it different from grade 3 NEC and other types of NETs? Dr. Mohamad (Bassam) Sonbol from Mayo Clinic in Phoenix, Arizona, enlightens us on this fairly new entity, including treatment options, treatment sequencing and clinical trials. MEET DR. MOHAMAD BASSAM SONBOL Mohamad Bassam Sonbol, M.D., is an Oncologist, with special interest in neuroendocrine tumors and gastrointestinal malignancies. In addition to his clinical activities, Dr. Sonbol is active in research that focuses on investigating novel treatments including targeted therapies, immunotherapy, and other agents that could potentially help patients with neuroendocrine and gastrointestinal cancers. Dr. Sonbol focuses on the holistic treatment for cancer patients taking into consideration their medical and social aspects that have been affected by their cancer diagnosis. TOP 10 QUESTIONS 1) What are grade 3 NETs? Where are they located? How is grade 3 NETs different from other types of NETs? In particular, how is it different from grade 3 NEC? Can NET change into NEC? 2) How are grade 3 NETs found? How does one know it is grade 3? 3) What types of labs, scans, or testing is done to determine if someone has a grade 3 NET? 4) Can a grade 3 NET be surgically removed? How would you decide if, when, and how? 5) How are grade 3 NETs treated medically (or nonsurgically)? How are treatments sequenced? 6) How are the treatments different from other NETs? 7) How are grade 3 NETs monitored? What types of bloodwork or tests should be done and how often should they be done? What is the best type of scan for grade 3 NETs? 8) Can the tumors change in grade, Ki-67, and differentiation? What is the likelihood of NET changing to NEC and is there anything that can predict this or prevent this from happening? 9) What are clinical trials we should be aware of or exciting new treatments in the pipeline for grade 3 NETs? 10) What words of hope would you like to leave the NET community with? For more information, visit https://www.lacnets.org/podcast/24. Play Video Play Video 31:25 Episode 23 - What to Know About Hindgut & Appendiceal NETS ABOUT THIS EPISODE What are Hindgut NETs (distal colon and rectum) and how are they treated? How is rectal NET different from rectal cancer? What makes appendiceal NETs difficult to diagnose? Dr. Hagen Kennecke from Providence Cancer Institute in Portland, Oregon shares insights on the diagnosis and management of Hindgut NETs and appendix NET. MEET DR. HAGEN KENNECKE Dr. Hagen Kennecke is a Medical Oncologist and Medical Director of GI Oncology at Providence Cancer Institute and Associate Member of the Chiles Research Institute in Portland, Oregon. He has worked passionately to improve the treatment, education and outcomes of those affected by neuroendocrine tumors. Dr. Kennecke is an active clinician researcher, the recipient of numerous research awards and has authored numerous guidelines on the treatment of neuroendocrine tumors. He is a member of the US NCI GI Steering Committee and is a prior member of the NCI-NET Task Force, and has worked extensively within the neuroendocrine community including NANETS, Carcinoid Cancer Foundation, LACNETS and Healing NETS. TOP 10 QUESTIONS 1) What are hindgut NETs? Where are they located? What are the different types of hindgut NETs? 2) How are hindgut NETs found? What are the symptoms of a hindgut NET? 3) What types of labs, scans, or testing is done to determine if someone has a hindgut NET? Could you discuss why people with appendix NET often have a challenging time getting a diagnosis. 4) How is rectal NET different from rectal cancer? What are some ways that hindgut NETs differ from other types of NETs? What makes rectal NET unique? 5) How do you decide if the hindgut NET(s) can be surgically removed? What type of surgeon would make that determination? There are people diagnosed with appendix NET who have been told by their doctor to have a hemicolectomy. What is your opinion about this? 6) How are hindgut NETs treated medically or nonsurgically? 7) How are treatments sequenced? 8) How are the treatments different from other NETs? 9) How are hindgut NETs monitored? What types of bloodwork or tests should be done and how often should they be done? What is the best type of scan for hindgut NETs? 10) What are clinical trials we should be aware of or exciting new treatments in the pipeline for hindgut NETs? And what words of hope would you like to share with the NET community? For more information, visit https://www.lacnets.org/podcast/23. Play Video Play Video 44:47 Episode 22 - What to Know About Pancreatic NETs ABOUT THIS EPISODE What is the difference between Pancreatic Neuroendocrine Tumor (PNET) and Pancreatic Cancer? Where exactly is the pancreas located and why is the tumor location important? NET Oncologist Dr. Jennifer Chan from Dana-Farber Cancer Institute takes us through how some treatments, imaging and blood work are unique to PNETs. She also expounds on several ongoing and active trials. MEET THE SPEAKER JENNIFER CHAN, MD, MPH Assistant Professor of Medicine, Harvard Medical School Institute Physician, Division of Medical Oncology, Dana-Farber Cancer Institute Jennifer Chan, MD, MPH is an Associate Professor of Medicine at Harvard Medical School and Institute Physician in the Division of Medical Oncology at Dana-Farber Cancer Institute in Boston, MA. She focuses her clinical practice on the care of patients with neuroendocrine tumors and gastrointestinal cancers. Dr. Chan is the Director of the Program in Neuroendocrine and Carcinoid Tumors and Clinical Director for the Gastrointestinal Cancer Center at the Dana-Farber/Brigham and Women's Cancer Center. She has been principal investigator of multiple clinical trials investigating novel therapies for neuroendocrine tumors and has been involved in studies examining factors associated with clinical outcomes in patients with neuroendocrine tumors. Dr. Chan is a past chair of the Guidelines Committee of the North American Neuroendocrine Tumor Society (NANETS) and serves on the National Comprehensive Cancer Network (NCCN) Neuroendocrine Tumors Guidelines Panel. She is a member of the Neuroendocrine Tumor Taskforce of the National Cancer Institute and the Board of Directors of NANETS. TOP 10 QUESTIONS 1. What are pancreatic NETs? Where are they located? 2. How are pancreatic NETs found? What are the symptoms of a pancreatic NET? 3. How is pancreatic NETs different from “pancreatic cancer?” How is it different from a pancreatic cyst? 4. What types of labs, scans, or testing is done to determine if someone has a pancreatic NET? 5. What are some ways that pancreatic NETs differ from other types of NETs? What makes it unique? 6. How do you decide if the pancreatic NET can be surgically removed? What type of surgeon would make that determination? 7. How are pancreatic NETs treated medically (or nonsurgically)? How are treatments sequenced? 8. How are the treatments different from other NETs? 9. How are pancreatic NETs monitored? What types of bloodwork or tests should be done and how often should they be done? What is the best type of scan for pancreatic NETs? 10. What are clinical trials we should be aware of or exciting new treatments in the pipeline for pancreatic NETs? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast22. Play Video Play Video 45:34 Episode 21 - What to Know About Small Bowel NETs ABOUT THIS EPISODE How are small bowel NETs diagnosed, treated, and monitored? How is it different from other types of NETs? What are some exciting new treatments for small bowel NETs? NET oncologist Dr. David Zhen of Fred Hutchinson Cancer Center in Seattle answers 10 common questions about small bowel NETs. MEET THE SPEAKER DAVID B. ZHEN, MD Assistant Professor, Division of Medical Oncology, University of Washington Assistant Professor, Clinical Research Division, Fred Hutchinson Cancer Center Dr. David Zhen is a medical oncologist who specializes in treating patients with gastrointestinal cancers. His research centers around the development of clinical trials evaluating new therapies and combination approaches for the treatment of patients with gastrointestinal cancers, particularly for neuroendocrine and gastroesophageal cancers. He is also conducting research to understand the interactions of the immune system in gastrointestinal cancers and how this can be manipulated to improve upon the response to immunotherapy drugs called checkpoint inhibitors, which block a braking system that cancers use to tamp down the immune response. TOP 10 QUESTIONS 1. What are small bowel NETs? Where are they located? 2. How are small bowel NETs found? What are the symptoms of a small bowel NET? 3. What types of labs, scans, or testing is done to determine if someone has a small bowel NET? Why are small bowel NETs not found in routine endoscopy or colonoscopy? 4. What are some ways that small bowel NETs differ from other types of NETs? What makes small bowel NETs unique from other types of NETs? 5. How do you decide if the small bowel NET(s) can be surgically removed? What type of surgeon would make that determination? 6. How are small bowel NETs treated medically? 7. How are treatments sequenced? 8. How are the treatments different from other NETs? 9. What are some exciting new treatments in the pipeline for small bowel NETs? What are clinical trials we should be aware of for small bowel NETs? 10. How are small bowel NETs monitored? What types of bloodwork or tests should be done and how often should they be done? What is the best type of scan for small bowel NETs? Bonus: What words of hope would you like to share with the NET community? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast21. Play Video Play Video 01:01:43 Episode 20 - Gastric NET, Gastrinomas & Zollinger-Ellison Syndrome (ZES) ABOUT THIS EPISODE Gastroenterologist and Neuroendocrinologist Dr. David C. Metz discusses important concepts in Gastric NET, Gastrinomas and Zollinger-Ellison Syndrome, including detection, treatments, associated risks and monitoring. He also lends valuable insight on ulcers, MEN and proton pump inhibitors. MEET THE SPEAKER David C. Metz, MD Professor of Medicine, Perelman School of Medicine Co-Director Emeritus, University of Pennsylvania Neuroendocrine Tumor Program After earning his MD from the University of the Witwatersrand's Medical School, Dr. Metz was a resident at both the Albert Einstein Medical Center and the Johannesburg General Hospital. He went on to complete fellowships at Georgetown University Hospital as well as the National Institutes of Health. Arriving at Penn Medicine in 1993, David Metz, MD, held a variety of leadership roles within the Department of Gastroenterology, including Co-Directorship of the Neuroendocrine Tumor Center and Penn NET Treatment Program. Dr. Metz was previously a staff fellow at the National Institutes of Health, where he performed basic research in pancreatic acinar cell secretion and clinical research in Zollinger-Ellison syndrome. While at Penn Medicine, he served as Chair of the North American Neuroendocrine Tumor Society (NANETS), as a member of the Liaison Committee for Recertification of the American Board of Internal Medicine (American Gastroenterological Association representative), and on the Food and Drug Administration Gastrointestinal Drugs Advisory Committee, among other positions. Dr. Metz's clinical interests at Penn included Zollinger-Ellison syndrome and other acid-peptic conditions, Helicobacter pylori infection, non-steroidal anti-inflammatory drug gastropathy and the diagnosis and management of patients with functional and non-functional neuroendocrine tumors of the pancreas and alimentary tract. An investigator for a series of prominent clinical trials in all of these areas, Dr. Metz has published more than 200 articles on topics of clinical interest and research. He retired in July 2021 after 28 years at Penn Medicine. In 2021 Dr. Metz received the NANETS Lifetime Achievement Award that honors an individual who, over the course of their career, has provided outstanding contributions to neuroendocrine disease management through research, clinical practice or educational initiatives, as well as exceptional leadership in NANETS and dedication to its mission. TOP 10 QUESTIONS 1. What is Gastric NET? How is it found? What are the symptoms? How does it differ from “stomach cancer” or other types of NETs? 2. How is Gastric NET treated and how is it monitored? 3. What is a Gastrinoma? How and where is it found? Are Gastrinomas and Gastric NET the same thing? 4. How is a Gastrinoma treated? 5. How is a Gastrinoma monitored? - How often do you recommend Endoscopies or Gastrin level lab testing? - Does a high Gastrin level mean someone has a Gastrinoma or are there other causes? Can you have a high Gastrin level without having a gastrinoma? 6. What is Zollinger-Ellison Syndrome? How is it found? What are the common symptoms from ZES/functioning Gastrinomas? 7. How is Zollinger-Ellison Syndrome treated? How is Zollinger-Ellison Syndrome monitored? Does ZES put you at risk for other conditions/complications? 8. What is a common Proton Pump Inhibitor dose for someone with ZES? Is there a danger in taking PPIs for a long time or in high doses? 9. I’ve been told I have an ulcer? Am I at risk for cancer? 10. What are advances for gastric nets, gastrinomas or Z-E syndrome that we should be aware of or excited about? *Bonus question: What last words of hope would you like to leave the NET community with? For more resources and the transcript of this episode, visit https://www.lacnets.org/podcast20. Play Video Play Video 16:44 "How Patient Preferences Impact Treatment Decisions" • Daneng Li, MD • 2023 NET Cancer Day @NCFCancer "How Patient Preferences Impact Treatment Decisions" • Daneng Li, MD • 2023 NET Cancer Day Symposium @NCFCancer • Santa Monica, CA Speaker: Daneng Li, MD Medical Oncologist City of Hope For more information, visit LACNETS.org. Play Video Play Video 16:08 "Medical Treatments" • Andrew Hendifar, MD • 2023 NET Cancer Day Symposium @NCFCancer "Medical Treatments" • Andrew Hendifar, MD • 2023 NET Cancer Day Symposium • Santa Monica, CA Speaker: Andrew Hendifar, MD Medical Oncologist, Cedars-Sinai For more information, visit LACNETS.org Play Video Play Video 14:17 "Understanding NET Guidelines" with Dr. Jaydira Del Rivero • 2024 #LACNETS Patient Conference 14) Understanding NET Guidelines • 2024 Neuroendocrine Tumor Patient Conference Our 2024 LACNETS Neuroendocrine Tumor Patient Conference is designed for neuroendocrine cancer (NET) patients and caregivers to deepen your understanding of NETs. Whether you are newly diagnosed or have been living with NET for many years, we encourage you to attend: - Learn from top NET experts from across North America on a range of topics relevant to the NET patient journey. - Topics include work-ups, scans, surgery, carcinoid crisis, liver-directed therapy, PRRT, systemic treatments, treatment sequencing, NET guidelines, and clinical trials. - Gain insight into NET decision-making through the NET tumor board panel discussion. - Hear stories from NET patients and caregivers. - Join virtually, where you can pause, rewind, or replay. - There is no cost to attend. This event is made possible by the generosity of donors and sponsors. #LACNETS #neuroendocrinecancer #clinicaltrials #lungcancer #NETcancer #Letstalkaboutnets For more information, visit LACNETS.org. Play Video Play Video 43:00 "NET Tumor Board Panel: Understanding NET Liver Metastases" • 2024 #LACNETS Patient Conference 11) Understanding NET Liver Metastases • 2024 Neuroendocrine Tumor Patient Conference Dr. Osman Ahmed, Dr. Erik Mittra, Dr. Jaydira Del Rivero, and Dr. Gagandeep Singh Our 2024 LACNETS Neuroendocrine Tumor Patient Conference is designed for neuroendocrine cancer (NET) patients and caregivers to deepen your understanding of NETs. Whether you are newly diagnosed or have been living with NET for many years, we encourage you to attend: - Learn from top NET experts from across North America on a range of topics relevant to the NET patient journey. - Topics include work-ups, scans, surgery, carcinoid crisis, liver-directed therapy, PRRT, systemic treatments, treatment sequencing, NET guidelines, and clinical trials. - Gain insight into NET decision-making through the NET tumor board panel discussion. - Hear stories from NET patients and caregivers. - Join virtually, where you can pause, rewind, or replay. - There is no cost to attend. This event is made possible by the generosity of donors and sponsors. #LACNETS #neuroendocrinecancer #clinicaltrials #lungcancer #NETcancer #Letstalkaboutnets For more information, visit LACNETS.org. Play Video Play Video 21:04 "Understanding the Latest in Systemic Treatments" with Dr. Halfdanarson • 2024 Patient Conference 10) Understanding the Latest in Systemic Treatments • 2024 Neuroendocrine Tumor Patient Conference Our 2024 LACNETS Neuroendocrine Tumor Patient Conference is designed for neuroendocrine cancer (NET) patients and caregivers to deepen your understanding of NETs. Whether you are newly diagnosed or have been living with NET for many years, we encourage you to attend: - Learn from top NET experts from across North America on a range of topics relevant to the NET patient journey. - Topics include work-ups, scans, surgery, carcinoid crisis, liver-directed therapy, PRRT, systemic treatments, treatment sequencing, NET guidelines, and clinical trials. - Gain insight into NET decision-making through the NET tumor board panel discussion. - Hear stories from NET patients and caregivers. - Join virtually, where you can pause, rewind, or replay. - There is no cost to attend. This event is made possible by the generosity of donors and sponsors. #LACNETS #neuroendocrinecancer #clinicaltrials #lungcancer #NETcancer #Letstalkaboutnets For more information, visit LACNETS.org. Play Video Play Video 21:49 The Latest in Systemic Treatments & Considerations for Treatment Sequencing • Dr. Kunz • LACNETS Watch "The Latest in Systemic Treatments & Considerations for Treatment Sequencing" with Dr. Pamela Kunz. This presentation is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. For more information, visit LACNETS.org. Play Video Play Video 01:32:27 LACNETS Webinar: “NET Medical Therapies” with NET Oncologist Dr. Randy Hecht NET oncologist Dr. Randy Hecht of the UCLA GI Oncology Program gives an overview of NET medical therapies - when they are used, what side effects they might have, and what risks and benefits there are. Dr. Hecht's presentation also focuses on GI NETs. This webinar includes a presentation and Q&A. Speaker: J. Randolph Hecht, MD Professor of Clinical Medicine Director, UCLA GI Oncology Program To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 01:30:15 LACNETS Webinar: "2022: Year in Review" with Medical Oncologist Dr. Thor Halfdanarson Join LACNETS and medical oncologist Dr. Thorvardur Halfdanarson of Mayo Clinic for the webinar "2022: Year in Review" for an update on the major medical conferences of 2022. This webinar includes a presentation and Q&A. Speaker: Thor Halfdanarson, MD Medical Oncologist Mayo Clinic To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 21:13 13. Managing NET Symptoms & Treatment Side Effects (Dr. Sandy Kotiah) - 2022 LACNETS Conference Dr. Sandy Kotiah addresses the management of #NET symptoms and treatment side effects. Speaker: Sandy Kotiah, MD Medical Oncologist, Mercy Medical 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 15:21 09. The Latest in Liver Directed Therapy + Histotripsy (Dr. Osman Ahmed) - 2022 LACNETS Conference International radiologist Dr. Osman "Os" Ahmed addresses the latest in liver-directed therapy and histotripsy for neuroendocrine cancer. Speaker: Osman Ahmed, MD International Radiologist, University of Chicago 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 22:57 08. NET Treatments: Medical Therapies & Clinical Trials (Dr. Diane Reidy) - 2022 LACNETS Conference Dr. Diane Reidy-Lagunes joins us for her presentation on NET treatments, including medical therapies & clinical trials. *This presentation is also available in Spanish: lacnets.org/spanish-resources Speaker: Diane Reidy-Lagunes, MD Medical Oncologist, Memorial Sloan Kettering 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 01:18:31 LACNETS - "Shared Decision Making with your NET Team" with Drs. Gangi, Hendifar, Nissen LACNETS Meeting - "Shared Decision Making with your NET Team" Tuesday, February 11th, 2020 Venue: Cedars-Sinai Medical Center Speakers: Alexandra Gangi, MD, Surgical Oncology Andrew Hendifar, MD, Gastrointestinal Oncology Nicholas Nissen, MD, Surgeon www.LACNETS.org Load More < Back to Topics Next Topic >