<< Go back to the Podcast page EPISODE 44: UNDERSTANDING CLINICAL TRIALS & HOW THEY FIT IN THE NEUROENDOCRINE CANCER JOURNEY Download a Transcript of this Episode >>> ABOUT THIS EPISODE When in one’s neuroendocrine cancer journey might a clinical trial be considered? What factors influence treatment decisions, including whether to pursue a clinical trial? Dr. Alexandria Phan, medical oncologist at the Medical College of Wisconsin, offers thoughtful guidance on when and how clinical trials fit into the neuroendocrine cancer journey. This episode helps demystify the clinical trial process and empowers patients to engage in meaningful, proactive conversations with their care teams. MEET ALEXANDRIA PHAN, MD, FACP Dr. Alexandria Phan is a hematologist and medical oncologist at the Froedtert & Medical College of Wisconsin. Clinical practice, clinical research and education are three pillars important to Dr. Phan’s approach to cancer care. Her areas of focus for clinical research and patient care are neuroendocrine tumors and malignancies of the gastrointestinal system. She has held several leadership positions including cancer center director, founding program director for Hematology-Oncology fellowship, medical director of clinical research, and national director for GI cancer program. TOP TEN QUESTIONS: What is a clinical trial? When in one’s neuroendocrine cancer journey might a clinical trial be considered? Many people think of clinical trials as a “last resort” option? When in one’s neuroendocrine cancer journey should a clinical trial be considered? How do you, as a neuroendocrine expert, consider clinical trials for your patients? What is the process of considering clinical trials? Do you suggest them or do your patients suggest them? If a patient is interested, do you refer them to a clinical trial or is it their responsibility to reach out to the investigator (if it is not you)? If I am at a decision point and there are multiple treatment options available including clinical trials, what advice or insights do you have to help make this decision? When might a clinical trial be “better” than what is already available? How does timing factor into the decision? How long does it take to enroll/start a clinical trial? What if the trial is not available at the institution I’m going to? How do patients keep abreast of clinical trials? How can they better understand the trial? How long do clinical trials take? If I start a clinical trial, how long could I expect to be on it? How often do clinical trials open/close? How often do spots [slots] open? How do I optimize my options? If I want to keep my options open for future clinical trials, what are certain considerations in selecting current treatments to make sure to maximize future clinical trials options? What is on the horizon for neuroendocrine cancer that you’re most optimistic about? RESOURCES Clinical Trials Guide View more videos on research and clinical trials in our Video Library>>> READ CHD Guidelines & Articles: ENETS guidance paper for carcinoid syndrome and carcinoid heart disease Davar et al (2017) Diagnosing and Managing Carcinoid Heart Disease in Patients With Neuroendocrine Tumors: An Expert Statement. J Am Coll Cardiol.; 69 (10) 1288–1304 Jin et al (2021) Carcinoid Heart Disease: Pathophysiology, Pathology, Clinical Manifestations, and Management. Cardiology;146:65–73 Ram et al (2019) Carcinoid Heart Disease:Review of Current Knowledge. Texas Heart Institute Journal February 2019, Vol. 46, No. 1 Additional Resources: Xermelo or Telotristat Ethyl Interscience Institute provides NET Diagnostic Testing including pancreastatin and serotonin. DISCLAIMER The Neuroendocrine Cancer Foundation 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 the Neuroendocrine Cancer Foundation. Please contact your medical team with questions or concerns about your individual care or treatment. THANK YOU TO OUR SPONSORS

<< Go back to the Podcast page EPISODE 28: TOP 10 HIGHLIGHTS OF THE 2023 NANETS SYMPOSIUM Download a Transcript of this Episode >> ABOUT THIS EPISODE In this special episode, Oregon Health & Sciences University (OHSU) Medical oncologist, Dr. Guillaume (Will) Pegna, recaps the North American Neuroendocrine Tumor Society (NANETS) 2023 Multidisciplinary NET Medical Symposium. He shares the latest developments in NET research and medical advances from the conference and discusses why they matter to the NET patient community. MEET DR. GUILLAUME PEGNA Dr. Pegna is a medical oncologist who specializes in the care of adults with neuroendocrine tumors (NETs). He is additionally interested and experienced in the management of rare tumors including pheochromocytomas, paragangliomas and adrenocortical carcinomas as well as other gastrointestinal cancers. Dr. Pegna is actively involved with clinical trials and cancer research to improve survival and quality of life for cancer patients and to better understand the biology of these diseases. He specializes in the use of chemotherapy, immunotherapy and multidisciplinary approaches to cancer care. Dr. Pegna finds it rewarding to help patients understand their disease, providing treatment options based on each individual patient, and supporting them through their treatment journeys. TOP 10 HIGHLIGHTS OF THE 2023 NANETS SYMPOSIUM REFERENCES Honorable Mentions: C-46 - " P eptide Receptor Radionuclide Therapy Improves Survival in Patients Who Progress After Resection of Gastroenteropancreatic Neuroendocrine Tumors" Luis C. Borbon et al C-51 - " A Prospective Phase II Single-Arm Trial on Neoadjuvant Peptide Receptor Radionuclide Therapy (PRRT) with 177Lu-DOTATATE Followed by Surgery for Pancreatic Neuroendocrine Tumors (NeoLuPaNET)" Stefano Partelli et al Top 10: 10. C-39 - " Repeat Peptide Receptor Radionuclide Therapy in Neuroendocrine Neoplasms: A NET Center of Excellence Experience" Dr. Grewal at University of Iowa Holden Cancer Center & Lindsay Hunter, MD, Huntsman Cancer Institute 9. C-25 - " Pilot Study of Pembrolizumab and Peptide Receptor Radionuclide Therapy for Patients with Metastatic Well-Differentiated Neuroendocrine Tumors " Preliminary results of a prospective clinical trial by Nicholas Fidelman, MD, et al 8. C-1 - " Clinical impact of unsuccessful subcutaneous administration of octreotide LAR instead of intramuscular administration in patients living with metastatic neuroendocrine tumors" Retrospective study by Dr. Krishnan and Dr. Loree out of Vancouver BC 7. O-5 - " Chromogranin A as Surveillance biomarker in Patients with cARcinoids (CASPAR)" Study by Dr. Halfdanarson, et al 6. C-55 - " Association of Long-Term PPI Use With Low-Risk Gastric Neuroendocrine Tumor" Oral presentation by Taymeyah Al-Toubah, MPH, and Jonathan Strosberg, MD 5. C-47 - " Surgical Cytoreduction vs Systemic therapy in Patients with Metastatic Gastroenteropancreatic Neuroendocrine Tumors (GEP-NETS): NCDB Analysis " Abstract from Dr. Mohamed et al, Case Western Reserve University, Cleveland Ohio 4.a. C-5 - "A Phase 2 Clinical Trial of Cabozantinib in Patients with Unresectable and Progressive Metastatic Pheochromocytoma or Paraganglioma: The NATALIE Trial" Dr. Camilo Jimenez from MD Anderson Cancer Center 4.b. C-22 - " Phase 2 Trial of Lu-177-DOTATATE in Metastatic or Inoperable Pheochromocytoma/Paraganglioma: Interim Analysis Results " NIH Trial led by Dr. Frank Lin 3.a. O-9 - " Prevalence of Clonal Hematopoiesis (CH) in Neuroendocrine Tumor (NET) Patients Prior to Lutetium 177 Dotatate (Lu177): A Prospective Study " Mohamad Bassam Sonbol et al 3.b. C-32 - " Myelodysplasia and Leukemia Instances After PRRT: Experience From a Tertiary Institution" Nikolaos Trikalinos, MD et al 2.a. C-11 - " Transformation of Low-Intermediate Grade Neuroendocrine Tumors into High Grade Morphology" Dr. McGlothlin and Dr. Halfdanarson at Mayo Clinic 2.b. C-48 - " Predictors of Low-to-High Grade Progression in Pancreatic Neuroendocrine Tumors" Poster by Stephanie Wang and Dr. Emily Bergsland at UCSF 1.a. C-14 - " Cabozantinib as Salvage Therapy for Well Differentiated Grade 3 Neuroendocrine Tumors (G3 NETs)" Rylie Schnell and Dr. Halfdanarson, Mayo Clinic Comprehensive Cancer Center 1.b. C-3 - " Real-World Evidence of Lenvatinib Use for Treatment of Metastatic Neuroendocrine Neoplasms" Joao Paulo Solar Vasconcelos et al ABOUT NANETS The North American Neuroendocrine Tumor Society (NANETS) provides NET medical educational programming designed exclusively for medical professionals. While our Podcast only features 10 presentations from the NANETS October 4-6, 2023 Symposium, there are many more noteworthy abstracts found (or listed) here: NANETS Abstracts Library 2023 NANETS Abstracts Booklet While NANETS does not provide direct patient education, patients may help further NET education of medical professionals by sharing the organization's educational meetings and NET guidelines with their providers. RESOURCES LISTEN Previous NANETS Highlights Podcast CLINICAL TRIAL INFORMATION NET Retreat Trial Information 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

<< 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: https://www.youtube.com/watch?v=21HKeWI0d3g NET Patient Dorinda shares her NET Journey https://www.youtube.com/watch?v=Mww9tKWZxfQ "Focus on Lung Carcinoid Tumors" with Dr. Robert Ramirez https://www.youtube.com/watch?v=STkKpCVNtXo "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

<< Go back to the Podcast page EPISODE 11: PATHOLOGY FOR NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE How do you understand your pathology report? What is tumor grade, differentiation, mitotic index, and ki67? How do you get a second opinion on your pathology? NET expert and pathologist Dr. Sue Chang of City of Hope answers ten common questions about pathology for neuroendocrine tumors. Dr. Chang defines important keywords to help you understand your pathology report which is instrumental in guiding treatment decisions. MEET DR. SUE CHANG Sue Chang, M.D., is an assistant clinical professor and interim chief of the Division of Anatomic Pathology in the Department of Pathology . Dr. Chang graduated cum laude from Harvard University in Cambridge, Massachusetts, and went on to receive her medical doctorate from New York Medical College in Valhalla, New York. Later, she completed an anatomical/clinical pathology residency at UCLA Health, where she was a chief resident and a resident informaticist. She furthered her training with a cytopathology fellowship at UCLA Health and a surgical pathology fellowship at Brigham and Women's Hospital in Boston. Board certified in anatomic pathology, clinical pathology, cytopathology and clinical informatics, Dr. Chang is the recipient of many honors and awards. She has published several articles in the peer reviewed literature, and has been invited to present her work nationally. Dr. Chang's professional interests include thyroid pathology and pathology informatics. She is active in the College of American Pathologists, currently serving as the chair for the Professional and Community Engagement Committee. She has written several blog posts and participates in patient-facing informational panels, with the goal of increasing public awareness and knowledge of pathology reports and laboratory testing. In her free time, she enjoys collecting rare and vintage medical books, reading historical fiction, karaoke and home gardening. TOP 10 PATHOLOGY QUESTIONS 1. How do I find and understand my pathology report? What should I pay attention to in my pathology report? 2. What type of staining should be done for NET tumors? 3. How does the tumor location play a role in what testing a pathologist might do? 4. What is tumor grade, why is it important, and how is that determined? How is grade different from stage? 5. What is ki67? How reliable is this? 6. What is mitosis or mitotic index? 7. What is differentiation and how do you decide this? Is it ever ambiguous? How are poorly differentiated tumors different from other tumors? 8. What do typical and atypical mean and when might we see this? 9. Can there be different grades within the same tumor or between multiple tumors? How do I understand a pathology report that showed mixed neuroendocrine neoplasms? 10. Should I get a second opinion with my pathology? If so, how is that done? Also, how long are pathology specimens typically stored? ADDITIONAL RESOURCES https://www.youtube.com/watch?v=VkgoByozjX0 "Your Pathologist & Your Pathology Report" with Dr. Chang and Dr. Li Click here for another helpful resource on how to read your pathology report. 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

<< Go back to the Podcast page EPISODE 49 - Understanding Carcinoid Syndrome & GLP-1 Drugs in Neuroendocrine Tumors Download a Transcript of this Episode >>> ABOUT THIS EPISODE Carcinoid syndrome can be confusing and often difficult to diagnose. In this episode, Dr. Joseph Dillon , Endocrinologist and Director of the University of Iowa Neuroendocrine Multidisciplinary Tumor Clinic, explains what carcinoid syndrome is, how it’s diagnosed, and the various ways it can be treated. He highlights key symptoms, testing, and treatment approaches—including somatostatin analogs and telotristat—and discusses how to distinguish carcinoid syndrome from other causes of diarrhea and flushing. In the second half of the episode, Dr. Dillon shares insights from his separate line of research on GLP-1 receptor agonist weight-loss drugs (such as Ozempic® and Mounjaro®) and their potential implications for neuroendocrine tumor patients. (Note: this topic is unrelated to carcinoid syndrome.) MEET DR. JOSEPH DILLON Dr. Dillon is a Professor of Medicine in the Division of Endocrinology at the University of Iowa Hospitals and Clinics. He directs the University of Iowa Neuroendocrine Multidisciplinary Tumor Clinic. This was the first and only US NET Clinic to be recognized as a Center of Excellence by the European NET Society. He is also the Director of the PheoPara Alliance Center of Excellence at University of Iowa. His clinical practice is entirely focused on the care of people with neuroendocrine tumors, both carcinoid type and paraganglioma. He has participated in clinical trials and publications related to diagnostic and therapeutic nuclear agents and drug therapies in this population. Prior to focusing on NET he made important discoveries in the field of GLP-1 which are now becoming of importance to NET patients taking popular weight loss drugs. TOP TEN QUESTIONS: What is carcinoid syndrome? Who is affected by carcinoid syndrome? How does someone know if they have carcinoid syndrome? 3.What are the tests for carcinoid syndrome? How is carcinoid syndrome distinguished from other causes of my symptoms? *Could the tests be negative but someone still have carcinoid syndrome? Can someone have no evidence of neuroendocrine tumors and still have carcinoid syndrome? For those who have carcinoid syndrome, what additional tests should they have? Why should carcinoid syndrome be treated? What are the possible issues if it is not treated? How is carcinoid syndrome treated? *What is on the horizon for carcinoid syndrome treatment? Can carcinoid syndrome be prevented or detected early? Is there anything people can do to prevent or lessen carcinoid syndrome symptoms? Are there any factors that worsen carcinoid syndrome such as age, weight or other diseases? You recently published a study discussing possible risks of using certain weight loss drugs in people with neuroendocrine cancer. Could you tell us more about this study? What was the drug and what did you find? What does it mean? What do you want the NET patient community to understand about your recent findings? RESOURCES WATCH Educational Videos on Diarrhea Watch Dr. Dillon’s video (3:41min) - " How Do GLP-1 Agents Factor Into Neuroendocrine Tumor Care Strategies?" (Nov 5, 2025) LISTEN EXPLORE Carcinoid Heart Disease Resources Somatostatin Analogue (SSA) Resources Xermelo Resources Paltusotine in Carcinoid Syndrome Clinical Trial READ Shilyansky J. et al. (2025). " GLP-1R agonist promotes proliferation of neuroendocrine neoplasm cells expressing GLP-1 receptors " Download Article >>> DISCLAIMER The Neuroendocrine Cancer Foundation 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 the Neuroendocrine Cancer Foundation. Please contact your medical team with questions or concerns about your individual care or treatment. THANK YOU TO OUR SPONSORS

<< Go back to the Podcast page EPISODE 27: WHAT TO KNOW ABOUT NEUROENDOCRINE TUMOR LIVER METASTASES Download the transcript here: LACNETS Podcast Episode 27 Transcript .pdf Download PDF • 206KB 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 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 What is liver NETs? How often do NETs spread? Is it expected that NETs will eventually spread? 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? 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? How do you determine if surgery is an option? What is involved in evaluating metastases? What scans or labs are needed? How do you decide what the “tumor burden” is? 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? How does one decide between surgery versus other options? How often can surgery or other treatments be done? How safe is liver surgery? How do you approach surgery for someone with liver tumors who also has tumors in the tail versus the head of the pancreas? When someone has had a Whipple surgery and later is found to have tumors in the liver, what are the options? What advances in the field are you most excited about? RESOURCES LACNETS Surgery Resources WATCH: LACNETS Surgery Playlist 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

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<< Go back to the Podcast page EPISODE 32: FOCUS ON SOMATOSTATIN ANALOGUES (SSAs) Download a Transcript of this Episode >>> ABOUT THIS EPISODE 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 Un iversity 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) H ow 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? RESOURCES READ Lanreotide + Octreotide Resources LACNETS Blog Post - "A Focus on Somatostatin Analogs (Your Monthly Shots)" LACNETS Blog Post - "The Shot" LACNETS Blog Post - "Practical Tips for Patients on the Shot Somatostatin Analog" Somatostatin Analogue (SSA) Clinical Trials 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

<< Go back to the Podcast page EPISODE 35: NEN TREATMENTS: FOCUS ON CHEMOTHERAPY Download a Transcript of this Episode >>> 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: What is chemotherapy? How does it work? What are the chemotherapy drugs used for neuroendocrine cancer? When are they used? Which neuroendocrine cancers are they used for? How does chemotherapy differ from other treatments such as SSAs or targeted therapies (everolimus, sunitinib, cabozantinib)? 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? Would taking chemotherapy cause someone to be immunocompromised? When in one’s neuroendocrine journey might you recommend chemotherapy? Where does it fall in sequencing? How do you decide which chemotherapy medication to recommend? Can they be stopped and restarted? Can they be repeated? Can you take more than one drug in the category? Can they be taken in combination with another drug? Does taking chemotherapy preclude someone from getting another treatment in the future such as Lutathera PRRT or a clinical trial of alpha PRRT? What do you see as the future of chemotherapy in neuroendocrine cancer treatment? RESOURCES Clinical trials mentioned in this episode: ComPareNET: Lu-177 DOTATATE vs CAPTEM in Advanced pNETs Lu-177 DOTATATE vs Everolimus in Lung NETs Antibody Drug Conjugate ADCT-701 in Neuroendocrine Tumors and Carcinomas For more information on other treatments, check out additional LACNETS podcast episodes on other types of treatments and specific types of NET (pancreatic NET, small bowel NET, lung NET, hindgut and appendix). 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

<< Go Back to NCF Events Page “ Luncheon With The Experts ” is a recurring educational outreach series (previously hosted by the Carcinoid Cancer Foundation) aimed at patients, caregivers, and the broader neuroendocrine cancer community. The sessions are hosted by Rain Bennett. The series features medical specialists — oncologists, surgeons, researchers, and other clinical experts — in neuroendocrine cancer and answer audience questions live via chat. Programs are typically delivered live (over Facebook Live and YouTube Live ) at noon Eastern Time, allowing participants to join during their lunch break. Live sessions are recorded and will be available afterward. ABOUT JASON S. STARR, D.O. Hematologist/Oncologist Mayo Clinic Comprehensive Cancer Center Dr. Starr grew up in South Florida and earned his medical degree at Lake Erie College of Osteopathic Medicine in Bradenton, Florida. He did his training at Mayo Clinic School of Graduate Medical Education in Jacksonville, where he completed his internship and residency in internal medicine, followed by a hematology/oncology fellowship. Dr. Starr has developed an expertise in treating gastrointestinal malignancies and has co-authored papers and book chapters on the subject. He has a special interest in neuroendocrine tumors and is committed to advancing the field through clinical research, namely through the development and enrollment of clinical trials. Dr. Starr is also passionate about education and is integrally involved with fellow education and well-being. He is board certified in internal medicine, hematology, and oncology. "The greatest joy of my career is the interaction and relationships I am able to have with my patients," says Dr. Starr. In his free time he enjoys and values spending time with his wife and children. He also enjoys exercise for fitness and stress relief. Dr. Starr is proud of his Mayo roots and feels strongly about Mayo Clinic's conviction to hope, faith, and science. HOST The sessions are hosted by Rain Bennett , a two-time Emmy-nominated filmmaker, author, and experienced host who produces and leads live conversations on behalf of the Neuroendocrine Cancer Foundation. Bennett has been involved with the neuroendocrine cancer community as a longtime filmmaker and supporter, using his storytelling and interview skills to bring expert perspectives to patients and caregivers. THANKS TO OUR SPONSORS The opinions expressed by the guest presenters, as well as the questions asked by the audience, have not been created or suggested by NCF or the sponsors of this program. NCF does not endorse or promote any of the views, opinions or information provided in this presentation. Audience members should not rely solely on the opinions or information expressed by the guest presenter and should seek guidance and direction from their own medical advisors regarding any choices they make about their health or treatments. << Go Back to NCF Events Page

<< Go back to the Podcast page EPISODE 2: DIARRHEA & NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE For our second episode, NET expert and gastroenterologist Dr. David Metz answers the top 10 GI questions for NETs. Dr. Metz addresses diarrhea, diet, the difference between carcinoid tumor vs. carcinoid syndrome, and effective symptom management. MEET DR. DAVID C. METZ 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 What is the difference between carcinoid syndrome and carcinoid tumor? What are the most common causes of diarrhea? How do I know if my diarrhea is from NET, medication, diet, or another reason? (What is the difference between diarrhea and fat-absorption diarrhea?") How do I know if diarrhea is part of carcinoid syndrome or not? Discuss cramping, bloating, and abdominal pain. Is this part of carcinoid syndrome? (How do I know if these are from the tumor, treatment, or something else?) Why do they take out the gallbladder and what effect does this have on GI symptoms? Are there other syndromes besides carcinoid syndrome that cause diarrhea? How might my doctor evaluate my diarrhea? When should someone have EGD, colonoscopy, and capsule endoscopy and how might it affect symptom management? What do I do to control my diarrhea? What treatment/diet/meds would help prevent chronic cramping, bloating, loud gurgling of GI tract for a midgut patient on SSAs ? What is the best diet for diarrhea? 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. THANKS TO OUR SPONSORS

<< Go back to the Podcast page EPISODE 5: TREATMENT FOR NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE What are the current treatment options for NETs? How do I know what treatments I should be on? In our fifth episode, NET expert and Medical Oncologist Dr. Randy Hecht of UCLA Health answers ten common questions about current NET treatment options (including lanreotide, octreotide, everolimus, and PRRT), as well as future treatment options. MEET DR. RANDY HECHT Dr. Hecht is a Professor of Clinical Medicine in the David Geffen School of Medicine at UCLA School of Medicine. He holds the Carol and Saul Rosenzweig Chair for Cancer Therapies Development and is the Director of the UCLA Gastrointestinal Oncology Program. Dr. Hecht attended medical school at Eastern Virginia Medical School. He took his internal medicine residency at Northwestern and completed fellowships in gastroenterology research at the University of Chicago, and in gastroenterology and medical oncology at UCLA. Dr. Hecht is an internationally known clinical and translational researcher in the field of gastrointestinal cancers. He has published widely on the molecular biology, early detection, and treatment of gastrointestinal malignancies. He has lead and is currently directing small trials with new molecules as well as large international randomized trials. Current ongoing research includes preclinical models of therapy with biological agents, early studies with gene therapy vectors and tyrosine kinase inhibitors, and leading phase II and phase III trials with novel agents. TOP 10 GI QUESTIONS 1. Do all NET patients need to be on lanreotide or octreotide? What’s the difference between lanreotide and octreotide? 2. How do I know what treatments I should be on? 3. My doctor has recommended I take everolimus (afinitor) or CAPTEM. What is the difference and how would I make a decision? 4. My doctor has recommended I take everolimus (afinitor) or PRRT. How would I make that decision? 5. Once I have had PRRT, what would I do next if the tumor progresses? 6. How would I find out what new treatments are on the horizon for NET? 7. Would there be any treatments that negate future choices of treatment options or clinical trials? 8. What does it mean if I have bone mets? (Is my prognosis worse? Does it mean my tumors are getting worse?) 9. If you do not have Somatostatin receptors, should you still have the Gallium DOTATATE scan and if not, what tests/scans do you recommend? 10. Which 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? 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. THANKS TO OUR SPONSORS