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SORENTO™: Subcutaneous Octreotide for GEP-NETs (CAM2029) << Back SORENTO ™ - A Trial to Assess Efficacy and Safety of Octreotide Subcutaneous Depot in Patients With GEP-NETs CLINICALTRIALS.GOV IDENTIFIER: NCT05050942 DRUG/TREATMENT: CAM2029, octreotide LAR, lanreotide ATG PHASE: 3 STATUS: Recruiting SPONSOR: Camurus AB https://www.youtube.com/watch?v=9lKvu6-J4-g Dr. Simron Singh Discusses the SORENTO™ Trial DESCRIPTION: Camurus is sponsoring a phase 3 study to compare the effectiveness and safety of CAM2029 to octreotide LAR or lanreotide ATG in patients with advanced, well-differentiated GEP-NET. Patients who experience progressive disease in the randomized part of the study may proceed to an open-label extension part with intensified treatment with CAM2029. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. CONTACT: Camurus AB EMAIL: medicalinfo@camurus.com PHONE: +46 46 286 57 30 Principal Investigator: Simron Singh, MD, MPH Odette Cancer Centre, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada

Lu-177 DOTATATE + Sunitinib in PNETs << Back Testing the Addition of Sunitinib Malate to Lutetium Lu 177 Dotatate (Lutathera) in Pancreatic Neuroendocrine Tumors IDENTIFIER ( ClinicalTrials.gov ) : NCT05687123 DRUG/TREATMENT : Lu177 dotatate + sunitinib study PHASE : 1 STATUS : Recruiting SPONSOR : National Cancer Institute (NCI) DESCRIPTION: This phase I trial tests the safety, side effects, and dosimetry of sunitinib malate in combination with lutetium Lu 177 dotatate in treating patients with pancreatic neuroendocrine tumors. Sunitinib malate is in a class of medications called kinase inhibitors and a form of targeted therapy that blocks the action of abnormal proteins called VEGFRs that signal tumor cells to multiply. This helps stop or slow the spread of tumor cells. Radioactive drugs, such as lutetium Lu 177 dotatate, may carry radiation directly to tumor cells and not harm normal cells. It is also a form of targeted therapy because it works by attaching itself to specific molecules (receptors) on the surface of tumor cells, known as somatostatin receptors, so that radiation can be delivered directly to the tumor cells and kill them. Giving sunitinib malate and lutetium Lu 177 dotatate in combination may be safer and more effective in treating pancreatic neuroendocrine tumors than giving either drug alone. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. CONTACT : Principal Investigator: Nikolaos Trikalinos,Yale University Cancer Center LAO RELATED RESOURCES Clinical Trials Using Lutetium Lu 177 Dotatate - NCI

< Back to the upcoming events page WATCH THE RECORDING Celebrate NET Cancer Day at the LACNETS NET Cancer Day Symposium in Santa Monica, California on Saturday, November 9th from 8:30 am - 3:30 pm. ABOUT Hear presentations from local NET experts and stories from those in the neuroendocrine cancer community. Learn about the latest in surgery, medical treatments, PRRT, symptom management, and clinical trials. Ask questions during the live question and answer sessions. Find out how you can spread awareness about neuroendocrine cancer. Show how you live well with Neuroendocrine Cancer in our "Show & Tell" Video Slideshow (will be played during our reception). Post-Event Ice Cream Social There is no cost to attend. This event is made possible by the generosity of donors and sponsors. This event will not be broadcast. LOCATION Santa Monica Bay Woman's Club 1210 4th St, Santa Monica, CA 90401 Parking will be fully validated at SP+ Parking Garage Structure 1 at 1234 4th St, Santa Monica, CA. AGENDA *Subject to change. Please check back closer to the event for the most accurate agenda. Time Topic Speaker 8:30 - 9 AM Registration & Breakfast 9 - 9:10 AM Welcome LACNETS Team 9:10 - 9:20 AM A NET Impact Story A NET Patient 9:20 - 9:35 AM A NET Surgeon's Perspective on What to Ask Your Surgeon & How to Prepare for Surgery Alexandra Gangi, MD, Surgical Oncologist, Cedars-Sinai 9:35 - 9:50 AM Alpha vs Beta PRRT: Which is for me? Martin Auerbach, MD, Nuclear Medicine, UCLA 9:50 - 10:20 AM Q&A Alexandra Gangi, MD, Surgical Oncologist, Cedars-Sinai & Martin Auerbach, MD, Nuclear Medicine, UCLA 10:20 - 10:50 AM Break 10:50 - 10:55 AM A NET Impact Story A NET Caregiver 10:55 - 11:15 AM The Latest in NET Medical Therapies Andrew Hendifar, MD, Medical Oncologist, Cedars-Sinai 11:15 - 11:35 AM The Endocrine in Neuroendocrine Run Yu, MD, Endocrinologist, UCLA 11:35 - 11:50 AM Liver Directed Therapy for Neuroendocrine Liver Tumors H. Gabriel Lipshutz MD, Interventional Radiologist, Cedars-Sinai 11:50 AM - 12:30 PM Q&A All Faculty (Moderated by Lisa Yen) 12:30 - 1:30 PM Lunch & Networking 1:30 - 2:05 PM The Future of NETs: Evolving Treatments & Clinical Trials Jaydira Del Rivero, MD, Medical Oncologist, Endocrinologist, National Cancer Institute, National Institutes of Health 2:05 - 2:25 PM Spreading Awareness Globally: INCA's Think NENs Stephanie Alband, INCA President & PPA Executive Director 2:25 - 2:35 PM Let's Talk About NETs: How YOU Can Spread Awareness Heather Davis, LACNETS Associate Director of Advocacy & Outreach 2:35 - 3:00 PM Music Heals Drum Healing with John Fitzgerald 3:05 - 3:15 PM Closing LACNETS Team 3:15 - 4:30 PM Networking Reception with Show & Tell Slideshow MODERATORS : Andrew Hendifar, MD, & Lisa Yen, Director of Programs and Outreach SPEAKERS: ALEXANDRA GANGI, MD Surgical Oncologist, Cedars-Sinai Medical Center 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. ANDREW HENDIFAR, MD Medical Oncologist, Cedars-Sinai Medical Center The current research focus of Andrew Hendifar, MD, is on developing new therapies for pancreatic cancer and neuroendocrine tumors. Dr. Hendifar has helped form multidisciplinary teams that specialize in the treatments of pancreatic cancer, and carcinoid and neuroendocrine tumors. Dr. Hendifar is the primary investigator for several groundbreaking therapies, including radioimmunotherapy for neuroendocrine tumors, anti-inflammatory therapy for pancreatic cancer and novel approaches to cancer cachexia. His national roles include SWOG GI Committee Member and a member of NIH Neuroendocrine Tumor Task Force. He also serves as the steering committee member for the Precision Promise Consortium and chairs the associated Supportive Care Committee. At Cedars-Sinai, he leads the Gastrointestinal Disease Research Group and is the founding Director of the Hematology and Oncology Fellowship Program. MARTIN AUERBACH, MD Nuclear Medicine, UCLA Dr. Allen-Auerbach is the Medical Director of UCLA Nuclear Medicine and Clinical Professor in Nuclear Medicine, Division of Pharmacology, at the David Geffen School of Medicine at UCLA. Apart from serving as attending physician in Nuclear Medicine, active research includes clinical studies investigating the role of molecular imaging with PET/CT to gain insights into malignant disease processes and as well as applications of Nuclear Medicine for the treatment of cancer. RUN YU, MD, PhD Endocrinologist, UCLA Run Yu, MD, PhD, received his MD degree from Peking Union Medical College in Beijing and his PhD degree in pharmacology from University of Rochester in New York. Dr. Yu completed an endocrine research fellowship, an internal medicine residency, and a clinical endocrinology fellowship at Cedars-Sinai Medical Center. Dr. Yu’s clinical and research interests include diabetes, thyroid, and endocrine tumors and syndromes. Dr. Yu enjoys describing novel clinical findings in endocrinology. H. GABRIEL LIPSHUTZ, MD Interventional Radiologist Cedars-Sinai Medical Center H. Gabriel Lipshutz, MD is a board-certified, fellowship-trained vascular and interventional radiologist with the Cedars-Sinai S. Mark Taper Foundation Imaging Center. Dr. Lipshutz performs all peripheral endovascular and interventional procedures including embolizations and minimally invasive oncological treatments (chemoembolization, Y-90 radioembolization, RFA, cryoablation, microwave ablation, and irreversible electroporation (IRE). His responsibilities include consultation and treatment of outpatients and inpatients, including the evaluation of patients in the IR outpatient clinic. After earning his bachelor's degree from Wesleyan University, Dr. Lipshutz earned his medical degree from the University of California, San Francisco. He completed his internship in internal medicine at the University of Washington, his radiology residency at the Oregon Health and Sciences University, and his fellowship in interventional radiology at UCLA. JAYDIRA DEL RIVERO, MD Medical Oncologist & Endocrinologist National Cancer Institute, National Institutes of Health Dr. Del Rivero earned her medical degree from the University of Veracruz in Veracruz, Mexico and completed her internal medicine residency at Woodhull Medical and Mental Health Center/NYU-Langone Medical Center. Dr. Del Rivero completed a fellowship in Endocrinology, Diabetes and Metabolism at The Inter-Institute Endocrinology Training Program (IETP) at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), The National Institute of Child Health and Human Development (NICHD), and The National Institute of Dental and Craniofacial Research (NIDCR) where she was part of a research team developing clinical trials for pheochromocytoma and paraganglioma. She then joined as Assistant Professor at the Montefiore Einstein Center for Cancer Care (MECCC) where she specialized in endocrine oncology involving thyroid cancer, parathyroid and adrenal tumors, and clinical research for gastroenteropancreatic neuroendocrine tumors. She subsequently completed a second fellowship in medical oncology at the National Cancer Institute (NCI) with a research focus on endocrine malignancies. Dr. Del Rivero is board certified in Internal Medicine, Endocrinology, Diabetes and Metabolism and Medical Oncology. Dr. Del Rivero is a Physician Scientist in the Developmental Therapeutics Branch. She is the Principal Investigator of the Natural History Study for Neuroendocrine Neoplasm and Adrenocortical Cancer to provide the basis of further development of therapeutic interventions, prevention/screening guidelines, endpoints for future clinical trials, and patient reported outcome measures. Dr. Del Rivero’s current efforts is the development of novel treatment approaches and targeted therapies for endocrine malignancies such as advanced gastroenteropancreatic neuroendocrine tumors, adrenocortical cancer and pheochromocytoma/paraganglioma. STEPHANIE ALBAND, MSBA Board President, INCA Executive Director, The Pheo Para Alliance Stephanie Alband, MSBA, joined Pheo Para Alliance in March of 2019. She has over 20 years of experience in the nonprofit industry, with ten years working exclusively for rare disease organizations, including the Huntington’s Disease Society of America and Angioma Alliance. Her experience with her daughter’s rare cancer has helped her better understand and successfully navigate the unique challenges faced by the rare disease community. She currently serves as the President for the International Neuroendocrine Cancer Alliance (INCA) and previously served as Communications Chair and a Member of the Board of Directors. JOHN FITZGERALD Drum Circle Facilitator & Coach Rhythm With a Purpose Before he fell in love with the transformational impact of coaching, and rhythm facilitation, John spent decades as a degreed percussionist performing jazz and classical music, and the amazing music of cultures from around the world. Rhythms, cycles, and improvisation have always been central to his joy and passion, the spontaneous personal expression that is such a vital part of all living cultures, and indeed, all our lives. As the Manager of Recreational Music Activities for Remo Inc., for 23 years, he created relationships with organizations and individuals, educating and advocating for the use of music for wellbeing in every imaginable population through a global network of partnerships, facilitators, and Remo’s distributor network. Presentations, training, and facilitated experiential activities at conferences and symposia were a central part of his work at Remo, and his passion as well. In addition to one on one work with individuals and organizational leaders, John designed and facilitated team-building, communication and leadership workshops for over 20 years. If you are newly diagnosed, or need a refresher on NET terms and basics, we encourage you to watch Dr. Aman Chauhan’s presentation “NETS 101: Overview of NET Terms & Concepts " or Dr. Chandrasekharan’s presentation “Understanding NET Diagnosis.” The opinions expressed by the guest presenters, as well as the questions asked by the audience, have not been created or suggested by LACNETS or the sponsors of this program. LACNETS 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. THANKS TO OUR SPONSORS

<< Go back to the Podcast page EPISODE 46: SPOTLIGHT ON ADVANCED PRACTICE PROVIDERS (NPs & PAs) Download a Transcript of this Episode >>> ABOUT THIS EPISODE Neuroendocrine cancer care typically involves a multidisciplinary team which sometimes involves an Advanced Practice Provider (APP). In this episode, Moffitt Physician Assistant Tiffany Valone clarifies the role of an APP in neuroendocrine cancer. MEET TIFFANY VALONE Tiffany Valone is a Physician Assistant and Manager of the GI and Senior Adult Advanced Practice Providers at Moffitt Cancer Center in Tampa, FL. She started her career at Moffitt in 2006 in GI medical oncology focusing on treating patients with colorectal and pancreaticobiliary cancers. A few years into her career she joined Dr. Jonathan Strosberg to help with his growing neuroendocrine practice. For the past 16 years she has been an integral provider within this multidisciplinary team. She was awarded Moffitt’s Advanced Practice Provider of the Year in 2012 and the North American Neuroendocrine Tumor Society’s AHP/APP of the Year in 2024. She is also a member of Moffitt's APP Professional Clinical Ladder Executive Committee and spearheads Moffitt’s APP Grand Rounds lecture series. She has a passion for teaching and mentoring new providers in the NET field. She has given presentations on NETs and other GI malignancies at both state and national conferences. In her spare time, she enjoys traveling with her husband and three children or relaxing at the beach. TOP TEN QUESTIONS: What is a NP/PA/APP? Are you a doctor? How are you different from or similar to a doctor? How is your role similar to or different from a nurse practitioner? How did you enter the neuroendocrine cancer or NET world? How did you learn about neuroendocrine cancer? Could you be considered a NET expert? What is your role in the neuroendocrine cancer world? What is your role with your medical team? If I go to your institution to see a neuroendocrine cancer expert, how is it determined which provider I will see? If I see you (or another NP/PA), would I also see a doctor? If yes, when/how? If not, why/why not and how does this work? What does a “team approach” mean? Who goes over scan results? Is this something you can do? Who orders my scans and treatments? If I have a question or concern, who do I communicate with and what’s the best way to communicate? How are your recommendations communicated with someone’s local oncologist? What advice do you have for patients when they receive differing opinions? *Bonus: How do you continue to learn and keep up to date with neuroendocrine cancer? What recommendations would you have for patients who would like to encourage their local oncologists or APPs to learn about neuroendocrine cancer? 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 1: NUTRITION FOR NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE For our very first episode, we welcome NET Dietician Meghan Laszlo, MS, RD, CSO of Cedars-Sinai Medical Center. Meghan answers the top 10 NET nutrition questions, covering topics including carcinoid syndrome, prescription enzymes, diarrhea, recommended diet for NET patients, and much more! MEET MEGAN LASZLO Meghan Laszlo is a Registered Dietitian (R.D.) and a Board-Certified Specialist in Oncology Nutrition (C.S.O.) at Cedars Sinai’s Samuel Oschin Cancer Center. As an outpatient dietitian, she provides medical nutrition therapy to patients through nutrition counseling, education, and coordination of care. Meghan is fascinated by the nutritional aspects of gastrointestinal, neuroendocrine, and head and neck cancers and is dedicated to helping patients meet their individualized goals. In October 2019, Meghan gave a presentation for LACNETS titled "Nutrition for NETs." Watch the full video here >> TOP NET NUTRITION QUESTIONS 1. What kind of diet benefits NET patients? 2. Which foods cause carcinoid syndrome symptoms? 3. Which foods make diarrhea better and worse? 4. What kinds of fluids and how much are needed with diarrhea? 5. Which dietary supplements are beneficial for NET patients? 6. What is niacin and why is it important for individuals with carcinoid syndrome? 7. How does fat malabsorption effect digestion? 8. How do I know if the pancreatic enzymes are working? 9. What is small intestinal bacterial overgrowth (SIBO)? 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

Tarlatamab in DLL3-Expressing Tumors Including Neuroendocrine Neoplasms << Back Tarlatamab in Advanced Delta-like 3 (DLL3)-Expressing Tumors Including Neuroendocrine Neoplasms IDENTIFIER ( ClinicalTrials.gov ) : NCT06788938 DRUG/TREATMENT : Tarlatamab PHASE : 2 STATUS : Recruiting SPONSOR : Jonsson Comprehensive Cancer Center https://www.youtube.com/watch?v=HJCZzlD_kq8 Watch Dr. Jonathan Goldman, medical oncologist and clinical trial specialist at UCLA, as he provides an in-depth overview of a new clinical trial investigating tarlatumab, a DLL3-targeted bispecific T-cell engager designed to treat a wide range of neuroendocrine tumors (NETs) and neuroendocrine carcinomas (NECs). DESCRIPTION: This is a Phase II, multi-center “basket” study testing a medication called tarlatamab in people with advanced cancers that show a marker called DLL3. DLL3 is a protein found on the surface of some neuroendocrine and other hard-to-treat tumors. What is Tarlatamab? Tarlatamab is an anti-cancer therapy that helps the immune system find and attack cancer cells. It is already FDA-approved for extensive-stage small cell lung cancer, but its use in other tumors is still considered investigational, meaning researchers are studying how well it works and how safe it is for these additional cancer types. About the Study This trial is being done to learn: How well tarlatamab works in treating DLL3-positive cancers What side effects it may cause How safe and tolerable the treatment is in different types of tumors The study is enrolling people with advanced DLL3-expressing tumors other than small cell lung cancer or neuroendocrine prostate cancer. Participants will receive tarlatamab as long as it is helping and side effects remain manageable. Treatment will continue until the cancer grows, side effects become unacceptable, the patient chooses to stop, or another medical reason requires stopping. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here . CONTACT Contact: CRU Hotline Phone Number: 888-798-0719 Email: istteam@mednet.ucla.edu Study Contact Backup Name: CRU Direct line Phone Number: 310-206-2632 This is a multicenter trial with various locations. Go to the “Contacts and Locations” section of this trial page at ClinicalTrials.gov for site-specific contact information.

NET Testing < Back to Topics Play Video Play Video 18:28 06. NET Testing: The What, When, How and Why (Dr. Namrata Vijayvergia) - 2022 LACNETS Conference Dr. Neena Vijayvergia addresses the what, when, how and why of NET testing. Presenter: Namrata Vijayvergia, MD Medical Oncologist, Fox Chase Cancer Center 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 35:16 "Understanding NET Diagnosis" with Dr. Chandrasekharan • 2024 #LACNETS Patient Conference 2. "Understanding NET Diagnosis" with #Dr.Chandrasekharan 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. < Back to Topics Next Topic >

<< Go back to the Podcast page EPISODE 20: GASTRIC NET, GASTRINOMAS & ZOLLINGER-ELLISON SYNDROME (ZES) Download a Transcript of this Episode >> 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 DR. DAVID C. METZ 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? RESOURCES https://www.youtube.com/watch?v=dVY3Ws3qm0s Patient Story: Zollinger-Ellison Syndrome and Gastrinoma Shaunie shares her experience living with Zollinger-Ellison syndrome and a functioning gastrinoma of the pancreas. READ Consensus Guidelines for the Management and Treatment of Neuroendocrine Tumors The North American Neuroendocrine Tumor Society Consensus Paper on the Surgical Management of Pancreatic Neuroendocrine Tumors The North American Neuroendocrine Tumor Society Consensus Guidelines for Surveillance and Medical Management of Pancreatic Neuroendocrine Tumors Diagnosis of Zollinger-Ellison syndrome in the era of PPIs, faulty gastrin assays, sensitive imaging and limited access to acid secretory testing Diagnosis of the Zollinger–Ellison Syndrome Gastric Neuroendocrine Tumors (Carcinoids) Neuroendocrine Tumors: Reappraisal of Type in Predicting Outcome 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 18: MENTAL HEALTH & NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE What are the common mental health issues associated with NET? How can they be managed? How does NET impact young adults, NET patients and children of NET patients? Health psychologist Dr. Kersting of the Medical College of Wisconsin elaborates on mental health challenges facing NET patients and their loved ones. Hear coping strategies for anxiety, eating and sleeping difficulties, fatigue and depression. Dr. Kersting discusses what you can expect when meeting a mental health professional and why supporting your mental health is an integral part of your overall care. MEET DR. KAREN KERSTING Karen Kersting, PhD, is a licensed clinical psychologist who provides counseling and psychotherapy to patients treated by surgeons in the Division of Surgical Oncology at the Medical College of Wisconsin. She completed an undergraduate degree in Journalism at the University of Wisconsin—Madison, a PhD in Counseling Psychology at Virginia Commonwealth University in Richmond, VA, and a postdoctoral fellowship in clinical health psychology at the Dayton Veterans Administration Medical Center in Dayton, OH. She joined the faculty of MCW in 2016. Dr. Kersting’s research interests include the development and assessment of integrated psychosocial services for people coping with cancer diagnosis and treatment, with an emphasis on patients diagnosed with cancer of the pancreas. Additionally, her work aims to highlight issues related to social determinants of health and Acceptance and Commitment Therapy interventions. TOP 10 QUESTIONS 1. How common are mental health issues in NET patients? What are the most common mental health issues you see in NET and what can be done about it? 2. How does anxiety impact NET patients? Why is it so prevalent in these patients? When do I know I need to reach out for support with my anxiety? What does treatment for anxiety look like? 3. How does depression impact NET patients? 4. What kind of sleep problems do you see in NET patients? 5. How do you work with patients who have long periods of fatigue? 6. How can a psychologist help people who are struggling to eat after treatment? 7. How can a patient, loved one, or physician tell the difference between a symptom such as fatigue or anxiety caused by NET tumors vs. a psychological trigger? Does it matter? How does one’s mental health impact one’s NET disease or the effectiveness of treatments? 8. Discuss how NET may impact young adult NET patients? How does NET impact young adult children, teenagers, and young children of NET patients? 9. Who should see a psychologist? When should someone see a psychologist? How does one find a psychologist? What should a patient expect when they come for a first visit with a mental health professional such as a psychologist, therapist, social worker or other? 10. What coping strategies or advice do you have for NET patients? What coping strategies or advice for family members or loved ones? RESOURCES READ Acceptance and Commitment Therapy Dr. Kersting's Publications Elephant & Tea Magazine JOIN AYA Neuroendocrine Cancer Group (Young Adult Private Facebook Group) LACNETS RESOURCES Wellness Resources Resources for Children Grief Resources Caregivers 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 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 31: CLINICAL TRIALS: EXPECTATIONS VS. REALITIES (PART I & II) Download a Transcript of Part 1 >> Download a Transcript of Part 2 >> ABOUT THIS EPISODE In this 2-part series, we reprise “Navigating Clinical Trials: Expectations vs Realities” with Taymeyah Al-Toubah. This was previously broadcast on August 19th, 2023, as a LACNETS monthly educational webinar. In Part 1, Taymeyah discusses clinical trial terminology, timeline, questions to ask, and misconceptions. In Part 2, Taymeyah answers questions about logistics and practical aspects of clinical trials, such as costs, response time, and follow-up. She also answers frequently asked questions about PRRT trials, including alpha trials. MEET TAYMEYAH AL-TOUBAH, MPH Taymeyah Al-Toubah is a clinical researcher, currently at Moffitt Cancer Center, who has been in the research field for 10 years. She began her career in 2013 while obtaining her bachelors degrees in biomedical sciences and psychology, working in pediatric and neonatal research at Johns Hopkins All Children’s Hospital. In 2016, she shifted her career focus to oncology, beginning with phase I trials and working in all solid tumors. She completed her Master of Public health in epidemiology in 2017 and focused her graduate thesis on neuroendocrine tumors. In 2018, she switched departments to focus exclusively on NETs. From 2018 – 2023, she was the primary NET coordinator in the GI department, managing all clinical trials while leading the GI team, managing the NET clinic coordination amongst the ancillary departments, and working on all retrospective and non-interventional NET research. She has worked on protocol development, database analysis, and manuscript writing, resulting in over 30 published manuscripts and presented her research at several national and international oncology and NET conferences, with oral abstracts at several ENETS and NANETS conferences. In April 2023, she formally transitioned to a new position as a project manager of the NET program where she will continue to mentor new coordinators, while working on protocol development and writing, manuscript writing, non-interventional clinical trials, and retrospective NET research. One of her first major projects will be to curate and develop a master database of all NET patients seen at her institution that will provide the basis for all future NET research to be published at Moffitt. She is currently on the board of one of the first NET patient advocacy groups in Florida (FLaNET Carcinoid Community), which kicked off alongside the Tampa Regional NANETS meeting in November 2022. She is an active member in NANETS on the Continuing Education and Symposium Planning committees. She plans to dedicate the remainder of her career to this disease and community. Her ultimate plan is to attend medical school, specialize in medical oncology, and continue to serve the academic NET community and patient base as a physician and clinical investigator. RESOURCES READ Glossary: Common Terms in Clinical Trials Navigating Clinical Trials: Expectations vs Realities - Slides from August 19, 2023 LACNETS Educational Event "How to Prepare for Clinical Trials" Info Sheet WATCH https://www.youtube.com/watch?v=CXW71vedhIw 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 6: DECISION-MAKING FOR NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE How do NET experts decide what treatments are right for you? How do I learn about current clinical trials? In our sixth episode, NET expert and medical oncologist Dr. Daneng (Dan) Li of City of Hope answers 10 common questions about decision-making for NETs including finding the primary tumor site, bone mets, tumor grades, and the role of adjuvant therapy. MEET DR. DANENG (DAN) LI Daneng Li, M.D. , is an assistant professor in the Department of Medical Oncology & Therapeutics Research at City of Hope, specializing in treating gastrointestinal cancers. Dr. Li currently leads the liver tumors program and is also the co-director of the Neuroendocrine Tumor Program at City of Hope. Dr. Li earned his undergraduate degree from The Ohio State University in Columbus, Ohio, graduating summa cum laude. He then went on to receive his medical doctorate from Weill Cornell Medical College in New York, before pursuing an internship and residency in internal medicine at New York-Presbyterian Hospital/Weill Cornell Medical Center. He then completed a hematology/oncology fellowship at Memorial Sloan-Kettering Cancer Center in New York City. Board certified in internal medicine and medical oncology, Dr. Li serves on several national committees focused on his specialty tumor types. He has authored several publications in the peer reviewed literature, and has presented his work nationally. TOP 10 QUESTIONS 1. How important is it to find the primary tumor site? How much effort should go into pursuing this? How common is it to have a NET with an unknown primary site? 2. What do you do when someone who has been diagnosed with NET has elevated tumor markers and symptoms but scans show no evidence of disease? 3. What’s the difference between a functional and nonfunctional NET? 4. How are bone mets treated? 5. How concerned would you be with a patient’s bone marrow during PRRT treatment especially if they have bone lesions? 6. Do tumor grades ever change? 7. When would you recommend doing another biopsy? 8. What is the role of adjuvant therapy for NET? 9. When do YOU consider clinical trials for NET patients? 10. How do patients or advocates find out about clinical trials and decide if that’s the best option for them? 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