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  • Episode 34: NET Treatments: Focus on PRRT | NeuroendocrineCancer

    << Go back to the Podcast page EPISODE 34: NET TREATMENTS: FOCUS ON PRRT Download a Transcript of this Episode >>> 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: What is PRRT? How does it work? What is theranostics and what does it mean? What are the terms radiotheranostics, radiopharmaceutical, radioligand therapy, PRRT? How do you determine who is eligible for PRRT? When is PRRT given in one’s treatment journey? How does PRRT differ from other treatments? What are the common side effects of Lutathera? Does Lutathera have long-lasting effects? Would receiving Lutathera affect one’s blood counts? How might Lutathera affect one’s liver function? When, if ever is there concern about liver failure? 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? What precautions do I need to follow? Can I hug my child? Can I pet my dog? Would receiving Lutathera cause someone to be immunocompromised? How to you decide who should get PRRT? What is peritoneal disease and how effective is PRRT with peritoneal disease? How do you assess the response to PRRT? What advances in PRRT are you most excited about? RESOURCES PRRT Clinical Trials PRRT Resources WATCH https://www.youtube.com/watch?v=oSqUgq6QdnM May 2024 LACNETS Educational Event with Dr. Aman Chauhan: "High Grade Neuroendocrine Neoplasms & Small Cell Lung Cancer" 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

  • Neuroendocrine Cancer Support Line | Patient & Caregiver Help | NCF

    Speak with trained support specialists for guidance, resources, and compassionate assistance for neuroendocrine cancer patients and caregivers. Neuroendocrine Cancer Support Line The Neuroendocrine Cancer Foundation is here to help you and those affected by neuroendocrine cancer. If you are looking for more specific information than you have found on our resources page or virtual support offerings, please complete the following questionnaire* so we can provide more personalized support. Please allow us up to three business days to respond. We highly recommend reviewing and completing our NET VITALS tool to learn and share the most critical information about your or your loved one's NET diagnosis. *Please note, all patient information is kept strictly confidential and is only used to provide relevant resources. SUPPORT LINE QUESTIONNAIRE Scroll up after clicking 'submit' 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.

  • 2024 Virtual NET Conference Speakers | LACNETS

    Learn more about the NET experts presenting on various topics during the 2024 LACNETS Neuroendocrine Tumor Patient Conference. 2025 Conference Speakers << Go back to the 2025 Annual Conference Page Overview of Neuroendocrine Cancer What is Neuroendocrine Cancer? Bhavana Konda, MD, MPH Medical Oncologist, Ohio State University Comprehensive Cancer Center (OSUCCC) Dr. Bhavana Konda is a Medical Oncologist with expertise in neuroendocrine tumors and endocrine-related cancers. She leads the Neuroendocrine Tumor and Endocrine Medical Oncology Section at the Ohio State University Comprehensive Cancer Center. Her research is dedicated to advancing treatment options to patients with these rare cancers through innovative clinical trials. Understanding Matters About Biomarkers & Blood Tests Thorvardur Halfdanarson, MD Medical Oncologist, Mayo Clinic Thor R. Halfdanarson, M.D., is a medical oncologist and Professor of Oncology at Mayo Clinic who specializes in the management of patients with neuroendocrine neoplasms, gastrointestinal malignancies and unknown primary malignancies. His specific research interests include the epidemiology, risk factors and treatment of neuroendocrine tumors and neuroendocrine carcinoma and improving outcomes for pancreatic adenocarcinoma and rare types of pancreatic tumors. He is a principal investigator and co-investigator for multiple industry-sponsored and cooperative group clinical trials. Dr. Halfdanarson holds several leadership positions within Mayo Clinic Comprehensive Cancer Center. He is chair of the Hepato-Pancreatico-Biliary Cancer Disease Group and co-chair of the Pancreatic/Neuroendocrine Tumor Board. He is associate medical director of the Cancer Clinical Trials Office in Rochester, Minnesota, co-chair of the Feasibility Committee, and a member of the Clinical Research Leadership Committee. He also represents Mayo Clinic on the Neuroendocrine Tumors Guidelines Panel of the National Comprehensive Cancer Network (NCCN). Dr. Halfdanarson is President Emeritus of the North American Neuroendocrine Tumor Society (NANETS) as well. What Matters About Scans Nadine Mallak, MD Radiologist & Nuclear Medicine, Oregon Health & Science University Nadine Mallak, M.D. is a double boarded Associate Professor of Diagnostic Radiology at OHSU, in the divisions of Body Imaging, and Molecular Imaging & Therapy. She received her M.D. degree from Saint Joseph University Medical School in Beirut, Lebanon, followed by a Diagnostic Radiology residency at Hotel Dieu de France, Beirut. Subsequently, she finished fellowships in Neuroradiology and Abdominal Imaging, and a residency in Nuclear Medicine at the University of Iowa Hospitals and Clinics. Dr. Mallak is the clinical director of the PET/MRI program at OHSU. The scope of her clinical practice encompasses all aspects of molecular imaging and therapy, in addition to abdominal and pelvic imaging with modalities including ultrasound, CT, and MRI. Her research interests focus on molecular and hybrid imaging, particularly for prostate cancer, neuroendocrine tumors and pheochromocytoma/paraganglioma. In addition to her research projects, she’s passionate about education. She was voted by the radiology residents "outstanding teacher of the year" for the year 2019-2020, and by the graduating senior residents “outstanding board reviewer” for the year 2021-2022 In her free time, she enjoys painting, mostly with acrylic and watercolors, reading, hiking, and exploring the gorgeous nature in the Pacific Northwest. What Matters About Symptom Management Vineeth Sukrithan, MD Medical Oncologist, Ohio State University Comprehensive Cancer Center (OSUCCC) 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. Surgery & Local Regional Therapies What Matters About Liver Surgery Julie Hallet, MD, MSc., FRCSC Surgical Oncologist, Sunnybrook Health Sciences Center Dr. Hallet is an Associate Professor of Surgery at the University of Toronto and a Surgical Oncologist with a clinical practice devoted to hepato-biliary, pancreatic and upper gastrointestinal malignancies at the Odette Cancer Centre - Sunnybrook Health Sciences Centre. Her practice further focuses on neuroendocrine tumors as part of the Susan Leslie Multidisciplinary Clinic for Neuroendocrine Tumors, as well as minimally invasive therapies for cancer treatment. She completed general surgery residency and MSc in clinical epidemiology at Université Laval in Québec City, followed by a Surgical Oncology and hepato-pancreatico-biliary clinical fellowship at the University of Toronto, and additional training in advanced minimally invasive surgery at the Institut de recherche contre les cancers de l’appareil digestif (IRCAD) in Strasbourg, France. Dr. Hallet holds leadership roles in National and International societies. Among those roles, she serves as the Vice-Chair of the Hepato-Pancreatico-Biliary Disease Site Group of the Society of Surgical Oncology, the Chair of the Early Career Group the International Hepato-Pancreatico-Biliary Association, and a member of the Guidelines Committee of the North American Neuroendocrine Tumors Society, as well as on the executive committees of the Canadian Society of Surgical Oncology and the Canadian Hepato-Pancreato-Biliary Association. She is a founding member of the Society of Surgical Ergonomics for which she also chairs the Research and Applied Ergonomics Committee. She also is Associate Section Editor for the Annals of Surgical Oncology, and is part of the Editorial Board of HPB, the World Journal of Surgery, and the British Journal of Surgery. Dr. Hallet’s research focuses on health services research to examine processes of care and outcomes in oncology, with a focus on patient-centred and patient-reported outcomes. To support her research, she has received over $10 millions in operating grants, including from the Canadian Institutes of Health Research and the Ontario Institute of Cancer Research. Dr. Hallet has over 200 peer-reviewed publications, including high-impact papers in JAMA Surgery, JAMA Oncology, the Journal of the NCCN, and Annals of Surgery. What Matters About Liver-Directed Therapy Alejandro Gabutti, MD Interventional Radiologist, National Institute of Medical Sciences and Nutrition Salvador Zubirán (INCMNSZ) University Hospital and National Reference Center for Liver Diseases Dr. Alejandro Gabutti, born in southern Mexico and moved to Mexico City for medical school. He received his medical degree from the UNAM (National University of Mexico) in 2008. After a year working as a general doctor in the mountain region of Chiapas, Mexico, he decided to continue his medical education as a Radiologist. By the year 2006 Alejandro was accepted in the INCMNSZ and completed a 4-year radiology program. Since the very beginning during his radiology training Alejandro showed a special interest in the interventional radiology procedures. He successfully completed a two-year interventional radiology fellowship at the INCMNSZ. At the conclusion of his fellowship, Alejandro was hired as part of the INCMNSZ radiology staff. In 2019 Dr. Gabutti moved to Milan Italy and completed a 1-year internship at the Istituto Nazionale dei Tumori, with special emphasis in oncological liver directed therapies. By his return to Mexico, Alejandro continues working as an Interventional Radiologist at the INCMSNZ, became the Interventional Radiology program professor (UNAM) and keeps working to improve liver malignancies imaging and treatments. Expert Panel: What Matters Most in Making Decisions About Surgery & Local Regional Therapies Daneng Li, MD Medical Oncologist, City of Hope Daneng Li, M.D., is an associate professor in the Department of Medical Oncology & Therapeutics Research at City of Hope Comprehensive Cancer Center, 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 embraces a multidisciplinary approach to treatment of patients with neuroendocrine tumors. He leads several clinical trials focused on improving outcomes for patients with NETs and works closely with scientists in the development of the next generation of novel therapeutics. Nationally, he has served on several NET committees including the NANETS Research Committee, NANETS Continuing Medical Education Committee, and the Patient-Physician Communication Task Force for the Healing NET Foundation, allowing him to work closely to support NET patient advocacy programs. For all his efforts, he was honored as a recipient of the inaugural 40 Under 40 in Cancer Award during the American Society of Clinical Oncology annual meeting in 2018. Callisia Clarke, MD Surgical Oncologist, Medical College of Wisconsin Dr. Clarke is Chief of Surgical Oncology and Associate Professor of Surgery at the Medical College of Wisconsin with a focus on tumors of the upper gastrointestinal tract, sarcomas, melanomas and regional therapies for advanced malignancies. She specializes in hepato-pancreatic-biliary malignancies, primary and metastatic neuroendocrine tumors, melanoma and sarcoma. Her research efforts focus on personalized cancer care and targeted approaches in pancreatic neuroendocrine tumors. Dr. Clarke also serves on the Executive Committee of the Association for Academic Surgery and is the Chair of the North American Neuroendocrine Tumor Society (NANETS) Mentoring and Early Career Development Committee. President Biden recently announced she will be appointed as a Member of the National Cancer Advisory Board. Dr. Clarke will play a key role in guiding the Director of the National Cancer Institute in setting the course for the national cancer research program and help advance breakthroughs to prevent, detect, and treat diseases like cancer. Osman Ahmed, MD Interventional Radiologist, University of Chicago 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. William C. Chen, MD Radiation Oncologist, University of California San Francisco Dr. William C. Chen is a radiation oncologist and translational researcher. Dr. Chen received his undergraduate degree from Johns Hopkins University and completed medical school at the University of California, San Francisco. He completed his internal medicine preliminary internship at Kaiser San Francisco, followed by a residency in Radiation Oncology at UCSF. He is a Chan Zuckerburg Biohub Physician Scientist Fellow and a Helen Diller Family Cancer Center Physician Scientist Program in Clinical Oncology (PSPCO) Fellow. His research focuses on biomarker development, informatics, and clinical trial development with a focus on meningiomas and other malignancies of the central nervous system and beyond. Medical Management & Sequencing Treatments What Matters About Systemic Treatments Jennifer Chan, MD, MPH Medical Oncologist, 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. Dr. Chan focuses her clinical practice on the care of patients with neuroendocrine tumors and gastrointestinal cancers. She 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. Dr. Chan 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. She is a past chair of the Guidelines Committee of the North American Neuroendocrine Tumor Society (NANETS) and President of NANETS. Dr. Chan 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. What Matters About PRRT: What is PRRT & How Does It Work? Cecilia Carreras Velázquez Nuclear Medicine, Hospital Ángeles Lomas Dr. Cecilia Carreras Velázquez is a board-certified specialist in Nuclear Medicine and Molecular Imaging, based in Mexico City. Graduated with honors from Centro Médico ABC (UNAM) in 2010 and completed a fellowship in Molecular Imaging in 2011. From 2012 to 2024, she served as Head of the Nuclear Medicine and PET/CT Department at Hospital Angeles Lomas, where she led the integration of advanced technology and the expansion of radionuclide-based diagnostic and therapeutic services. Pioneer in Mexico in implementing Lutetium-177 therapy for patients with Neuroendocrine Tumors and metastatic prostate cancer. In June 2024, Dr. Carreras assumed the position of Medical Director of Nuclear Medicine at the National Center for Radiology and Imaging within the Angeles Health System Hospitals in Mexico. Dr. Carreras has international experience, having collaborated with the research team at PET-Zentrum of Zentralklinik Bad Berka in Germany, focused on radionuclide therapies for neuroendocrine tumors. Since 2020, she has been a member of the Patient Safety and Quality Committee at Hospital Angeles Lomas, and in 2022, she was appointed Mexico Ambassador for the Oncidium Foundation, advocating for innovations in cancer treatment through nuclear medicine. For over a decade, she has actively participated in educational initiatives, specialty dissemination efforts, and patient-focused forums to enhance understanding and access to nuclear medicine advancements. What Matters About PRRT: Preventing and Managing Toxicities & Latest Advances Aman Chauhan, MD Medical Oncologist, University of Miami Health System Aman Chauhan, MD, earned his medical degree from the Kasturba Medical College in Manipal, Karnataka, India, followed by a dual residency in internal medicine and pediatrics at Louisiana State University in New Orleans. Dr. Chauhan completed his fellowship in hematology and oncology at the University of Kentucky, especially focusing on neuroendocrine tumor (NETs). Additionally, Dr. Chauhan completed a Cancer Therapy Evaluation Program (CTEP) physician externship at the National Cancer institute (NCI) that focused on designing clinical trials and clinical research projects. His clinical interests include treating NETs, including carcinoid tumors, high-grade neuroendocrine carcinomas, and small and large cell neuroendocrine carcinoma. Dr Chauhan leads the University of Miami Neuroendocrine Cancer Program and co-leads Sylvester Theranostics Drug Development Program. He is national principal investigator on several investigator initiated neuroendocrine cancer clinical trials. He has authored over 70 scientific publications and book chapters and has received a career development award from NCI CTEP. Dr Chauhan also serves on AJCC and ASCO NET guideline committees and is an active member of NANETS communication committee. Dr. Chauhan is board certified in internal medicine and medical oncology. He is a member of the American Society of Clinical Oncology as well as the American Association of Cancer Research and the North American Neuroendocrine Tumor Society. What Matters About Clinical Trials Pamela Kunz, MD Medical Oncologist, Yale Medicine 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 past President 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. Dr. Kunz 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. Dr. Kunz was awarded ‘Woman Oncologist of the Year’ by Women Leaders in Oncology for her work in promoting gender equity and received the 2024 'Distinguished Mentor Award' by the North American Neuroendocrine Tumor Society. X @PamelaKunzMD Expert Panel: What Matters Most in Making Decisions About Systemic Therapies & Sequencing Treatments J. Randolph Hecht, MD Medical Oncologist, UCLA Health 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. Alexandra Gangi, MD Division Director of Surgical Oncology, 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 Division Director of Surgical Oncology and 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. Erik Mittra, MD, PhD Nuclear Medicine, Oregon Health & Science University Dr. Mittra received his medical and graduate training at Stony Brook University and subsequently completed a Nuclear Medicine residency and fellowship at Stanford University. He was faculty at Stanford for many years before moving to Oregon Health & Science University in 2018. Dr. Mittra is involved in all aspects of Nuclear Medicine but theranostics for oncology is of particular interest. His research interests are primarily focused on the clinical translation of novel radioisotopes for imaging and therapy. He is very involved with the Society of Nuclear Medicine and Molecular Imaging (SNMMI), the North American Neuroendocrine Tumor Society (NANETS), and is a prior Medical Director of the Healing NET Foundation (HNF). David B. Zhen, MD Medical Oncologist, Fred Hutch 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 pancreatic 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. Moderators: MARY DONLEVY NCF Board member and NET Patient Advocate Mary Donlevy joined the NCF Board in 2020. She brings the patient perspective as she has been thriving despite living with pancreatic neuroendocrine tumor since 2005. She has been close friends with LACNETS Founder Giovanna Joyce since 2010 and involved with LACNETS since then. Mary has served as a NET CONNECT mentor and Advisory Committee member. She has been actively involved in the monthly meetings and virtual NET support groups. Mary received her Bachelor's Degree in Communications from University of San Diego and has over 10 years of medical and sales training. Her passion is to help those dealing with this difficult diagnosis and still enjoy a very full and active life. She is the mother of four children, two of which are identical twins, born after her cancer diagnosis. Mary enjoys ocean swimming, yoga and traveling with her husband and children in her free time. 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. << Go back to the 2025 Annual Conference Page

  • Episode 16: Top 10 Highlights of the 2022 NANETS Symposium | NeuroendocrineCancer

    << Go back to the Podcast page EPISODE 16: TOP 10 HIGHLIGHTS OF THE 2022 NANETS SYMPOSIUM Download a Transcript of this Episode >> ABOUT THIS EPISODE In this special episode, Dr. Will Pegna shares 10 new and exciting discoveries from the 2022 North American Neuroendocrine Tumor Society (NANETS) Multidisciplinary NET Medical Symposium. Each year, hundreds of medical professionals gather to share the latest in NET research and medical advances. LACNETS and Dr. Pegna discuss the Symposium highlights and why they matter to the NET community. MEET DR. GUILLAUME PEGNA Dr. Guillaume (Will) Pegna, MD is a Medical Oncologist at Oregon Health & Science University or OHSU in Portland, Oregon. Dr. Pegna specializes in the care of adults with cancers of the gastrointestinal (GI) and neuroendocrine systems (NETs). He is additionally interested and experienced in the management of rare tumors including pheochromocytomas, paragangliomas, and adrenocortical carcinomas. 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. Dr. Pegna grew up in Upstate New York in a French-speaking family and goes by either Guillaume or Will, the English translation of his name. Outside of work, he enjoys hiking, ice hockey, and traveling with his family. TOP 10 HIGHLIGHTS OF THE 2022 NANETS SYMPOSIUM REFERENCES 10. Oral abstract presentation by Lindsay Hunter, MD, Huntsman Cancer Institute: "Circulating tumor DNA using a personalized, tumor-informed assay in metastatic well-differentiated gastroenteropancreatic neuroendocrine tumor patients." 9. Oral abstract presentation by Mehran Taherian, MD, MD Anderson: "High-grade Pancreatic Neuroendocrine Neoplasms: Interobserver Diagnostic Accuracy and Relationship with Clinicopathology and Molecular Characteristics." 8. Oral presentation by Aman Chauhan, MD, University of Kentucky Markey Cancer Center: “How to Define PRRT Refractory and Role of PRRT Repeat?” NET RETREAT: A Phase II RCT of Lu-177 DOTATATE Retreatment vs. Everolimus in Midgut NET Courtesy of Aman Chauhan, MD 7. Oral presentation by Jaume Capdevila Castillon, MD, PhD, Hospital Universitari Vall d’Hebron, Spain: “Novel TKIs for GEP NETs” Courtesy of Jaume Capdevila MD, PhD Poster presentation by Satya Das, MD: "E fficacy and Toxicity of Anti-Vascular Endothelial Growth Factors (VEGF) Receptor Tyrosine Kinase Inhibitors (TKIs) in Neuroendocrine Tumors (NETs) - A Systematic Review and Meta-Analysis." 6. Oral abstract presentation by Nancy Joseph, MD, PhD, University California, San Francisco: "TP53 Mutation Portends a Worse Overall Survival in Patients with Advanced Grade 3 Well-Differentiated Neuroendocrine Tumors." 5. Oral abstract presentation by Taymeyah Al-Toubah, MPH, Moffitt Cancer Center: "Phase 2 Study of Pembrolizumab and Lenvatinib in Advanced Well-Differentiated Neuroendocrine Tumors." 4. Oral abstract presentation by Eleonora Pelle, MD, Moffitt Cancer Center: "Development of a Novel Anti-SSTR Bispecific T-Cell Engager (BiTE)-like Molecule for the Treatment of Neuroendocrine Tumors." 3. Oral abstract presentation by Taymeyah Al-Toubah, MPH, Moffitt Cancer Center: "Risk of Myelodysplastic Syndrome/Acute Leukemia with Sequential Capecitabine/Temozolomide and 177Lu-Dotatate." 2. Oral abstract presentation by Brendon Herring, MS, University of Alabama at Birmingham School of Medicine: "Transcriptomic Influences of Racial Disparities in Black Patients with Pancreatic Neuroendocrine Tumors." Oral abstract presentation by Farhana Moon, Sr Clinical Research Analyst, UCSF, Helen Diller Family Comprehensive Cancer Center: "Variants of Uncertain Significance (VUS) are More Common in Non-Caucasian Patients with Neuroendocrine Neoplasms (NENs)." 1.Oral presentation by Dr Ebrahim Delpassand, Excel Diagnostics: "Early Data on 212Pb-DOTAMTATE (Alpha PRRT)" 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 27-29, 2022 Symposium, there are many more noteworthy abstracts found (or listed) here: Click here for NANETS Oral Abstracts Presentations Click here for NANETS Oral Abstracts in PDF format 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. CLINICAL TRIAL INFORMATION Targeted Alpha-emitter Therapy of PRRT Naive Neuroendocrine Tumor Patients (ALPHAMEDIX02) Study of RYZ101 Compared With SOC in Pts With Inoperable SSTR+ Well-differentiated GEP-NET That Has Progressed Following 177Lu-SSA Therapy (ACTION-1) Testing Cabozantinib in Patients With Advanced Pancreatic Neuroendocrine and Carcinoid Tumors (CABINET) EXCEL Diagnostics (AlphaMedix, Alpha PRRT trial) RESOURCES https://www.youtube.com/watch?v=sgppSkk74p0 "NET Medical Therapies" with Dr. Hecht (October 6, 2022) https://www.youtube.com/watch?v=kZCd2zyn4fM "Exciting Advances in NET Management: Cu64 DOTATATE & Alpha PRRT" with Dr. Ebrahim S. Delpassand 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

  • Apr2026 | NCF

    Join NCF for Apr2026. Explore event details, dates, times, and discover opportunities to connect, learn, and get involved. < Back to the upcoming events page https://www.youtube.com/watch?v=x-7k7GDS2CU Some Topics Covered: Neuroendocrine Cancer, Newly Diagnosed Download Presentation Slides >>> ABOUT Being newly diagnosed with neuroendocrine cancer can feel overwhelming. Many patients find themselves asking, “What exactly is neuroendocrine cancer, and how is it different from other cancers?” This webinar is designed to bring clarity, reassurance, and guidance during one of the most confusing stages of the neuroendocrine cancer journey. Join Dr. Osama MoSalem, medical oncologist at St. Luke’s in Kansas City , for a clear and compassionate overview of what every newly diagnosed NET patient should know. Dr. MoSalem will explain what neuroendocrine cancer is, why it behaves differently from more common cancers, and how its unique features influence diagnosis and treatment. This session will walk you through the most important early concepts, including: Grade and stage: what they mean and why they matter Key tests and scans used at diagnosis Treatment pathways , including when to consider surgery, medications, targeted therapies, radioligand therapy, or clinical trials Essential questions to ask your care team Practical first steps to help you feel more prepared and empowered Whether you’re newly diagnosed, supporting a loved one, or simply trying to better understand this disease, this webinar will provide a solid foundation to help you make informed decisions with greater clarity and confidence. ABOUT DR. OSAMA MOSALEM Medical Oncologist St. Luke's Health System Kansas City Osama MoSalem, MD is a board-certified hematologist and medical oncologist with Saint Luke’s Cancer Specialists in Kansas City, MO where he specializes in the care of adults with gastrointestinal (GI) cancers including neuroendocrine tumors. In addition to caring for patients, Dr. MoSalem has been involved in clinical research primarily focused on gastrointestinal cancers, neuroendocrine tumors and precision oncology. Dr MoSalem earned his medical degree from Cairo University, Egypt, residency training in internal medicine at Michigan State University, followed by fellowship training at the Mayo Clinic College of Medicine and Science in Jacksonville, Florida. Outside of medicine, Dr. MoSalem enjoys staying active, playing soccer, and spending time with his family. THANKS TO OUR SPONSORS T he opinions expressed by the guest presenters, as well as the questions asked by the audience, have not been created or suggested by the Neuroendocrine Cancer Foundation or the sponsors of this program. The Neuroendocrine Cancer Foundation does not endorse or promote any of the views, opinions or information provided in this presentation. Audience members should not rely 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.

  • Other | NeuroendocrineCancer

    << Back Other INSULINOMA upLIFT: Ersodetug in Insulinoma/Tumor Hyperinsulinism OTHER Belzutifan/MK-6482 in PNET + PPGL + VHL ENET STUDY: Quality of Life and Well-Being for NET Patients STELLAR-311: Zanzalintinib Versus Everolimus in pNET and epNET with Locally Advanced or Metastatic Neuroendocrine Tumors Tarlatamab in DLL3-Expressing Tumors Including Neuroendocrine Neoplasms

  • Episode 51: Highlights of the 2025 NANETS Symposium | NeuroendocrineCancer

    << Go back to the Podcast page EPISODE 51 - Highlights of the 2025 NANETS Symposium Download a Transcript of this Episode >>> ABOUT THIS EPISODE In this special annual episode, OHSU medical oncologist Dr. Guillaume (“Will”) Pegna joins us once again to break down the highlights from the 2025 North American Neuroendocrine Tumor Society (NANETS) Multidisciplinary NET Medical Symposium. He walks us through the latest clinical trial results and emerging research—covering PRRT, non-PRRT therapies, liver-directed treatments, and new biomarkers—and explains what these updates mean for the NET patient and caregiver community. MEET DR. WILL 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. Highlights of the 2025 NANETS Symposium: Clinical Trial Definitions See also Glossary: Common Terms in Clinical Trials Objective Response Rate (ORR) or Response Rate The percentage of patients whose tumors shrink by a meaningful amount after treatment. Progression-Free Survival (PFS) The average length of time patients live without their cancer growing or worsening after starting treatment. Overall Survival (OS) The average length of time patients are alive after starting a treatment, regardless of whether the cancer grows. Disease Control Rate (DCR) The percentage of patients whose cancer is controlled by treatment, including those whose tumors shrink as well as those whose disease remains stable and does not grow. Adverse Events (AEs) Side effects that occur during or after treatment. Grade 3, 4, 5 are the concerning ones. View the abstracts in the 2025 NANETS Symposium Abstract Booklet PRRT Capdevila J, et al. Efficacy of 177Lu-edotreotide vs everolimus in patients with grade 1 or grade 2 GEP-NETs: Phase 3 COMPETE trial. Abstract C-14 Strosberg J, et al. Long-term Follow-up of PRRT-Naïve Patients with GEP- NETs Treated with Targeted Alpha Therapy 212Pb- DOTAMTATE in the Phase 2 ALPHAMEDIX 02 Trial. Abstract C-15 ( Presented by Mary Maluccio.) Strosberg J, et al. Phase 2 Study of Targeted Alpha Therapy 212Pb-DOTAMTATE in Patients with Advanced Gastroenteropancreatic (GEP)-NETs Previously Treated with PRRT. Abstract C-16 Chauhan A, et al. Efficacy and Safety of Peptide Receptor Radionuclide Therapy Retreatment (r-PRRT) Practices in Progressive Neuroendocrine Tumors (prog-NETs): Systematic Review and Meta-Analysis. Abstract C-27 * Check out the ongoing NET RETREAT Study in the NCF Clinical Trials Guide THERAPEUTICS SECTION (NON-PRRT) Chauhan A, et al. DAREON®-7: Phase I open-label dose-escalation/- expansion study of first-line obrixtamig (BI 764532) plus chemotherapy in patients with DLL3-positive neuroendocrine carcinomas . Abstract C-8 . Capdevila J, et al. An ongoing phase 1 trial of obrixtamig in patients with extrapulmonary neuroendocrine carcinomas with high or low DLL3 expression. Abstract C-1 . * Check out the ongoing DAREON®-7 Clinical Trial and the DAREON®-5 Clinical Trial Sahwan O, et al. The Efficacy of Low-dose vs Standard-dose Everolimus in Patients with Advanced Neuroendocrine Tumors. Abstract C-10. LOCAL REGIONAL THERAPIES Soulen M, et al. Randomized Embolization Trial for NeuroEndocrine Tumors (RETNET). Abstract C-12. Kim J, et al. Safety of Transarterial Liver Directed Therapy for Metastatic Neuroendocrine Tumor for Patients with Carcinoid Heart Disease. Abstract C-25. ( Presented by Nicholas Fidelman.) Wornow, S, et al. Resection of Primary Pancreatic Neuroendocrine Tumors in the Metastatic Setting. Abstract C-44. BIOMARKERS Fu S, et al. Claudin 18.2 in pancreatic neuroendocrine tumors: a potential therapeutic target. Abstract B-13. ( Presented by Garima Gupta.) Singh A, et al. PPM1D as a Potential Driver of Myeloid Malignancy Transformation in Neuroendocrine Tumor (NET) Pts: An Underrecognized Malignant CHIPerpetrator? Abstract C-5. Bendjennat M, et al. Validation of Adversity-Linked Genes in Pancreatic Neuroendocrine Tumors. Abstract B-2. (Presented by Andrea Gillis.) HONORABLE MENTIONS Dillon JS. Clinical integration of GLP-1 into patient care: Risks and clinical integration (MEN1, diabetes, syndromic patients, etc.). Oral presentation at the 2025 NANETS Annual Symposium. Related peer-reviewed article: Shilyansky JS, Chan CJ, Xiao S, et al. GLP-1 receptor agonist promotes proliferation of neuroendocrine neoplasm cells expressing GLP-1 receptors. Surgery. 2025. PMID: 39665969. * Check out the NCF podcast episode 49 where Dr. Dillon addresses GLP-1 drugs in NETs Hallet J, et al. Care of Neuroendocrine Tumors: The Collaborative of Surgical Teams for NeuroEndocrine Tumors (CUTNETs). Abstract C-35. Understanding Carcinoid Crisis with Dr. Julie Hallet. 2024 LACNETS (now NCF) Patient Conference What Matters About Liver Surgery with Dr. Julie Hallet. 2025 NCF Patient Conference NANETS The North American Neuroendocrine Tumor Society (NANETS) provides NET medical educational programming designed exclusively for medical professionals. While our Podcast only features 11 presentations from the 2025 NANETS Symposium, there are many more noteworthy abstracts found (or listed) here: NANETS Abstract Library 2025 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 Top 10 Highlights of the 2024 NANETS Symposium Top 10 Highlights of the 2023 NANETS Symposium Top 10 Highlights of the 2022 NANETS Symposium Podcast Episode 48: NEN TREATMENTS: FOCUS ON DLL3 Explore the NCF Clinical Trials Guide including study information, videos and resources. 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

  • ACTION-1: Alpha PRRT with Ac-225 in GEP-NETs | NeuroendocrineCancer

    ACTION-1: Alpha PRRT with Ac-225 in GEP-NETs << Back ACTION-1 ALPHA PRRT - Study of RYZ101 Compared With SOC in Pts With Inoperable SSTR+ Well-differentiated GEP-NET That Has Progressed Following 177Lu-SSA Therapy CLINICALTRIALS.GOV IDENTIFIER: NCT05477576 DRUG/TREATMENT: ALPHA PRRT with 225Ac-DOTATATE Actinium 225 radiolabeled somatostatin analog (SSA) for injection COMPARED TO: Everolimus, Sunitinib, Octreotide, Lanreotide PHASE: Phase 3 STATUS: Recruiting April 2023 SPONSOR: RayzeBio, Inc. https://www.youtube.com/watch?v=U_cjeFdRZwk Dr. Heloisa Soares discusses the ACTION-1 Trial https://www.youtube.com/watch?v=w9kA8_gmVfM Dr. Will Pegna discusses the ACTION-1 Trial Starting at 5:07 DESCRIPTION: RayzeBio is sponsoring the ACTION-1 study, a phase 3 open-label study of 225Ac-DOTATATE (RYZ101) compared with standard of care therapy in patients with inoperable, advanced, SSTR+ well-differentiated GEP-NET that has progressed following treatment with 177Lu-DOTATATE/TOC. Update - Aug 22, 2023 2023 ESMO Abstract shows preliminary safety and efficacy (Note: The meaning of efficacy in clinical trials refers to the capacity of a treatment, device, or medication, to produce a desired effect on the patient population.) Download the PDF here: 1198P-RYZ101-301-ESMO-2023-poster-UPLOAD .pdf Download PDF • 4.57MB For more information on eligibility criteria, trial locations, study details, etc ., go to ClinicalTrials.gov to view this trial here. OTHER HELPFUL RESOURCES: 'Alpha Radioligand Therapy in Neuroendocrine Neoplasms: Current Landscape and Spotlight on RYZ101' CONTACT: RayzeBio Clinical Trials EMAIL: clinicaltrials@rayzebio.com PHONE: 619-657-0057

  • May28 | NeuroendocrineCancer

    << 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 — who present on topics relevant to 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 with 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

  • SORENTO™: Subcutaneous Octreotide for GEP-NETs (CAM2029) | NeuroendocrineCancer

    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

  • #AskMeAboutNETsChallenge | NeuroendocrineCancer

    In an effort to raise awareness about neuroendocrine cancer (NETs) in the healthcare community, we invite you to use YOUR voice, take the pledge, and join the #AskMeABoutNETs Challenge. The #AskMeAboutNETs Challenge In an effort to raise awareness about neuroendocrine cancer (NETs) in the healthcare community, we invite you to use YOUR voice, take the pledge, and join the #AskMeABoutNETs Challenge. What is the #AskMeABoutNETs Challenge? LACNETS is inspiring NET patients and allies around the world to educate their local healthcare professionals about NETs. Ready for your challenge?! We ask you to take the pledge to educate two or more of your local healthcare professionals using our #AskMeAboutNETs downloadable packets (included below). To complete the challenge, you must follow these four simple steps: Step 1: Take the pledge by clicking “take the pledge” button below. Step 2: Download the #AskMeAboutNETs information packet (included below). Step 3: Personally deliver, mail, or email the #AskMeAboutNETs information packet to at least TWO of your local health professionals. Step 4: Complete the “challenge completion form” at the bottom of this page to confirm you have completed steps 1 and 2. TAKE THE PLEDGE First Name Last Name Email TAKE THE PLEDGE Thanks for taking the pledge! Why is this challenge important? One of the biggest and most urgent challenges for the NET community is the lack of information throughout our local healthcare systems. It’s vital that we do our part to educate our local healthcare communities which can lead to earlier diagnosis and expanded research. The more of us who take the pledge, the more healthcare professionals will be reached. Our voices are stronger together! What’s in the #AskMeAboutNETS packet? To make your outreach easier, we put together downloadable packets for both patients and allies, which include: An introductory letter (from a NET patient or NET ally ) Facts about NET Symptoms of NET Resources for patients and caregivers Resources for healthcare professionals Information about NET Cancer Day (a day dedicated to increasing awareness of NET) (If you have any issues downloading the packet, please contact events@LACNETS.org.) #AskMeAboutNETs Downloadable Packets Download this packet if you are a NET patient. DOWNLOAD THE PATIENT PACKET Download this packet if you are an ally to a NET patient. DOWNLOAD THE ALLY PACKET CHALLENGE COMPLETION FORM Please complete this form after you have shared the #AskMeAboutNETs with two healthcare professionals. #AskMeAboutNETs Completion Form First Name Last Name Email Health Care Professional #1 - Please share name, title/type of health care professional, institution or clinic Health Care Professional #2 - Please share name, title/type of health care professional, institution or clinic SUBMIT Thanks for submitting!

  • NETCONNECT Peer-to-Peer Program | NeuroendocrineCancer

    NETCONNECT A Peer-to-Peer Program NETCONNECT is a peer-to-peer network to connect neuroendocrine cancer patients and caregivers with those who can truly relate, listen, provide support and resources. We were all once the newly diagnosed, or the loved one of someone newly diagnosed, and we understand what that feels like. Our community members know how important it is to connect with others who “speak NET,” are familiar with neuroendocrine cancer terms, medical experts and treatment options. Or just to be reminded to take a deep breath and know you're not alone in this journey. CONNECT WITH A PEER Whether you are newly diagnosed or a long-term survivor, our peers are here for you. Please send us an email to be connected with a peer. Email us at info@ncf.net MEET THE NETCONNECT PEERS Brent Currie Heather Davis Beth Deblase Michel DeQuevedo Mary Donlevy Dusty Hurley Denny Organ Shane Peters Aimee Powell Samuel Prentice David Schrimmer Valerie Tippy Beth Voyles Brent Currie BRENT CURRIE NET Patient Brent was diagnosed mid-2017 during an ER visit for blockage and had his large midgut primary NET near the ileum resected. His local oncologist closely monitors bloodwork and scans for new metastases and coordinates results with his multidisciplinary NET center and NET specialist. His past treatments include a second major resection, and lanreotide which he worked hard with his medical team to minimize the severe side-effects unique to him. He is happy to be working with newly diagnosed patients, helping folks understand the terminology and preparing for specialist visits using the NET Vitals worksheet. He is finding this stage of life to be a faith journey just as much as it is a medical journey. He is also a caregiver to his cancer-survivor mom, and enjoys technology and singing/playing music. Watch Brent share about his NET journey here. Heather Davis HEATHER DAVIS Director of Community Engagement Neuroendocrine Cancer Foundation Heather was a medical advocate and caregiver for 12 years for her mother, Shaunie, who was diagnosed with pancreatic neuroendocrine cancer in 2012. The efforts required to navigate and manage a rare disease, with complications of Zollinger-Ellison Syndrome, motivated Heather to shift her 20-year marketing career to patient engagement. After learning from and volunteering for LACNETS, she was pleased to join the LACNETS Team in the Fall of 2022. Heather is passionate about supporting those affected by NET. She aspires to bridge the information gap between patients, physicians and healthcare resources. Spending time with her nephews, friends & family brings her levity and joy. Watch Heather and her mother share about their experience with PRRT. Beth Deblase BETH DEBLASE NET Patient Beth was diagnosed in 2016 with metastatic, midgut NET. In that time, she has made aesthetic oncology and integrative therapies her passion. Her mission is to help enhance the quality of life for fellow cancer patients and caregivers, including herself, her four children, and husband. Watch Beth share her inspiring story of strength and resilience titled, “A Shared Experience” here. Michel DeQuevedo MICHEL DEQUEVEDO NET Patient Michel DeQuevedo is a Mexican – Canadian musician living with NETs. After almost 10 years of being “diagnosed” with pretty much every single gastrointestinal condition, changing his diet almost as often as his socks, constantly visiting everybody’s bathrooms and taking tons and tons of non-recreational drugs, he was diagnosed with functional, grade 1, Gastrointestinal NETs, small bowel primary with mets in his liver, appendix, right lung and omentum in September 2021. Michel had an open surgery in December 2021 where some of his factory original parts where removed, along with 90% of the tumors. He is currently on Lanreotide, 120mg every 21 days and can finally have a conversation with someone without having to take bathroom breaks! Michel is an active patient advocate and the founder of NETs México, working to raise awareness about NETs in México and Latin America. He believes keeping a positive attitude is extremely important, as it helps us maintain a clear mind and keeps us moving forward. Watch Michel’s story of diagnosis to patient advocacy here. This video is also available in Spanish, found here . Mary Donlevy MARY DONLEVY NET Patient & NCF Board Member Mary was diagnosed in 2005 with a Pancreatic NET. She had a Whipple surgery after her initial diagnosis and a decade of stable disease afterwards on Afinitor and Sandostatin treatments. After a liver resection surgery in 2023 Mary is currently managing her liver metastases with Lanreotide. While living well with this disease for over 21 years Mary has raised four children, two of which are identical twins born after her diagnosis. Mary enjoys ocean swimming and traveling with her family. Watch "Against the Tide: The Mary Donlevy Story". Watch Mary share about her experience in a clinical trial. Watch Mary also share about "scan-xiety," the common anxiety patients sometimes have when undergoing scans here. Watch Mary share her story of living with pancreatic neuroendocrine tumor. DUSTY HURLEY NET Patient Dusty Hurley is wife to a charming Irishman; mom to two loving, fun, and bright elementary-aged daughters; and the favorite human of two fluffy, playful dogs. Her professional background includes ministry, nonprofit and government leadership, and grant writing. She enjoys spending time with friends and family…bonus points if it can be around a campfire or traveling to somewhere new. Diagnosed with a pancreatic neuroendocrine tumor (pNET) in 2022, Dusty brings faith, optimism, and determination to her roles as both patient and advocate. She’s passionate about helping others navigate NET with clarity, courage, and hope. Watch Dusty on a recent patient panel: "Living With NET: A Patient Perspective" Dusty Hurley Denny Organ DENNY ORGAN NET Patient Denny likes to say that he is living quite well with well-differentiated grade 3 NETs first diagnosed in June of 2020, with significant mets in his liver. Early in his NET journey he dedicated the time to gain as much understanding and knowledge as possible about his disease, treatment options and prognosis. His path has been somewhat unique in having his first-line treatment be Lu-177 PRRT in 2020, and following progression in 2024, two additional rounds of Lu-177. Denny is a very engaged self-advocate and has assembled a strong cross-functional medical team of NET specialists for support. He is a strong believer in integrative oncology being a partner with traditional oncology on his cancer journey and continues to learn and implement strategies for whole body health. Denny’s goal is to keep his cancer, carcinoid heart disease, coronary heart disease and gallstones stable so that he can enjoy the best possible quality of life. He continues to have the time and energy to enjoy a wide variety of hobbies, keep physically active, connect with other NET patients throughout the west coast, and even occasionally provide a patient perspective at NET medical conferences! Watch Denny share his experience with PRRT. Shane Peters SHANE PETERS NET Caregiver & Advocate Shane dove headfirst into the world of neuroendocrine tumors after his mother was diagnosed with stage four, pancreatic NET in 2020. Shane's mom, Ilka, is his best friend and he is determined to do everything and anything possible to make sure his mom forever receives the best cancer care. Shane's mother has undergone a distal pancreatectomy, splenectomy, cholecystectomy, five bland liver embolizations, countless Lanretoide injections and a second liver debulking surgery at the NIH to manage her diagnosis Shane has found such a loving community within LACNETS, in which many of these connections have become dear friends and supporters in his life. Shane is so grateful to be able to give back to the community and help those facing similar journeys as his mother. When Shane is not learning about NETs, he spends his days teaching chorus, piano and music in southern New York! Watch "The Strength of Support: the Shane and Ilka Peters Story." Watch Shane and his mother share their NET journey. Read Shane Peters' blog post 'Scan Results: To Check or Not to Check' Aimee Powell AIMEE POWELL NET Caregiver & Advocate Aimee Powell's involvement with the NET cancer community has its roots in her work as a caregiver for family members diagnosed with pheochromocytoma and paraganglioma (pheo/para). She has worked in an administrative capacity with nonprofits since 2005, and as a professional communicator for over twenty-five years. After her brother's death from malignant paraganglioma, she dedicated herself to raising awareness of para/pheo, and to assisting patients with these rare tumors. Aimee is the founder of the Pheo Para Project, past Executive Director of the Pheo Para Alliance, and currently sits on the board of directors for the SDH-Deficient Cancer Research Advocates. She lives in the Greater Los Angeles area. Watch Aimee share about her pheo/para journey here. Samuel Prentice Jr. SAMUEL PRENTICE JR. NET Patient Samuel is 78, widowed with three children, a retired professional social worker, holistic counselor and educator. He was officially diagnosed in 2017 with NET originating in the small bowel with liver metastases, resulting in the removal of nine feet of small intestine, ileum, iliosacral valve, and his appendix. Samuel then began monthly Sandostatin injections, but in 2018 had a NET colon blockage which led to a colostomy and multiple hospitalizations. In January, 2019 he completed four cycles of PRRT resulting in five years without NET growth. In 2023, he had ⅓ of his neuroendocrine tumorous colon and colostomy removed. The surgeries, however, resulted in struggles with gastrointestinal motility and weight loss. Regardless, Samuel maintains quality of life and energy by swimming and QiGong exercise, singing, dancing, traveling between homes in Southern California and the Indiana Dunes to visit family and friends, continuing his personal holistic growth, progressive political activism and doing one-on-one volunteer counseling with NET patients. He also has fun driving his Acura NSX, and attending hockey, theatre, music, fine art live events and handing out Lollipops! Laugh and sing along as Samuel shares his “Circle Song.” DAVID SCHRIMMER NET Patient David was born and raised in California, spending most of his life in San Diego where he and his wife raised two beautiful daughters. Most recently, the family has welcomed a new grandson who has provided much joy to an already happy family. In addition, a new puppy has successfully turned life upside down with his unbridled enthusiasm for simply being a “part of the pack.” Professionally, David worked at the University of California for many years, practicing and teaching medicine until the time of his diagnosis with neuroendocrine cancer. Opening a new chapter in life, David now spends much of his time as a patient advocate, continuing to seek avenues to educate patients with the same diagnosis. In addition, he now serves on several task force committees, including the National Cancer Institute at the National Institutes of Health, serving to help provide the patient voice to proposed studies designed to advance our knowledge and treatment options for patients with NET’s. In his free time, David is an avid photographer, taking pictures since his first camera purchase at the age of 8. Currently, his passion is in the growing area of astrophotography, travelling to some of the darkest skies in the world in search of the light from our universe, trying to capture and record its beauty. Watch David on a recent patient panel: "Living With NET: A Patient Perspective" David Valerie Tippy VALERIE TIPPY NET Patient Val was diagnosed with Carcinoid Syndrome in October 2015 with an unknown primary. Along with the unpredictable diarrhea and fatigue, she also deals with sudden shortness of breath, coughing and a hoarse voice. Val’s doctors feel her NET is hiding, so routine tests and scans are done to try and locate the elusive tumor. This can be an ongoing challenge for some NET patients, so getting to the right NET specialist is crucial. In early 2016, Val began doing Lanreotide shots every 4 weeks. When that did not seem to control the symptoms, she was given Lanreotide every 3 weeks, with 5 – 8 rescue shots per day, as needed. In November 2021, her doctor decided to try using an insulin pump with hourly infusions of Octreotide. It was quite a process to find the right dosage, but it has helped tremendously with controlling the syndrome. Val recently retired after spending the last 20 years working with hospitals on designing security systems for patient protection. Her goal is to travel with her husband and spend time with her two adult children. Watch Val share about her NET journey here. BETH VOYLES NET Caregiver Beth was the primary advocate and caregiver for her husband Don. Don began this roller coaster ride when he was diagnosed in November 2019 with midgut NETs and metastases to his liver, pancreas, and bones. He also had carcinoid syndrome from functional tumors. Don underwent numerous treatments for his NETs as well as replacement of both his tricuspid and pulmonary heart valves. His symptoms were very difficult to control. Beth’s professional career as a palliative care nurse provides a unique perspective on the role of advocacy and caregiving. Beth and Don experienced both highs and lows on this journey, but took it one day at a time. They travelled when they could and made memories with family and friends along the way. Watch Beth and Don share about their NET journey here. Read Beth's blog post, "What It Means To Be A Caregiver." Beth Voyles

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