Search Results

<< Go back to the Podcast page EPISODE 38: NEN TREATMENTS: FOCUS ON LIVER-DIRECTED THERAPIES PART I: Overview and Ablative Techniques Including Histotripsy Download a Transcript of this Episode >>> ABOUT THIS EPISODE In this 2-part series, Dr. Osman Ahmed from University of Chicago covers liver-directed therapies for neuroendocrine neoplasms (NENs or neuroendocrine cancer). In this first episode, he outlines the types of liver-directed therapies and elaborates on ablative techniques including the newest technique, histotripsy. Listen to a frank discussion of how histotripsy works, when it might be used, and what its current limitations are. MEET DR. OSMAN AHMED Osman Ahmed, MD, is an expert vascular and interventional radiologist who diagnoses and treats a wide range of conditions. Using image-guided technology and small, sophisticated instruments, Dr. Ahmed performs minimally invasive procedures for acute and chronic deep vein thrombosis, benign prostatic hyperplasia, peripheral vascular disease, liver/bone/lung/kidney cancer, spinal fractures, uterine fibroids and more. He also implants inferior vena cava (IVC) filters, which prevent a blood clot from traveling around the body or creating a blockage. In addition to his clinical expertise, Dr. Ahmed researches novel treatment options that improve outcomes for patients. His research on liver cancer, IVC filters and venous diseases has been published in several high-impact, peer-reviewed journals, including the Journal of Vascular and Interventional Radiology, Radiology, Chest, Journal of American College of Radiology, and Journal of Surgical Oncology. Dr. Ahmed also believes in the importance of educating medical students, residents, fellowships and peers in order to enhance health care across the world. He has been invited to speak at a number of symposiums, practicums and national/international meetings about the newest advancements in interventional radiology. TOP TEN QUESTIONS ABOUT LIVER-DIRECTED THERAPY INCLUDING HISTOTRIPSY: What is liver-directed therapy? How does it work? Is this considered “surgery”? What is a surgery and what is a “procedure?” What are the types of liver-directed therapies used for neuroendocrine cancer? Which neuroendocrine cancers are they used for and when are they used? How do you decide who is a good candidate and if it will be effective? When are liver-directed therapies NOT used? Can someone who has had a Whipple undergo liver-directed therapy? What is the ablation zone? What is a heat sink effect? What is histotripsy? How does it work? When is histotripsy used (tumor grade, type of tumor - PNET/lung NET, size, number of tumor, location)? Can they be used for liver tumors even if there are tumors outside the liver? What are the limitations to histotripsy? What happens to the liver tissue after ablation? What are the results or success rates of patients being treated? Can histotripsy “cure” NET? How do you decide between the various types of liver-directed therapies? RESOURCES WATCH LACNETS Liver-Directed Therapy Videos READ "First Release #HOPE4LIVER Data Reveals 'Exciting' Potential of Histotripsy for Liver Tumours" "The #HOPE4LIVER Single-Arm Pivotal Trial for Histotripsy of Primary and Metastatic Liver Tumors" "HistoSonics® Publishes Results of its Pivotal #HOPE4LIVER Trials" OTHER RESOURCES The company, HistoSonics recently launched a new website – called myhistotripsy.com – to help educate patients on histotripsy and help them locate treatment sites. The website offers an overview of histotripsy and features patient stories, a form to help determine if histotripsy is right for you, and resources to find a doctor near you. Visit the Patient Website 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

NET Glossary/Index NET Reference Guide for Patients & Families by CNETS Download Here Neuroendocrine Tumors: A Primer for Healthcare Professionals by Healing NET Foundation Download Here

Pheo Para < Back to Topics Play Video Play Video 01:37:36 "The Latest in the Management of Functional Neuroendocrine Cancers • Jan, 2026 • Dr. Del Rivero Join this @NCFCancer educational patient event for an easy-to-understand overview of functional neuroendocrine tumors (NETs) with Dr. Jaydira Del Rivero, a medical oncologist and endocrinologist at the National Cancer Institute. Functional NETs can cause the body to produce too many hormones, leading to challenging symptoms such as low blood sugar (often seen in insulinoma), high blood sugar (glucagonoma), and other hormone-related issues. Dr. Del Rivero will explain what these syndromes are, how they’re diagnosed, and the latest updates in treatment. She will also discuss conditions that can occur because of NETs or their treatments. She will help patients understand why symptoms like hypoglycemia are more common in some NET types. Whether you’re a patient, caregiver, or simply want to better understand functional NETs, this webinar will offer practical, up-to-date information to help you feel more informed and empowered. Potential Topics: Functional NET, Hormone-producing, Insulinoma, Gastrinoma, VIPoma, Zollinger-Ellison syndrome (ZES), Carcinoid, Hypoglycemia, Diarrhea, Flushing ABOUT DR. JAYDIRA DEL RIVERO 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. For more information, visit https://www.ncf.net/events/jan2026 Play Video Play Video 01:07:09 Episode 12: Pheochromocytoma & Paraganglioma (PPGL) ABOUT THIS EPISODE In honor of Pheo Para Awareness Week, NET endocrinologist and medical oncologist Dr. Jaydira Del Rivero of the National Cancer Institute answers ten common questions about pheochromocytoma and paraganglioma (PPGL). Dr. Del Rivero defines PPGL and describes the unique symptoms, genetic testing, and treatment options for PPGL. MEET DR. JAYDIRA DEL RIVERO 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. TOP 10 PPGL QUESTIONS 1. Who should be listening to this podcast episode? Do all NET patients need to know about PPGL? 2. What is PPGL? Is this a cancer? How common is PPGL? How do we know which ones have a higher risk of metastasis? 3. Is this genetic? Who should get genetic testing and when should they get it? Should family members/children get genetic testing or cancer screening? 4. What are the symptoms of PPGL? 5. How is PPGL diagnosed? What labs should be done for PPGL? What scans should I get if have PPGL? Is there a certain priority or order to which scans should get done and when? 6. What is the treatment for PPGL? How do I get appropriate treatment? How do I know what appropriate treatment is? 7. What if my disease is metastatic? What are my treatment options? 8. What if my disease recurs after surgery? What are my treatment options? Could I have surgery again? 9. Will my symptoms be gone after surgery or treatments? 10. I’ve been told I can’t get a biopsy and that surgeries might be dangerous. What do I need to know and what do I need to do? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast12. 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. Play Video Play Video 01:42:02 "Focus on Pheochromocytoma and Paraganglioma" - Jan 2023 LACNETS Educational Event Join LACNETS for a Rebroadcast of the unique webinar presentation of three pheochromocytoma and paraganglioma (PPGL) cases and an engaging panel discussion with experts Dr. Jaydira Del Rivero, Dr. Erik Mittra, and Dr. Karel Pacak. (Original broadcast on Wednesday, January 11, 2023) Play Video Play Video 09:47 Caregiver Story - Pheo/Para Aimee Powell, a caregiver and advocate for family members diagnosed with pheochromocytoma and paraganglioma shares what led her to a life of patient advocacy and assisting patients with these rare tumors. Aimee is the founder of The Pheo Para Project – www.pheoparaproject.org. To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 01:38:21 LACNETS Webinar: "Update on Pheochromocytoma and Paraganglioma" with Dr. Jaydira Del Rivero Have you wondered if NETs might be hereditary? What do you know about pheochromocytoma and paraganglioma (pheo/para)? NET expert Dr. Jaydira Del Rivero gives a full update on these rare and often misdiagnosed conditions. Recorded on February 17, 2022. To download a copy of Dr. Del Rivero's presentation slides, go to bit.ly/slides_feb2022. This presentation is also available in Spanish, found here: youtu.be/moN-iwvoTsI Speaker: Jaydira Del Rivero, MD, Endocrinologist, Oncologist, National Institute of Health To learn more about LACNETS, visit www.LACNETS.org. < Back to Topics Next Topic >

<< Go Back to NCF Events Page No registration required. HOW TO JOIN THE VIRTUAL LUNCHEON Submit your general questions for the Live Q&A on YouTube OR Facebook via chat. Click Here to Join on YouTube Stream Click Here to Join on Facebook Live “ 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

< Back to the upcoming events page https://www.youtube.com/watch?v=Q3ji1Zdo9oE ABOUT Learn from renowned Neuroendocrinologist Dr. David Metz, who discusses neuroendocrine tumors (NETs) found on endoscopy, including gastric, duodenal, colon and rectal NETs. Dr. Metz discusses which NETs can be found on endoscopies and how they are managed and treated. ABOUT DR. METZ David Metz, MD Gastroenterologist University of Pennsylvania School of Medicine Retired Professor CE of Medicine, Perelman School of Medicine, Co-director, GI Physiology Laboratory, Director, Acid Peptic Disorders Specialty Program, Co-director, Penn Program for Swallowing Disorders, Associate Chief for Clinical Affairs, Division of Gastroenterology, Co-director, University of Pennsylvania Neuroendocrine Tumor Program After earning his MD from the University of the Witwatersrand's Medical School, Dr. Metz was a resident at both the Albert Einstein Medical Center and the Johannesburg General Hospital. He went on to complete fellowships at Georgetown University Hospital as well as the National Institutes of Health. Arriving at Penn Medicine in 1993, David Metz, MD, held a variety of leadership roles within the Department of Gastroenterology, including Co-Directorship of the Neuroendocrine Tumor Center and Penn NET Treatment Program. Dr. Metz was previously a staff fellow at the National Institutes of Health, where he performed basic research in pancreatic acinar cell secretion and clinical research in Zollinger-Ellison syndrome. While at Penn Medicine, he served as Chair of the North American Neuroendocrine Tumor Society (NANETS), as a member of the Liaison Committee for Recertification of the American Board of Internal Medicine (American Gastroenterological Association representative), and on the Food and Drug Administration Gastrointestinal Drugs Advisory Committee, among other positions. Dr. Metz's clinical interests at Penn included Zollinger-Ellison syndrome and other acid-peptic conditions, Helicobacter pylori infection, non-steroidal anti-inflammatory drug gastropathy and the diagnosis and management of patients with functional and non-functional neuroendocrine tumors of the pancreas and alimentary tract. An investigator for a series of prominent clinical trials in all of these areas, Dr. Metz has published more than 200 articles on topics of clinical interest and research. He retired in July 2021 after 28 years at Penn Medicine. In 2021 Dr. Metz received the NANETS Lifetime Achievement Award that honors an individual who, over the course of their career, has provided outstanding contributions to neuroendocrine disease management through research, clinical practice or educational initiatives, as well as exceptional leadership in NANETS and dedication to its mission. RESOURCES Listen Read Our Cancer Stories: "Understanding Gastric Neuroendocrine Tumors" "Stages of Gastric Neuroendocrine Tumors" "Hormone Therapy for Gastric Neuroendocrine Tumors" "Types and Grades of Gastric Neuroendocrine Tumors" 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.

Tissue Procurement and Natural History Study of Neuroendocrine Neoplasms (NENs) Including Adrenocortical Carcinoma (ACC) << Back Tissue Procurement and Natural History Study of Neuroendocrine Neoplasms (NENs) Including Adrenocortical Carcinoma (ACC) CLINICALTRIALS.GOV IDENTIFIER: NCT05237934 PHASE: Observational STATUS: Recruiting* https://www.youtube.com/watch?v=J6T3Y94uJmo Dr. Jaydira Del Rivero Discusses Natural History Tissue Study: (NENs) and (ACC) Neuroendocrine neoplasm (NENs)are rare cancers arising from the neuroendocrine cells and can affect almost any part of the body. They vary from low grade neuroendocrine tumors (NETs) to high grade neuroendocrine carcinomas (NECs). These tumors often occur in the gastrointestinal tract, pancreas, lungs, adrenal medulla (pheochromocytomas) or adrenal cortex (adrenocortical cancer) and other areas of the body mentioned below: Gastroenteropancreatic neuroendocrine tumors (GEP-NET): stomach, duodenum, pancreas, colon, appendix, etc. Liver and gallbladder Adrenal tumors Pituitary gland Thyroid gland: medullary thyroid carcinoma Parathyroid tumors Pulmonary neuroendocrine tumors: typical and atypical carcinoid, small cell lung cancer (SCLC), large cell neuroendocrine carcinoma (LCNEC) Extrapulmonary small cell cancer Peripheral nervous system tumors: paraganglioma, neuroblastoma) Breast and genitourinary tract Their rates are rising in the United States and worldwide. Researchers want to learn more about NENs through this natural history study. OBJECTIVE: To study the natural history of people with NENs and obtain samples from them to learn more about the disease. The clinical management of all NETs is not standardized, with only a few FDA-approved therapies and we would like to learn which combination therapeutic approach should be used, how long treatment should be continued, and in what subgroup of NENs a particular treatment option should be used. ELIGIBILITY: People aged 18 and older who have or are suspected to have NENs or ACC. According to Dr. Del Rivero, this study will “give patients hope for new treatment options. Information from the study will be shared broadly with physicians. The goal of the study is to have a greater understanding of how NENs behave so we can develop new treatments that both improve patients’ quality of life and extend their lives.” For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. *NCI reimburses travel and lodging. Download reimbursement information in English. NCI Travel and Lodging Reimbursement Handout for Patients _9.23.2022 .pdf Download PDF • 121KB Download reimbursement information in Spanish. NIH-22-480 #7174 NCI Travel and Lodging Reimbursement Handout for Patients _9232022_Spanis .pdf Download PDF • 143KB CONTACTS: Jaydira Del Rivero, MD EMAIL: jaydira.delrivero@nih.gov

<< Go back to the Podcast page EPISODE 9: PRRT (PART II) Download a Transcript of this Episode >> Listen to Episode 8: PRRT (Part One) with Administrative Nurse Lindy Gardner of UCLA Health >> Listen to Episode 10: PRRT (Part Three) with Josh Mailman >> ABOUT THIS EPISODE Who is eligible for PRRT? What are the side effects? Should somatostatin analogues be continued? Can PRRT be repeated when there is disease progression? NET expert and Nuclear Medicine Physician Dr. Martin Auerbach of UCLA Health answers 10 common questions about the decision-making process of PRRT. Dr. Auerbach addresses how to manage side effects, carcinoid crisis, labs, and post-PRRT imaging. MEET DR. MARTIN AUERBACH Dr. Auerbach is the Director of Nuclear Medicine at the Westwood and Santa Monica UCLA Hospitals, and Associate 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 at the UCLA Santa Monica and Westwood Hospital, active research includes clinical studies investigating the role of molecular imaging with PET/CT to gain insights into malignant disease processes, and monitoring of cancer treatment. TOP 10 PRRT QUESTIONS 1. Who is eligible for PRRT? When considering PRRT, is there a minimum or maximum tumor size? What is the effect if a patient receives half the planned dose or a delay in receiving a dose due to low counts? 2. How do you decide on doses of radioactive agents in PRRT? Do they consider the individual’s weight or does everyone get the same dose? 3. What are the side effects of PRRT and how are they managed? 4. Do you continue SSA with PRRT and if so when should one receive it? 5. Can people have carcinoid crisis with PRRT? If so, how is this treated? 6. When or how often are labs done? Which labs and what are you looking for? 7. When do you do imaging? Which imaging to you do? 8. When would you expect to see a response with PRRT and what is the statistics about the shrinkage or response that is expected? 9. For those who have received 4 doses of Luthatera, what happens if/when there is progression, can PRRT be repeated? Can people have more than 4 doses of Lutathera? 10. What is the difference between alpha and beta PRRT? How would you decide between the alpha or beta PRRT? ADDITIONAL RESOURCES Read the LACNETS Blog Post "These Four Letters: PRRT" >> Click here for additional PRRT Resources >> 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 33: FOCUS ON TARGETED THERAPIES Download a Transcript of this Episode >>> ABOUT THIS EPISODE What are Targeted Therapies and how do they work? How and when would they be used in NETs? Dr. Scott Paulson from Baylor Cancer Center in Dallas discusses common questions and concerns about targeted therapies including side effects, dosing and treatment sequencing. Bonus: Dr. Paulson shares how we can learn from Harry Potter’s invisibility cloak in understanding treatment goals with NETs. MEET DR. SCOTT PAULSON Dr. Paulson is a medical oncologist and the medical director for the Neuroendocrine Research and Treatment Center at Baylor Charles A. Sammons Cancer Center in Dallas, Texas. He also serves as the co-director of the Gastrointestinal Research Program for the Sarah Cannon Research Institute. Dr. Paulson earned his medical doctorate at The University of Texas Southwestern Medical School. He took his residency and an internship in internal medicine at Brigham and Women's Hospital in Boston, Massachusetts. His fellowship was completed in medical oncology at the University of California, San Francisco. Dr. Paulson is active in clinical research focused on neuroendocrine tumors as well as cancers of the pancreas, liver, esophagus, stomach, and colon. Dr. Paulson is active in clinical research focused on neuroendocrine tumors as well as cancers of the pancreas, liver, esophagus, stomach, and colon. He currently is an investigator on a clinical trial studying nab-sirolimus, a mTOR inhibitor, which is a type of targeted therapy. TOP TEN QUESTIONS ABOUT TARGETED THERAPIES FOR NETs: What are targeted therapies? Are they considered chemotherapy? How do they work? What are the different types of targeted therapies for NETs? When and how are targeted therapies used? What side effects might someone have when taking a targeted therapy? Can targeted therapies affect blood sugars or cause diabetes? Can targeted therapies cause one to be immunocompromised? Can targeted therapies affect one’s blood counts? What is the goal of treatment with targeted therapies? (Why would one take these drugs given the potential side effects? Can the side effects be managed?) How do you decide which targeted therapy to recommend for a patient? Can a NET patient take more than one drug in this category? Can the medications be stopped and restarted? What is your approach with dosing? What is your approach with monitoring? What and how often do people need blood work? Does taking a targeted therapy preclude someone from getting another treatment in the future, such as Lutathera/PRRT, or a clinical trial of alpha PRRT? BONUS: What are the latest advances in targeted therapy? What is the future of targeted therapies? RESOURCES WATCH https://www.youtube.com/watch?v=OCtGElKt_J4 March 2024 LACNETS Educational Event with Dr. Jennifer Chan: "TKIs: Tyrosine Kinase Inhibitors & Neuroendocrine Tumors" https://www.youtube.com/watch?v=VuCnxQKJlSc 2023 LACNETS Neuroendocrine Tumor Patient Education Conference with Dr. Pamela Kunz: "The Latest in Systemic Treatments & Considerations for Treatment Sequencing" https://www.youtube.com/watch?v=VonfcmeellU October 2023: Dr. Jennifer Chan Announces the CABINET Trial Data on Cabozantinib CLINICAL TRIALS MENTIONED IN THIS EPISODE CABINET Randomized, Double-Blinded Phase III Study of Cabozantinib Versus Placebo in Patients with Advanced NETs After Progression on Prior Therapy Nab-sirolimus in Patients With Well-differentiated Neuroendocrine Tumors (NETs) 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 28: TOP 10 HIGHLIGHTS OF THE 2023 NANETS SYMPOSIUM Download a Transcript of this Episode >> ABOUT THIS EPISODE In this special episode, Oregon Health & Sciences University (OHSU) Medical oncologist, Dr. Guillaume (Will) Pegna, recaps the North American Neuroendocrine Tumor Society (NANETS) 2023 Multidisciplinary NET Medical Symposium. He shares the latest developments in NET research and medical advances from the conference and discusses why they matter to the NET patient community. MEET DR. GUILLAUME PEGNA Dr. Pegna is a medical oncologist who specializes in the care of adults with neuroendocrine tumors (NETs). He is additionally interested and experienced in the management of rare tumors including pheochromocytomas, paragangliomas and adrenocortical carcinomas as well as other gastrointestinal cancers. Dr. Pegna is actively involved with clinical trials and cancer research to improve survival and quality of life for cancer patients and to better understand the biology of these diseases. He specializes in the use of chemotherapy, immunotherapy and multidisciplinary approaches to cancer care. Dr. Pegna finds it rewarding to help patients understand their disease, providing treatment options based on each individual patient, and supporting them through their treatment journeys. TOP 10 HIGHLIGHTS OF THE 2023 NANETS SYMPOSIUM REFERENCES Honorable Mentions: C-46 - " P eptide Receptor Radionuclide Therapy Improves Survival in Patients Who Progress After Resection of Gastroenteropancreatic Neuroendocrine Tumors" Luis C. Borbon et al C-51 - " A Prospective Phase II Single-Arm Trial on Neoadjuvant Peptide Receptor Radionuclide Therapy (PRRT) with 177Lu-DOTATATE Followed by Surgery for Pancreatic Neuroendocrine Tumors (NeoLuPaNET)" Stefano Partelli et al Top 10: 10. C-39 - " Repeat Peptide Receptor Radionuclide Therapy in Neuroendocrine Neoplasms: A NET Center of Excellence Experience" Dr. Grewal at University of Iowa Holden Cancer Center & Lindsay Hunter, MD, Huntsman Cancer Institute 9. C-25 - " Pilot Study of Pembrolizumab and Peptide Receptor Radionuclide Therapy for Patients with Metastatic Well-Differentiated Neuroendocrine Tumors " Preliminary results of a prospective clinical trial by Nicholas Fidelman, MD, et al 8. C-1 - " Clinical impact of unsuccessful subcutaneous administration of octreotide LAR instead of intramuscular administration in patients living with metastatic neuroendocrine tumors" Retrospective study by Dr. Krishnan and Dr. Loree out of Vancouver BC 7. O-5 - " Chromogranin A as Surveillance biomarker in Patients with cARcinoids (CASPAR)" Study by Dr. Halfdanarson, et al 6. C-55 - " Association of Long-Term PPI Use With Low-Risk Gastric Neuroendocrine Tumor" Oral presentation by Taymeyah Al-Toubah, MPH, and Jonathan Strosberg, MD 5. C-47 - " Surgical Cytoreduction vs Systemic therapy in Patients with Metastatic Gastroenteropancreatic Neuroendocrine Tumors (GEP-NETS): NCDB Analysis " Abstract from Dr. Mohamed et al, Case Western Reserve University, Cleveland Ohio 4.a. C-5 - "A Phase 2 Clinical Trial of Cabozantinib in Patients with Unresectable and Progressive Metastatic Pheochromocytoma or Paraganglioma: The NATALIE Trial" Dr. Camilo Jimenez from MD Anderson Cancer Center 4.b. C-22 - " Phase 2 Trial of Lu-177-DOTATATE in Metastatic or Inoperable Pheochromocytoma/Paraganglioma: Interim Analysis Results " NIH Trial led by Dr. Frank Lin 3.a. O-9 - " Prevalence of Clonal Hematopoiesis (CH) in Neuroendocrine Tumor (NET) Patients Prior to Lutetium 177 Dotatate (Lu177): A Prospective Study " Mohamad Bassam Sonbol et al 3.b. C-32 - " Myelodysplasia and Leukemia Instances After PRRT: Experience From a Tertiary Institution" Nikolaos Trikalinos, MD et al 2.a. C-11 - " Transformation of Low-Intermediate Grade Neuroendocrine Tumors into High Grade Morphology" Dr. McGlothlin and Dr. Halfdanarson at Mayo Clinic 2.b. C-48 - " Predictors of Low-to-High Grade Progression in Pancreatic Neuroendocrine Tumors" Poster by Stephanie Wang and Dr. Emily Bergsland at UCSF 1.a. C-14 - " Cabozantinib as Salvage Therapy for Well Differentiated Grade 3 Neuroendocrine Tumors (G3 NETs)" Rylie Schnell and Dr. Halfdanarson, Mayo Clinic Comprehensive Cancer Center 1.b. C-3 - " Real-World Evidence of Lenvatinib Use for Treatment of Metastatic Neuroendocrine Neoplasms" Joao Paulo Solar Vasconcelos et al ABOUT NANETS The North American Neuroendocrine Tumor Society (NANETS) provides NET medical educational programming designed exclusively for medical professionals. While our Podcast only features 10 presentations from the NANETS October 4-6, 2023 Symposium, there are many more noteworthy abstracts found (or listed) here: NANETS Abstracts Library 2023 NANETS Abstracts Booklet While NANETS does not provide direct patient education, patients may help further NET education of medical professionals by sharing the organization's educational meetings and NET guidelines with their providers. RESOURCES LISTEN Previous NANETS Highlights Podcast CLINICAL TRIAL INFORMATION NET Retreat Trial Information DISCLAIMER LACNETS Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of LACNETS. Please contact your medical team with questions or concerns about your individual care or treatment. THANK YOU TO OUR SPONSORS

<< Go back to the Podcast page EPISODE 36: NEN TREATMENTS: FOCUS ON IMMUNOTHERAPY Download a Transcript of this Episode >>> ABOUT THIS EPISODE What is immunotherapy? How effective are they for neuroendocrine neoplasms (NENs)? Dr. Jennifer Eads from Penn Medicine answers common questions about immunotherapy. She discusses the latest in CAR T therapy, DLL3, and vaccine therapy for NENs. MEET DR. JENNIFER EADS Dr. Jennifer Eads is an associate professor of medicine at the University of Pennsylvania, Abramson Cancer Center where she is a gastrointestinal medical oncologist focusing on the treatment of and research in patients with neuroendocrine tumors and gastroesophageal cancers. She is the Physician Lead for GI Clinical Research, overseeing the Penn GI clinical research portfolio. She is the Penn institutional principal investigator for the Eastern Cooperative Oncology Group (ECOG-ACRIN) and serves as the Director of the National Clinical Trials Network (NCTN) for the Abramson Cancer Center. She has served as principal investigator for multiple phase I/II/III clinical trials, including as the national study chair for multiple cooperative group trials. She has served on the National Clinical Cancer Network (NCCN) neuroendocrine tumors guidelines committee, is a former member of the North American Neuroendocrine Tumor Society (NANETS) Board of Directors and is currently on the Board of Scientific Advisors for the Neuroendocrine Tumor Research Foundation (NETRF). In 2022, she was named as the ECOG-ACRIN Young Investigator of the Year. TOP TEN QUESTIONS ABOUT NEN TREATMENTS: What is immunotherapy? How does it work? How does immunotherapy differ from other treatments? When is immunotherapy used? Which neuroendocrine cancers are they used for? What are the various immunotherapy drugs used for neuroendocrine cancer and how do they work? What are immune checkpoint inhibitors? What is CAR-T therapy? What is DLL3? What is vaccine therapy? What side effects might someone have when taking immunotherapy? How does it make me look (will I lose my hair)? How will it make me feel (will I be able to work)? Does immunotherapy cause someone to be immunocompromised? What monitoring needs to be done while on immunotherapy? How do you decide when to use immunotherapy, which to use, and for what patient? What do you see as the future of immunotherapy in neuroendocrine cancer treatment? RESOURCES Immunotherapy Trials for NENs Clinical trials mentioned in this episode: CHM-2101 CAR-T cell for GI Cancers DAREON™- 5: DLL-3 BiTE for Neuroendocrine Cancers DAREON™-9: DLL-3 BiTE + Topotecan in Small Cell Lung Cancer (SCLC) SWOG S2012: Immunotherapy (Atezolizumab) + Standard Platinum WATCH https://www.youtube.com/watch?v=oSqUgq6QdnM https://www.youtube.com/watch?v=_sVqHnTs-Sk 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 37: SUPPORTIVE ONCOLOGY FOR NEUROENDOCRINE CANCER Download a Transcript of this Episode >>> ABOUT THIS EPISODE What is supportive care or supportive oncology? What is cancer-related distress? How might NET patients benefit from supportive care? Yale oncologist Dr. Maryam Lustberg suggests strategies to manage cancer-related fatigue, diarrhea, nausea, mouth sores, peripheral neuropathy, distress, anxiety, and anxiety. She also addresses considerations for fertility and sexual health. MEET DR. MARYAM LUSTBERG Dr. Maryam Lustberg is an American breast oncologist. She is the Director of The Breast Center at Smilow Cancer Hospital and Chief of Breast Medical Oncology at Yale Cancer Center. Dr. Lustberg previously served as the Medical Director of Cancer Supportive Care Services at Ohio State’s Comprehensive Cancer Center. She is the Immediate Past President of the Multinational Association of Supportive Care in Cancer. She is also an Associate Editor for the Journal of Cancer Survivorship. TOP TEN QUESTIONS ABOUT SUPPORTIVE CARE: What is supportive care in cancer (or supportive oncology)? What is survivorship? How do these concepts apply to the NET community? What is the 1st step for patients to get supportive care? What are the most common treated-related adverse events or side effects? What are risk factors for them? (Will all patients experience all potential side effects?) What causes cancer-related fatigue (CRF)? What are some strategies to manage cancer-related fatigue? What are some strategies to manage diarrhea? What are some strategies to manage nausea? What are some strategies to manage mouth sores? What is peripheral neuropathy? When do patients experience it and what can be done to prevent it? What should patients understand about sexual health and fertility? How can psychosocial needs such as distress, anxiety, and depression be addressed and supported? RESOURCES READ Mitigating long-term and delayed adverse events associated with cancer treatment: implications for survivorship Survivorship Care for People Affected by Advanced or Metastatic Cancer: MASCC-ASCO Standards and Practice Recommendations Supportive Care: Low Cost, High Value Integrative Oncology Care of Symptoms of Anxiety and Depression in Adults With Cancer: Society for Integrative Oncology–ASCO Guideline LISTEN LACNETS Podcast Episode 35: "NEN Treatments: Focus on Chemotherapy" LACNETS Podcast Episode 18: Mental Health & NETs LACNETS Podcast Episode 15: Psycho-Oncology OTHER RESOURCES LACNETS Nutrition Resources LACNETS Wellness Resources including meditation & yoga 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

Lu-177 DOTATATE + Olaparib in GEP-NETs << Back Lu-177-DOTATATE in Combination With Olaparib in Inoperable Gastroenteropancreatic Neuroendocrine Tumors (GEP-NETs) CLINICALTRIALS.GOV IDENTIFIER: NCT04086485 DRUG/TREATMENT: Lu-177 DOTATATE + OLAPARIB PHASE I / II STATUS: Recruiting SPONSOR: National Cancer Institute (NCI) https://www.youtube.com/watch?v=CC2NXP21R24 Dr. Del Rivero discusses Lu177-Dotatate + OLAPARIB DESCRIPTION: This phase 1-2 trial tests Lu-177-DOTATATE (Lutathera) in combination With olaparib (PARP inhibitor) in inoperable gastroenteropancreatic Neuroendocrine Tumors (GEP-NET). The objective is to learn if people with certain neuroendocrine tumors can take a combination of 2 drugs, Lu-177 DOTATATE and Olaparib, without having severe side effects, and if this treatment makes the tumors shrink. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. PRINCIPAL INVESTIGATOR: Frank Lin, MD CONTACT: National Cancer Institute Joy Zou, RN EMAIL: joy.zou@nih.gov PHONE: 240-760-6153