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<< Go back to the Podcast page EPISODE 32: FOCUS ON SOMATOSTATIN ANALOGUES (SSAs) Download a Transcript of this Episode >>> ABOUT THIS EPISODE How do SSAs work? Should all NET patients be on one? What are the side effects? Dr. Edward Wolin from Mount Sinai Health System answers several common questions about the current and future role of somatostatin analogues in NET treatment. MEET DR. EDWARD M. WOLIN Professor of Medicine, Medical Oncology, Icahn School of Medicine Director, Center for Carcinoid and Neuroendocrine Tumors Tisch Cancer Institute, Mount Sinai Health System Dr. Edward M. Wolin is an internationally renowned authority on neuroendocrine tumors. Dr. Wolin is the Director of the Center for Carcinoid and Neuroendocrine Tumors at the Tisch Cancer Institute at Mount Sinai and Professor of Medicine, Medical Oncology at the Icahn School of Medicine at Mount Sinai. The multidisciplinary Center for Carcinoid and Neuroendocrine Tumors features a robust research program with clinical trials aimed at finding the most effective treatments, including immunotherapy, biologic agents, targeted radiation therapy, and new approaches in molecular imaging for diagnosis. Dr. Wolin has pioneered innovative therapies with novel somatostatin analogs, mTOR inhibitors, anti-angiogenic drugs, and peptide receptor radiotherapy. Prior to joining Mount Sinai, Dr. Wolin was Director of the Neuroendocrine Tumor Program at Montefiore Einstein Cancer Center. Previously, he worked for more than two decades with Cedars-Sinai Medical Center in Los Angeles, where he founded and directed one of the largest Carcinoid and Neuroendocrine Tumor Programs in the country, and subsequently directed the Neuroendocrine Tumor Program at University of Kentucky. Dr. Wolin is also the Co-Medical Director for the Carcinoid Cancer Foundation and is on the Carcinoid Cancer Research Grants Scientific Review Committee for the American Association for Cancer Research. He has published in many prestigious journals, including the New England Journal of Medicine and Journal of Clinical Oncology, and is a reviewer for numerous journals, including Journal of Clinical Oncology, Molecular Cancer Therapeutics, Clinical Cancer Research, and The Lancet Oncology. During Dr. Wolin’s two decades at Cedars-Sinai Medical Center in Los Angeles, he developed a close friendship with LACNETS founder Giovanna Joyce Imbesi. Dr. Wolin was instrumental in the co-founding and development of LACNETS. LACNETS has always been very dear to his heart and he cherishes and honors the memory of Giovanna. Dr. Wolin earned his medical degree from Yale School of Medicine. He completed both his residency in internal medicine and fellowship in medical oncology at Stanford Un iversity Hospital. He was also a clinical fellow at the National Cancer Institute of the National Institutes of Health. Dr. Wolin is board certified in internal medicine and medical oncology. TOP TEN QUESTIONS ABOUT SOMATOSTATIN ANALOGUES (SSAs) FOR NETS: (1) What are somatostatin analogues (SSAs)? How do they work? (2) When and how are SSAs used? (3) Which SSA should a patient be on? What is the difference? How do you decide? Do SSAs shrink tumors? (4) How do you know if a SSA will be helpful? Should ALL NET patients be on a SSA? (5) What about patients whose tumors don’t “light up” on a DOTATATE scan? (6) H ow long can someone stay on a SSA? Do SSAs stop working after a period of time? Do people develop a “resistance” to the medication? (7) What side effects may patients experience from the shot? What can patients do to prevent or manage these symptoms? How might it affect one’s day-to-day ability to work and function? Can I live a “normal life” while taking this medication? Many patients complain of diarrhea after getting the shot. What might you recommend to prevent or manage diarrhea from the injection? I’ve heard SSAs cause issues with the gallbladder. Could you explain more about the possible correlation? Do SSAs cause diabetes? Many patients note soreness after getting the shot. What might you recommend to prevent soreness from the injection? (8) If the tumor is growing does this mean the SSA did not work? Do you continue it when patients are treated with another treatment? When do you stop a SSA? (9) What is the future of SSAs? I heard there is a pill that is available in a clinical trial. Can I take a pill instead of getting the injection? (10) What words of hope do you have for the NET community? RESOURCES READ Lanreotide + Octreotide Resources LACNETS Blog Post - "A Focus on Somatostatin Analogs (Your Monthly Shots)" LACNETS Blog Post - "The Shot" LACNETS Blog Post - "Practical Tips for Patients on the Shot Somatostatin Analog" Somatostatin Analogue (SSA) Clinical Trials DISCLAIMER LACNETS Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of LACNETS. Please contact your medical team with questions or concerns about your individual care or treatment. THANK YOU TO OUR SPONSORS

Support Line The Neuroendocrine Cancer Foundation is collaborating with the Carcinoid Cancer Foundation (CCF) to provide Support Line assistance. The Neuroendocrine Cancer Foundation is here to help you and those affected by NET. 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.

<< Go back to the Podcast page EPISODE 25: WHAT TO KNOW ABOUT GRADE 3 POORLY DIFFERENTIATED NEUROENDOCRINE CARCINOMA (NEC) Download the transcript here: Podcast Episode 25_Raj .pdf Download PDF • 201KB ABOUT THIS EPISODE What are Grade 3 Poorly Differentiated Neuroendocrine Carcinoma (NEC)? What makes NEC unique? Can a NET transform to NEC? Dr. Nitya Raj from Memorial Sloan Kettering Cancer Center in New York City explains NEC tumor biology and how it guides treatment strategy. She also discusses current clinical trials and research. MEET DR. NITYA RAJ Nitya Raj, MD is a gastrointestinal medical oncologist with a clinical practice devoted to caring for people with gastrointestinal and endocrine cancers, including neuroendocrine tumors, adrenal cancer, colorectal cancer, pancreatic cancer, and other gastrointestinal cancers. Dr. Raj’s research focuses on advancing treatments for neuroendocrine cancers (a rare group of tumors that often begin in the body’s digestive organs as well as adrenocortical cancers. Dr. Raj is also studying ways to improve our understanding of how neuroendocrine tumors change at the genetic level over time and as a result of different treatments, in order to better personalize our care for people with these cancers. Dr. Raj’s work has been recognized and supported by the American Society of Clinical Oncology with a Young Investigator Award and Career Development Award, as well as by the Neuroendocrine Tumor Research Foundation with a Pilot Award. Nationally, Dr. Raj serves on the Neuroendocrine Tumor Task Force of the National Cancer Institute. Dr. Raj is on the faculty of Memorial Sloan Kettering Cancer Center and Weill Cornell Medical College. TOP 10 QUESTIONS What is a poorly differentiated grade 3 neuroendocrine carcinoma (NEC)? Are all NEC poorly differentiated and are all poorly differentiated NEC? Where are they located? How are NEC found? How does one know it is a NEC? How is NEC unique compared to other types of neuroendocrine cancers? In particular, how is it different from grade 3 NET? What types of labs, scans, or testing for NEC? Can a NEC be surgically removed? How would you decide if, when, and how? How are NEC treated medically (or nonsurgically)? What treatment might you use as second-line? What is the role of liver-directed therapy? What is the role of immunotherapy? What are clinical trials we should be aware of or exciting new treatments in the pipeline for NEC? How are NEC monitored? What types of bloodwork or tests should be done and how often should they be done? What words of hope would you like to leave the neuroendocrine cancer community with? RESOURCES Click here for more resources for high-grade >> READ Expert Consensus Practice Recommendations of the North American Neuroendocrine Tumor Society for the management of high grade gastroenteropancreatic and gynecologic neuroendocrine neoplasms in: Endocrine-Related Cancer Volume 30 Issue 8 (2023) CLINICAL TRIAL SWOG 2012 Trial 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 21: WHAT TO KNOW ABOUT SMALL BOWEL NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE How are small bowel NETs diagnosed, treated, and monitored? How is it different from other types of NETs? What are some exciting new treatments for small bowel NETs? NET oncologist Dr. David Zhen of Fred Hutchinson Cancer Center in Seattle answers 10 common questions about small bowel NETs. MEET DR. DAVID B. ZHEN Dr. David Zhen is a medical oncologist who specializes in treating patients with gastrointestinal cancers. His research centers around the development of clinical trials evaluating new therapies and combination approaches for the treatment of patients with gastrointestinal cancers, particularly for neuroendocrine and gastroesophageal cancers. He is also conducting research to understand the interactions of the immune system in gastrointestinal cancers and how this can be manipulated to improve upon the response to immunotherapy drugs called checkpoint inhibitors, which block a braking system that cancers use to tamp down the immune response. TOP 10 QUESTIONS 1. What are small bowel NETs? Where are they located? 2. How are small bowel NETs found? What are the symptoms of a small bowel NET? 3. What types of labs, scans, or testing is done to determine if someone has a small bowel NET? Why are small bowel NETs not found in routine endoscopy or colonoscopy? 4. What are some ways that small bowel NETs differ from other types of NETs? What makes small bowel NETs unique from other types of NETs? 5. How do you decide if the small bowel NET(s) can be surgically removed? What type of surgeon would make that determination? 6. How are small bowel NETs treated medically? 7. How are treatments sequenced? 8. How are the treatments different from other NETs? 9. What are some exciting new treatments in the pipeline for small bowel NETs? What are clinical trials we should be aware of for small bowel NETs? 10. How are small bowel NETs monitored? What types of bloodwork or tests should be done and how often should they be done? What is the best type of scan for small bowel NETs? Bonus: What words of hope would you like to share with the NET community? RESOURCES WATCH "Systemic Therapy: GI NET" - 2020 LACNETS Patient Education Conference Recording of Dr. Zhen Visiting the LACNETS Support Group Patient Story: From Diagnosis to Patient Advocacy - 2022 LACNETS NET Patient Conference NET Patient shares how she has learned not just to survive, but also to thrive . LISTEN Listen to the NETRF NETWise Special Episode: Small Bowel NET + Take the LACNETS Quiz READ 2017 The Surgical Management of Small Bowel Neuroendocrine Tumors: Consensus Guidelines of the North American Neuroendocrine Tumor Society 2017 The North American Neuroendocrine Tumor Society Consensus Guidelines for Surveillance and Medical Management of Midgut Neuroendocrine Tumors 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

SWOG S2104: Adjuvant CAPTEM for High Risk pNET << Back SWOG S2104 - Testing the Use of Chemotherapy After Surgery for High-Risk Pancreatic Neuroendocrine Tumors CLINICALTRIALS.GOV IDENTIFIER: NCT05040360 DRUG/TREATMENT: Oral treatment; capecitabine and temozolomide PHASE: 2 STATUS: Recruiting SPONSOR: Southwest Oncology Group (SWOG) COLLABORATOR: National Cancer Institute (NCI) Dr. Heloisa Soares Discusses SWOG S2104 Adjuvant CAPTEM for pNET Dr. Will Pegna Discusses SWOG S2104 Adjuvant CAPTEM for pNET Starting at 4:23 DESCRIPTION: This phase II trial studies the effect of capecitabine and temozolomide after surgery in treating patients with high-risk well-differentiated pancreatic neuroendocrine tumors. Chemotherapy drugs, such as capecitabine and temozolomide, work in different ways to stop the growth of tumor cells, either by killing the cells, by stopping them from dividing, or by stopping them from spreading. Giving capecitabine and temozolomide after surgery could prevent or delay the return of cancer in patients with high-risk well-differentiated pancreatic neuroendocrine tumors. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. CONTACT: This is a multicenter trial with various locations. Go to the “Contacts and Locations” section of this trial page at ClinicalTrials.gov for site-specific contact information. PRINCIPAL INVESTIGATOR: Heloisa Soares , MD, PhD Southwest Oncology Group (SWOG)

<< Go back to the Podcast page EPISODE 23: WHAT TO KNOW ABOUT HINDGUT & APPENDICEAL NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE What are Hindgut NETs (distal colon and rectum) and how are they treated? How is rectal NET different from rectal cancer? What makes appendiceal NETs difficult to diagnose? Dr. Hagen Kennecke from Providence Cancer Institute in Portland, Oregon shares insights on the diagnosis and management of Hindgut NETs and appendix NET. MEET DR. HAGEN KENNECKE Dr. Hagen Kennecke is a Medical Oncologist and Medical Director of GI Oncology at Providence Cancer Institute and Associate Member of the Chiles Research Institute in Portland, Oregon. He has worked passionately to improve the treatment, education and outcomes of those affected by neuroendocrine tumors. Dr. Kennecke is an active clinician researcher, the recipient of numerous research awards and has authored numerous guidelines on the treatment of neuroendocrine tumors. He is a member of the US NCI GI Steering Committee and is a prior member of the NCI-NET Task Force, and has worked extensively within the neuroendocrine community including NANETS, Carcinoid Cancer Foundation, LACNETS and Healing NETS. TOP 10 QUESTIONS What are hindgut NETs? Where are they located? What are the different types of hindgut NETs? How are hindgut NETs found? What are the symptoms of a hindgut NET? What types of labs, scans, or testing is done to determine if someone has a hindgut NET? Could you discuss why people with appendix NET often have a challenging time getting a diagnosis. How is rectal NET different from rectal cancer? What are some ways that hindgut NETs differ from other types of NETs? What makes rectal NET unique? How do you decide if the hindgut NET(s) can be surgically removed? What type of surgeon would make that determination? There are people diagnosed with appendix NET who have been told by their doctor to have a hemicolectomy. What is your opinion about this? How are hindgut NETs treated medically or nonsurgically? How are treatments sequenced? How are the treatments different from other NETs? How are hindgut NETs monitored What types of bloodwork or tests should be done and how often should they be done? What is the best type of scan for hindgut NETs? What are clinical trials we should be aware of or exciting new treatments in the pipeline for hindgut NETs? And what words of hope would you like to share with the NET community? RESOURCES WATCH Bob Shares His NET Journey READ An Update on Appendiceal Neuroendocrine Tumor s Management of Appendix Neuroendocrine Neoplasms: Insights on the Current Guidelines - December 2022 Are Hemicolectomies Justified for Appendiceal Neuroendocrine Tumours Smaller Than 2 CM? Hemicolectomy Versus Appendectomy for Patients with Appendiceal Neuroendocrine Tumours 1-2 CM in Size: A Retrospective, Europe-Wide, Pooled Cohort Study NANETS Guidelines Library 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) 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

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

ABOUT CRINETICS At Crinetics Pharmaceuticals, our singular focus is on transforming the lives of patients living with endocrinology-related conditions. Our goal is to discover, develop, and commercialize novel therapeutics that leverage our unique understanding of endocrinology and G-protein coupled receptors (GPCRs). Endocrinology impacts nearly every aspect of human health, and our passion for this work runs deep. Our novel molecules that have been purposefully designed by our world-class, in-house R&D team have the potential to lift the burden of disease across a wide range of endocrine diseases and endocrine-related tumors so that patients can focus on life. Learn about Crinetics work in Carcinoid Syndrome >> Learn more about Crinetics and our groundbreaking work here >> RESOURCES FROM CRINETICS Download CONNECT with Crinetics Patient Advocacy Card >>> Download the CAREFNDR Brochure>>> Submit Your Question for Crinetics 2025 ANNUAL PATIENT CONFERENCE Confirm Your Visit to the Crinetics Virtual Booth! First name Last name Email Submit This information is for educational purposes only and does not substitute for medical advice or constitute an endorsement by NCF. Talk to your medical team about your individual care and treatment.

NET RETREAT: Retreatment with 177Lu-DOTATATE vs Everolimus in Metastatic Midgut NET << Back NET RETREAT: Comparing Retreatment of 177Lu-DOTATATE PRRT Versus Everolimus in Patients With Metastatic Unresectable Midgut Neuroendocrine Tumors CLINICALTRIALS.GOV IDENTIFIER: NCT05773274 DRUG/TREATMENT: Lu-177 Dotatate PRRT or Everolimus PHASE: 2 STATUS: Not Yet Recruiting SPONSOR: National Cancer Institute (NCI) Dr. Aman Chauhan Discusses NET Retreat DESCRIPTION: This phase II trial compares the effect of retreatment with 177Lu-DOTATATE peptide receptor radionuclide therapy (PRRT) to treatment with everolimus in patients with midgut neuroendocrine tumors that have spread from where it first started (primary site) to other places in the body (metastatic) and that cannot be removed by surgery (unresectable). PRRT involves treatment with a radioactive substance that is linked to a peptide receptor so that it will attach to a specific cell type when injected into the body. 177Lu-DOTATATE, a PRRT drug, may increase the length of time until worsening of disease by 8 months compared to the usual approach. Everolimus treats cancer by stopping cancer cells from reproducing and by decreasing blood supply to the cancer cells. Everolimus prevents transplant rejection by decreasing the activity of the immune system. Giving 177Lu-DOTATATE may work better in shrinking and stabilizing tumors in patients with neuroendocrine tumors. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. CONTACT/Principal Investigators: Dr. Simron Singh, Canadian Cancer Trials Group Dr. Aman Chauhan, SWOG Cancer Research Network

Research / Clinical Trials < Back to Topics Latest News on Clinical Trials Clinical Trials News Play Video Play Video 06:20 Dr. Jennifer Chan Shares 2025 Highlights & Future Directions in NET Research at the 2025 INCA Summit In this exclusive 2025 INCA Summit interview, Lisa Yen from the Neuroendocrine Cancer Foundation speaks with Dr. Jennifer Chan, President of NANETS and medical oncologist at Dana-Farber Cancer Institute, about the latest advances and future directions in neuroendocrine cancer research and treatment. Dr. Chan reflects on her 20-year journey in the field and highlights a pivotal year for neuroendocrine cancer care — including the FDA and EMA approvals of cabozantinib for both pancreatic and extrapancreatic NETs, and belzutifan for advanced pheochromocytomas and paragangliomas. She discusses how these breakthroughs are expanding treatment options and offering renewed hope to patients worldwide. Looking ahead, Dr. Chan shares her excitement about ongoing and upcoming clinical trials, including the COMPETE trial (PRRT vs. everolimus) and studies involving alpha-emitting PRRT agents, which may further transform clinical practice. 🎥 Highlights: Global collaboration through the International Neuroendocrine Cancer Alliance (INCA) Major new treatment approvals in 2025 (cabozantinib, belzutifan) Promising data from recent and emerging clinical trials (COMPETE, PRRT advances) A look toward the next wave of neuroendocrine cancer research 📍 Recorded live at the 2025 INCA Summit in Sofia, Bulgaria 👩⚕️ Guest: Dr. Jennifer Chan, President of NANETS 🎙️ Host: Lisa Yen, Neuroendocrine Cancer Foundation #NeuroendocrineCancer #INCA2025 #NANETS #Cabozantinib #Belzutifan #DanaFarber #OncologyResearch #PatientAdvocacy Play Video Play Video 05:29 Dr. Jennifer Chan & Dr. Del Rivero Discuss Advancing NET Research at the 2025 INCA Summit In this insightful conversation from the 2025 INCA Summit in Sofia, Bulgaria, leading neuroendocrine cancer experts Dr. Jennifer Chan (Dana-Farber Cancer Institute, USA) and Dr. Jaydira Del Rivero (National Cancer Institute, NIH) discuss the future of neuroendocrine tumor (NET) research, emphasizing the importance of clinical trials, patient engagement, and international collaboration. Dr. Del Rivero highlights the mission of INCA’s research committee—to align scientific priorities with patient needs, ensure greater patient participation in research, and develop better models and biomarkers for understanding and treating NETs. She explains the range of clinical research, from translational and molecular studies to natural history, prevention, and treatment trials, and how each contributes to improving diagnosis, therapy, and quality of life for patients. Dr. Chan underscores the vital role of patients as partners in research, helping shape meaningful endpoints and driving practice-changing discoveries like the CABINET trial, which recently led to new treatment approvals for neuroendocrine cancers. 🎥 Highlights: The mission of the INCA Research Committee Translational research and model development for NETs The value of biomarkers and molecular insights Understanding natural history studies and their role in cancer discovery Empowering patients as research partners Reflections on the impact of the CABINET study 📍 Recorded live at the 2025 International Neuroendocrine Cancer Alliance (INCA) Summit, Sofia, Bulgaria 👩⚕️ Speakers: Dr. Jennifer Chan & Dr. Jaydira Del Rivero #NeuroendocrineCancer #INCA2025 #ClinicalTrials #CancerResearch #PatientAdvocacy #DanaFarber #NIH #NANETS #CABINETTrial #OncologyResearch Play Video Play Video 05:30 Dr. Halfdanarson on ITM’s COMPETE Trial • 2025 ENETS • Neuroendocrine Cancer Foundation NANETS President Emeritus Dr. Thor Halfdanarson discussed the positive results from ITM’s Phase 3 COMPETE Trial at the 2025 ENETS Annual Medical and Scientific Conference in Krakow, Poland. The COMPETE trial was the first prospective, randomized phase 3 study comparing PRRT with an active treatment (everolimus or afinitor). For more information, visit https://www.ncf.net/clinical-trials. Play Video Play Video 05:27 Dr. Jennifer Chan Discusses Results of CABINET Trial (Cabozantinib) as Effective Treatment at ESMO24 Watch #LACNETS' exclusive view with incoming NANETS president Dr. Jennifer Chan at ESMO Congress 2024 (#ESMO24) in Barcelona, Spain, explaining the updated results of the CABINET trial evaluating Cabozantinib in Advanced Neuroendocrine Tumors. https://www.lacnets.org/post/positive-results-of-the-cabinet-trial-show-cabozantinib-as-a-new-effective-treatment-in-advanced-n Play Video Play Video 04:44 Dr. Aman Chauhan About the Most Exciting Progress in the Neuroendocrine Cancer Field @ NANETS Miami In this exclusive interview at NANETS Regional in Miami, NET expert Dr. Aman Chauhan from Sylvester Comprehensive Cancer Center shares the recent advances he's most excited about in the neuroendocrine cancer field. @SylvesterCancer @AmanChauhanMD @CarcinoidNETs @HealingNET1 @netcancerday @CureNETs @PheoPara #NETsMiami Play Video Play Video 03:51 Breaking News: NETTER-2 Trial Supports Lutathera® as 1st Line Treatment - Dr. Singh Explains The NETTER-2 phase 3 trial results show Lutathera® may be offered as first-line treatment for newly diagnosed grade 2 and 3 advanced gastroenteropancreatic neuroendocrine tumors (GEP-NETs). When compared to long-acting octreotide, Lutathera® reduced the risk of disease progression or death by 72% in patients with somatostatin receptors. “These positive results for Lutathera are practice-changing and offer new first-line treatment data for patients who have a significant unmet need. This study confirms the clinical benefit of first-line radioligand therapy (RLT) for newly diagnosed patients living with these types of advanced GEP-NETs. These findings should instill confidence among physicians in using Lutathera as a first-line treatment for patients with this life-threatening type of cancer.” — Dr. Simron Singh, NET expert, Sunnybrook Health Sciences Centre, Ontario, Canada. Read the full Novartis Press Release: https://www.novartis.com/news/media-releases/novartis-lutathera-significantly-reduced-risk-disease-progression-or-death-72-first-line-treatment-patients-advanced-gastroenteropancreatic-neuroendocrine-tumors Play Video Play Video 04:05 Dr. Soulen Talks About 2023 Highlights and His Hopes for 2024 Director of Programs and Outreach Lisa Yen interviews Dr Michael Soulen, Interventional Radiologist at Penn. He talks about the highlights of 2023 and shares his hopes for 2024. Play Video Play Video 02:14 Dr. Kunz Shares 2023 Highlights and Her Hopes for 2024 Director of Programs and Outreach Lisa Yen interviews NANETS Past President, Dr. Pamela Kunz. She talks about the highlights of 2023 and shares her hopes for 2024. Play Video Play Video 04:01 Dr. Strosberg Shares 2023 Highlights and Hopes for 2024 Director of Programs and Outreach Lisa Yen interviews Dr. Jonathan Strosberg, Medical Oncologist at Moffitt. He talks about the highlights of 2023 and shares his hopes for 2024. Load More Educational Videos on Research / Clinical Trials Educational Content on Research/Clinical... Play Video Play Video 33:12 "The Future of NETs: Evolving Treatments & Clinical Trials" • Jaydira Del Rivero, MD • 2024 "The Future of NETs: Evolving Treatments & Clinical Trials" with Jaydira Del Rivero, MD, Medical Oncologist/Endocrinologist, National Cancer Institute/National Institutes Of Health at the 2024 NET Cancer Day Symposium. Play Video Play Video 15:17 "The Latest in NET Medical Therapies" • Andrew Hendifar, MD, Cedars Sinai • 2024 NET Cancer Day Andrew Hendifar, MD, Medical Oncologist, Cedars Sinai, talks about the latest in NET medical therapies at the 2024 NET Cancer Day Symposium. Play Video Play Video 16:36 10. Clinical Trials: The Latest & Greatest • Pamela Kunz, MD • @NCFCancer Play Video Play Video 28:41 Clinical Trials 101/Opportunities to Access NET Resources&Trials • Del Rivero MD • 2023 NETCancerDay Clinical Trials 101/Opportunities to Access NET Resources&Trials • Del Rivero MD • 2023 NET Cancer Day Symposium • Santa Monica, CA • @NCFCancer Speaker: Jaydira Del Rivero, MD Medical Oncologist Endrocrinologist National Cancer Institute, NIH For more information, visit LACNETS.org Play Video Play Video 16:37 "Understanding the Latest NET Clinical Trials" Dr. Pamela Kunz • 2024 #LACNETS Patient Conference 15) Understanding the Latest NET Clinical Trials • 2024 Neuroendocrine Tumor Patient Conference Our 2024 LACNETS Neuroendocrine Tumor Patient Conference is designed for neuroendocrine cancer (NET) patients and caregivers to deepen your understanding of NETs. Whether you are newly diagnosed or have been living with NET for many years, we encourage you to attend: - Learn from top NET experts from across North America on a range of topics relevant to the NET patient journey. - Topics include work-ups, scans, surgery, carcinoid crisis, liver-directed therapy, PRRT, systemic treatments, treatment sequencing, NET guidelines, and clinical trials. - Gain insight into NET decision-making through the NET tumor board panel discussion. - Hear stories from NET patients and caregivers. - Join virtually, where you can pause, rewind, or replay. - There is no cost to attend. This event is made possible by the generosity of donors and sponsors. #LACNETS #neuroendocrinecancer #clinicaltrials #lungcancer #NETcancer #Letstalkaboutnets For more information, visit LACNETS.org. Play Video Play Video 01:30:11 LACNETS • "Navigating Clinical Trials: Expectations vs. Realities" with Taymeyah Al-Toubah •Aug 2023 Join LACNETS to hear Taymeyah Al-Toubah, MPH, Senior Research Project Manager at the Neuroendocrine Tumor Program of Moffitt Cancer Center. About Our Speaker: Taymeyah Al-Toubah, MPH Senior Research Project Manager Neuroendocrine Tumor Program at Moffitt Cancer Center, Tampa, FL Taymeyah Al-Toubah is a clinical researcher, currently at Moffitt Cancer Center, who has been in the research field for 10 years. She began her career in 2013 while obtaining her bachelor’s degrees in biomedical sciences and psychology, working in pediatric and neonatal research at Johns Hopkins All Children’s Hospital. In 2016, she shifted her career focus to oncology, beginning with phase I trials and working in all solid tumors. She completed her Master of Public Health in Epidemiology in 2017 and focused her graduate thesis on neuroendocrine tumors. In 2018, she switched departments to focus exclusively on NETs. From 2018 – 2023, she was the primary NET coordinator in the GI department, managing all clinical trials while leading the GI team, managing the NET clinic coordination amongst the ancillary departments, and working on all retrospective and non-interventional NET research. She has worked on protocol development, database analysis, and manuscript writing, resulting in over 30 published manuscripts and presented her research at several national and international oncology and NET conferences, with oral abstracts at several ENETS and NANETS conferences. In April 2023, she formally transitioned to a new position as a project manager of the NET program, where she will continue to mentor new coordinators while working on protocol development and writing, manuscript writing, non-interventional clinical trials, and retrospective NET research. One of her first major projects will be to curate and develop a master database of all NET patients seen at her institution that will provide the basis for all future NET research to be published at Moffitt. She is currently on the board of one of the first NET patient advocacy groups in Florida (FLaNET Carcinoid Community), which kicked off alongside the Tampa Regional NANETS meeting in November 2022. She is an active member of NANETS on the Continuing Education and Symposium Planning committees. She plans to dedicate the remainder of her career to this disease and community. Her ultimate plan is to attend medical school, specialize in medical oncology, and continue to serve the academic NET community and patient base as a physician and clinical investigator. For more information, visit LACNETS.org. Play Video Play Video 17:07 Clinical Trials: Why, What & How • Josh Mailman • 2023 LACNETS Patient Education Conference Watch "Clinical Trials: Why, What & How" with Josh Mailman. This presentation is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. For more information, visit LACNETS.org. Play Video Play Video 18:39 The Latest in NET Clinical Trials • Dr. Simron Singh • 2023 LACNETS Patient Education Conference Watch "The Latest in NET Clinical Trials" with Dr. Simron Singh. This presentation is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. For more information, visit LACNETS.org. Play Video Play Video 01:34:45 LACNETS • "Novel Translational Research for Metastatic NET Patients at the NCI" • Jan 2023 Join LACNETS for this special educational event. What if you could both undergo surgery for your metastatic disease and also donate your liver tumor to find a cure for NET? Learn how you can contribute to NET research. The NET team at the National Cancer Institute (NCI) will give us a behind-the-scenes look at their innovative NET research. Be inspired by their hard work and dedication to the NET community. For more information, visit LACNETS.org. Load More In Depth Look at Active Clinical Trials In Depth Look: Active Clinical Trials Play Video Play Video 12:34 May 19, 2025: Dr. Aman Chauhan discusses the DAREON-5 & DAREON-7 Studies DAREON-5 is a phase 2 trial studying BI 764532, an antibody-like molecule (DLL3/CD3 bispecific) that may help the immune system fight cancer. This is a clinical trial for high grade neuroendocrine cancers. It is open to adults with small cell lung cancer and other neuroendocrine cancers including extra-pulmonary neuroendocrine carcinoma and large cell neuroendocrine carcinoma. The purpose of the study is to find a suitable dose of BI 764532. The study is sponsored by Boehringer Ingelheim. For more information, visit https://www.lacnets.org/clinical-trials-1/dareontm--5%3A-dll-3-bite-for-neuroendocrine-cancers. Play Video Play Video 16:57 SVV-001 + Ipi-Nivo in Patients With Poorly Differentiated NEC or Well-Differentiated High-Grade NET Dr. Aman Chauhan at the Sylvester Comprehensive Cancer Center, University of Miami, discusses SVV-001 + Ipi-Nivo in Patients With Poorly Differentiated (NEC) or Well-Differentiated High-Grade (NET) tumors. Recorded: April 22, 2025 For more information, visit https://www.ncf.net/clinical-trials-1/svv-001 Play Video Play Video 29:35 IL13Rα2 CAR T Cell Study for Solid Tumor Cancers • Dr. Anusha Kalbasi Dr. Anusha Kalbasi from Stanford discusses the immunotherapy study using IL13Rα2 CAR T cell for the treatment of metastatic solid tumors on March 27, 2024. For more information about this trial, visit https://www.lacnets.org/clinical-trials-1/il13r%CE%B12-car-t-cell-study-for-solid-tumor-cancers. Visit the LACNETS Clinical Trials page for more information at https://www.lacnets.org/clinical-trials. Play Video Play Video 05:10 Lu-177 + Carboplatin, Etoposide, and Atezolizumab in SCLC • Dr. Aman Chauhan Dr. Aman Chauhan at Sylvester Comprehensive Cancer Center, University of Miami discusses the Lu-177 + Carboplatin, Etoposide, and Atezolizumab in SCLC. Recorded: June 20, 2024 Visit the LACNETS Clinical Trials page for more information at https://www.lacnets.org/clinical-trials. Play Video Play Video 05:44 Alpha PRRT with Ac-225 + Standard of Care in SSTR+ SCLC • Dr. Aman Chauhan Dr. Aman Chauhan at Sylvester Comprehensive Cancer Center, University of Miami discusses the Alpha PRRT with Ac-225 + Standard of Care in SSTR+ SCLC. Recorded: June 20, 2024 Visit the LACNETS Clinical Trials page for more information at https://www.lacnets.org/clinical-trials. Play Video Play Video 08:26 DAREON™-9: DLL-3 BiTE + Topotecan in Small Cell Lung Cancer (SCLC) • Dr. Aman Chauhan Boehringer Ingelheim is sponsoring a phase 1 study, a phase 1 trial studying BI 764532, an antibody-like molecule (DLL3/CD3 bispecific or “BiTE”) that may help the immune system fight cancer. The study is in adults with extensive stage small cell lung cancer who have previously received platinum-based chemotherapy and are eligible to receive topotecan treatment. The purpose of this study is to find out the highest dose of BI 764532 that people can tolerate when taken together with topotecan, a chemotherapy treatment called topoisomerase 1 inhibitor, that works by blocking a chemical (topoisomerase 1) that helps cancer cells repair and separate DNA when they divide. Participants get BI 764532 and topotecan as infusions into a vein. As an alternative, topotecan may also be taken orally (tablets). Visit the LACNETS Clinical Trials page for more information at https://www.lacnets.org/clinical-trials. Play Video Play Video 11:35 LACNETS • Lu177 Dotatate PRRT + M3814 (Peposertib) • Dr. Aman Chauhan Dr. Aman Chauhan discusses Lutetium Lu 177 dotatate in combination with M3814 (peposertib). IDENTIFIER (ClinicalTrials.gov): NCT04750954 Visit the LACNETS Clinical Trials page for more information at https://www.lacnets.org/clinical-trials. Play Video Play Video 04:48 June 2024: Dr. Aman Chauhan Discusses the Alpha PRRT with Pb-212 VMT Study Dr. Aman Chauhan Discusses the Alpha PRRT with Pb-212 VMT Study. Recorded June 2024. Visit the LACNETS Clinical Trials page for more information at https://www.lacnets.org/clinical-trials. Play Video Play Video 08:42 June 2024: Dr. Aman Chauhan discusses Phase 2 LUTATHERA (Lu-177) + Triapine Study Dr. Aman Chauhan discusses Phase 2 LUTATHERA (Lu-177) + Triapine Study. Recorded in June 2024. Visit the LACNETS Clinical Trials page for more information at https://www.lacnets.org/clinical-trials. Load More Patient Stories: Clinical Trials Patient Stories: Clinical Trials Play Video Play Video 04:08 Patient Story: NET Patient shares about her experience in a clinical trial (LACNETS) NET Patient Mary shares about her experience in a clinical trial (Everolimus or Afinitor). November 7, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 21:23 NET Clinical Trial: An Oral Somatostatin Analogue in Patients with Carcinoid Syndrome - Jan 2024 Crinetics is sponsoring a clinical trial to evaluate the safety, pharmacokinetics (PK), and exploratory dose response of paltusotine treatment, an oral (pill) somatostatin analogue in patients with carcinoid syndrome. Learn more about the trial and inclusion criteria here. This trial is currently open at Hoag Cancer Center in Newport Beach, California with Dr. Michael Demeure. If interested, contact Clinical Research Nurse Coordinator Jericho Rabago via direct line 949-764-6796 or email Jericho.Rabago@hoag.org. Learn about more clinical trials here: lacnets.org/clinical-trials Play Video Play Video 07:10 Patient Story: NET Patient shares her experience with Alpha PRRT NET Patient DeAnne shares her experience with Alpha PRRT. March 16th, 2021 To learn more about the LACNETS , visit www.LACNETS.org. < Back to Topics Next Topic >

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