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We thank Jaydira Del Rivero, MD, for reviewing this blog post. In March 2025, the U.S. FDA approved a new treatment option for neuroendocrine tumors: cabozantinib. (Cabometyx® is the brand name of this medication, manufactured by Exelixis.) Although this pill has long been used to treat other cancers, it is now approved for patients 12 years and older with previously treated, advanced neuroendocrine tumors. 👉 For background on the CABINET trial and what the trial data showed, read our March 26, 2025 blogpost: Positive Results of the CABINET Trial Show Cabozantinib as a New, Effective Treatment in Advanced Neuroendocrine Tumors  and watch our Nov 2025 Interview with Dr. Aman Chauhan Update on Cabozantinib . Cabozantinib is an oral, non-chemotherapy pill from the category of medications called a VEGF tyrosine kinase inhibitor (or TKI) . It's a targeted therapy that works to inhibit the growth of blood vessels in the tumors and also can work to slow growth.  As more patients begin taking cabozantinib, it has become one of the most frequently discussed topics in our weekly support groups. Many people want to know what to expect, how to take the medication correctly, how it may affect daily life, and what practical steps can help them feel more prepared. Below are tips and tricks gathered from firsthand patient and caregiver experience, including NET caregiver Lisa Yen’s “show and tell,” which offers practical tools she and her husband found helpful when preparing for Cabozantinib. Important: Always consult your healthcare team with any questions or concerns about your care. This information is provided solely for educational purposes to support and inform patients and caregivers. It is not intended to substitute for professional medical advice, clinical judgment, diagnosis, or treatment, nor should it replace direct discussions with your healthcare providers. Download the transcript of this video >>> Key Resources and Helpful Items 1. Order the free Cabometyx® Patient Care Kit and join the Be Connected  support program The Cabometyx Patient Care Kit is available directly from the manufacturer, Exelixis and includes: Samples to help manage common side effects Educational materials on cabozantinib A treatment journal to track symptoms, blood pressure readings, and communication with your care team A patient handbook with tips and guidance Many patients find this kit reassuring and helpful to have on hand. 2. Listen to Podcast Episode 50: Spotlight on Pharmacists Pharmacists, especially oncology pharmacists, play a key role in helping patients navigate targeted oral therapies. This episode discusses: How to take cabozantinib safely What to avoid Common drug interactions Ways to manage side effects How pharmacists can support you throughout treatment Udderly Smooth® cream Cabozantinib can cause hand foot syndrome, a side effect that may lead to redness, sensitivity, or discomfort in the hands and feet. Patients often find that the over-the-counter Udderly Smooth cream: Helps moisturize dry or irritated skin Is non-greasy Works well when applied at bedtime Blood Pressure Cuff Cabozantinib can increase blood pressure, so monitoring at home is essential.  Tips: Check your blood pressure at the same time each day, preferably in the morning Record each reading so your care team can identify trends Know the parameters for when to call your doctor.  Your doctor may prescribe medications to manage your blood pressure. Ask your doctor who you should be reporting your blood pressure readings to and who will be the one to prescribe and manage high blood pressure. 5. Helpful Items for Nausea or Altered Taste Some people taking cabozantinib experience nausea or altered taste. The following tips and tools may help manage these symptoms: Lemon or lime  Some people find adding a few drops of lemon or lime to their water helps with altered taste or nausea.  Herbal inhaler   Some patients find that inhaling soothing herbal scents can help ease nausea. Lozenges Products such as Organic Morning Ease by Traditional Medicinals  or Tummy Drops peppermint lozenges  may help soothe nausea. Nonmetal utensils Using bamboo or other non-metal utensils may help reduce metallic taste during meals, if this is one of your symptoms. Biotène® oral rinse Some patients experience dry mouth, mouth sores, or changes in taste. An alcohol-free over-the-counter rinse like Biotène can soothe mouth dryness, reduce discomfort, and make eating easier when used before meals. If nausea persists, ask your doctor about prescription anti-nausea medications. Your care team can help determine what is appropriate for you. The following guidance is adapted from patient education materials provided by the manufacturer of cabozantinib (Exelixis, maker of the FDA-approved drug Cabometyx®). For more information, visit:   https://www.cabometyx.com/resources Always discuss any questions or concerns with your healthcare team before making changes or trying new strategies. How to Take Cabozantinib Swallow tablets whole. Do not crush, chew, or dissolve them Take on an empty stomach: one hour before eating or two hours after eating Take it at the same time each day. Any time of day is fine as long as it is consistent If you miss a dose and more than 12 hours have passed, skip it and take the next scheduled dose Food and Drug Interactions While taking cabozantinib, do not eat or drink grapefruit, grapefruit juice, or grapefruit-containing products because they can affect how the medication is absorbed. Inform your health care provider of all medications you take, including prescription medications, over-the-counter products, vitamins, and herbal supplements. This helps your care team identify any possible interactions and keep you safe during treatment. Monitoring Symptoms Track symptoms such as: Mouth sores Changes in taste Dry mouth Hoarseness or voice changes Skin and hair changes, such as changes in color, dry skin, rash Fatigue Digestive issues such as nausea or diarrhea Daily tracking helps your provider decide whether dose adjustments, side effect management strategies, or treatment breaks are needed. Communication Is Key Frequent communication with your healthcare team, supported by your journal or tracking system, helps ensure the treatment is safe, tolerable, and effective. Final Thoughts Starting a new medication can bring uncertainty, especially when it affects daily routines. These tips and tools have helped many people feel more prepared and empowered as they begin Cabozantinib. For more information and resources, explore our video library  and podcasts . You are not alone. We are here to support you.

Dear Neuroendocrine Cancer Community, Dr. Richard R.P. Warner For six decades years, the Carcinoid Cancer Foundation (CCF) has been a pillar of education, advocacy, and support for the neuroendocrine tumor (NET) community. Founded by the late Dr. Richard R.P. Warner , CCF helped shape the modern landscape of NET patient education and touched countless lives. The Neuroendocrine Cancer Foundation (NCF) now enters a new chapter as we carry forward this legacy. We have been entrusted with continuing programs and resources that have supported patients and families for decades. Serving as the successor to this 60-year foundation is both an honor and a responsibility we do not take lightly. We are grateful for the trust placed in NCF to steward this work and build upon Dr. Warner’s vision. That trust reflects a shared commitment to ensuring people affected by neuroendocrine cancer have continued access to reliable information, compassionate support, and meaningful connection. Our mission remains clear: no one facing neuroendocrine cancer should feel alone. We will continue providing trusted education, patient support, and community engagement while investing in initiatives that advance care, awareness, and quality of life. How We Will Continue This Important Work Over the past two years, NCF has worked alongside CCF to ensure continuity of support through the patient support line, the Luncheon with the Experts (LWTE)  webinar series, Stories of Hope , and other educational initiatives. These programs will continue under NCF. Neuroendocrine Cancer Provider Directory Building on CCF’s “Find a Doctor” database, NCF is partnering with the Neuroendocrine Tumor Research Foundation (NETRF) to combine two specialist databases into a single, comprehensive Neuroendocrine Cancer Provider Directory. This unified, up-to-date resource will help patients and caregivers connect with experienced specialists and is planned for launch later this year. LWTE Webinars, Stories of Hope, and Support Line These cornerstone programs will continue under the NCF umbrella. We invite you to stay connected and engaged with our community: Facebook Instagram YouTube X (formerly Twitter) LinkedIn We extend our sincere gratitude to CCF for its decades of service and to CCF's CEO Keith Warner, and COO Grace Goldstein (retired in 2022), for ensuring Dr. Richard Warner’s legacy continues. We also thank you—the neuroendocrine cancer community—for your continued trust as we carry this work forward. With respect and gratitude, NCF Team Other Resources Learn more about the Neuroendocrine Cancer Foundation Sign up for our upcoming patient programs

2025 was a year of meaningful progress in neuroendocrine cancer. New treatments, new clinical trial data, and expanded research efforts continue to improve care for people living with diverse neuroendocrine cancers including neuroendocrine tumor (NET), neuroendocrine carcinoma (NEC), and pheochromocytoma and paraganglioma (PPGL). Below is an overview of some of the most important developments of the year. Year-in-Review: NET and NEC Updates Download the transcript of this video >>> Dr. Udhay Grewal summarizes major advances from conferences and clinical trials across the NET and NEC landscape. Key Advances Continued progress in alpha PRRT, including completion of the ACTION 1 Actinium 225 trial. FDA approval of belzutifan for pheochromocytoma and paraganglioma. Promising results from DLL3 targeted therapies for high grade NEC. Ongoing development of tri-specific antibodies and DLL3 radioligand therapies. New Developments in Neuroendocrine Tumors (NETs) Download the transcript of this video >>> 2025 brought several promising updates for patients with well-differentiated NETs. Dr. Aman Chauhan highlights the following: Key Advances Paltusotine : A once-daily pill being studied for carcinoid syndrome. Alpha PRRT : Early activity seen with Lead-212 and Actinium-225 therapies. Combination PRRT : Triapine plus Lutetium-177 shows encouraging safety and early effectiveness. New targeted therapy : Zanzalintinib is being evaluated as a next-generation VEGF inhibitor. New Developments in Neuroendocrine Carcinoma (NEC) Download the transcript of this video >>> High-grade NEC has historically had fewer treatment options, but 2025 delivered real momentum. Dr. Aman Chauhan discusses the following: Key Advances DLL3 T-cell engagers:  Including tarlatamab and the investigational drug obrixtamig. Oncolytic virus therapy:  Seneca Valley Virus combined with immunotherapy is being studied. DLL3 radiopharmaceuticals:  New therapies under development that may bring theranostics to NEC. COMPETE Trial Results Presented at ENETS 2025 Download the transcript of this video >>> At the ENETS Congress in March 2025, NANETS President Emeritus Dr. Halfdanarson explained key results from the COMPETE phase 3 trial comparing PRRT Lu 177 DOTATOC with everolimus. He also discusses what it means for patients. Key Takeaways PRRT was more effective than everolimus in delaying tumor growth. Side effects were expected and consistent with previously known PRRT safety. Quality-of-life data are pending, but past studies suggest favorable outcomes. Everolimus remains an important option. The goal is ensuring patients receive all effective treatments over time. 2025 Highlights and Future Directions from NANETS President Dr. Jennifer Chan Download the transcript of this video >>> At the September 2025 INCA Summit in Sofia, Bulgaria, NANETS President, Dr. Jennifer Chan reflected on the progress of the past year and shared what she is most excited about for the future: Key Highlights Cabozantinib approval  Dr. Chan discussed the impact of cabozantinib’s approval for both pancreatic and extra pancreatic NETs and described how this expands treatment access for patients worldwide. Belzutifan approval for PPGL   She highlighted the approval of belzutifan as a major step forward for people with pheochromocytoma and paraganglioma. Broader research momentum  Growth in the number of physicians, scientists, and centers engaged in NET and NEC research has transformed the field. Upcoming trial readouts  Dr. Chan emphasized the importance of recently completed studies, including COMPETE, and expressed enthusiasm for ongoing alpha PRRT studies and other next generation therapies. Cabozantinib Results Highlighted at ESMO 2025 Download the transcript of this video >>> In October 2025, new subgroup data on lung and thymic NET from the CABINET study were presented at ESMO. This followed the FDA approval of cabozantinib in March 2025. Dr. Aman Chauhan explains what this means for patients: Key Takeaways Strong benefit seen in lung NETs, including typical and atypical carcinoids. Activity observed in higher grade well-differentiated NETs. An important treatment option for people who are not eligible for PRRT or somatostatin analogs. NANETS 2025: Top 12 Highlights Our Neuroendocrine Cancer Foundation podcast with Dr. Will Pegna offers an easy-to-understand review of the most important updates from the 2025 NANETS symposium. Visit the podcast page for more information and resources >>> Bridging Inequities in Neuroendocrine Cancer Care Download the transcript of this video >>> A meaningful highlight of 2025 was the growing recognition of inequities in neuroendocrine cancer care and the expanding commitment across the field to address them. Dr. Grewal, who was honored with the inaugural NANETS Diversity, Equity, and Inclusion Award, shared why this work is essential and how patients and advocates can help drive meaningful change. Key Insights Many patients seen in everyday practice do not resemble those typically enrolled in clinical trials. Racial and ethnic minority groups, as well as rural patients, often face major barriers to receiving standard of care treatment and participating in research. Recent studies highlight disparities in clinical trial enrollment and end-of-life care, including lower access to palliative care among Black patients. Researchers are using NETPRO and other datasets to better understand gaps and inform future solutions. Why This Matters Dr. Udhay Grewal emphasized that progress is meaningful only when it reaches everyone who needs it. As new therapies emerge, ensuring equitable access is essential. How Patients and Caregivers Can Help Get involved in advocacy and awareness efforts. Share your experiences to help shape research and improve care. Partner with organizations like NCF, NANETS, and ASCO to support equity-focused initiatives. Looking Ahead to 2026 We look forward to the launch of new clinical trials and the results of several important ongoing studies, including those evaluating combination PRRT strategies, multiple alpha PRRT agents, DLL3-targeted therapies, and new oral treatment options. Progress is accelerating, and as research expands, so do the treatment options and sources of hope available to patients. As our speakers emphasized, meaningful advances are happening. There is real reason to be hopeful. And together, we can continue to move the field forward.  THANKS TO OUR SPONSORS

The Neuroendocrine Cancer Foundation serves the neuroendocrine cancer (or NET) community by connecting patients, caregivers, and medical professionals. Find educational resources and connect with other NET patients and caregivers. Read Our Special Message Podcast Blog Resources by Topic LATEST FROM NCF New - "Luncheon With The Experts" with Dr. Del Rivero Blog Pos t - "Continuing A 60-Year Legacy" "2025 Highlights in Neuroendocrine Cancer" New Blogpost - "The Email That Changed Everything" - Dusty Hurley New Educational Event - "The Latest on Immunotherapy for Neuroendocrine Cancer" with Dr. Aman Chauhan New Podcast Episode - "Spotlight on Pharmacists" with Amanda Cass, PharmD, BCPS, BCOP Watch "2025 Updates in NET" with Dr. Aman Chauhan Watch "The Latest in High-Grade Neuroendocrine Carcinoma (NEC)" with Dr. Aman Chauhan Watch "The Latest Advances in Neuroendocrine Cancer: An Update with Dr. Udhayvir Grewal" Watch "Bridging Inequities in Neuroendocrine Cancer Care: A Conversation" with Dr. Udhayvir Grewal Clinical Trial Update - Tarlatamab in DLL3-Expressing Tumors Including Neuroendocrine Neoplasms SIGN UP FOR EMAIL Stay up-to-date with neuroendocrine cancer news, educational information, monthly newsletters and ways to connect with other neuroendocrine cancer patients and caregivers. Make a Difference Donate today and help us provide support, and information on diagnosis, treatment options, research, and resources for NET patients and caregivers. DONATE NCF EVENTS Luncheon With The Experts with Dr. Rivero April 30, 2026 Virtual Join Regional Neuroendocrine Cancer Patient Conference in Atlanta, GA May 16, 2026 In-Person Join Visit our events page for more information >>> MAKE A DIFFERENCE Donate today and help us provide support, and information on diagnosis, treatment options, research, and resources for neuroendocrine cancer patients and caregivers. Donate LATEST ON CLINICAL TRIALS Clinical Trials News Play Video Play Video 06:31 Update on Cabozantinib Neuroendocrine Cancer Foundation Interview with Dr. Aman Chauhan • 2025 Clarification: The recent CABINET subgroup analysis presented at ESMO included thoracic NET patients (lung and thymic), with approximately 80% being lung NETs. Additionally, in the epNET cohort, about 20% of patients had lung NETs. Learn about one of the biggest breakthroughs in neuroendocrine tumor (NET) treatment: the FDA approval of Cabozantinib for metastatic NETs. In this in-depth interview, the Neuroendocrine Cancer Foundation’s Lisa Yen speaks with NET expert Dr. Aman Chauhan about the landmark CABINET clinical trial, new data from ESMO 2025, and what this means for patients with pancreatic NETs, extra-pancreatic NETs, lung NETs, and thymic NETs. Dr. Chauhan explains why Cabozantinib—a VEGF TKI targeted therapy—is transforming care for patients who often have limited treatment options, especially those with somatostatin receptor–negative lung NETs who may not qualify for somatostatin analogs (SSA) or PRRT. He also discusses promising results in higher-grade (G2–G3) well-differentiated NETs, an area with few effective treatment choices. ✔ What the CABINET trial revealed ✔ Why Cabozantinib is effective across multiple NET types ✔ How lung and thymic NET patients (thoracic NETs) benefited—~80% of the thoracic subgroup were lung NETs ✔ How this approval is changing clinical practice ✔ Introduction to Zanzalintinib (Zanza) — a next-generation VEGF TKI now entering phase 3 trials ✔ How to find NET clinical trials near you on ClinicalTrials.gov If you’re a patient, caregiver, or healthcare professional looking for new NET treatment options, this update provides essential insights into where the field is headed and how future drugs are being developed. 🔗 Search for NET clinical trials: https://www.ncf.net/clinical-trials Play Video Play Video 04:02 The Latest Advances in Neuroendocrine Cancer: An Update with Dr. Udhayvir Grewal • 2025 In this conversation, Dr. Udhayvir Grewal from the Winship Cancer Institute at Emory shares the newest developments in neuroendocrine cancer (NET/NEC) research, treatment, and clinical trials — offering clarity, progress updates, and hope for patients and caregivers in the NET community. 🔬 Key Highlights: - Alpha PRRT (Alpha Radioligand Therapy): New investigational treatments including Lead-212 Dotamtate, Lead-212 VMT-Alpha-NET, and Actinium-225 Dotatate (ACTION-1) are showing promising early results and may change the treatment landscape for NET patients. - New FDA-Approved Therapy for Pheochromocytoma & Paraganglioma: Belzutifan is now available for a subset of patients, supported by durable response data from the LITESPARK study. - Advances in High-Grade Neuroendocrine Carcinoma: Encouraging results are emerging from trials targeting DLL3, including obrixtamig, radioligand therapies, ADCs, and tri-specific drugs currently in development. 📍 Next Steps & Resources To explore active clinical trials and educational resources, visit: 🔗 NCF.net #NeuroendocrineCancer #NETCancer #NeuroendocrineTumor #CancerResearch #PRRT #ClinicalTrials #PatientEducation #NCF #NETUpdates #AlphaPRRT #DLL3 Play Video Play Video 06:26 The Latest in High-Grade Neuroendocrine Carcinoma (NEC): A Conversation with Dr. Chauhan • 2025 In this important update, Dr. Aman Chauhan shares the newest and most promising developments in treatment and research for high-grade neuroendocrine carcinoma (NEC) — a rare and aggressive form of neuroendocrine cancer. For decades, treatment options for NEC have been limited and outcomes have remained largely unchanged. Today, that reality is beginning to shift — and this conversation highlights the progress bringing renewed hope to patients and families. Highlights in This Discussion: - DLL3-targeted immunotherapy, including T-cell engagers such as tarlatamab and emerging therapies like Obrixtamig - Ongoing progress in clinical trials for high-grade NEC - Early success with radiopharmaceutical approaches targeting DLL3 - Exploration of oncolytic viruses, including the Seneca Valley Virus combined with ipilimumab (ipi) and nivolumab (nivo) - Advances in next-generation immunotherapy, including CAR-T and checkpoint combinations 📍 Want to Learn More? To explore active or upcoming clinical trials for NEC, visit the Neuroendocrine Cancer Foundation’s Clinical Trials Guide at NCF.net/clinical-trials #NeuroendocrineCancer #NEC #HighGradeNEC #ClinicalTrials #Immunotherapy #DLL3 #PatientEducation #NETCancer #NeuroendocrineTumor #CancerResearch #NCF 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 NETTER-2 Trial Supports Lutathera® as 1st Line Treatment >>> Dr. Jennifer Chan Announces the CABINET Trial Data on Cabozantinib >>> Clinical Trials Guide WATCH 500+ Videos on Various Topics 2025 NET Cancer Day Symposium LISTEN Hear Experts Answer Top 10 Questions on Each Topic "Against the Tide: The Mary Donlevy Story" TAKE ACTION Learn How You Can Share Your Story RECENT EDUCATIONAL EVENTS FOR PATIENTS Play Video Play Video 01:33:05 Novel Targeted Therapies in Neuroendocrine Cancers • 2026 NCF Event • Mar 9, 2026 Some Topics Covered: Neuroendocrine, NET, NEC, High-grade Clinical trials, PRRT, RLT, Antibody Drug Conjugate (ADC), DLL3 ABOUT Learn from a discussion of targeted therapies in neuroendocrine cancer, one of the fastest-growing areas of NET treatment. Unlike traditional chemotherapy, targeted therapies focus on specific pathways or features of cancer cells. Understanding how these treatments work can help patients feel more confident and informed when discussing options with their care team. In this session, Dr. Rohit Thummalapalli, medical oncologist at Memorial Sloan Kettering Cancer Center, explores novel, innovative targeted treatments used or being studied in NETs, such as DLL3 and antibody–drug conjugates (ADCs). Dr. Thummalapalli will explain what these therapies are, how they work, and why they are becoming increasingly important in NET care. Whether you’re newly diagnosed or considering later-line treatments, this webinar will help you better understand the evolving landscape of targeted therapy and what it may mean for your care. Visit the event page at https://www.ncf.net/events/mar2026 Play Video Play Video 01:29:26 The Latest in Neuroendocrine Cancer Clinical Trials • 2026 NCF Event • Feb 20, 2026 Topics Covered: Neuroendocrine, NET, clinical trials, PRRT, RLT, neoadjuvant trials, adjuvant trials, metastatic NET, symptom control ABOUT Join us for an overview of the latest clinical trials in neuroendocrine cancer with Dr. Heloisa Soares, a medical oncologist and physician-scientist at the Huntsman Cancer Institute (HCI) in Salt Lake City. Dr. Soares will walk through key neuroendocrine cancer clinical trials including what they are studying, what makes them exciting, and how they may shape future treatment options. She will also explain why clinical trials matter, how they benefit patients, and what to consider when exploring whether a trial might be right for you. Whether you’re a patient, caregiver, or simply trying to stay informed, this webinar will provide clear, practical insights to help you better understand emerging research and what it means for the neuroendocrine cancer community. The presentation focuses on current NET clinical trials. For information on NEC clinical trials, go to our high grade resources page: https://www.ncf.net/high-grade-nen-resources. Visit the event page at https://www.ncf.net/events/feb2026 Play Video Play Video 01:31:30 The Latest on Immunotherapy for Neuroendocrine Cancer • 2025 NCF Event • Dec 11, 2025 Immunotherapy is an exciting and rapidly advancing area in the treatment of neuroendocrine cancer. Join Dr. Aman Chauhan, Medical Oncologist at the University of Miami Sylvester Cancer Center, as he discusses the latest developments in immunotherapy for neuroendocrine cancer. This webinar will cover current standard-of-care treatments as well as cutting-edge clinical trials involving DLL3-targeted therapies, oncolytic viruses, CAR T-cell therapy, and combination approaches. Whether you’re newly diagnosed or exploring new treatment options, this session will help you better understand the evolving landscape of immunotherapy in neuroendocrine cancer. Aman Chauhan, MD Medical Oncologist University of Miami Sylvester Cancer Center 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 the 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. Visit https://www.ncf.net/events/dec2025 for more information. Play Video Play Video 01:27:39 Understanding Alpha & The Evolving PRRT Landscape • Dr. Grewal • 2025 NCF Event • September 22, 2025 The field of PRRT (Peptide Receptor Radionuclide Therapy) is evolving rapidly, and patients are hearing more about new developments like alpha therapies, the recent NETTER-2 and COMPETE trial results, and other advances. Join medical oncologist Dr. Udhayvir Singh Grewal from the Winship Cancer Institute of Emory University as he breaks down what these changes mean for people living with neuroendocrine cancer. This webinar will help patients and caregivers make sense of emerging research and therapies—and what they may mean for the future of NET treatment. For more information, visit https://www.ncf.net/events/sep2025. Play Video Play Video 01:25:23 Nutrition & Diet Considerations for NETs • 2025 NCF Event • August 26, 2025 Nutrition can play a key role in living well with neuroendocrine cancer (neuroendocrine tumors or NETs). Join NET dietitian Meghan Laszlo for an informative session on nutrition and diet considerations for people living with neuroendocrine cancer. She will cover key topics including the use of pancreatic enzymes, managing hyperglycemia, navigating special diets, and understanding supplements. Whether you're newly diagnosed or further along in your journey, this webinar offers practical guidance to help you make informed nutrition choices that support your health and quality of life. For more information, visit ncf.net. Play Video Play Video 01:16:25 Living with NET: The Patient Perspective • 2025 NCF Event • July 10, 2025 Patients share their experiences on topics, including decision-making, coping strategies, lessons learned, challenges, and navigating relationships while living with neuroendocrine cancer. Hear about their personal journeys—filled with resilience, realities, and hope, that offer powerful insight into what it's like living with neuroendocrine cancer. Visit NCF.net/July2025 for more information. Play Video Play Video 01:33:27 "Evolving Management of Carcinoid Heart Disease" • Prashanth Venkatesh, MD, FACC • April 29, 2025 Learn from Cardiologist and Congenital Heart Disease Specialist, Dr. Prashanth Venkatesh from Cedars-Sinai Smidt Heart Institute in a virtual educational event on carcinoid heart disease. Dr. Venkatesh demystifies the topic and shares the latest developments in its diagnosis and treatment, including a novel minimally invasive approach to replace heart valves damaged by carcinoid heart disease. For more information and resources, visit NCF.net. Play Video Play Video 01:30:51 "Understanding Treatments for NETs and Rationale for Sequencing of Therapy" • Dr. Wolin • Apr 1, 25 Learn from internationally-renowned neuroendocrine cancer expert Dr. Edward Wolin in a discussion on the latest in neuroendocrine tumor treatments and understanding how to sequence them. Dr. Wolin has pioneered many of the NET treatments including somatostatin analogues (SSAs, sandostatin and octreotide), mTOR inhibitors (i.e. everolimus), anti-angiogenic drugs (i.e. cabozantinib), and peptide receptor radiotherapy (PRRT, i.e. Lutathera). Join us for an insightful presentation and live question and answer session. Learn more at https://www.ncf.net/events/apr2025 LATEST PODCAST EPISODES LISTEN LISTEN LISTEN LISTEN RESOURCES & INFORMATION FOR YOU Meetings Register for the upcoming educational webinars and programs Support Groups Learn about the NET patient and caregiver support groups Podcast A podcast series where neuroendocrine cancer experts answer the top 10 FAQs on various topics Resources Check our resource navigation guide which covers various topics from treatment options to wellness NETCONNECT A peer support system that connects newly-diagnosed patients with mentors Newly Diagnosed Newly-diagnosed NET patients can begin exploring here for resources and support NET VITALS A tool for patients and healthcare professionals to share vital information about a patient’s neuroendocrine cancer Clinical Trials Explore open clinical trials here Blog Read about various NET topics, inspiring survival stories, and tips to live fully and richly with cancer Patient & Caregiver Stories Find inspiration and hope from NET patient and caregiver stories Spanish Resources Explore Spanish-language resources for NET patients and caregivers Health Coaching Learn how you can receive one-on-one coaching sessions available to NET patients and caregivers ABOUT THE NEUROENDOCRINE CANCER FOUNDATION Why Our Work Matters The Neuroendocrine Cancer Foundation (NCF) exists to ensure no one faces neuroendocrine cancer alone. We support patients, caregivers, and clinicians through education, connection, and compassionate resources. Educate Educational Events Luncheon With The Experts w/Live Q&A In-Person Patient & Caregiver Events Online Video Library (YouTube & Web) Resource Library on 25 Topics Podcast Spanish Resources Support Support Line Resources for Newly Diagnosed Support Groups Health & Wellness Retreat Wellness Coaching Connect NETCONNECT Peer-to-Peer Program NET VITALS NET INTRO Inform Clinical Trials Guide Amplify Patient Voice Neuroendocrine cancer (also known as NET, neuroendocrine tumor, neuroendocrine neoplasm, carcinoid, or neuroendocrine carcinoma) is a rare/uncommon and complex disease. Only 7 in 100,000 people in the U.S. are diagnosed each year Symptoms vary widely and are often misunderstood Diagnosis can take several years Many patients do not meet someone else living with NET until they find NCF Patients often struggle to find specialists, up-to-date treatment guidance, and emotional support. NCF fills those gaps by offering what patients need most: credible education, expert access, and a community that understands. NCF provides these life-changing resources — ensuring patients and families receive guidance when it matters most. I was officially diagnosed on June 29, 2022. I didn’t even know NETs existed. And today...less than a month later, I’ve learned so much thanks to the incredible resources that exist as a result of the beautiful NETs community. The resources available, especially the videos from the (Neuroendocrine Cancer Foundation) and the NET VITALS document, are so life-giving and helpful for the newly diagnosed. The Neuroendocrine Cancer Foundation contributes so much useful information to the NET community. — NET Patient

See videos of recent educational events on various topics on neuroendocrine cancer Recent Events "Just Diagnosed With Neuroendocrine Cancer? What to Know and Understand" April 23, 2026 Being newly diagnosed with neuroendocrine cancer (NETs) 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 NET journey. Watch "Luncheon With The Experts" with Dr. Boris G. Naraev Mar 26, 2026 “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. Watch "Novel Targeted Therapies in Neuroendocrine Cancers" Mar 9, 2026 Join us for a discussion of targeted therapies in neuroendocrine cancer, one of the fastest-growing areas of NET treatment. Unlike traditional chemotherapy, targeted therapies focus on specific pathways or features of cancer cells. Understanding how these treatments work can help patients feel more confident and informed when discussing options with their care team. Watch "The Latest in Neuroendocrine Cancer Clinical Trials" Feb 20, 2026 Join us for an overview of the latest clinical trials in neuroendocrine cancer with Dr. Heloisa Soares, a medical oncologist and physician-scientist at the Huntsman Cancer Institute (HCI) in Salt Lake City. Dr. Soares will walk through key neuroendocrine cancer clinical trials including what they are studying, what makes them exciting, and how they may shape future treatment options. She will also explain why clinical trials matter, how they benefit patients, and what to consider when exploring whether a trial might be right for you. Whether you’re a patient, caregiver, or simply trying to stay informed, this webinar will provide clear, practical insights to help you better understand emerging research and what it means for the neuroendocrine cancer community. Watch The Latest in the Management of Functional Neuroendocrine Cancers Jan 21, 2026 Join us 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), carcinoid syndrome (excess serotonin), and other hormone-related issues and symptoms. 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 such as adrenal insufficiency. 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. Watch The Latest on Immunotherapy for Neuroendocrine Cancer Dec 11, 2025 Immunotherapy is an exciting and rapidly advancing area in the treatment of neuroendocrine cancer. Join Dr. Aman Chauhan, medical oncologist at the University of Miami Sylvester Cancer Center, as he discusses the latest developments in immunotherapy for NETs. This webinar will cover current standard-of-care treatments as well as cutting-edge clinical trials involving DLL3-targeted therapies, oncolytic viruses, CAR T-cell therapy, and combination approaches. Whether you’re newly diagnosed or exploring new treatment options, this session will help you better understand the evolving landscape of immunotherapy in neuroendocrine cancer. Event Page NCF Regional NET Patient Educational Event Nov 9, 2025 Join the Neuroendocrine Cancer Foundation and the Sylvester Comprehensive Cancer Center, part of UHealth – University of Miami Health System, in Miami, Florida, on Sunday, November 9th, from 8:30 am - 4:30 pm. More Info Coping With Neuroendocrine Cancer: Managing Distress, Worry & Grief Oct 28, 2025 A neuroendocrine cancer diagnosis can bring emotional, mental, and psychological challenges that are just as difficult as the physical ones. Join licensed clinical psychologist Dr. Karen Kersting from the Medical College of Wisconsin for a supportive discussion on Coping with Neuroendocrine Cancer: Managing Distress, Worry & Grief. She will offer insights and practical strategies to help patients and caregivers navigate the full emotional and psychological impact of living with NETs. Event Page Understanding Alpha & the Evolving PRRT Landscape Sep 22, 2025 The field of PRRT (Peptide Receptor Radionuclide Therapy) is evolving rapidly, and patients are hearing more about new developments like alpha therapies, the recent NETTER-2 and COMPETE trial results, and other advances. Join medical oncologist Dr. Udhayvir Singh Grewal from the Winship Cancer Institute of Emory University as he breaks down what these changes mean for people living with neuroendocrine cancer. This webinar will help patients and caregivers make sense of emerging research and therapies—and what they may mean for the future of NET treatment. Event Page Nutrition & Diet Considerations for NETs Aug 26, 2025 Nutrition can play a key role in living well with neuroendocrine cancer (neuroendocrine tumors or NETs). Join NET dietitian Meghan Laszlo for an informative session on nutrition and diet considerations for people living with neuroendocrine cancer. Event Page Living with NET: The Patient Perspective July 10, 2025 Join us for an open and honest conversation with four individuals living with neuroendocrine cancer as they share the realities of navigating life with an uncommon cancer. Event Page 2025 NCF Neuroendocrine Cancer Patient Conference June 14, 2025 Our 2025 NCF Neuroendocrine Tumor Patient Conference is designed for neuroendocrine cancer (NET or neuroendocrine tumor) patients and caregivers to deepen your understanding of NETs. Event Page NCF Regional NET Patient Educational Event May 17, 2025 The Neuroendocrine Cancer Foundation is hosting an in-person Neuroendocrine Cancer Educational Event for patients and caregivers in Santa Monica, California on Saturday, May 17th, from 3:45 -7:30 PM. Read the Event Blogpost "Evolving Management of Carcinoid Heart Disease: What We Know & What's New" April 29, 2025 Learn from Cardiologist and Congenital Heart Disease Specialist, Dr. Prashanth Venkatesh from Cedars-Sinai Smidt Heart Institute in a virtual educational event on carcinoid heart disease. Dr. Venkatesh demystifies the topic and shares the latest developments in its diagnosis and treatment, including a novel minimally invasive approach to replace heart valves damaged by carcinoid heart disease. Event Page "Understanding Treatments for Neuroendocrine Tumors and Rationale for Sequencing of Therapy" April 1, 2025 Learn from internationally-renowned neuroendocrine cancer expert Dr. Edward Wolin in a discussion on the latest in neuroendocrine tumor treatments and understanding how to sequence them. Dr. Wolin has pioneered many of the NET treatments including somatostatin analogues (SSAs, sandostatin and octreotide), mTOR inhibitors (i.e. everolimus), anti-angiogenic drugs (i.e. cabozantinib), and peptide receptor radiotherapy (PRRT, i.e. Lutathera). Listen to this insightful presentation and live question and answer session. Event Page NCF Regional NET Patient Educational Event March 29, 2025 The Neuroendocrine Cancer Foundation is hosting an in-person NET Educational Event for patients and caregivers in Tucson, Arizona on Saturday, March 29th, from 1:30-6:00 PM. Read the Event Blogpost "PRRT Nurse's Perspective: What to Expect with PRRT" March 7, 2025 Learn about PRRT from UCLA's Lead PRRT Nurse Linda Gardner. She addresses common questions about what to expect before, during, and after the treatment, as well as concerns about radiation safety. Event Page "Deciphering Genetics & Genomics in Neuroendocrine Cancers" with Dr. Kimberly Perez Feb 7, 2025 Learn the latest in genetics and genomics for neuroendocrine cancers from medical oncologist Dr. Kimberly Perez from Dana Farber Cancer Institute (DFCI) in Boston, Massachusetts. Dr. Perez has expertise in hereditary cancer syndromes and deciphers the topics of genetics and genomics. Event Page "Understanding GI NETs Found on Endoscopy: Gastric, Duodenal, Colon & Rectal" with Dr. David Metz Jan 28, 2025 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. Event Page Comprehensive Guide to Lung Neuroendocrine Cancers: From Typical Carcinoids to Small Cell Lung Cancer (SCLC) Tuesday, Dec 10, 2024 Learn all about lung neuroendocrine cancers from neuroendocrine cancer expert Dr. Aman Chauhan, leader of the Neuroendocrine Tumor Program and Co-Director of the Theragnostic Program at the Sylvester Comprehensive Cancer Center, University of Miami. Dr. Chauhan will give a comprehensive guide to lung neuroendocrine cancers ranging from typical carcinoids to small cell lung cancer. Event Page Palliative Care for Neuroendocrine Cancer Thursday, Nov 14, 2024 Learn about Palliative Care: what it is, what it is not, and how it may help those affected by neuroendocrine cancer. Dr. Chandana Banerjee, palliative care and hospice specialist from the City of Hope Cancer Center in Los Angeles, demystifies these topics. Event Page 2024 NET Cancer Day Symposium Saturday, November 9, 2024 Celebrate with us at the 2024 LACNETS NET Cancer Day Symposium in Santa Monica, California on Saturday, November 9th from 8:30 am - 4:30 pm. Event Page Evolving Management of NET Liver Metastases Friday, October 18, 2024 Hear the renowned liver and pancreas surgeon, Dr. Gagandeep “Gaugs” Singh, discuss the evolving algorithms in managing NET liver metastases. Dr. Singh, Chief of Surgical Oncology at City of Hope® Cancer Center in Phoenix, asks the question of whether it is prudent to be aggressive surgically or if it is all about timing and strategy. Regional NET Patient Education Conference Saturday, September 21, 2024 LACNETS is hosting an in-person NET Educational Event for patients and caregivers in Minneapolis, Minnesota, on Saturday, September 21st, from 1:30-5:00 PM. This event was not live-streamed or recorded. Meet the Expert: Dr. Eric Liu Saturday, August 17, 2024 Join LACNETS in Denver, Colorado for an in-person event. Meet NET expert Dr. Eric Liu who will give a broad survey of NET from diagnosis to treatment and philosophy. Engage in an interactive question and answer session with Dr. Liu. It’s a wonderful opportunity to learn, advocate and connect in-person with a NET expert and fellow NET patients and caregivers. 2024 LACNETS Neuroendocrine Tumor Patient Conference Saturday, June 15, 2024 Join us for the biggest LACNETS event of the year featuring more than ten NET experts. This year's theme is Deepening Your Understanding of NETs. Event Page High Grade Neuroendocrine Neoplasms & Small Cell Lung Cancer Tuesday, May 7, 2024 Learn about the latest in high grade neuroendocrine neoplasms and small cell lung cancer with medical oncologist Dr. Aman Chauhan, Leader of the Neuroendocrine Tumor Program and Co-Director of the Theragnostic Program at the Sylvester Comprehensive Cancer Center, University of Miami. 2024 Updates: Neuroendocrine Cancer Clinical Trials Thursday, April 25, 2024 Learn about the latest in clinical trials for neuroendocrine cancer with NET expert Dr. Heloisa Soares, a medical oncologist at the Huntsman Cancer Institute (HCI) at the University of Utah. TKIs: Tyrosine Kinase Inhibitors & Neuroendocrine Tumors Friday, Mar 29, 2024 Learn about Tyrosine Kinase Inhibitors (TKIs), what they are and how they work with NET expert Dr. Jennifer Chan. Dr. Chan is the Vice President of the North American Neuroendocrine Tumor Society (NANETS) and the principal investigator of the CABINET trial. Hear the positive findings from that TKI study using Cabozantinib. She discusses the latest in TKI treatments and how they may be a possible treatment option for many NET patients. LACNETS Educational Event Feb 14, 2024 Join us to learn about Carcinoid Heart Disease from Cardiologist Dr. S. Allen Luis at the Mayo Clinic in Rochester, MN. He will describe the cause and symptoms of carcinoid heart disease and discuss diagnosis, treatment and surveillance. LACNETS Educational Event "PRRT: What We Know, Special Considerations & Clinical Trials" with Dr. Jonathan Strosberg January 11, 2024 Join us on Thursday, January 11th at 9:30 AM Pacific to learn the latest on PRRT with NET expert Dr. Jonathan Strosberg. Dr. Strosberg was the principal investigator of the NETTER-1 study which led to the FDA approval of Lutathera and has authored numerous articles on PRRT. He will discuss the latest in PRRT, including special considerations and current clinical trials. LACNETS Educational Event "Minimally Invasive Treatments for Neuroendocrine Liver Metastases" with Dr. Yilun Koethe Dec 9, 2023 Join us to learn more about minimally invasive liver-directed therapies targeting liver metastases with interventional radiologist Dr. Koethe. She discusses ablations including the recently approved histotripsy and embolizations including bland, chemo, and radioembolization. LACNETS Educational Event "Symptoms Management" with Dr. David Metz Oct 10, 2023 Join LACNETS to hear Neuroendocrinologist Dr. David Metz from University of Pennsylvania discuss symptom management. The presentation will cover carcinoid syndrome, pancreatic enzymes, bile acid secretion, and short bowel syndrome. He will explain current treatments, supplements, and diets that might be helpful to control NET-related symptoms. LACNETS Educational Event "Navigating Clinical Trials: Expectations Vs. Realities" with Taymeyah Al-Toubah, MPH Aug 19, 2023 Hear Taymeyah Al-Toubah, MPH, Senior Research Project Manager at the Neuroendocrine Tumor Program of Moffitt Cancer Center. LACNETS Educational Event "Surgery: The What, Where & When" with Dr. Eric Liu July 7, 2023 Hear NET expert Dr. Eric Liu of Rocky Mountain Cancer Centers discuss “Surgery: The What, Where & When.” 2023 LACNETS Annual NET Patient Conference June 17, 2023 Watch our biggest event of the year with 12 NET experts from North America. WATCH NOW LACNETS E ducational Event Topic: High Grade Neuroendocrine Neoplasms (NEN) May 4, 2023 Join LACNETS on May 4th for an educational event dedicated to high grade neuroendocrine neoplasms (NENs). Medical oncologist Dr. Jason Starr from Mayo Clinic in Jacksonville, Florida, will discuss the management and treatment of high grade NENs, including the latest updates and clinical trials. LACNETS Educational Event: "What's New in PRRT" April 14, 2023 Join Dr. Amir Iravani, a Nuclear Medicine Physician and Theranostics Director at Fred Hutchinson Cancer Center, to hear the latest on Peptide Receptor Radionuclide Therapy (PRRT). Better understand the difference between beta and alpha PRRT, current trials and updates on PRRT for Lung NET, adolescents and dosimetry. LACNETS Educational Event: "Update on NET Clinical Trials" March 10 , 2023 Join Dr. Heloisa Soares, a medical oncologist at the Huntsman Cancer Institute (HCI) at the University of Utah, to hear the latest in NET clinical trials. LACNETS Educational Event: "Genetics of NET: Do I Need Genetic Testing?" Tuesday, February 7 , 2023 Do I need genetic testing? Do my family members need to be tested? What does genetic testing entail? What genetic mutations are possible and what does it mean for my family if I carry a mutation? Join Genetic Counselor Samantha Greenberg of University of Texas, Southwestern for a discussion about genetic testing for NETs. LACNETS Educational Event : "Novel Translational Research for Metastatic NET Patients at the NCI" Friday, January 27, 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. LACNETS Educational Event: Focus on Pheochromocytoma/Paraganglioma Wednesday, January 11, 2023 Join LACNETS for a unique webinar with a live 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. Click here for our video library for more educational videos

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