<< Go back to the Podcast page EPISODE 35: NEN TREATMENTS: FOCUS ON CHEMOTHERAPY Download a Transcript of this Episode >>> ABOUT THIS EPISODE What is chemotherapy? When are they used for neuroendocrine neoplasms (NENs)? Dr. Pamela Kunz from Yale Medicine discusses the benefits, potential side effects and latest advances in chemotherapy for NENs. She explains how it differs from other treatments for NENs and how she counsels patients as they consider chemotherapy. MEET DR. PAMELA KUNZ Dr. Pamela Kunz is an Associate Professor of Medicine in the Division of Oncology at Yale School of Medicine where she also serves as the Director of the Center for GI Cancers and Division Chief of GI Medical Oncology at Yale Cancer Center and Smilow Cancer Hospital. She received her medical degree from the Dartmouth Geisel School of Medicine. Her postgraduate training included a medical residency, chief residency, and oncology fellowship at Stanford University School of Medicine. Dr. Kunz is an international leader in the treatment and clinical research of patients with GI malignancies and neuroendocrine tumors (NETs). She holds several key leadership positions in the field including President Emeritus of the North American Neuroendocrine Tumor Society, recent past Chair of the Neuroendocrine Tumor Taskforce of the NCI and standing member of FDA’s Oncology Drug Advisory Committee. She was recently appointed Editor-in-Chief of JCO Oncology Advances. In addition to her focus on NETs, she is a leading voice for promoting diversity, equity and inclusion in medicine. She served as the Vice Chief of DEI for the Section of Medical Oncology at Yale School of Medicine and in 2021, she was awarded ‘Woman Oncologist of the Year’ by Women Leaders in Oncology for her work in promoting gender equity. TOP TEN QUESTIONS ABOUT NEN TREATMENTS: What is chemotherapy? How does it work? What are the chemotherapy drugs used for neuroendocrine cancer? When are they used? Which neuroendocrine cancers are they used for? How does chemotherapy differ from other treatments such as SSAs or targeted therapies (everolimus, sunitinib, cabozantinib)? What side effects might someone have when taking chemotherapy? Will my hair fall out? How might it affect my day-to-day ability to work and function? Can I live a “normal life” while taking this medication? Do any of these side effects have long-lasting effects? Would taking chemotherapy cause someone to be immunocompromised? When in one’s neuroendocrine journey might you recommend chemotherapy? Where does it fall in sequencing? How do you decide which chemotherapy medication to recommend? Can they be stopped and restarted? Can they be repeated? Can you take more than one drug in the category? Can they be taken in combination with another drug? Does taking chemotherapy preclude someone from getting another treatment in the future such as Lutathera PRRT or a clinical trial of alpha PRRT? What do you see as the future of chemotherapy in neuroendocrine cancer treatment? RESOURCES Clinical trials mentioned in this episode: ComPareNET: Lu-177 DOTATATE vs CAPTEM in Advanced pNETs Lu-177 DOTATATE vs Everolimus in Lung NETs Antibody Drug Conjugate ADCT-701 in Neuroendocrine Tumors and Carcinomas For more information on other treatments, check out additional LACNETS podcast episodes on other types of treatments and specific types of NET (pancreatic NET, small bowel NET, lung NET, hindgut and appendix). 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 NCF Events Page “ Luncheon With The Experts ” is a recurring educational outreach series (previously hosted by the Carcinoid Cancer Foundation) aimed at patients, caregivers, and the broader neuroendocrine cancer community. The sessions are hosted by Rain Bennett. The series features medical specialists — oncologists, surgeons, researchers, and other clinical experts — in neuroendocrine cancer and answer audience questions live via chat. Programs are typically delivered live (over Facebook Live and YouTube Live ) at noon Eastern Time, allowing participants to join during their lunch break. Live sessions are recorded and will be available afterward. ABOUT JASON S. STARR, D.O. Hematologist/Oncologist Mayo Clinic Comprehensive Cancer Center Dr. Starr grew up in South Florida and earned his medical degree at Lake Erie College of Osteopathic Medicine in Bradenton, Florida. He did his training at Mayo Clinic School of Graduate Medical Education in Jacksonville, where he completed his internship and residency in internal medicine, followed by a hematology/oncology fellowship. Dr. Starr has developed an expertise in treating gastrointestinal malignancies and has co-authored papers and book chapters on the subject. He has a special interest in neuroendocrine tumors and is committed to advancing the field through clinical research, namely through the development and enrollment of clinical trials. Dr. Starr is also passionate about education and is integrally involved with fellow education and well-being. He is board certified in internal medicine, hematology, and oncology. "The greatest joy of my career is the interaction and relationships I am able to have with my patients," says Dr. Starr. In his free time he enjoys and values spending time with his wife and children. He also enjoys exercise for fitness and stress relief. Dr. Starr is proud of his Mayo roots and feels strongly about Mayo Clinic's conviction to hope, faith, and science. HOST The sessions are hosted by Rain Bennett , a two-time Emmy-nominated filmmaker, author, and experienced host who produces and leads live conversations on behalf of the Neuroendocrine Cancer Foundation. Bennett has been involved with the neuroendocrine cancer community as a longtime filmmaker and supporter, using his storytelling and interview skills to bring expert perspectives to patients and caregivers. THANKS TO OUR SPONSORS The opinions expressed by the guest presenters, as well as the questions asked by the audience, have not been created or suggested by NCF or the sponsors of this program. NCF does not endorse or promote any of the views, opinions or information provided in this presentation. Audience members should not rely solely on the opinions or information expressed by the guest presenter and should seek guidance and direction from their own medical advisors regarding any choices they make about their health or treatments. << Go Back to NCF Events Page

<< Go back to the Podcast page EPISODE 2: DIARRHEA & NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE For our second episode, NET expert and gastroenterologist Dr. David Metz answers the top 10 GI questions for NETs. Dr. Metz addresses diarrhea, diet, the difference between carcinoid tumor vs. carcinoid syndrome, and effective symptom management. MEET DR. DAVID C. METZ David C. Metz, MD Professor of Medicine, Perelman School of Medicine Co-Director Emeritus, University of Pennsylvania Neuroendocrine Tumor Program After earning his MD from the University of the Witwatersrand's Medical School, Dr. Metz was a resident at both the Albert Einstein Medical Center and the Johannesburg General Hospital. He went on to complete fellowships at Georgetown University Hospital as well as the National Institutes of Health. Arriving at Penn Medicine in 1993, David Metz, MD, held a variety of leadership roles within the Department of Gastroenterology, including Co-Directorship of the Neuroendocrine Tumor Center and Penn NET Treatment Program. Dr. Metz was previously a staff fellow at the National Institutes of Health, where he performed basic research in pancreatic acinar cell secretion and clinical research in Zollinger-Ellison syndrome. While at Penn Medicine, he served as Chair of the North American Neuroendocrine Tumor Society (NANETS), as a member of the Liaison Committee for Recertification of the American Board of Internal Medicine (American Gastroenterological Association representative), and on the Food and Drug Administration Gastrointestinal Drugs Advisory Committee, among other positions. Dr. Metz's clinical interests at Penn included Zollinger-Ellison syndrome and other acid-peptic conditions, Helicobacter pylori infection, non-steroidal anti-inflammatory drug gastropathy and the diagnosis and management of patients with functional and non-functional neuroendocrine tumors of the pancreas and alimentary tract. An investigator for a series of prominent clinical trials in all of these areas, Dr. Metz has published more than 200 articles on topics of clinical interest and research. He retired in July 2021 after 28 years at Penn Medicine. In 2021 Dr. Metz received the NANETS Lifetime Achievement Award that honors an individual who, over the course of their career, has provided outstanding contributions to neuroendocrine disease management through research, clinical practice or educational initiatives, as well as exceptional leadership in NANETS and dedication to its mission. TOP 10 QUESTIONS What is the difference between carcinoid syndrome and carcinoid tumor? What are the most common causes of diarrhea? How do I know if my diarrhea is from NET, medication, diet, or another reason? (What is the difference between diarrhea and fat-absorption diarrhea?") How do I know if diarrhea is part of carcinoid syndrome or not? Discuss cramping, bloating, and abdominal pain. Is this part of carcinoid syndrome? (How do I know if these are from the tumor, treatment, or something else?) Why do they take out the gallbladder and what effect does this have on GI symptoms? Are there other syndromes besides carcinoid syndrome that cause diarrhea? How might my doctor evaluate my diarrhea? When should someone have EGD, colonoscopy, and capsule endoscopy and how might it affect symptom management? What do I do to control my diarrhea? What treatment/diet/meds would help prevent chronic cramping, bloating, loud gurgling of GI tract for a midgut patient on SSAs ? What is the best diet for diarrhea? DISCLAIMER LACNETS Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of LACNETS. Please contact your medical team with questions or concerns about your individual care or treatment. THANKS TO OUR SPONSORS

<< Go back to the Podcast page EPISODE 5: TREATMENT FOR NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE What are the current treatment options for NETs? How do I know what treatments I should be on? In our fifth episode, NET expert and Medical Oncologist Dr. Randy Hecht of UCLA Health answers ten common questions about current NET treatment options (including lanreotide, octreotide, everolimus, and PRRT), as well as future treatment options. MEET DR. RANDY HECHT Dr. Hecht is a Professor of Clinical Medicine in the David Geffen School of Medicine at UCLA School of Medicine. He holds the Carol and Saul Rosenzweig Chair for Cancer Therapies Development and is the Director of the UCLA Gastrointestinal Oncology Program. Dr. Hecht attended medical school at Eastern Virginia Medical School. He took his internal medicine residency at Northwestern and completed fellowships in gastroenterology research at the University of Chicago, and in gastroenterology and medical oncology at UCLA. Dr. Hecht is an internationally known clinical and translational researcher in the field of gastrointestinal cancers. He has published widely on the molecular biology, early detection, and treatment of gastrointestinal malignancies. He has lead and is currently directing small trials with new molecules as well as large international randomized trials. Current ongoing research includes preclinical models of therapy with biological agents, early studies with gene therapy vectors and tyrosine kinase inhibitors, and leading phase II and phase III trials with novel agents. TOP 10 GI QUESTIONS 1. Do all NET patients need to be on lanreotide or octreotide? What’s the difference between lanreotide and octreotide? 2. How do I know what treatments I should be on? 3. My doctor has recommended I take everolimus (afinitor) or CAPTEM. What is the difference and how would I make a decision? 4. My doctor has recommended I take everolimus (afinitor) or PRRT. How would I make that decision? 5. Once I have had PRRT, what would I do next if the tumor progresses? 6. How would I find out what new treatments are on the horizon for NET? 7. Would there be any treatments that negate future choices of treatment options or clinical trials? 8. What does it mean if I have bone mets? (Is my prognosis worse? Does it mean my tumors are getting worse?) 9. If you do not have Somatostatin receptors, should you still have the Gallium DOTATATE scan and if not, what tests/scans do you recommend? 10. Which treatment or other development in this field are you most excited about? What hope might you offer to those living with NET or their loved ones? DISCLAIMER LACNETS Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of LACNETS. Please contact your medical team with questions or concerns about your individual care or treatment. THANKS TO OUR SPONSORS

IDE849 (DLL3-targeted ADC) ± Durvalumab in DLL3+ Tumors << Back A Study of IDE849 in Patients with DLL3 Expressing Tumors Including Small Cell Lung Cancer IDENTIFIER ( ClinicalTrials.gov ) : NCT07174583 DRUG/TREATMENT : IDE849, an anti-DLL3 antibody-drug conjugate PHASE : 1/2 STATUS : Recruiting SPONSOR : IDEAYA Biosciences DESCRIPTION: This is a Phase 1/2, multi-center clinical trial studying a new treatment called IDE849 in people with DLL3-expressing cancers, including small cell lung cancer (SCLC), high-grade neuroendocrine carcinomas (NECs), and other solid tumors. What is DLL3? DLL3 (delta-like ligand 3) is a protein found on the surface of some cancer cells, especially high-grade neuroendocrine cancers. Because DLL3 is much less common on normal cells, it has become an important target for new cancer treatments. What is IDE849? IDE849 is an antibody-drug conjugate (ADC), a newer type of targeted cancer therapy. ADCs combine: an antibody, which acts like a homing device to find cancer cells with a specific marker (like DLL3), and a drug payload (often a chemotherapy-like agent) that is delivered directly to those cells IDE849 is designed to find DLL3-positive cancer cells and deliver a cancer-fighting drug directly to them, which may help kill cancer cells while limiting damage to healthy tissue. In this study, IDE849 is being tested: on its own, and in combination with other treatments, including durvalumab (an immunotherapy) or another investigational drug (IDE161) About the Study Researchers want to understand: Safety and side effects How well the treatment works How the drug moves through and affects the body (pharmacokinetics and immunogenicity) The best dose to use in future studies How the Study is Structured Part 1 (Dose Escalation): Participants receive increasing doses of IDE849 (alone or in combination) The goal is to find the safest and most effective dose Part 2 (Dose Expansion): Participants receive the selected dose(s) Researchers further evaluate safety and early effectiveness in specific groups of patients Who This Study Is For This study is enrolling people with: Small cell lung cancer (SCLC) High-grade neuroendocrine carcinomas (NECs) Other solid tumors that express DLL3 Why This Matters Treatment options for high-grade neuroendocrine carcinomas (NECs) and small cell lung cancer (SCLC) are often limited, especially after standard therapies stop working. DLL3-targeted therapies like IDE849 represent a promising new approach because they are designed to specifically target cancer cells that carry the DLL3 marker. By delivering treatment directly to these cells, this strategy may improve effectiveness while limiting damage to healthy tissue. This study is also exploring combination approaches, including immunotherapy, which may further enhance how well treatment works. If successful, this research could help expand treatment options for patients with DLL3-positive cancers, including those beyond small cell lung cancer. CONTACT For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. Name: IDEAYA Clinical Trials Phone Number: +1-855-433-2246 Email: IDEAYAClinicalTrials@ideayabio.com 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.

Find grief and loss support for families, caregivers and loved ones affected by neuroendocrine cancer, including support groups and bereavement resources. Grief & Loss Support for Neuroendocrine Cancer Loved Ones NEW TO LACNETS? Support for those who have experienced the loss of a loved one to neuroendocrine cancer. Included below is a library of grief and loss support groups, information, and resources. Grief is the price we pay for love. - Queen Elizabeth II Organizations Offering Resources for Caregivers ORGANIZATIONS OFFERING RESOURCES FOR CAREGIVERS LACNETS VIRTUAL NET CAREGIVER SUPPORT GROUP Join LACNETS on the last Saturday of every month. This virtual group is a safe space where NET caregivers can come together for support and community. Click here to learn more OUR HOUSE GRIEF SUPPORT CENTER OUR HOUSE provides essential grief support.Their programs serve adults, teens, children and toddlers, which include grief support groups that are specific to the griever. Click here to learn more SIMMS/MANN UCLA BEREAVEMENT GROUP This group will provide a unique opportunity for those spouses and partners who have experienced a recent loss of their loved ones to share and heal with others who truly understand. Click here to learn more CANCER SUPPORT CENTER BEREAVEMENT SUPPORT The Cancer Support Community does not only to meet the needs of cancer patients and survivors, but also to help the family members and friends who are facing cancer alongside a loved one. Click here to learn more Click here for more resources in the Los Angeles region. Grief resources for children Books on Grief & Loss READ The Dreamer's Book of the Dead A Soul Traveler's Guide to Death, Dying, and the Other Side The American Book of Living and Dying Lessons in healing spiritual pain, drawing from personal experiences Life After loss: Conquering Grief A unique approach to understanding and overcoming grief The Grief Recovery Handbook An action program for moving beyond death Bearing the Unbearable Love, Loss, and the Heartbreaking Path of Grief Click here for the full list of recommended books about grief and loss Videos WATCH How to ask for, accept and get the help you need Kim Hamer, Professional Speaker & Author Watch the Video What matters most? (Advanced care planning) Redwing Keyssar, RN, Author Watch the Video Click here for Caregiver Resources LISTEN "Mental Health & NETs" with Dr. Karen Kersting Click here for more information about this episode >>> "Palliative Care" with Dr. Chandana Banerjee Click here for more information about this episode >>> Patient Stories PATIENT STORIES NET Patient Beth shares her inspiring story of strength & resilience. Watch the Video EXCERPTS, POEMS & CONVERSATIONS Elizabeth Gilbert on Grief “How do you survive the tsunami of Grief? By being willing to experience it, without resistance. By being willing to feel everything. By being willing to accept the unacceptable. The conversation of Grief, then, is one of prayer-and-response.” Download the full excerpt Grief “…like a brick in your pocket” “I don’t know. The weight of it, I guess. At some point it becomes bearable. It turns into something you can crawl out from under, and carry around — like a brick in your pocket. And you forget it every once in a while, but then… Download the full excerpt A special thank you to Michael Eselun, BCC , Bronwen Jones, MTheol , and the NETCONNECT team for recommending many of these resources. Click here to read the five stages of grief

In Memory Of Dr. Richard R.P. Warner A Pioneer, A Relentless Advocate, & Beloved by the NET Community. Dr. Richard R.P. Warner, a pioneering physician, global authority on neuroendocrine cancer, and steadfast advocate for patients, passed away at the age of 97 on June 15, 2025, in Denver, Colorado. His passing marks the end of an extraordinary era in neuroendocrine oncology—one that he helped define and elevate through a lifetime of groundbreaking research, compassionate care, and visionary leadership. Dr. Warner’s legacy is vast, stretching from early discoveries in carcinoid syndrome to the global standards of care used today. While serving as a captain in the U.S. Air Force medical corps from 1955 - 1957, he identified the first two known cases of carcinoid syndrome caused by lung tumors—an unprecedented finding that helped define a new class of neuroendocrine cancers (Neuroendocrine Tumors or NETs) and fueled future advances in diagnostics and treatment. A gifted scholar, Dr. Warner graduated from Horace Mann School at age 15, earned his MD from the University of Cincinnati, and completed training in internal medicine and gastroenterology at Mount Sinai Hospital, followed by an NIH research fellowship. In 1963, he joined the Mount Sinai faculty, and in 1968, he founded the Carcinoid Cancer Foundation (CCF) to advance awareness and research for NETs, a field then largely unknown. Dr. Warner’s clinical and academic impact continued to grow throughout his long career. In 2006, he was a founding member of the North American Neuroendocrine Tumor Society (NANETS). A year later, he was appointed Professor of Medicine (Gastroenterology) at the Icahn School of Medicine at Mount Sinai, where he led the Center for Carcinoid and Neuroendocrine Tumors and established the Serotonin Research Laboratory. Under his direction, the center became a nationally recognized hub for excellence in diagnosis, treatment, and research. His pioneering work in therapies like PRRT, imaging advancements, and biomarker testing transformed patient care and cemented his legacy as a visionary in the field. Among Dr. Warner’s many groundbreaking contributions: He pioneered the use of somatostatin analogs to control symptoms and slow tumor growth. He was instrumental in introducing Peptide Receptor Radionuclide Therapy (PRRT) to the U.S. long before it became widely available. He helped develop and validate imaging techniques such as octreotide scans and Ga-68 PET. He refined laboratory testing, including the use of 5-HIAA for diagnosis and monitoring of carcinoid syndrome. He authored or co-authored over 100 peer-reviewed publications, clinical reviews, and textbook chapters. But Dr. Warner’s influence extended far beyond academic and clinical achievements. He was beloved by patients for his ability to explain complex conditions with clarity and kindness, and for always making time to listen. For many, seeing Dr. Warner was the first time they felt truly seen—by a doctor who not only understood their rare condition but cared deeply about their quality of life. He also played a vital role in mentoring generations of physicians, fostering a new wave of clinicians who continue to approach NETs with the empathy and scientific rigor he championed. As a global thought leader, Dr. Warner was a sought-after speaker and educator, presenting at major conferences such as the European Neuroendocrine Tumor Society (ENETS), the North American Neuroendocrine Tumor Society (NANETS), and countless medical forums where he shared insights drawn from decades of front-line care. In 2009, Dr. Warner announced the appointment of his son, Keith R.P. Warner, as Chief Executive Officer of the Carcinoid Cancer Foundation (CCF). In March 2025, the Carcinoid Cancer Foundation announced its partnership with the Neuroendocrine Cancer Foundation, which began to take the lead on CCF’s programs. Even in his later years, Dr. Warner remained deeply involved in the community he helped build—speaking directly to patients, supporting clinical trials, and always serving as a bridge between science and the human experience. His legacy is profound: more informed patients, better treatments, earlier diagnoses, longer survivals, and most of all—more hope that all cancer will eventually be conquered. Though Dr. Warner is no longer with us, his life’s work continues in every improved outcome, every empowered patient, and every step forward in neuroendocrine cancer care. Make a Gift in Memory of Dr. Warner Read More About Dr. Richard Warner's Legacy >>>

Survivin Long Peptide Vaccine (SurVaxM) in Metastatic NETs << Back Survivin Long Peptide Vaccine in Treating Patients With Metastatic Neuroendocrine Tumors CLINICALTRIALS.GOV IDENTIFIER: NCT03879694 Drug/Treatment: SVN53-67/M57-KLH peptide vaccine (SurVaxM) and octreotide acetate (Sandostatin LAR) PHASE: 1 STATUS: Recruiting Sponsor: Roswell Park Cancer Institute Collaborator: NeuroEndocrine Tumor Research Foundation (NETRF) https://www.youtube.com/watch?v=UpVGBG_rZQI Dr. Heloisa Soares Discusses Survivin Long Peptide Vaccine in Metastatic NETs DESCRIPTION: This phase I trial studies the side effects of survivin long peptide vaccine and how it works with the immune system in treating patients with neuroendocrine tumors that have spread to other parts of the body (metastatic). Tumor cells make proteins that are not usually produced by normal cells. The body sees these proteins as not belonging and sends white blood cells called T cells to attack the tumor cells that contain these proteins. By vaccinating with small pieces of these proteins called peptides, the immune system can be made to kill tumor cells. Giving survivin long peptide vaccine to patients who have survivin expression in their tumors may create an immune response in the blood that is directed against neuroendocrine tumors. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. CONTACT/Principal Investigator: Renuka V. Iyer, MD EMAIL: Renuka.Iyer@roswellpark.org PHONE: 716-845-2300

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: Recruiting SPONSOR: National Cancer Institute (NCI) https://www.youtube.com/watch?v=W-52uU2imr8 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

< Back to the supporters page Defeating cancer with radiopharmaceutical medicines Despite therapeutic advances made in the last decade, there remains a high unmet need for new cancer treatments. Radiation therapy is a proven approach to treating many cancers and is typically administered by an external beam of high energy rays. In contrast, radiopharmaceuticals selectively deliver radioisotopes to tumors via the bloodstream. Radiopharmaceuticals have the unique advantage of being both diagnostic and therapeutic. The same drug conjugate could be used for both diagnostic imaging and therapeutic use by switching out the radioisotope. Direct visualization of drug conjugate uptake by tumors with imaging allows for proper patient selection to receive the therapeutic radioisotope (e.g. Actinium-225). RayzeBio is sponsoring the phase 1/3 ACTION-1 study for patients who have inoperable, progressive, somatostatin receptor positive (SSTR+) gastroenteropancreatic neuroendocrine tumors (GEP-NET). The trial is a part of larger international study and will compare the standard of care therapy with 225Ac-DOTATATE (RYZ101). The phase 1 portion of the study will look at the safety and tolerability of RYZ101. The phase 1 of the study is currently enrolling at sites across the country. Main Eligibility Criteria: Over 18 years of age Grade 1-2 well differentiated GEP-NET (GI or pancreas) Ki67 <= 20% Progressive GEP-NET following 2 to 4 cycles of treatment with 177Lu-DOTATATE / 177Lu-DOTATOC. If 177Lu-DOTATATE or 177Lu-DOTATOC treatment was stopped before completing 4 cycles, it should not have been stopped early due to disease progression. Must have had some response to PRRT, defined as tumor shrinkage or tumor stability, that lasted at least 3 months following the last dose of prior 177Lu-DOTATATE/DOTATOC No prior treatment with alkylating agents No prior use of anticancer agents within the following intervals prior to the first dose of study drug: Peptide Receptor Radionuclide Therapy (PRRT): within <8 weeks Chemotherapy: within <6 weeks Small molecule inhibitors: within <4 weeks Biological agents: within <7 days or <5 half-lives No prior external radiation therapy, including stereotactic body radiation therapy (SBRT) No prior radioembolization treatment No significant cardiovascular disease No known brain metastases If you are interested in learning more, please ask your doctor to contact clinicaltrials@rayzebio.com . SITES CURRENTLY ENROLLING: Samuel Mehr, MD Nebraska Cancer Specialists Omaha, NE SMehr@NebraskaCancer.com Michael Morris, MD, MS Advanced Molecular Imaging and Therapy Glen Burnie, MD morrism@amit.health Daneng Li, MD City of Hope Duarte, CA danli@coh.org For more information, contact ClinicalTrials@rayzebio.com. This information is for educational purposes only and does not substitute for medical advice or constitute an endorsement by the Neuroendocrine Cancer Foundation. Talk to your medical team about your individual care and treatment. Confirm Your Visit to the Novartis Virtual Booth! First name Last name Email Submit << Previous Next >>

CABINET: Cabozantinib in Advanced pNET and Carcinoid Tumors << Back CABINET Randomized, Double-Blinded Phase III Study of Cabozantinib Versus Placebo in Patients with Advanced NETs After Progression on Prior Therapy CLINICALTRIALS.GOV IDENTIFIER: NCT03375320 DRUG/TREATMENT: Cabozantinib PHASE: 3 STATUS: Closed SPONSOR: National Cancer Institute (NCI) Update - November 9, 2025 https://www.youtube.com/watch?v=balUaCFLceI 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. 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. Download the transcript here >>> Update - October 18, 2025 Exelixis Announces Positive Results for CABOMETYX® in Lung and Thymic Neuroendocrine Tumors At ESMO 2025, researchers reported that CABOMETYX® (cabozantinib) significantly delayed tumor growth in people with advanced lung or thymic neuroendocrine tumors—reducing the risk of disease progression or death by 81% compared to placebo. These results come from a subgroup of the phase 3 CABINET trial, which led to FDA and European approvals earlier this year for advanced pancreatic and extra-pancreatic NETs. Why this matters to patients: Lung and thymic NETs are rare and often have few treatment options. CABOMETYX offers a new targeted therapy that may help keep these tumors from growing. Read the full press release here >>> Update - March 26, 2025 A New Treatment Option has been FDA approved for those living with NET. For details, see the press release . UPDATE - September 16, 2024 On Sept 16, 2024, LACNETS interviewed incoming NANETS president, Dr. Jennifer Chan from Dana Farber Cancer Institute following her presentation on the updated, results of the CABINET trial at the medical and scientific meeting, ESMO (the European Society for Medical Oncology) Congress 2024 in Barcelona, Spain. The presentation was titled Cabozantinib Versus Placebo for Advanced Neuroendocrine Tumors (NET) after Progression on Prior Therapy (CABINET Trial/Alliance A021602): Updated Results Including Progression Free-Survival (PFS) by Blinded Independent Central Review (BICR) and Subgroup Analyses. https://www.youtube.com/watch?v=4iWtw3qmrBs Watch our latest interview on Sept 16, 2024 with Dr. Jennifer Chan at ESMO (the European Society for Medical Oncology) Congress 2024 in Barcelona, Spain. For more information, read our blogpost: Positive Results of the Cabinet Trial Show Cabozantinib As a New Effective Treatment in Advanced Neuroendocrine Tumors . Read more in the latest NEJM article released Sept 16, 2024: Phase 3 Trial of Cabozantinib to Treat Advanced Neuroendocrine Tumors. UPDATE - October 25, 2023 Dr. Jennifer Chan from Dana Farber Cancer Institute shared the CABINET trial data that showed cabozantinib (CABOMETYX®) helped those with advanced pancreatic NET and extra pancreatic NET (NET outside the pancreas). The results suggest that cabozantinib may be an effective option to treat NET patients, even those who have already tried other therapies. The NET patient community can be hopeful that there will likely be another FDA-approved oral treatment available in the near future. Click here to read the detailed results of the CABINET trial here: Business Wire - "Detailed Results from Phase 3 CABINET Pivotal Trial Evaluating Cabozantinib in Advanced Neuroendocrine Tumors Presented at ESMO 2023 " OncLive - "Cabozantinib Confers PFS Benefit in Previously Treated Advanced Neuroendocrine Tumors" https://www.youtube.com/watch?v=VonfcmeellU Watch this exclusive video interview with Dr. Jennifer Chan at ESMO - European Society for Medical Oncology 2023 in Madrid, Spain. UPDATE - Aug 24, 2023 The Alliance for Clinical Trials in Oncology announced that the CABINET trial (NCT03375320) showed positive findings with cabozantinib having efficacy. The CABINET trial is a phase 3 randomized, double-blinded study evaluating cabozantinib compared with placebo in patients with advanced pancreatic neuroendocrine tumors (PNET) or advanced extra-pancreatic neuroendocrine tumors (carcinoid tumors) who experienced progression after prior systemic therapy. The trial is now being stopped early. It will be unblinded, meaning the patients will find out if they have been receiving placebo and those who have will have the possibility of receiving cabozantinib. The findings will be discussed with the U.S. Food and Drug Administration. Detailed results from the trial will be presented at an upcoming scientific meeting. To read the announcement, go to https://bit.ly/A021602-Interim or https://www.onclive.com/view/cabozantinib-efficacy-prompts-cabinet-trial-unblinding-in-advanced-pancreatic-and-extra-pancreatic-nets. https://www.youtube.com/watch?v=2H_SChk3gxw Dr. Jennifer Chan Discusses CABINET: Cabozantinib DESCRIPTION: This phase III trial studies cabozantinib to see how well it works compared with placebo in treating patients with neuroendocrine or carcinoid tumors that have spread to other places in the body (advanced). Cabozantinib is a chemotherapy drug known as a tyrosine kinase inhibitor, and it targets specific tyrosine kinase receptors that, when blocked, may slow tumor growth. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. PRINCIPAL INVESTIGATOR: Jennifer A Chan, MD, MPH Alliance for Clinical Trials in Oncology and National Cancer Institute (NCI)

<< Go back to the Podcast page EPISODE 17: KEY CONSIDERATIONS FOR NET SURGERY Download a Transcript of this Episode >> ABOUT THIS EPISODE How do surgeons decide the type, extent, and approach of NET surgery? NET surgeon Dr. Alexandra Gangi of Cedars-Sinai answers 10 common questions about what to expect before, during, and after NET surgery. Gain insight on preparing for surgery and what is important for your surgeon to know about your recovery goals. Dr. Gangi’s comprehensive approach illustrates why surgeons are an integral part of your NET medical team. MEET DR. ALEXANDRA GANGI Dr. Alexandra Gangi is a board-certified surgical oncologist at Cedars-Sinai Medical Center in Los Angeles. Dr. Gangi completed a general surgical residency at Cedars-Sinai and completed her surgical oncology fellowship at the H. Lee Moffitt Cancer Center in Tampa, Florida. She currently serves as the director of the Gastrointestinal Tumor and Cancer Regional Therapies Programs with specialization in Pancreatic and GI Neuroendocrine tumors, Metastatic colorectal cancer, and Peritoneal Surface Malignancies. Her research focuses on understanding GEPNET heterogeneity between and within tumors subtypes and mechanisms of chemotherapy induced liver injury. TOP 10 QUESTIONS 1. How do you decide if the tumors can and should be cut out? How does tumor location, tumor size, and amount of tumors factor into your decision? 2. How do you decide if someone should have a laparoscopic surgery versus open surgery? What about robotic surgery? 3. How do you decide whether or not to remove the ileocecal valve? 4. What work up should NET patients have before surgery? Should all NET patients have an echo? 5. What is the risk of carcinoid crisis with a dental procedure, a biopsy, or with surgery? How do you manage this? 6. Should NET patients be on somatostatin analogs before surgery? What about after surgery? If so, when would you restart it? 7. When would you want someone on chemotherapy or PRRT to shrink a tumor before surgery? When might you want to do surgery first followed by another treatment? 8. When would you recommend imaging after NET surgery? What type of imaging would you order? 9. Why are there differing opinions from NET specialists, specifically about surgery and what treatment should be offered as the next option? 10. What questions would you recommend NET patients ask at their surgical consultation? RESOURCES READ LACNETS Resources on Surgery Blog Practical Tips for Patients Preparing for Surgery NET VITALS NET Intro WATCH https://www.youtube.com/watch?v=dMzftWG0YpU "Surgery for NETs" - Alexandra Gangi, MD, Cedars-Sinai - 2020 LACNETS Virtual NET Conference (June 23, 2020) https://www.youtube.com/watch?v=01twnQyDEV4 "To Cut or Not to Cut? What Your NET Surgeon Wants You To Know" - Callisia Clarke, Medical College of Wisconsin - 2021 LACNETS Virtual NET Conference (June 19, 2021) https://www.youtube.com/watch?v=-38gePJDans "NET Surgery: Making Decisions & Preparing for Surgery" - Callisia Clarke, MD, Medical College of Wisconsin - 2022 LACNETS Virtual NET Conference (June 18, 2022) https://www.youtube.com/watch?v=VkgoByozjX0 "Your Pathologist & Your Pathology Report" - Sue Chang, MD, City of Hope (March 27, 2020) https://www.youtube.com/watch?v=aGp0YuHt_sU "Pathology" - Alberto Marchevsky, MD, Director of Pathology, Cedars-Sinai - 2019 LACNETS Conference (June 8, 2019) LISTEN The LACNETS Podcast Episode 3: Surgery for NETs >> The LACNETS Podcast Episode 11: Pathology for NETs >> DISCLAIMER LACNETS Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of LACNETS. Please contact your medical team with questions or concerns about your individual care or treatment. THANK YOU TO OUR SPONSORS