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Lu-177 DOTATATE + Cabozantanib in NETs << Back Study of Cabozantinib With Lu-177 in Patients With Somatostatin Receptor 2 Positive Neuroendocrine Tumors CLINICALTRIALS.GOV IDENTIFIER: NCT05249114 DRUG/TREATMENT: Cabozantinib with Lu-177 DOTATATE administration IV PHASE: 1b STATUS: Recruiting SPONSORS: Providence Health & Services COLLABORATORS: Advanced Accelerator Applications SA & Exelixis Dr. Kennecke discusses Cabozantinib with Lu-177 DOTATATE DESCRIPTION: The phase I objective of this study is to establish the maximal tolerated dose (MTD) of cabozantinib in 20 mg, 40 mg and 60 mg dose escalation cohorts in combination with Lu-177 dotatate at a standard dose of 7.4 GBq in four (4) 8-week cycles followed by continuation cabozantinib. READ: 2023 NANETS Abstract, 10/12/2023 For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. PRINCIPAL INVESTIGATOR: Hagen Kennecke, MD, MHA Providence Health & Services CONTACT: Mary McCormick, RN EMAIL: mary.mccormick@providence.org PHONE: 503-215-9570

<< Go back to the Podcast page EPISODE 42: NEUROENDOCRINE CANCER STRAIGHT TALK Download a Transcript of this Episode >>> ABOUT THIS EPISODE In this special episode, medical oncologist and NET expert, Dr. Diane Reidy-Lagunes engages in an open and honest discussion on sensitive topics including sexual health, family planning and end-of-life discussions. She also answers common questions regarding cannabis use with cancer as well as the relationship between sugar and cancer. Dr. Reidy shares information and insights from her decades of experience as well as from the award-winning “Cancer Straight Talk” podcast from Memorial Sloan Kettering Cancer Center (MSKCC) she created and hosted, and she relates these topics to NET patients and their loved ones. MEET DR. DIANE REIDY-LAGUNES Dr. Diane Reidy-Lagunes will join the Department of Medicine (DOM) as chief of the Division of Medical Oncology, effective April 1, 2025. In addition to her role with DOM, Dr. Reidy-Lagunes will also hold an appointment as Associate Vice President for Oncology Services for Duke University Health System. Dr. Reidy-Lagunes comes to Duke from Memorial Sloan Kettering Cancer Center (MSKCC), where she served as the vice chair of Medicine focused on coordination of care in MSKCC Regional Care Network. Her previous roles included president of MSKCC’s Medical Staff, associate deputy physician-in-chief for clinical operations in the Regional Care Network, physician liaison for the Patient and Family Advisory Council on Quality, clinical director for the GI oncology service, and co-director of the Medical Oncology/Hematology Fellowship Program in the Department of Medicine. During the COVID-19 crisis in New York City, she served as chief of clinical care as part of the Hospital Incident Command System at MSKCC. Additionally, she is the creator and host of an award-winning monthly podcast called "Cancer Straight Talk" from MSKCC which connects patients to cancer experts with the goal of having evidenced-based conversations on a variety of topics in cancer care. As a researcher, Dr. Reidy-Lagunes focuses on developing methods to integrate molecular-based therapies into the treatment of neuroendocrine and adrenal tumors. She is a member of the National Cancer Institute Task Force on Neuroendocrine Tumors and the National Cancer Care Network Guidelines, and she is a former board member of the North American Neuroendocrine Tumor Society. She has received numerous awards and honors, including the Paul Sherlock Resident Housestaff Teaching Award and recognition as one of Castle Connolly's Top Doctors. TOP TEN QUESTIONS: What is cancer? Is NET cancer? Should I follow a certain diet? Does sugar feed cancer? Can I exercise if I have metastatic neuroendocrine cancer? What does having neuroendocrine cancer mean for my romantic life? How does it affect dating? What does having neuroendocrine cancer mean for my sexual health? What does having neuroendocrine cancer mean for fertility and family planning? Can I have children? How do I talk to my kids about cancer? How will I know when it’s time for end-of-life discussions? Should I consider cannabis? What advice do you have about improving communication with my doctor? RESOURCES LISTEN MSK’s Cancer Straight Talk Podcast Series with Dr. Diane Reidy Episodes mentioned in this podcast: Episode 2 - Understanding the Basics of the “C-word”: What is Cancer with Dr. Matthew Matasar Episode 6 - Sugar and Cancer: Friend or Foe with Dr. Santosha Vardhana Episode 5 -Making Every Step Count: The Role of Exercise and Cancer Episode 34 - How Exercise Can Help Treat and Prevent Cancer with Dr. Lee Jones Episode 35 - Dating After a Cancer Diagnosis Episode 20 - A Man’s Guide to Sex and Cancer Episode 59 - Preserving Fertility During Cancer Treatment: Options, Costs and Success Rates Episode 56 - How to Talk to Children About Cancer Episode 23 - What’s the Hash on the Little Green Plan (Cannabis) and Cancer? MSK’s Death over Dinner The LACNETS Podcast Episode 37: Supportive Oncology for Neuroendocrine Cancer WATCH DISCLAIMER The Neuroendocrine Cancer Foundation Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of the Neuroendocrine Cancer Foundation. Please contact your medical team with questions or concerns about your individual care or treatment. THANK YOU TO OUR SPONSORS

Lu-177 DOTATATE + Triapine in GEP-NETs << Back Phase 2 Trial: Testing the Effectiveness of an Anti-cancer Drug, Triapine, When Used With Targeted Radiation-based Treatment (Lutetium Lu 177 Dotatate), Compared to Lutetium Lu 177 Dotatate Alone for Metastatic Neuroendocrine Tumors DRUG/TREATMENT: LUTATHERA (Lu-177) + Triapine CLINICALTRIALS.GOV IDENTIFIER: NCT05724108 PHASE: 2 STATUS: Recruiting SPONSOR: National Cancer Institute (NCI) June 2024: Dr. Aman Chauhan discusses Phase 2 LUTATHERA (Lu-177) + Triapine study April 2023: Dr. Aman Chauhan discusses Phase 2 LUTATHERA (Lu-177) + Triapine study DESCRIPTION: This phase II trial compares the effect of adding triapine to lutetium Lu 177 dotatate versus lutetium Lu 177 dotatate alone (standard therapy) in shrinking tumors or slowing tumor growth in patients with neuroendocrine tumors that have spread from where they first started (primary site) to other places in the body (metastatic). Triapine may stop the growth of tumor cells by blocking some of the enzymes needed for deoxyribonucleic acid synthesis and cell growth. Lutetium Lu 177 dotatate is a radioactive drug. It binds to a protein called somatostatin receptor, which is found on some neuroendocrine tumor cells. Lutetium Lu 177 dotatate builds up in these cells and gives off radiation that may kill them. It is a type of radioconjugate and a type of somatostatin analog. Giving triapine in combination with lutetium Lu 177 dotatate may be more effective at shrinking tumors or slowing tumor growth in patients with metastatic neuroendocrine tumors than the standard therapy of lutetium Lu 177 dotatate alone. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. CONTACT/Principal Investigator: Aman Chauhan, MD EMAIL: axc3268@med.miami.edu RELATED RESOURCES Clinical Trials Using Lutetium Lu 177 Dotatate - NCI Dr. Chauhan's presentation slides can be downloaded here: Dr. Chauhan Presentation on Lu-177 DOTATATE + Triapine Trial .pptx Download PPTX • 16.18MB 2023 NANETS Abstract shows the combination of Triapine and Lu-177 DOTATATE was safe with preliminary efficacy signals.

<< Go back to the Podcast page EPISODE 16: TOP 10 HIGHLIGHTS OF THE 2022 NANETS SYMPOSIUM Download a Transcript of this Episode >> ABOUT THIS EPISODE In this special episode, Dr. Will Pegna shares 10 new and exciting discoveries from the 2022 North American Neuroendocrine Tumor Society (NANETS) Multidisciplinary NET Medical Symposium. Each year, hundreds of medical professionals gather to share the latest in NET research and medical advances. LACNETS and Dr. Pegna discuss the Symposium highlights and why they matter to the NET community. MEET DR. GUILLAUME PEGNA Dr. Guillaume (Will) Pegna, MD is a Medical Oncologist at Oregon Health & Science University or OHSU in Portland, Oregon. Dr. Pegna specializes in the care of adults with cancers of the gastrointestinal (GI) and neuroendocrine systems (NETs). He is additionally interested and experienced in the management of rare tumors including pheochromocytomas, paragangliomas, and adrenocortical carcinomas. Dr. Pegna is actively involved with clinical trials and cancer research to improve survival and quality of life for cancer patients and to better understand the biology of these diseases. He specializes in the use of chemotherapy, immunotherapy, and multidisciplinary approaches to cancer care. Dr. Pegna finds it rewarding to help patients understand their disease, providing treatment options based on each individual patient, and supporting them through their treatment journeys. Dr. Pegna grew up in Upstate New York in a French-speaking family and goes by either Guillaume or Will, the English translation of his name. Outside of work, he enjoys hiking, ice hockey, and traveling with his family. TOP 10 HIGHLIGHTS OF THE 2022 NANETS SYMPOSIUM REFERENCES 10. Oral abstract presentation by Lindsay Hunter, MD, Huntsman Cancer Institute: "Circulating tumor DNA using a personalized, tumor-informed assay in metastatic well-differentiated gastroenteropancreatic neuroendocrine tumor patients." 9. Oral abstract presentation by Mehran Taherian, MD, MD Anderson: "High-grade Pancreatic Neuroendocrine Neoplasms: Interobserver Diagnostic Accuracy and Relationship with Clinicopathology and Molecular Characteristics." 8. Oral presentation by Aman Chauhan, MD, University of Kentucky Markey Cancer Center: “How to Define PRRT Refractory and Role of PRRT Repeat?” NET RETREAT: A Phase II RCT of Lu-177 DOTATATE Retreatment vs. Everolimus in Midgut NET Courtesy of Aman Chauhan, MD 7. Oral presentation by Jaume Capdevila Castillon, MD, PhD, Hospital Universitari Vall d’Hebron, Spain: “Novel TKIs for GEP NETs” Courtesy of Jaume Capdevila MD, PhD Poster presentation by Satya Das, MD: "E fficacy and Toxicity of Anti-Vascular Endothelial Growth Factors (VEGF) Receptor Tyrosine Kinase Inhibitors (TKIs) in Neuroendocrine Tumors (NETs) - A Systematic Review and Meta-Analysis." 6. Oral abstract presentation by Nancy Joseph, MD, PhD, University California, San Francisco: "TP53 Mutation Portends a Worse Overall Survival in Patients with Advanced Grade 3 Well-Differentiated Neuroendocrine Tumors." 5. Oral abstract presentation by Taymeyah Al-Toubah, MPH, Moffitt Cancer Center: "Phase 2 Study of Pembrolizumab and Lenvatinib in Advanced Well-Differentiated Neuroendocrine Tumors." 4. Oral abstract presentation by Eleonora Pelle, MD, Moffitt Cancer Center: "Development of a Novel Anti-SSTR Bispecific T-Cell Engager (BiTE)-like Molecule for the Treatment of Neuroendocrine Tumors." 3. Oral abstract presentation by Taymeyah Al-Toubah, MPH, Moffitt Cancer Center: "Risk of Myelodysplastic Syndrome/Acute Leukemia with Sequential Capecitabine/Temozolomide and 177Lu-Dotatate." 2. Oral abstract presentation by Brendon Herring, MS, University of Alabama at Birmingham School of Medicine: "Transcriptomic Influences of Racial Disparities in Black Patients with Pancreatic Neuroendocrine Tumors." Oral abstract presentation by Farhana Moon, Sr Clinical Research Analyst, UCSF, Helen Diller Family Comprehensive Cancer Center: "Variants of Uncertain Significance (VUS) are More Common in Non-Caucasian Patients with Neuroendocrine Neoplasms (NENs)." 1.Oral presentation by Dr Ebrahim Delpassand, Excel Diagnostics: "Early Data on 212Pb-DOTAMTATE (Alpha PRRT)" ABOUT NANETS The North American Neuroendocrine Tumor Society (NANETS) provides NET medical educational programming designed exclusively for medical professionals. While our Podcast only features 10 presentations from the NANETS October 27-29, 2022 Symposium, there are many more noteworthy abstracts found (or listed) here: Click here for NANETS Oral Abstracts Presentations Click here for NANETS Oral Abstracts in PDF format While NANETS does not provide direct patient education, patients may help further NET education of medical professionals by sharing the organization's educational meetings and NET guidelines with their providers. CLINICAL TRIAL INFORMATION Targeted Alpha-emitter Therapy of PRRT Naive Neuroendocrine Tumor Patients (ALPHAMEDIX02) Study of RYZ101 Compared With SOC in Pts With Inoperable SSTR+ Well-differentiated GEP-NET That Has Progressed Following 177Lu-SSA Therapy (ACTION-1) Testing Cabozantinib in Patients With Advanced Pancreatic Neuroendocrine and Carcinoid Tumors (CABINET) EXCEL Diagnostics (AlphaMedix, Alpha PRRT trial) RESOURCES "NET Medical Therapies" with Dr. Hecht (October 6, 2022) "Exciting Advances in NET Management: Cu64 DOTATATE & Alpha PRRT" with Dr. Ebrahim S. Delpassand DISCLAIMER LACNETS Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of LACNETS. Please contact your medical team with questions or concerns about your individual care or treatment. THANK YOU TO OUR SPONSORS

<< Go back to the Podcast page EPISODE 27: WHAT TO KNOW ABOUT NEUROENDOCRINE TUMOR LIVER METASTASES Download the transcript here: LACNETS Podcast Episode 27 Transcript .pdf Download PDF • 206KB ABOUT THIS EPISODE What do you call NETs in the liver? How often do NETs spread and what causes NETs to spread? How do you determine if surgery is an option? Dr. Xavier Keutgen from University of Chicago brings clarity to NET tumors found in the liver and describes how surgery fits in with other treatments for metastatic NETs. MEET DR. XAVIER KEUTGEN Xavier M. Keutgen MD is a board-certified, double-fellowship trained surgeon who specializes in the treatment of gastro, entero, pancreatic neuroendocrine tumors and neoplasms of the thyroid, parathyroid and adrenal glands. A native from Belgium, Dr. Keutgen graduated magna cum laude from the University of Heidelberg Medical School in Germany and completed a general surgery residency and surgical oncology research fellowship at New York Presbyterian Hospital-Weill Cornell Medical Center. He then completed a hepato-pancreato-biliary fellowship at the University Hospital of Zurich in Switzerland as well as an endocrine oncology and surgery fellowship at the National Cancer Institute, National Institutes of Health (NIH) in Bethesda, Maryland. Dr. Keutgen currently serves as the director of the Neuroendocrine Tumor Program, director of the Endocrine Research Program and co-director of the Von Hippel-Lindau Clinical Care Program at the University of Chicago Medicine . Throughout his career Dr. Keutgen has developed a particular interest in clinical, translational and basic science research. His laboratory specializes in investigating the role of radiation therapy and DNA damage repair in pancreatic, lung and small bowel neuroendocrine tumors, discovering new actionable molecular targets for neuroendocrine tumors, and elucidating new mechanisms of drug delivery for endocrine malignancies. TOP TEN QUESTIONS What is liver NETs? How often do NETs spread? Is it expected that NETs will eventually spread? If the primary tumor was already removed, do you now call this liver NET or do you still refer to it by the primary site of origin – and why? How is this different from liver cancer? What causes NETs to spread? Is there anything that is done to cause NET tumors to spread? Is there anything that can be done to keep them from spreading? How do you determine if surgery is an option? What is involved in evaluating metastases? What scans or labs are needed? How do you decide what the “tumor burden” is? How do you weigh the grade or ki67? How do you weigh tumor size? Is there a cut-off for tumor size or the number of tumors that is too much to operate? How does one decide between surgery versus other options? How often can surgery or other treatments be done? How safe is liver surgery? How do you approach surgery for someone with liver tumors who also has tumors in the tail versus the head of the pancreas? When someone has had a Whipple surgery and later is found to have tumors in the liver, what are the options? What advances in the field are you most excited about? RESOURCES LACNETS Surgery Resources WATCH: LACNETS Surgery Playlist 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

< Back to the upcoming events page 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. ABOUT DR. AMAN CHAUHAN Aman Chauhan, MD, earned his medical degree from the Kasturba Medical College in Manipal, Karnataka, India, followed by a dual residency in internal medicine and pediatrics at Louisiana State University in New Orleans. Dr. Chauhan completed his fellowship in hematology and oncology at the University of Kentucky, especially focusing on neuroendocrine tumor (NETs). Additionally, Dr. Chauhan completed a Cancer Therapy Evaluation Program (CTEP) physician externship at the National Cancer institute (NCI) that focused on designing clinical trials and clinical research projects. His clinical interests include treating NETs, including carcinoid tumors, high-grade neuroendocrine carcinomas, and small and large cell neuroendocrine carcinoma. Dr Chauhan leads the University of Miami Neuroendocrine Cancer Program and co-leads Sylvester Theranostics Drug Development Program. He is national principal investigator on several investigator initiated neuroendocrine cancer clinical trials. He has authored over 70 scientific publications and book chapters and has received a career development award from NCI CTEP. Dr Chauhan also serves on AJCC and ASCO NET guideline committees and is an active member of NANETS communication committee. Dr. Chauhan is board certified in internal medicine and medical oncology. He is a member of the American Society of Clinical Oncology as well as the American Association of Cancer Research and the North American Neuroendocrine Tumor Society. SPONSORS The information provided is for educational purposes only and does not substitute for medical advice. Talk to your medical team if you have any questions or concerns about your individual care and treatment. The opinions expressed in this program are those of the speakers and do not represent the opinion of LACNETS.

<< 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

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

DAREON™-9: DLL-3 BiTE + Topotecan in Small Cell Lung Cancer (SCLC) << Back DAREON™-9: A Study to Test How Well Different Doses of BI 764532 Are Tolerated by People With Small Cell Lung Cancer When Taken Together With Topotecan IDENTIFIER ( ClinicalTrials.gov ) : NCT05990738 DRUG/TREATMENT : BI 764532 (DLL3/CD3 bispecific antibody) + Topotecan PHASE : 1 STATUS : Recruiting SPONSOR : Boehringer Ingelheim DESCRIPTION: Dr. Aman Chauhan at Sylvester Comprehensive Cancer Center, University of Miami discusses the DAREON™-9: DLL-3 BiTE + Topotecan in Small Cell Lung Cancer (SCLC) . Recorded: June 20, 2024 Boehringer Ingelheim is sponsoring a phase 1 study, a phase 1 trial studying BI 764532 , an antibody-like molecule (DLL3/CD3 bispecific or “BiTE”) that may help the immune system fight cancer. The study is in adults with extensive stage small cell lung cancer who have previously received platinum-based chemotherapy and are eligible to receive topotecan treatment. The purpose of this study is to find out the highest dose of BI 764532 that people can tolerate when taken together with topotecan, a chemotherapy treatment called topoisomerase 1 inhibitor, that works by blocking a chemical (topoisomerase 1) that helps cancer cells repair and separate DNA when they divide. Participants get BI 764532 and topotecan as infusions into a vein. As an alternative, topotecan may also be taken orally (tablets). For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. CONTACT : Boehringer Ingelheim EMAIL: clintriage.rdg@boehringer-ingelheim.com PHONE: 1-800-243-0127

< Back to the upcoming events page 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. ABOUT DR. ALLEN LUIS Dr. S. Allen Luis, MD, Ph.D, is the Associate Dean for Student and Faculty Affairs at the Mayo Clinic School of Health Sciences and the Associate Chair for Education for the Department of Cardiovascular Diseases. He also serves as Medical Director for the Mayo Clinic School of Health Sciences Echocardiography and Advanced Cardiovascular Sonography Programs. He works in the Carcinoid Heart Disease Clinic, is Co-director of the Pericardial Diseases Clinic and is an Associate Professor of Medicine at Mayo Clinic (Rochester, Minnesota). Dr. Luis is an Associate Editor for Frontiers in Cardiovascular Medicine and a member of the American Journal of Cardiology Editorial Board. He serves on the Board of Directors for the American College of Cardiology (Minnesota Chapter) and the Committee on Accreditation for Advanced Cardiovascular Sonography. Dr. Luis’ principal clinical and research interests include the use of echocardiography and multimodality cardiac imaging in the investigation, management and prognostication of patients with carcinoid heart disease. His other clinical and research interests include cardio-oncology, valvular heart disease and pericardial diseases. THANKS TO OUR SPONSORS The information provided is for educational purposes only and does not substitute for medical advice. Talk to your medical team if you have any questions or concerns about your individual care and treatment. The opinions expressed in this program are those of the speakers and do not represent the opinion of LACNETS.

<< Go back to the Podcast page EPISODE 45: SPOTLIGHT ON MEDICAL ONCOLOGY Download a Transcript of this Episode >>> ABOUT THIS EPISODE One of the key aspects of one’s neuroendocrine cancer care is building your medical team, which typically includes a medical oncologist. In this episode, Medical Oncologist Dr. Sandy Kotiah from Mercy Medical Center in Baltimore expounds on the role of a medical oncologist. She sheds light on the first appointment, communication, and care coordination. MEET SANDY D. KOTIAH, MD Sandy D. Kotiah, M.D., a Board Certified medical oncologist, serves as the Director of The Neuroendocrine Tumor Center at Mercy and is a member of Medical Oncology and Hematology at Mercy in Baltimore, Maryland. Dr. Kotiah leads a multidisciplinary team of specialty doctors focused on providing some of the best treatment options for rare neuroendocrine diseases. Dr. Kotiah’s compassionate and caring nature as well as her exceptional clinical knowledge and dedication to searching for answers to complicated cancer diagnoses makes her a sought-after Medical Oncologist and Hematologist in the Baltimore region . TOP TEN QUESTIONS: What is your role in the neuroendocrine cancer world? What is your role with your medical team? What is a medical oncologist? What training is involved? Is a medical oncologist the same thing as a hematologist oncologist? What’s the difference between a medical oncologist & surgical oncologist (& radiation oncologist)? What is a NET expert and how does someone become a NET expert? When I’m looking for a NET expert, what type of doctor am I looking for? How do I know if I’m with a “NET expert”? If I call a medical institution, will I automatically get assigned to a “NET expert?” If someone tells me they are a “NET expert,” does that mean that person is a NET expert? What can I expect on my first appointment? What type of information do you try to communicate with your patients during the first appointment? Newly diagnosed patients often come to their first appointment feeling scared and overwhelmed. They wonder “how long do I have,” worry about how fast the cancer is growing, and are unsure of what to tell their family and friends. How do you address these concerns? What questions should I be asking my oncologist? When/how often should I see my medical oncologist? Who goes over my scan results with me? When does that happen/How soon after a scan should I expect results? Who communicates the tumor board discussions? How is care coordinated with other providers on my team within the same institution? How is care coordinated with other providers from different institutions (i.e. with a local oncologist and a NET expert)? What happens if someone wants a second opinion? How do you feel about second opinions? How do I navigate or work through a situation in which there are differing opinions between doctors? If I have a question, concern, or symptoms, who do I communicate with and what’s the best way to communicate? What if we “run out of time” during an appointment? What if it’s a question or concern I’m shy about communicating? Some people struggle with trust because of past experiences with providers who might have ignored or minimized their symptoms. What advice do you have to help build trust with my doctor? What would you say is my responsibility as a patient and your responsibility as the oncologist? If there is one thing you would like all people living with neuroendocrine cancer to know, what would it be? DISCLAIMER The Neuroendocrine Cancer Foundation Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of the Neuroendocrine Cancer Foundation. Please contact your medical team with questions or concerns about your individual care or treatment. THANK YOU TO OUR SPONSORS

<< Go back to the Podcast page EPISODE 10: PRRT (PART III) Download a Transcript of this Episode >> Listen to Episode 8: PRRT (Part One) with Administrative Nurse Lindy Gardner of UCLA Health >> Listen to Episode 9: PRRT (Part Two) with the Director of Nuclear Medicine of UCLA Health >> ABOUT THIS EPISODE How can patients make decisions about where, when, and what kind of PRRT to receive? How does PRRT in the USA differ from other parts of the world? Why does each institution have different post-PRRT radiation safety precautions? What is the patient experience with traveling after PRRT? Internationally recognized patient advocate and President of NorCal CarciNET Community, Josh Mailman, answers ten common questions about the past, present, and future of PRRT. Josh, whose journey has taken him from PRRT recipient to a seat on the Nuclear Regulatory Commission Advisory Committee, shares from his years of patient advocacy work in nuclear medicine and clarifies some misunderstandings about PRRT. MEET JOSH MAILMAN, MBA Josh Mailman was diagnosed with PNET in 2007. Josh is an internationally recognized advocate for NET patients as well as an advocate for integrative oncology and nuclear medicine and molecular imaging. He is the inaugural chair of the Society of Nuclear Medicine and Molecular Imaging’s (SNMMI) Patient Advocacy Advisory Board, a member of The Education and Research Foundation for Nuclear Medicine and Molecular Imaging (ERF) Board, acting COO the World Association of Radiopharmaceutical and Molecular Therapy (WARMTH), and president of NorCal CarciNET Community, one of the largest NET patient communities in the United States. In addition, he is a member of National Cancer Institute’s GI Steering Committee after being a member of the NCI Task Force on Neuroendocrine Tumors for seven years. Josh is also a member of the Board of Directors and Executive Committee of the Neuroendocrine Tumor Research Foundation(NETRF). He sits as the single patient member of NETRF's Scientific Advisory Committee which reviews research applications for private funding by this 501c3 foundation. In 2015, Josh was honored with the Warner Advocacy Award, given annually by Novartis Oncology Patient Advocacy and The NET Alliance. The award recognizes an individual for leadership and advocacy for neuroendocrine patients. In the same year, Josh was given the SNMMI’s President’s Award for his work on behalf of patients in the nuclear medicine field. Josh is a former executive board member of the Society for Integrative Oncology (SIO)and was named SIO Patient Advocate of Year in 2010. Josh is a frequent and sought-after speaker for his passionate and highly informed perspective on how patients can effectively participate in the process of working with key stakeholders to improve treatments and advance progress for better quality of life and eventual cures. TOP 10 PRRT QUESTIONS 1. PRRT was available for years outside the USA before it was available here. Why did it take so long before PRRT was available in the US? 2. How does PRRT differ in the USA versus in Europe and other parts of the world? 3. Why is PRRT so much more expensive in the US vs other places in the world? Is it covered by insurance / for lung NETS? 4. Now that Lutathera is more widely available, how does one go about deciding where to get treatment? (Does it matter if I get it locally vs a “NET center?”) / Does it matter where you go to receive your PRRT treatment? (Do I need to be going to a NET center to receive PRRT treatment?) 5. Some people are told they can only receive 4 doses of PRRT in their lifetime. What are your thoughts about this? Do we always need 4 treatments? / How might patients decide when to have repeat PRRT versus having another type of PRRT or another treatment? What might you need to consider as a patient and advocate? 6. What is the patient experience regarding traveling after PRRT? (Do I need to worry about setting off security alarms at airports? What about other security alarms such as at event venues or courthouses?) 7. How might patients go about deciding between various PRRT options (i.e. alpha versus beta)? What might you consider as a patient and as an advocate? 8. Some people are told that PRRT should be saved as a “last resort.” How would you respond? 9. What is your role as a member of the Nuclear Regulatory Commission’s Advisory Committee on the Medical Use of Isotope? 10. Talk a little bit about the release criteria and radiation safety precautions following Lutathera. Why is there a range of what patients are told? How does the process & procedure of radiation safety in the USA differ in the USA vs Europe and other parts of the world? ADDITIONAL RESOURCES Read the LACNETS Blog Post "These Four Letters: PRRT" >> Click here for additional PRRT Resources >> DISCLAIMER LACNETS Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of LACNETS. Please contact your medical team with questions or concerns about your individual care or treatment. THANK YOU TO OUR SPONSORS