The LACNETS Podcast - Top 10 FAQs with neuroendocrine tumor (NET) experts

What is Carcinoid Heart Disease (CHD)? Which NET patients develop CHD?  Retired cardiologist and carcinoid heart disease specialist Dr. Jerome Zacks provides an overview of CHD and describes the appropriate screening, diagnosis, and treatment. MEET DR. JEROME ZACKSDr. Jerome Zacks is a Cardiologist/Carcinoid Heart Disease Specialist; retired since December of 2021; but remain active as Associate Clinical Professor of Medicine at the Icahn Medical School at Mount Sinai in New York City and founding member of the Center for Carcinoid and Neuroendocrine Tumors at the Icahn Medical School at Mount Sinai; founder of the Carcinoid Heart Center; formerly on the Medical Advisory Board of the Carcinoid Cancer Foundation;  currently head the Electrocardiography course for the 4th Year Medical Student elective at the Mt. Sinai Medical Center which has resulted in an international reputation among students seeking Cardiology training in the United States.  He has expertise in matters of health care Insurance Carriers' theft of funds from the Medicare program, has studied patterns of abuse in the Medicaid program and has extensive knowledge of pharmaceutical company abusive practices. Dr. Zacks continues to devote time to the care of patients with Carcinoid Heart Disease. He has served as a member of the Guidelines Committees of the European Neuroendocrine Tumor Society (ENETS) and of the North American Neuroendocrine Tumor Society (NANETS).   He developed a new approach to compression stockings for patients with leg edema; he was granted a patent for this innovation.  He has authored two national petitions urging Congress to mandate that any health care professional who uses one's license, in making decisions which influence a patient's care, be held to the SAME STANDARD OF CARE as the patient's treating professional. (These two petitions were blocked by Senator Cory Booker.)  In his role as patients' physician, he has attempted to remove barriers of communication.  His business card includes his personal mobile phone number as well as his email address and website information; He encourages patients to phone for immediate answers to urgent matters.  Along with his wife, Yelena - an RN- they have devoted their professional lives to patients with heart disease from rare Neuroendocrine tumors. They have mentored 5 children, and are now learning from them and their 6 grandchildren have provided the real fuel and excitement for their lives.For more information, visit https://www.ncf.net/podcast/43For more information, visit LACNETS.org.

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) that she created and hosted, and she relates these topics to NET patients and their loved ones.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?For more information, visit LACNETS.org.

In this special episode, Oregon Health & Sciences University (OHSU) Medical oncologist Dr. Guillaume (Will) Pegna recaps the North American Neuroendocrine Tumor Society (NANETS) 2024 Multidisciplinary NET Medical Symposium. He shares the latest developments in NET research and medical advances from the conference and how they matter to the NET patient community.MEET DR. GUILLAUME PEGNADr. Pegna is a medical oncologist specializing in caring for adults with neuroendocrine tumors (NETs). He is additionally interested and experienced in the management of rare tumors, including pheochromocytomas, paragangliomas and adrenocortical carcinomas, as well as other gastrointestinal cancers.Dr. Pegna is actively involved with clinical trials and cancer research to improve survival and quality of life for cancer patients and to better understand the biology of these diseases. He specializes in the use of chemotherapy, immunotherapy and multidisciplinary approaches to cancer care. Dr. Pegna finds it rewarding to help patients understand their disease, providing treatment options based on each individual patient and supporting them through their treatment journeys.For more information, visit LACNETS.org/podcast/41. For more information, visit LACNETS.org.

ABOUT THIS EPISODEWhat is radiation oncology, and how is it used for neuroendocrine cancer? UCSF radiation oncologists Dr. Will Chen and Dr. Alexandra Hotca-Cho describe external radiation therapy (SBRT) and how, when, and where it may be used for select patients with neuroendocrine cancers. They address common concerns about the planning process, safety concerns, and treatment sequencing.TOP TEN QUESTIONS ABOUT EXTERNAL RADIATION THERAPY FOR NEUROENDOCRINE CANCERS:1. What is radiation oncology? How does it work? How is it different from other types of radiation?2. What are the types of radiation therapies used for neuroendocrine cancer? 3. Which neuroendocrine cancers are they used for, and when are they used? How do you decide who is a good candidate and if it will be effective?Where in the body can SBRT be used? (bone, liver, pancreas, rectal?) Where can it not be used in the body, and when is SBRT NOT used?Is there a number or size limit of the tumor(s)?4. For Bone: How do NETs affect the bones? Are they “on” or “in” the bone, and does the tumor tend to weaken it?If given to the bone, does SBRT weaken the bone? What are the chances of fracture with radiation to the bone? Does it matter which area of the bone/body is treated? What other factors influence fracture risk? (age, dose, number of treatments)? Should patients have a bone density scan before SBRT?If bone lesions are causing pain, how soon after treatment might a patient expect to have pain alleviated?How common is increased pain after treatment to the bone? What causes that?5. Safety: How much radiation is given with these procedures? Is there a concern about radiation safety following the procedures? (Do patients need to avoid others in the hours or days after the treatment?)Is there a lifetime limit to the amount of radiation one can receive, especially considering surveillance CT & PET scans?How often can these procedures be repeated? Does it damage other tissues or organs? How common are secondary cancers? What types and how treatable are they?Is there a risk with fertility?What other risks are there?6. How do these therapies compare to PRRT or radioembolization in terms of safety? If someone has had PRRT or radioembolization, can they also receive radiation therapy to the liver or bones? Is there increased risks if someone has had PRRT, radioembolization or CAPTEM or alkylating agents? 7. Is there an optimal sequence for treatments? 8. What is SBRT like for patients? What is the planning and preparation process? How do you determine how many treatments and what dose to give?9. What does the patient experience during and after the procedure? Does it hurt? What are the side effects? How much time do I need to take off of work? 10. How effective is SBRT in terms of managing symptoms? How effective is SBRT in controlling or destroying the tumor?  How do you know if the treatment “worked”?Bonus: What is the future of radiation therapy in neuroendocrine cancer treatment?For more information, visit LACNETS.org.

ABOUT THIS EPISODEIn this 2-part series, Dr. Osman Ahmed from the University of Chicago covers liver-directed therapies for neuroendocrine neoplasms (NENs or neuroendocrine cancer). In this second episode, he details the embolization techniques, including bland embolization (TAE), chemoembolization (TACE), and radioembolization (TARE, SIRT, y90). He discusses decision-making, sequencing, and follow-up after these procedures.TOP TEN QUESTIONS ABOUT LIVER-DIRECTED THERAPY PART 2:1. What do patients need to know about bland embolization (TAE)? a. What are the possible side effects? b. How do the size of beads play a role? c. When is this recommended? d. Do you always do both sides of the liver? If so, what is the timing and why? e. What is the recovery like? What is post-embolization syndrome?2. What do patients need to know about chemoembolization (TACE)?a. What drug is used & does this go through the whole body? b. What is the recovery like? What are the possible side effects?3. What do patients need to know about radioembolization (TARE, SIRT, y90)? a. In the era of PRRT, is there a concern with using y90 or radioembolization? How is the approach and technique used with radioembolization different than how it was done in the past? Is there a total lifetime limit of radiation?b. What is the recovery like? What are the possible side effects?4. Is there a limit to how much LDT one can do? Can they be repeated?5. How does one decide between the various types of liver-directed therapies?6. Is there a sequencing to treatments?7. Are there certain treatments that make you ineligible for other treatments? [PRRT, chemo, y90 etc] 8. If someone has had surgery such as a Whipple or surgery or procedures involving the bile duct, such as a stent in the bile duct or surgical removal of part of the bile duct, how does this weigh into the decision-making process for LDT?9. How do you determine if the treatment “worked?” What is the follow-up like? What scan might you do and in what timing?10. What do you see as the future of liver-directed therapy in neuroendocrine cancer treatment? MEET DR. OSMAN AHMEDOsman Ahmed, MD, is an expert vascular and interventional radiologist who diagnoses and treats a wide range of conditions. Using image-guided technology and small, sophisticated instruments, Dr. Ahmed performs minimally invasive procedures for acute and chronic deep vein thrombosis, benign prostatic hyperplasia, peripheral vascular disease, liver/bone/lung/kidney cancer, spinal fractures, uterine fibroids and more. He also implants inferior vena cava (IVC) filters, which prevent a blood clot from traveling around the body or creating a blockage.In addition to his clinical expertise, Dr. Ahmed researches novel treatment options that improve outcomes for patients. His research on liver cancer, IVC filters and venous diseases has been published in several high-impact, peer-reviewed journals, including the Journal of Vascular and Interventional Radiology, Radiology, Chest, Journal of American College of Radiology, and Journal of Surgical Oncology.Dr. Ahmed also believes in the importance of educating medical students, residents, fellowships and peers in order to enhance health care across the world. He has been invited to speak at a number of symposiums, practicums and national/international meetings about the newest advancements in interventional radiology.For more information, visit https://www.lacnets.org/lacnets-podcastFor more information, visit LACNETS.org.

ABOUT THIS EPISODEIn this 2-part series, Dr. Osman Ahmed from University of Chicago covers liver-directed therapies for neuroendocrine neoplasms (NENs or neuroendocrine cancer). In this first episode, he outlines the types of liver-directed therapies and elaborates on ablative techniques including the newest technique, histotripsy. Listen to a frank discussion of how histotripsy works, when it might be used, and what its current limitations are.TOP TEN QUESTIONS ABOUT LIVER-DIRECTED THERAPY INCLUDING HISTOTRIPSY:What is liver-directed therapy? How does it work? Is this considered “surgery”? What is a surgery and what is a “procedure?”What are the types of liver-directed therapies used for neuroendocrine cancer? Which neuroendocrine cancers are they used for and when are they used? How do you decide who is a good candidate and if it will be effective?When are liver-directed therapies NOT used? Can someone who has had a Whipple undergo liver-directed therapy?What is the ablation zone? What is a heat sink effect?What is histotripsy? How does it work?When is histotripsy used (tumor grade, type of tumor - PNET/lung NET, size, number of tumor, location)? Can they be used for liver tumors even if there are tumors outside the liver?What are the limitations to histotripsy? What happens to the liver tissue after ablation? What are the results or success rates of patients being treated? Can histotripsy “cure” NET? How do you decide between the various types of liver-directed therapies? MEET DR. OSMAN AHMED:Osman Ahmed, MD, is an expert vascular and interventional radiologist who diagnoses and treats a wide range of conditions. Using image-guided technology and small, sophisticated instruments, Dr. Ahmed performs minimally invasive procedures for acute and chronic deep vein thrombosis, benign prostatic hyperplasia, peripheral vascular disease, liver/bone/lung/kidney cancer, spinal fractures, uterine fibroids and more. He also implants inferior vena cava (IVC) filters, which prevent a blood clot from traveling around the body or creating a blockage.In addition to his clinical expertise, Dr. Ahmed researches novel treatment options that improve outcomes for patients. His research on liver cancer, IVC filters and venous diseases has been published in several high-impact, peer-reviewed journals, including the Journal of Vascular and Interventional Radiology, Radiology, Chest, Journal of American College of Radiology, and Journal of Surgical Oncology.Dr. Ahmed also believes in the importance of educating medical students, residents, fellowships and peers in order to enhance health care across the world. He has been invited to speak at a number of symposiums, practicums and national/international meetings about the newest advancements in interventional radiology.Visit lacnets.org/podcast/38 for the podcast, transcript, and resources. For more information, visit LACNETS.org.

What is supportive care or supportive oncology? What is cancer-related distress? How might NET patients benefit from supportive care? Yale oncologist Dr. Maryam Lustberg suggests strategies to manage cancer-related fatigue, diarrhea, nausea, mouth sores, peripheral neuropathy, distress, anxiety, and anxiety. She also addresses considerations for fertility and sexual health.MEET DR. MARYAM LUSTBERGDr. Maryam Lustberg is an American breast oncologist. She is the Director of The Breast Center at Smilow Cancer Hospital and Chief ofBreast Medical Oncology at Yale Cancer Center. Dr. Lustberg previously served as the Medical Director of Cancer Supportive Care Services atOhio State's Comprehensive Cancer Center. She is the Immediate Past President of the Multinational Association of Supportive Care in Cancer. She is also an Associate Editor for the Journal of Cancer Survivorship.TOP TEN QUESTIONS ABOUT SUPPORTIVE CARE: What is supportive care in cancer (or supportive oncology)? What is survivorship? How do these concepts apply to the NET community?What is the 1st step for patients to get supportive care?What are the most common treated-related adverse events or side effects? What are risk factors for them? (Will all patients experience all potential side effects?)What causes cancer-related fatigue (CRF)? What are some strategies to manage cancer-related fatigue?What are some strategies to manage diarrhea?What are some strategies to manage nausea?What are some strategies to manage mouth sores?What is peripheral neuropathy? When do patients experience it and what can be done to prevent it?What should patients understand about sexual health and fertility?How can psychosocial needs such as distress, anxiety, and depression be addressed and supported?For more information, please visit https://www.lacnets.org/podcast/37. For more information, visit LACNETS.org.

ABOUT THIS EPISODEWhat is immunotherapy? How effective are they for neuroendocrine neoplasms (NENs)? Dr. Jennifer Eads from Penn Medicine answers common questions about immunotherapy. She discusses the latest in CAR T therapy, DLL3, and vaccine therapy for NENs. TOP TEN QUESTIONS ABOUT IMMUNOTHERAPY FOR NENS:What is immunotherapy? How does it work? How does immunotherapy differ from other treatments? When is immunotherapy used? Which neuroendocrine cancers are they used for? What are the various immunotherapy drugs used for neuroendocrine cancer and how do they work? What are immune checkpoint inhibitors?What is CAR-T therapy?What is DLL3?What is vaccine therapy?What side effects might someone have when taking immunotherapy? How does it make me look (will I lose my hair)? How will it make me feel (will I be able to work)? Does immunotherapy cause someone to be immunocompromised? What monitoring needs to be done while on immunotherapy?How do you decide when to use immunotherapy, which to use, and for what patient?What do you see as the future of immunotherapy in neuroendocrine cancer treatment? MEET DR. JENNIFER EADS, MDDr. Jennifer Eads is an associate professor of medicine at the University of Pennsylvania, Abramson Cancer Center where she is a gastrointestinal medical oncologist focusing on the treatment of and research in patients with neuroendocrine tumors and gastroesophageal cancers. She is the Physician Lead for GI Clinical Research, overseeing the Penn GI clinical research portfolio. She is the Penn institutional principal investigator for the Eastern Cooperative Oncology Group (ECOG-ACRIN) and serves as the Director of the National Clinical Trials Network (NCTN) for the Abramson Cancer Center. She has served as principal investigator for multiple phase I/II/III clinical trials, including as the national study chair for multiple cooperative group trials. She has served on the National Clinical Cancer Network (NCCN) neuroendocrine tumors guidelines committee, is a former member of the North American Neuroendocrine Tumor Society (NANETS) Board of Directors and is currently on the Board of Scientific Advisors for the Neuroendocrine Tumor Research Foundation (NETRF). In 2022, she was named as the ECOG-ACRIN Young Investigator of the Year.For more information, visit lacnets.org/lacnets-podcast/36For more information, visit LACNETS.org.

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.TOP TEN QUESTIONS ABOUT CHEMOTHERAPY FOR NENS: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? MEET PAMELA L. KUNZ, MDDr. 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.For more information, visit LACNETS.org.

What is PRRT? How is it different from the more commonly used radiation treatment? What are the possible side effects? Dr. Riham El Khouli from the University of Kentucky in Lexington discusses common questions and concerns about PRRT and shares some of the latest advances.MEET DR. RIHAM EL KHOULI, MD, PHDAssociate Professor of Radiology, UK College of MedicineChief, Division of Nuclear Medicine/Molecular Imaging & Radiotheranostics (NM/MI&R)Director, Radiotheranostics ProgramUniversity of KentuckyDr. Riham El Khouli, MD PhD, is the director of the Radiotheranostics program and Chief of the division of NM/MI&R at the University of Kentucky and an Associate Professor of Radiology, Nuclear Medicine and Molecular Imaging at UK school of Medicine.TOP TEN QUESTIONS ABOUT NET TREATMENTS:1. What is PRRT?  How does it work? 2. What is theranostics and what does it mean? What are the terms radiotheranostics, radiopharmaceutical, radioligand therapy, PRRT?3. How do you determine who is eligible for PRRT?4. When is PRRT given in one's treatment journey? 5. How does PRRT differ from other treatments?6. What are the common side effects of Lutathera?a. Does Lutathera have long-lasting effects?b. Would receiving Lutathera affect one's blood counts?c. How might Lutathera affect one's liver function? When, if ever is there concern about liver failure?7. How might PRRT affect my quality of life and my day-to-day ability to work and function? What is the risk and effects of radiation with receiving Lutathera? a. What precautions do I need to follow?b. Can I hug my child? Can I pet my dog? c. Would receiving Lutathera cause someone to be immunocompromised? 8. How to you decide who should get PRRT?a. What is peritoneal disease and how effective is PRRT with peritoneal disease?9. How do you assess the response to PRRT? 10. What advances in PRRT are you most excited about? Visit https://www.lacnets.org/podcast/34. For more information, visit LACNETS.org.

ABOUT THIS EPISODEWhat are Targeted Therapies and how do they work? How and when would they be used in NETs? Dr. Scott Paulson from Baylor Cancer Center in Dallas discusses common questions and concerns about targeted therapies including side effects, dosing and treatment sequencing. Bonus: Dr. Paulson shares how we can learn from Harry Potter's invisibility cloak in understanding treatment goals with NETs.MEET DR. SCOTT PAULSONDr. Paulson is a medical oncologist and the medical director for the Neuroendocrine Research and Treatment Center at Baylor Charles A. Sammons Cancer Center in Dallas, Texas. He also serves as the co-director of the Gastrointestinal Research Program for the Sarah Cannon Research Institute.Dr. Paulson earned his medical doctorate at The University of Texas Southwestern Medical School. He took his residency and an internship in internal medicine at Brigham and Women's Hospital in Boston, Massachuests. His fellowship was completed in medical oncology at the University of California, San Francisco.  Dr. Paulson is active in clinical research focused on neuroendocrine tumors as well as cancers of the pancreas, liver, esophagus, stomach, and colon. Dr. Paulson is active in clinical research focused on neuroendocrine tumors as well as cancers of the pancreas, liver, esophagus, stomach, and colon. He currently is an investigator on a clinical trial studying nab-sirolimus, a mTOR inhibitor, which is a type of targeted therapy.TOP TEN QUESTIONS ABOUT TARGETED THERAPIES FOR NETs:1. What are targeted therapies?  Are they considered chemotherapy? How do they work?2. What are the different types of targeted therapies for NETs?3. When and how are targeted therapies used?4. What side effects might someone have when taking a targeted therapy? a.Can targeted therapies affect blood sugars or cause diabetes?b. Can targeted therapies cause one to be immunocompromised?c. Can targeted therapies affect one's blood counts?5. What is the goal of treatment with targeted therapies? (Why would one take these drugs given the potential side effects? Can the side effects be managed?)6. How do you decide which targeted therapy to recommend for a patient?7. Can a NET patient take more than one drug in this category? Can the medications be stopped and restarted?8. What is your approach with dosing?9. What is your approach with monitoring? What and how often do people need blood work?10. Does taking a targeted therapy preclude someone from getting another treatment in the future, such as Lutathera/PRRT, or a clinical trial of alpha PRRT?BONUS: What are the latest advances in targeted therapy? What is the future of targeted therapies?For more information, please visit https://www.lacnets.org/podcast/33. For more information, visit LACNETS.org.

How do SSAs work? Should all NET patients be on one? What are the side effects? Dr. Edward Wolin from Mount Sinai Health System answers several common questions about the current and future role of somatostatin analogues in NET treatment. MEET Dr. EDWARD M. WOLINProfessor of Medicine, Medical Oncology, Icahn School of Medicine Director, Center for Carcinoid and Neuroendocrine Tumors Tisch Cancer Institute, Mount Sinai Health SystemDr. Edward M. Wolin is an internationally renowned authority on neuroendocrine tumors. Dr. Wolin is the Director of the Center for Carcinoid and Neuroendocrine Tumors at the Tisch Cancer Institute at Mount Sinai and Professor of Medicine, Medical Oncology at the Icahn School of Medicine at Mount Sinai.The multidisciplinary Center for Carcinoid and Neuroendocrine Tumors features a robust research program with clinical trials aimed at finding the most effective treatments, including immunotherapy, biologic agents, targeted radiation therapy, and new approaches in molecular imaging for diagnosis. Dr. Wolin has pioneered innovative therapies with novel somatostatin analogs, mTOR inhibitors, anti-angiogenic drugs, and peptide receptor radiotherapy.Prior to joining Mount Sinai, Dr. Wolin was Director of the Neuroendocrine Tumor Program at Montefiore Einstein Cancer Center. Previously, he worked for more than two decades with Cedars-Sinai Medical Center in Los Angeles, where he founded and directed one of the largest Carcinoid and Neuroendocrine Tumor Programs in the country, and subsequently directed the Neuroendocrine Tumor Program at University of Kentucky. Dr. Wolin is also the Co-Medical Director for the Carcinoid Cancer Foundation and is on the Carcinoid Cancer Research Grants Scientific Review Committee for the American Association for Cancer Research. He has published in many prestigious journals, including the New England Journal of Medicine and Journal of Clinical Oncology, and is a reviewer for numerous journals, including Journal of Clinical Oncology, Molecular Cancer Therapeutics, Clinical Cancer Research, and The Lancet Oncology.During Dr. Wolin's two decades at Cedars-Sinai Medical Center in Los Angeles, he developed a close friendship with LACNETS founder Giovanna Joyce Imbesi. Dr. Wolin was instrumental in the co-founding and development of LACNETS. LACNETS has always been very dear to his heart and he cherishes and honors the memory of Giovanna. Dr. Wolin earned his medical degree from Yale School of Medicine. He completed both his residency in internal medicine and fellowship in medical oncology at Stanford University Hospital. He was also a clinical fellow at the National Cancer Institute of the National Institutes of Health. Dr. Wolin is board certified in internal medicine and medical oncology.TOP TEN QUESTIONS ABOUT SOMATOSTATIN ANALOGUES (SSAs) FOR NETS:1. What are somatostatin analogues (SSAs)? How do they work? 2. When and how are SSAs used?3. Which SSA should a patient be on? What is the difference? How do you decide?4. How do you know if a SSA will be helpful? Should ALL NET patients be on a SSA?5. What about patients whose tumors don't “light up” on a DOTATATE scan?6. How long can someone stay on a SSA?7. What side effects may patients experience from the shot? What can patients do to prevent or manage these symptoms? How might it affect one's day-to-day ability to work and function? Can I live a “normal life” while taking this medication? 8. If the tumor is growing does this mean the SSA did not work? Do you continue it when patients are treated with another treatment? When do you stop a SSA?9. What is the future of SSAs? I heard there is a pill that is available in a clinical trial. CaFor more information, visit LACNETS.org.

In this two-part series, we reprise “Navigating Clinical Trials: Expectations vs. Realities” with Taymeyah Al-Toubah. This was previously broadcast on August 19th, 2023, as a LACNETS monthly educational webinar. In Part 1, Taymeyah discusses clinical trial terminology, timeline, questions to ask, and misconceptions. In Part 2, Taymeyah answers questions about logistics and practical aspects of clinical trials, such as costs, response time, and follow-up. She also answers frequently asked questions about PRRT trials, including alpha trials.MEET TAYMEYAH AL-TOUBAH, MPHTaymeyah Al-Toubah is a clinical researcher, currently at Moffitt Cancer Center, who has been in the research field for 10 years. She began her career in 2013 while obtaining her bachelor's degrees in biomedical sciences and psychology, working in pediatric and neonatal research at Johns Hopkins All Children's Hospital. In 2016, she shifted her career focus to oncology, beginning with phase I trials and working in all solid tumors. She completed her Master of Public Health in Epidemiology in 2017 and focused her graduate thesis on neuroendocrine tumors. In 2018, she switched departments to focus exclusively on NETs.From 2018 – 2023, she was the primary NET coordinator in the GI department, managing all clinical trials while leading the GI team, managing the NET clinic coordination amongst the ancillary departments, and working on all retrospective and non-interventional NET research. She has worked on protocol development, database analysis, and manuscript writing, resulting in over 30 published manuscripts and presented her research at several national and international oncology and NET conferences, with oral abstracts at several ENETS and NANETS conferences.In April 2023, she formally transitioned to a new position as a project manager of the NET program, where she will continue to mentor new coordinators while working on protocol development and writing, manuscript writing, non-interventional clinical trials, and retrospective NET research. One of her first major projects will be to curate and develop a master database of all NET patients seen at her institution that will provide the basis for all future NET research to be published at Moffitt.She is currently on the board of one of the first NET patient advocacy groups in Florida (FLaNET Carcinoid Community), which kicked off alongside the Tampa Regional NANETS meeting in November 2022. She is an active member of NANETS on the Continuing Education and Symposium Planning committees.She plans to dedicate the remainder of her career to this disease and community. Her ultimate plan is to attend medical school, specialize in medical oncology, and continue to serve the academic NET community and patient base as a physician and clinical investigator.For more information, visit LACNETS.org.

In this two-part series, we reprise “Navigating Clinical Trials: Expectations vs. Realities” with Taymeyah Al-Toubah. This was previously broadcast on August 19th, 2023, as a LACNETS monthly educational webinar. In Part 1, Taymeyah discusses clinical trial terminology, timeline, questions to ask, and misconceptions. In Part 2, Taymeyah answers questions about logistics and practical aspects of clinical trials, such as costs, response time, and follow-up. She also answers frequently asked questions about PRRT trials, including alpha trials. MEET TAYMEYAH AL-TOUBAH, MPHTaymeyah Al-Toubah is a clinical researcher, currently at Moffitt Cancer Center, who has been in the research field for 10 years. She began her career in 2013 while obtaining her bachelor's degrees in biomedical sciences and psychology, working in pediatric and neonatal research at Johns Hopkins All Children's Hospital. In 2016, she shifted her career focus to oncology, beginning with phase I trials and working in all solid tumors. She completed her Master of Public Health in Epidemiology in 2017 and focused her graduate thesis on neuroendocrine tumors. In 2018, she switched departments to focus exclusively on NETs.From 2018 – 2023, she was the primary NET coordinator in the GI department, managing all clinical trials while leading the GI team, managing the NET clinic coordination amongst the ancillary departments, and working on all retrospective and non-interventional NET research. She has worked on protocol development, database analysis, and manuscript writing, resulting in over 30 published manuscripts and presented her research at several national and international oncology and NET conferences, with oral abstracts at several ENETS and NANETS conferences.In April 2023, she formally transitioned to a new position as a project manager of the NET program, where she will continue to mentor new coordinators while working on protocol development and writing, manuscript writing, non-interventional clinical trials, and retrospective NET research. One of her first major projects will be to curate and develop a master database of all NET patients seen at her institution that will provide the basis for all future NET research to be published at Moffitt.She is currently on the board of one of the first NET patient advocacy groups in Florida (FLaNET Carcinoid Community), which kicked off alongside the Tampa Regional NANETS meeting in November 2022. She is an active member of NANETS on the Continuing Education and Symposium Planning committees.She plans to dedicate the remainder of her career to this disease and community. Her ultimate plan is to attend medical school, specialize in medical oncology, and continue to serve the academic NET community and patient base as a physician and clinical investigator.For more information, visit LACNETS.org.

When and how often do NETs spread to the bones or brain? How are they found? What is the treatment? Dr. Robert Ramirez of Vanderbilt University addresses concerns surrounding bone metastases (or “mets”) as well as rare brain metastases.MEET DR. ROBERT RAMIREZ, DO, FACP Dr. Robert Ramirez is a medical oncologist specializing in the treatment of thoracic and neuroendocrine malignancies and an Associate Professor of Medicine at Vanderbilt University Medical Center in Nashville, TN.  He earned his medical degree from the University of Medicine and Dentistry of New Jersey School of Osteopathic Medicine. He completed an internal medicine residency at Cooper University Hospital in Camden, New Jersey. He then completed a hematology and medical oncology fellowship at the University of Tennessee Health Sciences Center in Memphis, Tennessee and served as chief fellow. He is a Fellow of the American College of Physicians, and a member of American Society of Clinical Oncology, the International Association for the Study of Lung Cancer (IASLC), and the North American Neuroendocrine Tumor Society (NANETS).  He serves on the Board of Directors for NANETS as well as the Scientific Review and Research Committee.His clinical and research interests include neuroendocrine tumors (NETs) and lung cancer.  He has a specific interest in NETs of the lung ranging from diffuse idiopathic pulmonary neuroendocrine tumor cell hyperplasia (DIPNECH) and carcinoid tumors to small cell lung cancer and other high-grade neuroendocrine carcinomas. He is active in clinical trial design including investigator-initiated trials. He enjoys teaching residents and fellows and has multiple publications and given many lectures for the scientific community on the topics of NETs and lung cancers.TOP TEN QUESTIONSBone mets:1. When and how often do NETs spread to the bones? 2. Where in the bones are tumors? What does it mean when NETs spread to the bones? How does this compare to other cancers?3. How are bone spots found and monitored? Should they be biopsied?4. What is the treatment for bone mets? Should I have radiation? Would radiation limit my ability to get PRRT?5. Should I be on bone strengthening medication? Am I at higher risk for fractures (or breaking my bones) if I have NETs in the bones?6. Do bone mets respond to PRRT?7. Does having bone mets put me at a higher risk of MDS?Brain mets:8. When and how often do NETs spread to the brain? Do all types of NETs have the potential to spread to the brain?9.    How are brain mets found and monitored? When should I suspect this?10.  How are brain mets treated? What does having brain mets mean for my life?*Bonus: What final words of hope do you have for the neuroendocrine cancer community?For more information, visit LACNETS.org.

NET dietician Sina Teskey from the Medical College of Wisconsin answers common questions about diet and nutrition raised among NET patients and caregivers. She addresses special diets, food restrictions, and whether sugar “feeds” cancer. Sina also speaks to diarrhea, and digestive enzymes and shares tips on how to maintain nutrition and weight.MEET SINA TESKEY, RD, CD Sina Teskey, RD, CD received her B.S. from the University of Wisconsin-Madison in 2006 and completed her dietetic internship at the University of Minnesota Medical College-Fairview in 2007. She has spent most of her career working with cancer and eating disorder patients. Sina practiced in the Twin Cities area for 10 years where she also spent time guest starring on a local TV show called Twin Cities Live to share nutrition advice. She moved to Milwaukee and has worked at Froedtert Hospital and the Medical College of Wisconsin since 2018. Sina sees all patients with cancer but specializes in GI cancers and neuroendocrine tumor patients. When she's not working, Sina is a mom to three kids and a Labrador retriever. She loves to cook and bring people together with food. Her youngest son was diagnosed with non-Hodgkin's Lymphoma in 2019. His cancer journey gave insight into what having cancer means to a family and has impacted her practice profoundly.  Her son Milo is now 7 years old and in remission.TOP TEN QUESTIONSIs there a diet NET patients should follow? Are there foods NET patients should avoid? Some people say there are certain “trigger foods” to avoid. What CAN I eat?What diet is helpful after bowel surgery? What about pancreas surgery?Are there vitamins or supplements recommended for NET patients?What can NET patients do about diarrhea? What diet or medications might help?What can NET patients do if they struggle with a poor appetite?What can NET patients do if they are struggling to keep on or gain weight?What can NET patients do to stay hydrated?What are pancreatic enzymes and how are they taken? Who are they recommended for?What proteins can people take if they are vegetarian or vegan given soy may be a trigger for carcinoid syndrome?What do you think of alternative diets such as the keto diet or other “special diets?” Does sugar feed cancer? What about intermittent fasting?For more information, visit For more information, visit LACNETS.org.

In this special episode, Oregon Health & Sciences University (OHSU) Medical oncologist, Dr. Guillaume (Will) Pegna, recaps the North American Neuroendocrine Tumor Society (NANETS) 2023 Multidisciplinary NET Medical Symposium. He shares the latest developments in NET research and medical advances from the conference and discusses why they matter to the NET patient community.MEET DR. GUILLAUME PEGNA Dr. Pegna is a medical oncologist who specializes in the care of adults with neuroendocrine tumors (NETs). He is additionally interested and experienced in the management of rare tumors including pheochromocytomas, paragangliomas, and adrenocortical carcinomas as well as other gastrointestinal cancers. Dr. Pegna is actively involved with clinical trials and cancer research to improve survival and quality of life for cancer patients and to better understand the biology of these diseases. He specializes in the use of chemotherapy, immunotherapy, and multidisciplinary approaches to cancer care. Dr. Pegna finds it rewarding to help patients understand their disease, providing treatment options based on each individual patient, and supporting them through their treatment journeys.For more information, visit LACNETS.org/podcast/28For more information, visit LACNETS.org.

What do you call NETs in the liver? How often do NETs spread? 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.ABOUT DR. XAVIER KEUTGENXavier 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? For more information, visit LACNETS.org.

What are lung NETs? What is DIPNECH? How is lung NET similar or different from lung cancer? Dr. Vineeth Sukrithan from Ohio State University Comprehensive Cancer Center gives a comprehensive overview of lung NET and DIPNECH, including the work-up and treatment options. He also discusses open clinical trials and exciting advances in lung NET research on the horizon.For more information, visit LACNETS.org/podcast/24. For more information, visit LACNETS.org.For more information, visit LACNETS.org.

What are Grade 3 Poorly Differentiated Neuroendocrine Carcinoma (NEC)? What makes NEC unique? Can a NET transform to NEC? Dr Nitja Raj from Memorial Sloan Kettering Cancer Center in New York City explains NEC tumor biology and how it guides treatment strategy. She also discusses current clinical trials and research.For more information, visit LACNETS.org/podcast/24. For more information, visit LACNETS.org.

What are grade 3 NETs and how is it different from grade 3 NEC and other types of NETs? Dr. Mohamad (Bassam) Sonbol from Mayo Clinic in Phoenix, Arizona, enlightens us on this fairly new entity, including treatment options, treatment sequencing and clinical trials.For more information, visit LACNETS.org/podcast/24. For more information, visit LACNETS.org.

What are Hindgut NETs (distal colon and rectum), and how are they treated? How is rectal NET different from rectal cancer? What makes appendiceal NETs difficult to diagnose? Dr. Hagen Kennecke from Providence Cancer Institute in Portland, Oregon, shares insights on the diagnosis and management of Hindgut NETs and appendix NET.For more information, visit LACNETS.org/podcast23 for the transcript and resources. For more information, visit LACNETS.org.

What is the difference between Pancreatic Neuroendocrine Tumor (PNET) and Pancreatic Cancer? Where exactly is the pancreas located and why is the tumor location important? NET Oncologist Dr. Jennifer Chan from Dana-Farber Cancer Institute takes us through how some treatments, imaging and blood work are unique to PNETs. She also expounds on several ongoing and active trials.For more information, visit LACNETS.org.

How are small bowel NETs diagnosed, treated, and monitored? How is it different from other types of NETs? What are some exciting new treatments for small bowel NETs? NET oncologist, Dr. David Zhen of Fred Hutch Cancer Center in Seattle answers 10 common questions about small bowel NETs. Visit LACNETS.org/podcast21 for the transcript and resources. For more information, visit LACNETS.org.

 Gastroenterologist and Neuroendocrinologist Dr. David C. Metz discusses important concepts in Gastric NET, Gastrinomas and Zollinger-Ellison Syndrome, including detection, treatments, associated risks and monitoring. He also lends valuable insight on ulcers, MEN and proton pump inhibitors. Visit LACNETS.org/podcast20 for the transcript and resources. For more information, visit LACNETS.org.

Take a glimpse through the microscope and learn how pathology determines your NET diagnosis and guides treatment. How does one interpret differing Ki-67 results from the same specimen? Why might a patient have two different Ki-67 results from different specimens? How does pathology distinguish G3 well-differentiated NET from NEC? How does pathology help with NET tumors of unknown origin? NET pathologist Dr. Andrew M. Bellizzi from the University of Iowa sheds light on just how much information a tiny tissue sample may contain.For more information, visit LACNETS.org.

What are the common mental health issues associated with NET? How can they be managed? How does NET impact young adults, NET patients and children of NET patients?  Health psychologist Dr. Kersting of the Medical College of Wisconsin, elaborates on mental health challenges facing NET patients and their loved ones. Hear coping strategies for anxiety, eating and sleeping difficulties, fatigue and depression. Dr. Kersting discusses what you can expect when meeting a mental health professional and why supporting your mental health is an integral part of your overall care.Visit LACNETS.Org/Podcast18For more information, visit LACNETS.org.

 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. For more information, visit LACNETS.org.

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. For more information, visit LACNETS.org.

What is psycho-oncology and how can it benefit those living with NET? Psychiatrist Dr. Mona Mojtahedzadeh, MD of Simms/Mann UCLA Center for Integrative Oncology discusses whole-person care for cancer patients and caregivers. From “scanxiety” to sleep hygiene, she acknowledges the range of challenges of living with cancer and shares solutions to improve mental well-being and overall health. Listen now!For more information, visit LACNETS.org.

What is palliative care? How does it differ from hospice? What advice do you have for NET caregivers?  Trained Hospice & Palliative Medicine Physician Dr. Chandana Banerjee of City of Hope addresses ten common questions about palliative care. Listen now!For more information, visit LACNETS.org.

Is it okay for NET patients to take “statin” medications to lower cholesterol or SSRI medication for depression? How often should full body scans be done? NET oncologist Dr. Jun Gong of Cedars-Sinai Medical Center addresses ten common questions you might ask your NET oncologist along your NET journey. Listen now!For more information, visit LACNETS.org.

In honor of Pheo Para Awareness Week, NET endocrinologist and medical oncologist Dr. Jaydira Del Rivero of the National Cancer Institute answers ten common questions about pheochromocytoma and paraganglioma (PPGL). Dr. Del Rivero defines PPGL and describes the unique symptoms, genetic testing, and treatment options for PPGL. Listen now!Additional PPGL resources can be found here: www.lacnets.org/pheo-para-resourcesFor more information, visit LACNETS.org.

How do you understand your pathology report? What is tumor grade, differentiation, mitotic index, and ki67? How do you get a second opinion on your pathology?  NET expert and pathologist Dr. Sue Chang of City of Hope answers ten common questions about pathology for neuroendocrine tumors. Dr. Chang defines important keywords to help you understand your pathology report which is instrumental in guiding treatment decisions. Listen now! For more information, visit LACNETS.org.

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. Listen now! For more information, visit LACNETS.org.

Who is eligible for PRRT? What are the side effects? Should somatostatin analogues be continued? Can PRRT be repeated when there is disease progression?  NET expert and Nuclear Medicine Physician Dr. Martin Auerbach of UCLA Health answers 10 common questions about the decision-making process of PRRT.  Dr. Auerbach addresses how to manage side effects, carcinoid crisis, labs, and post-PRRT imaging. Listen now! Be sure to listen to Episode 8: PRRT (Part One) with Administrative Nurse Lindy Gardner of UCLA Health. For more information, visit LACNETS.org.

Curious about PRRT? Wondering what a PRRT day looks like, what side effects you might experience, and what precautions you should take? NET expert and Administrative Nurse Lindy Gardner of UCLA Health answers 10 common questions about the before, during and after of PRRT. Lindy explains how to prepare for your treatment day, what to expect on the day of the treatment, and radiation precautions following PRRT including travel, vaccinations, and fertility and breastfeeding recommendations. Listen now! (PRRT Part Two with Nuclear Medicine Physician Dr. Martin Auerbach will be released next month. Stay tuned!)For more information, visit LACNETS.org.

Confused about scans? NET expert Dr Gary Ulaner answers the top 10 questions about imaging for NETs. Dual board-certified in radiology and nuclear medicine, Dr. Ulaner explains different scans used in NET imaging including functional imaging scans such as Gallium-68 DOTATATE, Copper-64 DOTATATE, and FDG PET scans and anatomical scans such as MRI and CT scans. He addresses common questions about radiation safety, contrasts, and SUV. Listen now!For more information, visit LACNETS.org.

How do NET experts decide what treatments are right for you? How do I learn about current clinical trials?  In our sixth episode, NET expert and medical oncologist Dr. Daneng (Dan) Li of City of Hope answers 10 common questions about decision-making for NETs including finding the primary tumor site, bone mets, tumor grades, and the role of adjuvant therapy. Listen now!For more information, visit LACNETS.org.

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. Listen now!For more information, visit LACNETS.org.

In this special episode, we share the history of LACNETS – the who, what, and when. We journey down memory lane with eight special guests from before the birth of LACNETS to where it is today. This episode is dedicated to Giovanna Joyce Imbesi, the LACNETS Founder, whose vision and dedication inspires us all. Listen now!For more information, visit LACNETS.org.

Newly diagnosed? Or need to brush up on your NET basics? Medical oncologist Dr. Andrew Hendifar addresses 10 common questions including labs, scans, genetic testing, and prognosis. Listen now! For more information, visit LACNETS.org.

NET expert and surgeon Dr. Gagandeep Singh joins us for this month's episode to answer the top 10 surgery questions for NETs. Listen now!For more information, visit LACNETS.org.

NET expert and gastroenterologist Dr. David Metz joins us for this month's episode to answer the top 10 GI questions for NETs. Dr. Metz addresses diarrhea, diet, carcinoid syndrome and effective symptom management.For more information, visit LACNETS.org.

For our very first episode we welcome NET Dietician, Meghan Laszlo, MS, RD, CSO of Cedars-Sinai Medical Center. Meghan answers the top 10 NET nutrition questions, covering topics including carcinoid syndrome, prescription enzymes, diarrhea, recommended diet for NET patients, and much more!For more information, visit LACNETS.org.