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.