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< Back to the upcoming events page Learn about Palliative Care: what it is, what it is not, and how it may help those affected by neuroendocrine cancer. Dr. Chandana Banerjee, palliative care and hospice specialist from the City of Hope Cancer Center in Los Angeles, demystifies these topics. ABOUT CHANDANA BANERJEE, M.D., M.P.A., HMDC Chandana Banerjee, M.D., M.P.A., HMDC, is the dean, director and designated institutional official for Graduate Medical Education at City of Hope. She is also an associate professor in the Department of Supportive Care Medicine , specializing in hospice and palliative care. She developed the City of Hope Hospice & Palliative Medicine Fellowship. She also established the Cancer Pain Rotation for Kaiser Permanente Los Angeles Hospice & Palliative Medicine Fellowship, which is now part of the core curriculum for the Kaiser Permanente Southern California Hospice & Palliative Medicine fellowship program. Dr Banerjee also developed and directed the End of Life Symposium, which was first held at City of Hope in September 2019 and was endowed by Arthur Riggs, Ph.D. She is the physician lead for Schwartz Rounds at City of Hope and serves as chair on the End of Life Option Act Subcommittee. She is also a member of the Continuing Medical Education and the Ethics and Quality of Life committees. She co-founded the City of Hope Expressions of Hope initiative in partnership with Diversity, Equity and Inclusion. She is currently chair-elect of the American Academy of Hospice & Palliative Medicine's (AAHPM) Medical Aid in Dying Special Interest Group. She served as chair-elect, chair and past chair on the AAHPM Humanities and Spirituality Special Interest Group from March 2019-2022. She serves on AAHPM's Editorial Board for the publication AAHPM Quarterly and has served on the assembly's Abstract Review Board. She is a reviewer for evidence-based research articles in hospice and palliative care submitted to McMaster University in Canada. Dr. Banerjee has written and published numerous articles and book chapters and spoken at conferences nationally and internationally. She is the editor for an upcoming book by Springer Publishing's CTAR series exploring views on end-of-life care, death, burial and bereavement within different cultures and religions. She also sits on the board of directors for Compassion & Choices, an organization dedicated to end-of-life issues. Dr. Banerjee is a contributing member on the National Comprehensive Cancer Network Fatigue Panel. Her leadership activities in education include excellence in teaching, faculty development and mentoring, and curriculum and program development. Dr. Banerjee earned her undergraduate degree with an honors scholar designation from University of Connecticut. She received her master's degree in public administration from New York University and her medical degree from Saba University School of Medicine. She completed her residency in pediatrics and her fellowship in adult hospice and palliative medicine from Kaiser Permanente Los Angeles. She is also a Hospice Medical Director Certified. Dr. Banerjee was recently selected as a Health Equity Scholar into the prestigious Cambridge Health Alliance - Center for Health Equity Education & Advocacy Program’s 2021-2022 Cohort. Dr. Banerjee loves to write poetry and her first collection, "Ashen Leaves," was published in July 2020. Her second book of poems, "Neruda in Bed," was published in November 2021. The opinions expressed by the guest presenters, as well as the questions asked by the audience, have not been created or suggested by LACNETS or the sponsors of this program. LACNETS does not endorse or promote any of the views, opinions or information provided in this presentation. Audience members should not rely solely on the opinions or information expressed by the guest presenter and should seek guidance and direction from their own medical advisors regarding any choices they make about their health or treatments. THANKS TO OUR SPONSORS

Caregiver Resources Virtual NET Caregiver Support Group 1. Virtual NET Caregiver Support Group 2. Free Health Coaching for Caregivers 3. Organizations Offering Resources for Caregivers 4. Organizing Help/Communication 5. Caregiver Self-Care Resource 6. End-of-Life Planning 7. Resources for Children 8. Learning Resources About Caregiving 9. Patient & Caregiver Stories VIRTUAL NET CAREGIVER SUPPORT GROUP Join LACNETS via Zoom every month. We would like to provide a safe space where NET caregivers can virtually come together for support and community. Register Here FREE HEALTH COACHING FOR CAREGIVERS LACNETS offers a series of FREE one-on-one telephonic coaching sessions (8-10 total) to NET caregivers within the Southern California region who are motivated to invest in their own self-care. Sign Up Here ORGANIZATIONS OFFERING RESOURCES FOR CAREGIVERS Cancer Support Community Centers for Disease Control and Prevention Springboard Beyond Cancer Cancer & Careers National Cancer Institute Click here to download the "When Someone You Love Has Advanced Cancer" booklet American Cancer Society Click here to download the Interactive Caregiver Resource Guide Triage Cancer Quick Guide to Caregiving Animated Video: Supporting Caregivers (available in English, Spanish, and closed captioning) Caregiving Resources Page Legal & Financial Navigation Program Additional Resources for Caregivers Share Your Story (NETRF) The Emotions of Living With Neuroendocrine Tumors (NETRF) Assistance and Support for Neuroendocrine Tumors (NETRF) Living Well with Serious Illness (NETRF) Livestrong Caregiver Support Oncolink Caregivers Information & Resources www.HelpForCancerCaregivers.org National Alliance for Caregiving Family Caregiver Alliance NCI: Caring for the Caregiver and Taking Time: Support for People With Cancer Cancer Hope Network American Cancer Society: Caregivers and Family AARP - Senior Care Needs ORGANIZING HELP/COMMUNICATION www.mealtrain.com www.lotsahelpinghands.com www.caringbridge.org https://www.abridge.com/patients CAREGIVER SELF-CARE RESOURCE https://www.caregiver.org/resource/taking-care-you-self-care-family-caregivers/ END-OF-LIFE PLANNING LACNETS Webinar - "Meaningful Advance Care Planning as a Gift to Your Loved Ones" EverPlans - To help prepare/plan for challenging times Practical Considerations when providing Palliative Care to patients with Neuroendocrine Tumors in the context of routine disease management or hospice care EndWell Project Five Wishes Hospice Foundation Guide (useful for more than hospice) Death Over Dinner Coda Alliance - Empowering easier, early, end-of-life conversations Click here for Grief and Loss Resources RESOURCES FOR CHILDREN CancerCare for Kids® provides free, professional support services for parents, children and adolescents affected by cancer, as well as information about helping children understand cancer and additional resources. Learn more here. Help with Hope is a support group to the children whose parent has cancer. If you are a parent with cancer and have a child between the ages of 8 and 17, they can attend an online meditation support group with other kids who understand what they are going through, parents are also invited! Learn more here. Kesem is committed to creating a world where every child who has a parent with a cancer diagnosis or has lost a parent to cancer is never alone. Kesem supports these children through and beyond their parent’s cancer with free, fun-filled creative programs and a lasting community. Learn more here. Lynn Lyons helps families navigate through fear and anxiety. Click here to learn more. LEARNING RESOURCES ABOUT CAREGIVING LACNETS Webinar: " How to Ask For, Accept and Get the Help You Need" with Kim Hamer LACNETS Webinar: “Meaningful Advance Care Planning as a Gift to your Loved One” with Redwing Keyssar, RN Listen Now: NETwise Podcast PATIENT & CAREGIVER STORIES Patient/Caregiver Stories Play Video Share Whole Channel This Video Facebook Twitter Pinterest Tumblr Copy Link Link Copied Now Playing Patient Panel with NET Patients Beth, Burt, Denny & Mary • 2023 NET Cancer Day @NCFCancer 32:58 Play Video Now Playing "Practical Tips For Patients Preparing For Chemotherapy" • Lisa Yen, NP, NBC-HWC 09:44 Play Video Now Playing 13) "A NET Journey" - Ilka & Shane Share Their Story • 2024 Neuroendocrine Tumor Patient Conference 04:50 Play Video Resources for Children Organizing Help/Communication Free Health Coaching for Caregivers Caregiver Self-Care Resource End-of-Life Planning Organizations Offering Resources for Caregivers Learning Resources About Caregiving Patient & Caregiver Stories BLOG POSTS "What Matters Most" - Lisa Yen "What it Means to be a Caregiver" - Beth Voyles

<< Go back to the Podcast page EPISODE 12: PHEOCHROMOCYTOMA & PARAGANGLIOMA (PPGL) Download a Transcript of this Episode >> ABOUT THIS EPISODE 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. MEET DR. JAYDIRA DEL RIVERO Dr. Del Rivero earned her medical degree from the University of Veracruz in Veracruz, Mexico and completed her internal medicine residency at Woodhull Medical and Mental Health Center/NYU-Langone Medical Center. Dr. Del Rivero completed a fellowship in Endocrinology, Diabetes and Metabolism at The Inter-Institute Endocrinology Training Program (IETP) at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), The National Institute of Child Health and Human Development (NICHD), and The National Institute of Dental and Craniofacial Research (NIDCR) where she was part of a research team developing clinical trials for pheochromocytoma and paraganglioma. She then joined as Assistant Professor at the Montefiore Einstein Center for Cancer Care (MECCC) where she specialized in endocrine oncology involving thyroid cancer, parathyroid and adrenal tumors, and clinical research for gastroenteropancreatic neuroendocrine tumors. She subsequently completed a second fellowship in medical oncology at the National Cancer Institute (NCI) with a research focus on endocrine malignancies. Dr. Del Rivero is board certified in Internal Medicine, Endocrinology, Diabetes and Metabolism and Medical Oncology. Dr. Del Rivero is a Physician Scientist in the Developmental Therapeutics Branch. She is the Principal Investigator of the Natural History Study for Neuroendocrine Neoplasm and Adrenocortical Cancer to provide the basis of further development of therapeutic interventions, prevention/screening guidelines, endpoints for future clinical trials, and patient reported outcome measures. Dr. Del Rivero’s current efforts is the development of novel treatment approaches and targeted therapies for endocrine malignancies such as advanced gastroenteropancreatic neuroendocrine tumors, adrenocortical cancer and pheochromocytoma/paraganglioma. TOP 10 PPGL QUESTIONS 1. Who should be listening to this podcast episode? Do all NET patients need to know about PPGL? 2. What is PPGL? Is this a cancer? How common is PPGL? How do we know which ones have a higher risk of metastasis? 3. Is this genetic? Who should get genetic testing and when should they get it? Should family members/children get genetic testing or cancer screening? 4. What are the symptoms of PPGL? 5. How is PPGL diagnosed? What labs should be done for PPGL? What scans should I get if have PPGL? Is there a certain priority or order to which scans should get done and when? 6. What is the treatment for PPGL? How do I get appropriate treatment? How do I know what appropriate treatment is? 7. What if my disease is metastatic? What are my treatment options? 8. What if my disease recurs after surgery? What are my treatment options? Could I have surgery again? 9. Will my symptoms be gone after surgery or treatments? 10. I’ve been told I can’t get a biopsy and that surgeries might be dangerous. What do I need to know and what do I need to do? PPGL RESOURCES PPGL resources page PPGL blogpost The Pheo Para Alliance Website "Update on Pheochromocytoma and Paraganglioma: Focusing on Advanced/Metastatic Disease" with Dr. Del Rivero Download Dr. Del Rivero’s presentation slides . This presentation is available in Spanish here . DISCLAIMER LACNETS Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of LACNETS. Please contact your medical team with questions or concerns about your individual care or treatment. THANKS TO OUR SPONSORS

Confirmation page of the Support Line, provided in collaboration with the Carcinoid Cancer Foundation Confirmation Thank you for providing this information so we can better support you or your loved one. You will receive a confirmation email after your submission containing various NET resources. We are here to help and look forward to connecting with you soon. The Neuroendocrine Cancer Foundation does not substitute for medical advice, diagnosis, treatment or other healthcare services. The Neuroendocrine Cancer Foundation may provide information and connections to physicians, products, services, clinical trials or treatments related to neuroendocrine cancer, but the Neuroendocrine Cancer Foundation neither recommends nor endorses any particular healthcare institution or provider. Please consult your medical team about your individual care or treatment.

NET Testing < Back to Topics Play Video Play Video 18:28 06. NET Testing: The What, When, How and Why (Dr. Namrata Vijayvergia) - 2022 LACNETS Conference Dr. Neena Vijayvergia addresses the what, when, how and why of NET testing. Presenter: Namrata Vijayvergia, MD Medical Oncologist, Fox Chase Cancer Center 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 35:16 "Understanding NET Diagnosis" with Dr. Chandrasekharan • 2024 #LACNETS Patient Conference 2. "Understanding NET Diagnosis" with #Dr.Chandrasekharan Our 2024 LACNETS Neuroendocrine Tumor Patient Conference is designed for neuroendocrine cancer (NET) patients and caregivers to deepen your understanding of NETs. Whether you are newly diagnosed or have been living with NET for many years, we encourage you to attend: - Learn from top NET experts from across North America on a range of topics relevant to the NET patient journey. - Topics include work-ups, scans, surgery, carcinoid crisis, liver-directed therapy, PRRT, systemic treatments, treatment sequencing, NET guidelines, and clinical trials. - Gain insight into NET decision-making through the NET tumor board panel discussion. - Hear stories from NET patients and caregivers. - Join virtually, where you can pause, rewind, or replay. - There is no cost to attend. This event is made possible by the generosity of donors and sponsors. #LACNETS #neuroendocrinecancer #clinicaltrials #lungcancer #NETcancer #Letstalkaboutnets For more information, visit LACNETS.org. < Back to Topics Next Topic >

< Back to the upcoming events page REGISTER ABOUT The Neuroendocrine Cancer Foundation is hosting an in-person NET Educational Event for patients and caregivers in Tucson, Arizona on Saturday, March 29th, from 1:30-6:00 PM. Hear presentations from 8 NET experts. Listen to patient stories. Learn about the latest in surgery, liver-directed therapy, systemic therapy, PRRT, and clinical trials. Ask questions during the extended live question and answer session. Find out how you can spread awareness about neuroendocrine cancer. Network with other patients and caregivers in the post-event reception. There is no cost to attend. This event is made possible by the generosity of donors and sponsors. Special thanks to our host, Dr. Junaid Arshad, University of Arizona Cancer Center (UACC). This event will not be broadcast. Note: The Neuroendocrine Cancer Foundation was formerly known as LACNETS. Read the full announcement here >>> LOCATION Arizona Cancer Center Kiewit Auditorium 1515 N. Campbell Ave Tucson, AZ 85724 PARKING Below is a parking map to find parking and the Arizona Cancer Center. Your parking will be free if you park in Banner University Medical Center Garage B. Bring the parking ticket to the event so we can validate it for you. When you exit the parking garage, you will need to put the ticket into machine twice: Once for it to scan the face of ticket A second time to scan the back of the ticket and the validation bar code Download the parking instructions sheet here >>> THANKS TO OUR SUPPORTERS AGENDA Time Topic Speaker 1:30 - 2 PM Check-in 2 - 2:10 PM Welcome & Introductions Neuroendocrine Cancer Foundation Team 2:10 - 2:15 PM Patient Story Kimberly, NET Patient 2:15 - 2:30 PM NETs 101: NET Terms & Concepts You Need to Know Bassam Sonbol, MD, Medical Oncologist, Mayo Clinic Phoenix 2:30 - 2:45 PM Surgery for NETs: To Cut or Not to Cut? Gagandeep Singh, MD, Surgical Oncologist, City of Hope Phoenix 2:45 - 3 PM Liver-Directed Therapy: Killing Liver Tumors Without a Big Scar Gregory Woodhead, MD, PhD, Interventional Radiologist, University of Arizona Cancer Center 3 - 3:15 PM Systemic Therapy for NETs: Treatment Options for Metastatic Tumors Heloisa Soares, MD, PhD, Medical Oncologist, Huntsman Cancer Institute 3:15 - 3:30 PM PRRT: Current & New Trends Holly Thompson, MD, MPH, Nuclear Medicine, University of Arizona Cancer Center 3:30 - 3:45 PM Break 3:45 - 3:50 PM Nursing Perspective on the Management of NETs Linda Moe, RN, University of Arizona Cancer Center 3:50 - 4:05 PM Clinical Trials: The Latest & Greatest Pamela Kunz, MD, Medical Oncologist, Yale Cancer Center 4:05 - 5 PM Q&A with Expert Panel All Faculty - Moderated by Dr. Junaid Arshad, Medical Oncologist, University of Arizona Cancer Center & Lisa Yen, LACNETS 5 - 6 PM Networking Reception This agenda is subject to change. Please check this page for the most updated agenda. REGISTER ABOUT OUR SPEAKERS Dr. Junaid Arshad Medical Oncologist, University of Arizona Cancer Center (UACC) Host/Moderator/Speaker Dr. Junaid Arshad is an Assistant Professor of Medicine and our new faculty member of GI Medical Oncology. He received his medical degree from King Edward Medical University, Lahore, Pakistan. He completed his Internal Medicine Residency at St. Mary's Hospital, Waterbury, CT. He has joined the Cancer Center after his Hematology and Medical Oncology Fellowship from University of Miami, FL. Dr. Arshad is a Clinical and Translational Scientist with a focus on developing novel therapeutics for several areas of Upper GI Oncology. Dr. Arshad's Clinical and Research focus targets mainly the Upper GI Oncology including Gastrointestinal Stromal Tumors, Gastric Cancers, Esophageal Cancers and Neuroendocrine Tumors. He is a part of several clinical trials and has contributed to several peer reviewed publications. His prior research focuses on the use of biomarkers such as circulating tumor DNA (ctDNA) in the diagnosis, treatment and surveillance of Gastrointestinal Stromal Tumors. He has expanded his areas of research interest to include other disease modalities such as Neuroendocrine Cancers. Dr. Pamela Kunz Medical Oncologist, Yale Cancer Center 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 past President 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. Dr. Kunz 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. Dr. Kunz was awarded ‘Woman Oncologist of the Year’ by Women Leaders in Oncology for her work in promoting gender equity and received the 2024 'Distinguished Mentor Award' by the North American Neuroendocrine Tumor Society. X @PamelaKunzMD Linda Moe, RN Registered Nurse, University of Arizona Cancer Center (UACC) I have been an oncology nurse for 34 years, working in both inpatient and outpatient settings. My experiences range from bedside nursing, ambulatory care, ICU care, charge nurse, nurse manager, nurse navigator and RN coordinator. Currently, I am working as Dr. Arshad’s RN coordinator. I have been working specifically with GI cancers for the past seven years. I spearheaded and achieved NAPRC accreditation status at the University of Arizona Cancer Center. I have specialized in Bone Marrow Transplant, pain management, palliative care, wound care and end-of-life care. I hold a bachelor’s degree in nursing and a bachelor’s degree in naturopathy with an emphasis on wellness and cancer prevention. I am a Reiki Master with over 20 years of Reiki experience. I was selected as a “Fabulous 50” nurse in 2020 and successfully passed a law establishing “National Fatigue Awareness Day” in the state of Arkansas. Dr. Gagandeep Singh Surgical Oncologist, City of Hope Phoenix Internationally renowned liver and pancreas surgeon Gagandeep “Gaugs” Singh, M.D., F.A.C.S., is Chief of Surgical Oncology and Director of Surgical Services at City of Hope® Cancer Center Phoenix. A seasoned health care leader with more than 20 years’ experience building outstanding surgical teams, Dr. Singh is excited to return to Phoenix – where he completed part of his medical training – and to City of Hope, where he spent a decade as the chief of City of Hope Duarte’s surgical oncology program. In the clinic, Dr. Singh takes a thoughtful yet forceful approach to treating cancers of the liver, pancreas and gastrointestinal systems. As a health care leader, he is passionate about empowering teams to achieve their fullest potential. He has been recognized with numerous awards and leadership positions. After beginning his faculty academic career at the Keck School of Medicine at the University of Southern California in Los Angeles, Dr. Singh was appointed director of the Liver and Pancreas Center at the John Wayne Cancer Institute in Santa Monica, California, where he also served as chair of the Cancer Committee. At City of Hope Duarte, Dr. Singh spearheaded the liver and pancreatic cancer programs and led the Division of Surgical Oncology to national recognition. He has been included on multiple lists of “America’s Top Surgeons,” “Best Doctors of America,” “Super Doctors” and “Top Doctors of America.” Dr. Singh earned his medical degree from the Mahatma Gandhi Institute of Medical Sciences in India, before training at multiple internationally renowned cancer centers, including Tata Memorial Hospital and Cancer Center in Bombay, René Descartes University in Paris and the Royal Liverpool University Hospital in the United Kingdom, as well as the Marion Bessin Liver Center at the Albert Einstein College of Medicine in New York, Maricopa Medical Center in Phoenix and the University of Iowa. A board-certified surgeon, diplomate of the American Board of Surgery and fellow of the American College of Surgeons, Dr. Singh is an internationally recognized expert in his field and a member of the National Comprehensive Cancer Network for Hepatobiliary Cancers, the group that sets the guidelines for the standard of care for hepatobiliary cancers. As a researcher, Dr. Singh has written on topics such as complex liver resections for liver metastases, management algorithms for neuroendocrine tumors, vascular reconstructions with difficult pancreatic surgery for pancreatic cancer and advanced robotic surgery. His work on robotic surgery has been presented at the Society of Surgical Oncology, America’s Hepato-Pancreato-Biliary Association, the Society of Laparoscopic & Robotic Surgeons and other national meetings. An innovator at heart, he is in constant pursuit of enhancing the surgical experience and developing technical innovations in liver and pancreatic surgery. He has collaborated with engineers from the California Institute of Technology and Harvey Mudd College and has several invention disclosures and patents to his name. Dr. Singh’s translational research includes projects with molecular biologists, X-ray crystallographers, structural chemists and super-resolution scientists across the City of Hope national system . Dr. Heloisa Soares Medical Oncologist, Huntsman Cancer Institute Dr. Heloisa Soares is a medical oncologist who focuses on neuroendocrine cancers. She is an associate professor at the Huntsman Cancer Institute (HCI) at the University of Utah, where she is also the Medical Director for the Clinical Trials Office. Nationally, she serves as the NCI NET task force co-chair and the chair of the North American Neuroendocrine Tumor Society (NANETS) inaugural NET Patient Action Team of the NETPact Committee. She also recently served as a member of the directors for NANETS. Dr. Soares is a passionate advocate for patients. You can follow her on Twitter at @helops79 Dr. Bassam Sonbol Medical Oncologist, Mayo Clinic Phoenix Mohamad Bassam Sonbol, M.D., is an Oncologist, with special interest in neuroendocrine tumors and gastrointestinal malignancies. In addition to his clinical activities, Dr. Sonbol is active in research that focuses on investigating novel treatments including targeted therapies, immunotherapy, and other agents that could potentially help patients with neuroendocrine and gastrointestinal cancers. Dr. Sonbol focuses on the holistic treatment for cancer patients taking into consideration their medical and social aspects that have been affected by their cancer diagnosis. Dr. Holly Thompson Nuclear Medicine & Theranostics, University of Arizona Cancer Center (UACC) My passion for medicine is defined by a tenacious desire to diagnose and treat diseases that cause human suffering. Profoundly inspired by the study of cancer, I pursued research into its biology first working at the Fred Hutchinson Cancer Center and then related innovative imaging technologies working at Vitra Bioscience, following my undergraduate degree. Driven to help address cancer and other complex diseases at a more direct and personal level, I earned my Doctor of Medicine degree from the University of Miami, followed by a Masters in Public Health. After an internship in surgery at Harvard, I completed postgraduate Radiology training at UC Davis and further subspecialized in Nuclear Medicine training at Stanford University, where I learned about neuroendocrine tumors having witnessed NETTER-1 trial participants. I had the privilege of joining a large integrated healthcare provider in Northern California where I worked to enable NET patients’ early access to 177Lu-Dotatate(Lutathera, prior to FDA approval. Subsequently I became the Nuclear Medicine physician lead for regional multidisciplinary NET tumor boards facilitating patient cases to be rigorously reviewed with an integrated, patient-centered focus. Currently, as an Associate Professor at the University of Arizona, my focus is on advancing NET patient care and research, while teaching and inspiring the next generation of Nuclear Radiologist/Oncologist. It is an honor to be invited to participate in the LACNETS outreach program. Dr. Gregory Woodhead Interventional Radiology, University of Arizona Cancer Center (UACC) Gregory Woodhead, MD, PhD, joined the interventional radiology faculty at University of Arizona, with the majority of his practice focusing on interventional oncology at the University of Arizona Cancer Center. Dr. Woodhead’s career objective is to translate devices and therapies from the development stage into clinical practice. His interest in cancer cell biology draws from his PhD research on the role of the catenin-signaling pathway in cell fate decisions for progenitor and cancer cells. As a resident and fellow at the University of Arizona, he embarked on an analysis of catheter-directed mechanical thrombectomy for the treatment of acute pulmonary embolism (PE), which is a common cause of morbidity and mortality in cancer patients. He is the PI on multiple trials and registries that seek to identify long-term differences in patients who received mechanical thrombectomy for PE in comparison to those who received only anticoagulation alone. Dr. Woodhead has published over 40 papers and frequently presents at national and international meetings. He is an integral member of multiple institutional programs and a committee member for many professional societies. He is passionate about educating and mentoring medical students, residents, and fellows. He previously served as the chair of the MD/PhD admission committee.

<< 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

<< Go back to the Podcast page EPISODE 9: PRRT (PART II) Download a Transcript of this Episode >> Listen to Episode 8: PRRT (Part One) with Administrative Nurse Lindy Gardner of UCLA Health >> Listen to Episode 10: PRRT (Part Three) with Josh Mailman >> ABOUT THIS EPISODE 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. MEET DR. MARTIN AUERBACH Dr. Auerbach is the Director of Nuclear Medicine at the Westwood and Santa Monica UCLA Hospitals, and Associate Professor in Nuclear Medicine, Division of Pharmacology, at the David Geffen School of Medicine at UCLA. Apart from serving as attending physician in Nuclear Medicine at the UCLA Santa Monica and Westwood Hospital, active research includes clinical studies investigating the role of molecular imaging with PET/CT to gain insights into malignant disease processes, and monitoring of cancer treatment. TOP 10 PRRT QUESTIONS 1. Who is eligible for PRRT? When considering PRRT, is there a minimum or maximum tumor size? What is the effect if a patient receives half the planned dose or a delay in receiving a dose due to low counts? 2. How do you decide on doses of radioactive agents in PRRT? Do they consider the individual’s weight or does everyone get the same dose? 3. What are the side effects of PRRT and how are they managed? 4. Do you continue SSA with PRRT and if so when should one receive it? 5. Can people have carcinoid crisis with PRRT? If so, how is this treated? 6. When or how often are labs done? Which labs and what are you looking for? 7. When do you do imaging? Which imaging to you do? 8. When would you expect to see a response with PRRT and what is the statistics about the shrinkage or response that is expected? 9. For those who have received 4 doses of Luthatera, what happens if/when there is progression, can PRRT be repeated? Can people have more than 4 doses of Lutathera? 10. What is the difference between alpha and beta PRRT? How would you decide between the alpha or beta PRRT? 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

Save the Date - June 15, 2024 Watch the 2024 LACNETS Neuroendocrine Tumor Patient Conference Play Video Share Whole Channel This Video Facebook Twitter Pinterest Tumblr Copy Link Link Copied Now Playing Welcome and Introductions • 2024 #LACNETS Neuroendocrine Tumor Patient Conference 09:56 Play Video Now Playing "Understanding NET Diagnosis" with Dr. Chandrasekharan • 2024 #LACNETS Patient Conference 35:16 Play Video Now Playing "Understanding NET Scans" with Dr. Nadine Mallak • 2024 LACNETS NET Patient Conference 23:47 Play Video Visit Sponsor Booths Speaker Bios Sponsors THANKS TO OUR SPONSORS Novartis Booth Crinetics Booth IPSEN Booth Curium Booth ABOUT THE CONFERENCE Our 2024 LACNETS Neuroendocrine Tumor Patient Conference is designed for neuroendocrine cancer (NET) patients and caregivers to deepen your understanding of NETs. Whether you are newly diagnosed or have been living with NET for many years, we encourage you to attend: Learn from top NET experts from across North America on a range of topics relevant to the NET patient journey. Topics include work-ups, scans, surgery, carcinoid crisis, liver-directed therapy, PRRT, systemic treatments, treatment sequencing, NET guidelines, and clinical trials. Gain insight into NET decision-making through the NET tumor board panel discussion. Hear stories from NET patients and caregivers. Join virtually, where you can pause, rewind, or replay. There is no cost to attend. This event is made possible by the generosity of donors and 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.

Resources for Children CancerCare for Kids® provides free, professional support services for parents, children, and adolescents affected by cancer, as well as information about helping children understand cancer and additional resources. Help with Hope is a support group to the children whose parent has cancer. If you are a parent with cancer and have a child between the ages of 8 and 17, they can attend an online meditation support group with other kids who understand what they are going through, parents are also invited! Kesem is committed to creating a world where every child who has a parent with a cancer diagnosis or has lost a parent to cancer is never alone. Kesem supports these children through and beyond their parent’s cancer with free, fun-filled creative programs and a lasting community. Lynn Lyons helps families navigate through fear and anxiety. GRIEF RESOURCES FOR CHILDREN Child Life Services at City of Hope – addresses the needs of infants, children, teens, and families during hospitalization and outpatient treatment. Our House Grief Support – provides children with grief support services, education, resources, and hope. Comfort Zone – offers a two-day camp for grieving kids. Inner Harbor – offers mental health support for grieving students. They also train high school and college teachers and counselors and even Greek houses to support young adults. High Mark Caring Place – manages the Children's Grief Awareness Day page, helping to remind us that grieving kids need our love. Click here for Caregiver Resources SPREADING AWARENESS Designer: Lauren Buntin Download

<< Go back to the Podcast page EPISODE 22: WHAT TO KNOW ABOUT PANCREATIC NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE 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. MEET DR. JENNIFER CHAN Jennifer Chan, MD, MPH is an Associate Professor of Medicine at Harvard Medical School and Institute Physician in the Division of Medical Oncology at Dana-Farber Cancer Institute in Boston, MA. She focuses her clinical practice on the care of patients with neuroendocrine tumors and gastrointestinal cancers. Dr. Chan is the Director of the Program in Neuroendocrine and Carcinoid Tumors and Clinical Director for the Gastrointestinal Cancer Center at the Dana-Farber/Brigham and Women's Cancer Center. She has been principal investigator of multiple clinical trials investigating novel therapies for neuroendocrine tumors and has been involved in studies examining factors associated with clinical outcomes in patients with neuroendocrine tumors. Dr. Chan is a past chair of the Guidelines Committee of the North American Neuroendocrine Tumor Society (NANETS) and serves on the National Comprehensive Cancer Network (NCCN) Neuroendocrine Tumors Guidelines Panel. She is a member of the Neuroendocrine Tumor Taskforce of the National Cancer Institute and the Board of Directors of NANETS. TOP 10 QUESTIONS 1. What are pancreatic NETs? Where are they located? 2. How are pancreatic NETs found? What are the symptoms of a pancreatic NET? 3. How is pancreatic NETs different from “pancreatic cancer?” How is it different from a pancreatic cyst? 4. What types of labs, scans, or testing is done to determine if someone has a pancreatic NET? 5. What are some ways that pancreatic NETs differ from other types of NETs? What makes it unique? 6. How do you decide if the pancreatic NET can be surgically removed? What type of surgeon would make that determination? 7. How are pancreatic NETs treated medically (or nonsurgically)? How are treatments sequenced? 8. How are the treatments different from other NETs? 9. How are pancreatic NETs monitored? What types of bloodwork or tests should be done and how often should they be done? What is the best type of scan for pancreatic NETs? 10. What are clinical trials we should be aware of or exciting new treatments in the pipeline for pancreatic NETs? RESOURCES "CABINET Trial - Cabozantinib in Advanced Pancreatic Neuroendocrine and Carcinoid Tumors Video Introduction" - Jennifer Chan "Update on NET Clinical Trials" with Dr. Heloisa Soares (Recorded March 10, 2023) "NET Medical Therapies & Clinical Trials" with Dr. Reidy-Lagunes - LACNETS 2022 LACNETS Annual Conference (Recorded June 18, 2022 ) Systemic Therapy: GI, Lung, PNETS & Unknown Primary" - LACNETS 2020 Virtual NET Conference ( Recorded June 20, 2020 ) NET Patient Mary's Story NET Patient Tom's Story NET Caregiver Gilda's Story NET Patient Federico's Story LISTEN LACNETS Podcast Episode 5: "Treatment for NETs" with Dr. Randy Hecht LACNETS Podcast Episode 7: "Imaging of NETs" with Dr. Gary Ulaner LACNETS Podcast Episode 11: "Pathology for NETs" with Dr. Sue Chang LACNETS Podcast Episode 19: "Beyond the Basics: The Pathology of NET" with Dr. Andrew M. Bellizzi NETWise Podcast Episode 10: Pancreatic NETs + Take the Quiz READ 2020 The North American Neuroendocrine Tumor Society Consensus Guidelines for Surveillance and Medical Management of Pancreatic Neuroendocrine Tumors 2020 The North American Neuroendocrine Tumor Society Consensus Paper on the Surgical Management of Pancreatic Neuroendocrine Tumors CABINET Trial - Cabozantinib in Advanced Pancreatic Neuroendocrine and Carcinoid Tumors 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

Patient & Caregiver Stories Watch inspiring stories of strength and resilience from patients and caregivers. NET Patient Karla shares her inspiring story in "Falling Flat on my Faith." NET Patient Ilka and her son Shane share their inspiring journey. NET Patient, Beth, shares her inspiring story of strength and resilience titled “A Shared Experience.” NET Patient Kelli shares how she has learned not just to survive, but also to thrive. NET patient, Eric, shares about his journey and decision-making. NET Patient, Kelli Edwards, shares her experience with PRRT. NET patient, Shaunie, & her daughter/advocate, Heather, share about their experience with PRRT. NET patient, Mary, shares about "scan-xiety," the common anxiety patients sometimes have when undergoing scans. NET Patient, Cindy, shares about her journey living with high grade neuroendocrine cancer. NET Patient, Vivian shares her experience with the LACNETS health coaching program. NET Patient, Laurie, shares about the first year of her NET journey. NET Patient, Tom, shares his experience with PRRT. NET Patient, Brent, shares about symptom management. NET Patient, Cindy, shares how she is thriving as a NET patient. NET Patient, Mary, shares about her experience in a clinical trial (everolimus or Afinitor). NET Caregiver, Jack, shares about his experience as a caregiver to his wife who is living with NET. NET Patient Cindy who is living and thriving with high grade neuroendocrine cancer shares her inspiring story. NET Caregiver Aimee shares what led her to a life of patient advocacy and assisting patients living with pheochromocytomas and paragangliomas. NET Patient Tom shares his experience undergoing multiple rounds of PRRT treatments. NET Caregiver Gilda shares how she has been supporting her husband living with NET NET patient Michel shares how the lack of information and awareness of his diagnosis inspired him to start a patient support group in Mexico. NET Patient Julie shares her path to treatment in hopes of providing guidance to newly-diagnosed patients. NET Patient Denny shares his story of being diagnosed with high grade (grade 3) NET and experience with PRRT. NET Patient Federico shares his story. NET expert Dr. Mark Lewis shares how he was diagnosed with NET and how he has been navigating the patient journey. NET patient Shaunie shares her experience living with Zollinger-Ellison syndrome and a functioning gastrinoma of the pancreas. Visit Our YouTube Channel