NETWise

In this episode of NETWise, we continue our focus on neuroendocrine carcinoma, a rare and aggressive form of neuroendocrine cancer. While our previous episode explored diagnosis and treatment, this discussion centers on the unique challenges faced by caregivers. Caring for someone with neuroendocrine carcinoma can be incredibly intense due to the cancer’s rapid progression and limited treatment options. This episode highlights the emotional and physical toll of caregiving—and emphasizes the vital importance of self-care for those supporting a loved one through this difficult journey.

Resources:

• https://www.thehealingnet.org/high-grade-neuroendocrine
• https://www.helpforcancercaregivers.org
• High Grade Neuroendocrine Carcinoma Group

Professional acknowledgements:

Jodi Kolada, MA, is the Director of Caregiver Outreach and Non-Clinical Team Member Education at Well-Spring Solutions in Greensboro, NC. Jodi has extensive work in caregiver education and caregiver self-care.

Dr. Robin Lockridge, Ph.D. is a neuropsychologist at the National Cancer Institute at the National Institutes of Health. She frequently works with caregivers.

A sincere thank you to Holly Jensen Corte and Shannon Page for sharing their neuroendocrine carcinoma experiences, and Jean Carney and Susan Meckler Plummer for sharing their neuroendocrine carcinoma caregiving experiences.

Click here to download a transcript of this episode.

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In this episode of NETWise, we’re diving into one of the more aggressive forms of neuroendocrine cancer: neuroendocrine carcinoma (NEC). While many neuroendocrine tumors are slow-growing and manageable over time, NEC is different—fast-moving and requiring swift, specialized care.

• We’ll guide you through the essential information about NEC, including:
  What neuroendocrine carcinoma is and how it differs from other NETs
• The diagnostic process: what to expect and how doctors identify this disease
• Current treatment options and what patients and caregivers should know

If you or a loved one has recently received an NEC diagnosis, this episode is designed to help you start understanding the road ahead.

Resources

https://www.thehealingnet.org/high-grade-neuroendocrine

High Grade Neuroendocrine Carcinoma Group

 

Acknowledgements

Dr. Carl Gay, MD, PhD, is a thoracic medical oncologist and research scientist at the University of Texas MD Anderson Cancer Center.

Dr. Aman Chauhan, MD, is a medical oncologist at the Sylvester Comprehensive Cancer Center at the University of Miami, where he leads the neuroendocrine cancer program.

Dr. Renuka Iyer is a medical oncologist at Roswell Park Comprehensive Cancer Center in Buffalo, New York.

Susan Meckler Plummer, RN, runs an online support group for patients with neuroendocrine carcinoma.

Patient Acknowledgements

A special thank you to Deb Roberston and Lori Dolnick for sharing their stories.

Click here to download a transcript of this episode.

The post NETWise Episode 46: Understanding Neuroendocrine Carcinoma appeared first on NETRF.

This episode is part of a collaboration with the FlaNET Carcinoid Community, focusing on financial toxicity. We explore some of the major costs that can arise throughout the neuroendocrine cancer journey and share guidance on how to find helpful resources.

NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed.

Joanna Doran, JD, is the CEO of Triage Cancer, a national nonprofit that provides free education on legal issues that may impact people diagnosed with cancer.

Mysti Motz, BNS, RN, is a nurse who previously worked at the University of Miami’s Sylvester Comprehensive Cancer Center, where she provided care and support to patients in the Neuroendocrine Cancer Program.

Samantha Powell, LCSW, is a social worker licensed in Utah and Iowa who has worked with neuroendocrine cancer patients.

Sasha Watson, Pharm.D.,is a clinical pharmacist at the University of Miami Sylvester Comprehensive Cancer Center.

Thank you to Matt Skinner for sharing his neuroendocrine cancer journey.

Additional Resources:

Thank you to Triage Cancer for sharing the following resources:

Practical Guide to Cancer Rights: https://triagecancer.org/guide

Cancer Finances: https://triagecancer.org/cancer-finances

Free medical flights:
https://www.angelflight.com/
https://angelflightwest.org/angel-flight-services/
https://www.mercymedical.org/free-medical-flights
https://skyhope.org/

Cancer and Careers: https://www.cancerandcareers.org/en

For veterans diagnosed with cancer: https://www.cancercare.org/publications/340-building_connections_as_a_veteran_resources_and_support

American Cancer Society:

https://www.cancer.org/cancer/financial-insurance-matters/managing-health-insurance/programs-and-resources-to-help-with-cancer-related-expenses.html

Hope Lodge Housing Information: https://www.cancer.org/support-programs-and-services/patient-lodging/hope-lodge.html

Nancy’s list: https://nancyslist.org/financial-assistance/

Cancer Care: https://www.cancercare.org/financial_assistance

Click here to download a transcript of this episode.

The post NETWise Episode 45: Managing the Financial Burden of Neuroendocrine Cancer appeared first on NETRF.

When it comes to PRRT (Peptide Receptor Radionuclide Therapy), patients often have big questions and concerns. In this episode, we dive into the most common questions surrounding PRRT and the broader field of radiopharmaceutical treatments for neuroendocrine cancer. This is an exciting field as there is much more research being done into radiopharmaceuticals for neuroendocrine cancer. Tune in as we break down key insights from doctors and researchers to help you better understand this important treatment option.

NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed.

Beth Chasen, MD, is a Professor, Department of Nuclear Medicine, Division of Diagnostic Imaging, The University of Texas MD Anderson Cancer Center, Houston, TX

Victor Fernandes, PHD is a researcher at the University of Wisconsin Madison and a medical physicist by training, I work with radiopharmaceutical therapies and with neuroendocrine tumor patients and patient data. Victor was awarded a research grant by NANETS funded through NETFRF that focuses on Modeling to predict the benefit of PRRT in NET patients.

Heather Jacene, MD, is a Clinical Director, Nuclear Medicine/PET-CT
Associate Program Director at Brigham and Women’s Joint Program in Nuclear Medicine. In addition, she is an Associate Professor of Radiology Harvard Medical School

Click here to download a transcript of this episode.

The post NETWise Episode 44: Radiopharmaceutical Treatment – FAQs & Insights appeared first on NETRF.

Artificial intelligence (AI) has become a hot topic, making its way into everyday conversations and industries worldwide. While AI technologies have been around for years, recent advancements are accelerating their impact—especially in healthcare. From improving cancer research to enhancing diagnosis and treatment, AI is reshaping the future of medicine. In this episode of NETWise, we dive into how AI is driving progress in neuroendocrine cancer research and explore its potential applications in the clinic. Could AI revolutionize the way NETs are diagnosed and managed? Join us as we uncover the possibilities.

To access the NET Clinical Trial Finder mentioned in this episode: https://netrf.org/for-patients/trial-finder/

NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed.

Danielle Ralic is the CEO/CTO and founder of Ancora.ai, a health tech company dedicated to accelerating innovation in medicine by democratizing clinical trial access. Her service uses AI to help neuroendocrine cancer patients find clinical trials.

Matthieu Foll, PHD is a researcher at  the International Agency for Research and Cancer, part of the World Health Organization.

Emilie Mathian, PHD is a postdoctoral researcher at the International Agency for Research on Cancer (IARC-WHO)

Dr.  Aman Chauhan, MD, is a medical oncologist at the University of Miami Sylvester Comprehensive Cancer Center, where he leads the neuroendocrine oncology program and co-directs theranostic drug development.

Special Thank you

A special thank you to Hector Perez for sharing his neuroendocrine cancer story.

Click here to download a transcript of this episode.

The post NETWise Episode 43: How Could AI Change Neuroendocrine Cancer? appeared first on NETRF.

Happiness is something that can be difficult to find in life, no matter what. Having an uncommon cancer can make it infinitely harder. In this episode of NETWise, we’re going to talk about what happiness means, and how cancer can affect the way we think about it. We’ll also talk about the things we all can do to be more resilient.

NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed.

James A. Bibb, PhD is a researcher at the University of Arizona College of Health Sciences.   Dr. Bibb’s research focuses on basic and translational research exploring the molecular mechanisms of intracellular signal transduction in health and disease. His work on the regulation of dopamine neurotransmission was cited in the Nobel Prize in Physiology for Medicine in 2000. 

Robin Lockridge, Ph.D. is a neuropsychologist at the National Cancer Institute at the National Institutes of Health with expertise in the clinical assessment of pediatric cognitive, neurodevelopmental, and neuropsychological disorders as well as children and youth program development. Dr. Lockridge works with the Adult Rare Tumor Network.  

Kevin Payne, Ph.D. is a social psychologist and is the founder of an organization,  Your Life Lived Well, LLC.,  dedicated to helping people thrive with the challenges of chronic illness.

Lori Wiener, Ph.D., DCSW, LCSW-C is a clinical social worker. She directs the psychosocial support and research program at the National Cancer Institute.

Thank you to Burt Rosen and Nancy Lewis for sharing their neuroendocrine cancer stories and personal perspectives.

Click here to download a transcript of this episode.

The post NETWise Episode 42: Finding Happiness While Living with Neuroendocrine Cancer appeared first on NETRF.

Research is at the very core of what we do at NETRF. We believe it is the key to discovering cures and more effective treatments for neuroendocrine cancers. In this episode of NETWise, we will bring you into one of our most exciting yearly events: NETRF’s 2024 Neuroendocrine Cancer Research Symposium. You will hear ways the needle has been pushed in each area of research in the past year. We’ll start with advances in basic research and move through the spectrum to finish with updates that have clinical applications.

Click here to download a transcript of this episode.

The post NETWise Episode 41: 2024 Year in Review appeared first on NETRF.

In this episode, we’re diving deep into the symptoms caused by functional neuroendocrine tumors (NENs) and, more importantly, how to effectively manage them. Whether you’re navigating symptomatic NETs yourself or supporting someone who is, this conversation will arm you with fresh insights and practical tools to take control. This is a revamped and enriched update of an episode originally released in 2020. A special thank you to Dr. Eric Nakakura for lending his expertise to this valuable update.

Thank you to Maureen Edwards and Cy Ball for sharing their stories. Cy Ball, whose story we heard, passed away. We appreciate that he shared his story with us.

NET specialists included in this episodeUse our episode infographics to get a visual picture of some of the things we have discussed.

Aman Chauhan, MD
Medical Oncology, University of Kentucky, Lexington, KY

Caroline Creamer, PA-C
Gastroenterology, University of Pennsylvania, Philadelphia, PA

Joseph Dillon, MD
Endocrinology, University of Iowa Health Care, Iowa City, IA

Eric Liu, MD
Surgery, Rocky Mountain Cancer Centers, Denver, CO

David Metz, MD
Gastroenterology, University of Pennsylvania, Philadelphia, PA

Eric Nakakura, MD, PhD
Surgery, University of California, San Francisco, CA

Michelle Kang-Kim, MD
Gastroenterology, Mount Sinai Hospital, NY, NY

Heloisa Soares, MD, PhD
Medical Oncology, Huntsman Cancer Institute, Salt Lake City, UT

Edward Wolin, MD
Medical Oncology, Mount Sinai Hospital, NY, NY

Click here to download a transcript of this episode.

The post NETWise Episode 40: Managing Symptoms of NENs—Updated Episode appeared first on NETRF.

Lately, there’s been a lot of talk about immunotherapy, which has transformed treatment for patients with some kinds of cancer. So far, patients with NETs and NECs have largely been excluded from these developments. But there’s hope that the benefits of immunotherapy could one day extend to NENs. In this episode of NETWise, we’re going to explore current research into immunotherapy, and what it might mean for patients.

Daniel M. Halperin, MD, Associate Professor and Vice Chair for Clinical Affairs in the Department of Hematology and Medical Oncology at Emory University

Eleonora Pelle, MD, Post-Doctoral Researcher, Moffitt Cancer Center

Dr. Mauro Cives, MD, Senior Assistant Professor of Medical Oncology in the Department of Interdisciplinary Medicine of the University of Bari

A special thank you to NETRF board member and NET caregiver, Laurie Littlepage, PhD, for sharing her story.

Click here to download a transcript of this episode.

The post NETWise Episode 39: What Could Immunotherapy Mean for NENs? appeared first on NETRF.

Whether or not a patient has access to care is one of the most important factors in how their cancer journey plays out. It is crucial for timely diagnosis and effective treatment of neuroendocrine neoplasms. And when you live in a rural place, that access can be complicated. We often talk about how important it is to seek out specialized care for NENs – but we don’t often talk about how challenging it can be to access that kind of care. In this episode, we’re going to focus on barriers to care that people in rural areas tend to face.

Julie Hallet, MD, M.Sc., FRCSC is a surgical oncologist at Sunnybrook Health Sciences Centre at the University of Toronto. 

Heloisa Soares, MD, PHD is a medical oncologist specializing in NETs at the Huntsman Cancer Institute at the University of Utah.

Thank you to Gene Matthews, Serra Kefeli, and Bev O’Neill for sharing their NEN stories.

Click here to download a transcript of this episode.

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