NETWise

Lung NETs are often overlooked, less frequently discussed, and more misunderstood than NETs that begin in the pancreas or GI tract. It can be frustrating for individuals and families living with a lung NET to find useful information or the right health care professional to work with. This special episode of NETWise covers all things Lung NETs.

Do you want to learn more about the classification of the different types of lung NETs? In this episode, we map out the lung NET classification system. While we mainly focus on typical and atypical carcinoids, we also included information about large cell and small cell lung cancer. We talk about each different type of lung NET, their distinctive characteristics, and what they have in common. We did not forget about DIPNECH. Information about this ultra-rare condition is also included in this episode.

This episode is for every person and family affected by lung NETs. We hear your call for more information. After you listen to this episode, you will have a better understanding of the classification system of lung NETs, surgical options (including the controversial ones), medical treatments, and how you can get involved with research to advocate for more approved treatment options.

LungNETS: See the different types of LungNETs and how they differ in their aggressiveness and likelihood of spreading.

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Lung NETs

A Look at Lung NETs

VIDEO: Medical Management of Lung NETs – Dr. Ed Wolin, Mount Sinai Medical Center

VIDEO: Basics of Lung NET Diagnosis and Treatment – Dr. Sukhmani Padda – Stanford University 

VIDEO: Surgical Treatment of Lung NETs – Dr. Andrew Kaufman – Mount Sinai

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Special Episode: Lung NETs appeared first on NETRF.

What are clinical trials? In this episode of NETWise, discover how new ideas in NET detection and treatment are moving from the laboratory to the bedside. You’ll learn about the different stages of research and how promising drug compounds progress through them.

You will also learn how clinical trials determine whether new or improved treatments are safe and effective and work better than current therapies.

Have you ever thought about joining a clinical trial? You will hear from NET specialists like Drs. Satya Das, Daniel Halperin, Renuka Iyer, Pam Kunz, Nitya Raj, and Diane Reidy-Lagunes about how patients can talk to their care team about participating in a clinical trial. This episode will also dispel some common clinical trial myths about taking placebos and eligibility requirements. We hear from NET patient advocate Josh Mailman about some of the existing problems accessing clinical trials and what we can do to overcome these barriers.

After you listen to this episode, you will have a better understanding of how clinical trials work, why they are essential, and how you can talk to your care team about your participation options.

Clinical trials: See the phases of clinical trials and how they differ in the process to develop and test new treatments.

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Clinical Trials for NETs

Therapies for Neuroendocrine Tumors

Steps to Find Clinical Trials

VIDEO: Clinical Trials – What Are They and Who Should Enroll – Dr. Pamela Kunz, Yale University 

VIDEO: Understanding Clinical Trials – Dr. Renuka Iyer, Roswell Park Cancer Institute

VIDEO: Immunotherapy for NETs – Dr. Pamela Kunz, Yale University 

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 7: Clinical Trials appeared first on NETRF.

In this special episode of NETWise, we learn how COVID-19 is forcing our health care systems to make sweeping operational changes. Amid lockdown and stay-at-home orders, NET specialists are switching to telemedicine visits as a new option.

The increased use of telemedicine over the past few months is creating new opportunities for NET patients. We recognize that not all NET patients have access to a NET specialist. Traveling to faraway appointments may not be an option. But virtual appointments via telemedicine are now helping NET patients across the country reach out to NET specialists. 

Listen as we talk with Dr. Heloisa Soares and her NET care team at the Huntsman Cancer Institute at the University of Utah to learn more about how telemedicine works and its benefits to NET care. We also talk to a NET patient about her positive experiences using telemedicine and how to prepare for a successful virtual visit. 

After listening to this episode, you will know more about how telemedicine can help you access the best possible care for your NET.  

Share Your Story

Find a NET Specialist

COVID-19 Resources

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

Navigating the NET Patient Journey – Healing NET Foundation Guide

The post NETWise Special Episode: COVID-19 and the Rise of Telemedicine appeared first on NETRF.

This episode is about managing the symptoms of functional NETs. To understand these symptoms, we start by talking about hormones. What role do hormones play in the human body? And what do they have to do with NETs?

We’ll help you understand the differences between functional and non-functional NETs. You’ll also learn why their shared characteristics make it hard to tell them apart.

A panel of NET specialists discusses ways to manage the many symptoms caused by functional NETs, including:

You’ll also hear from two NET patients who talk about their experiences with carcinoid syndrome and carcinoid crisis. This episode will leave you with more information than ever about symptomatic NETs and how  to better manage your disease.

Share Your Story

Managing Symptoms of NETs

Eating Right with NETs

Therapies for Neuroendocrine Tumors

VIDEO: Hormones and NETs – Dr. Joseph Dillon, University of Iowa

VIDEO: Functional and Nonfunctional NETs – Dr. Aman Chauhan, University of Kentucky

VIDEO: NET Symptoms and Treatments – Dr. Dan Halperin, MD Anderson Cancer Center

VIDEO: NET Nutrition – Luz Chavez, University of Chicago

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 6: Managing Symptoms of NETs appeared first on NETRF.

What treatments do oncologists use to slow or stop neuroendocrine tumor growth? What role do newer approaches like targeted therapy or immunotherapy play in treating neuroendocrine cancer? And what drugs can be used to alleviate symptoms caused by hormone-producing tumors? 

In this episode of NETWise, we explore multiple medical treatments for neuroendocrine tumors. We’ll look at the different roles chemotherapy, targeted therapy, and hormone therapy play in managing the spread of disease…and in managing the disruptive symptoms caused by some NETs. 

You’ll gain insight into the sequencing of treatments as we discuss how medical treatments are integrated with other modalities of care, such as surgery and nuclear medicine. And when you’ve finished listening to this important discussion, you will be more informed for the next conversation you have with your care team about treatment planning.

Therapies for Neuroendocrine Tumors

Clinical Trials for NETs

NET Patient Stories

VIDEO: Chemotherapy and Targeted Therapy for NETs – Dr. Mark Lewis,  Intermountain Healthcare 

VIDEO: Multi-Disciplinary, Patient Centered Care – Drs. Sue O’Dorisio and Tom O’Dorisio, University of Iowa

VIDEO: What About Immunotherapy – Dr. Pamela Kunz, Stanford University 

VIDEO: Systemic Therapies for NETs – Dr. Andy Liao, University of Chicago

VIDEO: NETs Symptoms and Treatments – Dr.  Dan Halperin, MD Anderson

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 5: Medical Management of NETs appeared first on NETRF.

In this special episode of NETWise, listen as we talk about COVID-19. As a NET patient, you may have additional risk for serious illness from COVID-19, so we share some tips for avoiding infection, managing your NET treatment, and staying mentally healthy during this challenging time.

NETRF CEO, Elyse Gellerman, chatted with Dr. Mark Lewis, NET patient and the Director of Gastrointestinal Oncology at Intermountain Healthcare, about the ten things patients and caregivers want to know about NETs and COVID-19. Portions of that interview are included in this podcast. Watch the entire interview on NETRF’s YouTube page.

Stay up to date with your local and national health authorities and your NETs care team for the latest information.  NETRF has an entire section of our website dedicated to COVID-19 information as well as NET-specific resources.

This podcast and the information it contains is current as of its recording date on April 7.

Information from NETRF about COVID-19

Ten Things You Want to Know About COVID-19 and NETs – Webinar with Dr. Mark Lewis and Elyse Gellerman

Inspire (groups for lung, GI, and pancreatic neuroendocrine tumors)

Association of Cancer Online Resources (ACOR) Carcinoid Cancer Online Support Group

Information about telemedicine and telehealth

Ipsen offers a home injection program for lanreotide, through its IPSEN CARES® program at (866) 435-5677.

Novartis offers a mobile administration program for long-acting octreotide through its Patient Assistance Now Oncology (PANO) program at 1-800-282-7630.

National Organization for Rare Disorders webinar on Self-Advocacy and Care Coordination featuring Laran Hyder, NETRF Director of Patient Education and Outreach.

NorCal CarciNET Community

LACNET’s NET VITALS tool

Patient Advocate Foundation

https://beta.aa-intergroup.org/

https://www.samhsa.gov/find-help/national-helpline

https://www.popcornflix.com/

https://www.vudu.com/content/movies/uxpage/View-All-Free-Movies-TV/206

https://tubitv.com/home

https://pluto.tv/

https://www.gutenberg.org/

https://manybooks.net/

https://www.jigsawplanet.com/

https://www.arkadium.com/free-online-games/

https://www.merriam-webster.com/word-games

The post NETWise Special Episode: COVID-19 and NETs – What You Need to Know appeared first on NETRF.

This episode of NETRF’s NETWise podcast discusses Peptide Receptor Radionuclide Therapy (PRRT) a targeted form of radiotherapy approved in the U.S. in 2018. Listen in as NET experts like Josh Mailman, Drs. George Fisher, Thor Halfdanarson, Ed Wolin, Richard Baum, and others explain what it is, how it works, and who is most likely to benefit from PRRT. This therapy relies on a tumor’s expression of somatostatin receptors. We explain what they are and how to know if you have them.

Then, we’ll take an objective look at the success rates for this therapy. What does research, like the NETTER-1 study, tell us about outcomes for this form of treatment? To give you information about both the pros and cons of PRRT, we will also discuss the potential side effects, from mild to serious. To give you a sense of what it is like to undergo PRRT, we’ll talk with multiple patients about their experience with the procedure itself, as well as the radiation safety precautions patients should take immediately following treatment. Finally, we look to the future asking Drs. Rod Hicks and Tom Hope to explain some of the new therapeutic directions PRRT is taking.

PRRT for NETs. This handout explains how radioactive drugs are able to target NET cells with radioactivity using PRRT.

What is PRRT? A quick guide to answer your most basic questions about the pros and cons of PRRT.  What are the benefits of PRRT? What are the potential side effects of PRRT?  Who can be treated with PRRT? 

Nuclear Medicine Treatments

Gallium-68 Dotatate PET/CT Scan

Search for PRRT treatment Centers Near You

What’s Next in PRRT Treatment

VIDEO: How PRRT Works and Who Benefits – Dr. Blase Polite, University of Chicago

VIDEO: What to Expect During PRRT Treatment – Karen Ohara, Rush University Medical Center

VIDEO: How PRRT Can Improve Care for NET Patients

VIDEO: Combining PRRT with Targeted Therapy

VIDEO: Tb-161: Exploring a New Radionuclide for PRRT

Request a mailed copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 4: Nuclear Medicine for NETs: What is PRRT? appeared first on NETRF.

In this episode of NETWise, we discuss two common treatments for neuroendocrine tumors. Treatment, like surgery and interventional radiology, can reduce the number and size of NETs as well as reduce some of the symptoms caused by tumors.

Did you know that almost 70% of NET patients have surgery? In this episode, NET surgeons describe surgical procedures like “debulking” and the whipple procedure. We also hear how endoscopies are used to treat NETs. Here is a hint. Have you ever played Pac-Man?

You will also learn more about “multi-focal primaries” in the small bowel and how surgeons can employ minimally invasive surgical techniques to “run the small bowel.” We also speak with an expert thoracic surgery about several surgical options for lung NETs.

We will explain enucleation surgery and talk more about all the surgery jargon you often hear and what it means for patients.

Last, but not least, NETWise covers all the information you need to know about interventional radiology (IR) for NETs. We describe bland embolization, chemoembolization, radioembolization, and radiofrequency ablation. Finally, two patients add their surgery experiences to the podcast as they talk about their decisions to have surgery and their respective recoveries.

If you are scheduled for upcoming NET surgery, please consider donating tumor tissue to fill the urgent need for use in laboratory research. Find out more here.

Gastrointestinal (GI) Tract Surgeries: Anatomical illustrations show what tissue is removed during surgery, with explanations about the most common GI surgeries for NETs.

Pancreatic Surgeries:  The pancreas is surrounded by important organs and made up of different parts. Take a look at these illustrations to improve your understanding  of pancreas anatomy and the different surgeries used to treat it.

Lung Surgeries: Illustrations depict the different parts of your respiratory system. See how different  surgical approaches are used to remove tumor tissue, while preserving healthy tissue. 

Liver-directed Therapies: See the explanations and illustrations about how interventional radiology removes or reduces liver NETs, with information about different types of embolization and ablation.

Los Angeles-based patient support group LACNETS has developed a NET quiz based on this NETWise podcast. Once you’ve finished listening, test your knowledge.  

Tumor Grade and Stage

Find a NET Specialist

Donate Tumor Tissue for NET Research

NET Surgery

Interventional Radiology for NETs

Distal pancreatectomy

Enucleation

Pancreatoduodenectomy (Whipple Surgery)

Small bowel resection

Lobectomy

Pneumonectomy

Sleeve resection

Wedge resection

Request a mailed copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post NETWise Episode 3: Surgery and Interventional Radiology for NETs appeared first on NETRF.

Learn about important neuroendocrine tumor diagnostic tests including Gallium 68, Ki-67, and 5-HIAA. Listen as NETWise takes you on a journey to diagnose neuroendocrine cancer. This episode discusses some common NET tests so you can understand their role in your treatment planning and be better able to understand what the results mean. You will hear from two patients about their experiences with diagnosis and monitoring. We explore imaging in this episode, describing CT and MRI scans, PET-CT scans, FDG-PET, octreotide scans, and Gallium-68 (Ga-68) dotatate PET. You will hear about endoscopy and biopsy. Pathology plays a role in determining a diagnosis as well as determining grade. You will learn about well-differentiated and poorly-differentiated NETs and what that may mean for determining treatment. We also talk about blood and urine tests and how they may be used for detection and monitoring. Finally, we speak with physicians about building an expert care team and how you can work with both a local doctor and distant expert to get the best care.

From blood-testing to x-rays, and everything in between, learn more about the many different ways NETs are diagnosed and monitored.

NETs are a complicated disease and many people may be included in your care. Check out how many different people could be a part of your care and support team.

Los Angeles-based patient support group LACNETS has developed a NET quiz based on this NETWise podcast. Once you’ve finished listening, test your knowledge: Part 1, Part 2.  

Diagnostic Testing for NETs

Imaging Tests for NETs

Blood Tests for NETs

Urine Testing for NETs

Tissue Tests for NETs

Tumor Grade and Stage

Find a NET Specialist

Donate Tumor Tissue for NET Research

Request a mailed copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

Navigating the NET Patient Journey – Healing NET Foundation Guide

The post NETWise Episode 2: Imaging, Testing, and Building a Care Team appeared first on NETRF.