Caregiving and Neuroendocrine Cancer

It was 2004 and Pat and Chuck were preparing to move to a new home – life was good, personally and professionally. Then Pat suddenly developed what the doctor thought was bronchitis. When she went into heart failure they discovered a neuroendocrine tumor on her bronchus. Chuck became the researcher, the person Pat could turn to for answers, for emotional support, for loving care; he is her advocate.

This  series has been made possible by the generous support of Lexicon Pharmaceuticals as part of the Fit-to-Fight series. Watch the complete series here, https://www.carcinoid.org/for-patients/videos/ccf-50th-anniversary-videos/.

The Latest News

CCF Debuts New Video Series

CCF is presenting a new video series beginning with “The ABCs of Neuroendocrine Cancer: 2020 Update,” featuring neuroendocrine cancer expert physicians!

In the dynamic world of diagnosing and treating people living with neuroendocrine tumors (NETs), four expert physicians discuss everything from the increased incidence of NETs to symptoms of the disease and how to live with NETs for many years. What is unique about NETs? Where do NETs form in the body? What are the most recent advances in imaging and treatment options? Dr. Emily Bergsland, Dr. Pamela Kunz, Dr. Rodney Pommier, and Dr. Edward Wolin provide an overview about this uncommon cancer and offer patients perspectives from key opinion leaders in the field.

CCF gratefully acknowledges support for this series which has been made possible by Lexicon Pharmaceuticals,  Novartis Pharmecuticals, Ipsen Biopharmaceuticals, and the Maryvale Sisters, In Loving Memory of Sister Mary Norman.

CCF Announces New Facebook LIVE Series

The Carcinoid Cancer Foundation is excited to announce a new series – Luncheon with the Experts – featuring physicians and healthcare professionals, support group leaders, patients, and colleagues who are key opinion leaders in the neuroendocrine cancer community worldwide. This year-long series will be presented via Facebook Live on Thursdays from 12 noon to 1 pm, Eastern Time. Join us for unique discussions on a wide variety of topics for everyone in the NET community!

We appreciate Lexicon Pharmaceuticals’ support of the Luncheon with the Experts series, which begins on July 9th. Stay tuned for details on future events! READ MORE

 

Stop&Shop Community Bag Program Supports CCF and the Environment

Stop and Shop Community Bag Program_2

Read more about how you can participate.

 

CCF  Website for  PRRT and Gallium-68 PET/CT Scan

Visit CCF’s website dedicated to providing information about PRRT and the Gallium-68 PET/CT scan. This site includes an interactive map to locate facilities where PRRT and/or the Gallium-68 PET/CT scan are being offered. The map will be updated regularly as additional facilities provide these services. https://www.prrtgalliumcenters.org/.

PRRT Gallium Centers Website

 

 

Promising Developments in the Pipeline for High Grade Neuroendocrine Tumor Diagnosis and Treatment

“Treatment for high grade neuroendocrine neoplasms (abnormal tissue growth) is moving the way that the treatment for triple negative breast cancer is moving — toward the realization that there are a basket of subtypes and that each can be potentially treated differently,” according to Aman Chauhan, MD, medical oncologist, Director of NET Theranostics, Markey Cancer Center (NCI Designated Cancer Center), University of Kentucky. Insights gained through clinical trials will change how these cancers are diagnosed and treated.  Read more

New NCCN Patient Guidelines, Neuroendocrine Tumors

The Carcinoid Cancer Foundation is pleased to share the newly published NCCN (National Comprehensive Cancer Network) Guidelines for Patients® Neuroendocrine Tumors and to have endorsed these guidelines, which focus on tests and treatment options recommended by experts in cancer.  The 100-page publication is accessible in several ways. Read more

Peptide Receptor Radionuclide Therapy, PRRT: Information and Locations

Since we shared the news of the FDA’s January 26, 2018 approval of peptide receptor radionuclide therapy, PRRT, with Lutathera  (lutetium Lu 177 dotatate), more information has become available for the neuroendocrine tumor community, including updates about coverage and reimbursement; information about patient assistance programs being offered by Advanced Accelerator Applications (AAA), the manufacturer of Lutathera; new patient materials from  Advanced Accelerator Applications; and locations where the treatment is currently being offered. Read more

PRRT Infographic_2

 

Patient & Caregiver Education on Carcinoid Syndrome: Talking to Your Doctor About Symptoms, Diet, and Treatment

Join us for a new educational program designed for people living with Carcinoid Syndrome and their loved ones. This program provides information about:

  • how a diagnosis is reached
  • what to eat when living with Carcinoid Syndrome
  • how to  manage it over time

Check out this free program at your convenience: https://www.carcinoid.org/treatment-education/

Below is a short clip from the program featuring NET expert David Metz, MD talking about the signs and symptoms of carcinoid syndrome.

 

Cancer Coach Live, Carcinoid Syndrome program, on-demand

Gallium 68 PET/CT Scanning for Neuroendocrine Tumors — Information and Locations

The US Food and Drug Administration’s June 1, 2016 approval of the Gallium-68 PET/CT DOTATATE scan using NETSPOT® heralded a new age of nuclear imaging in the United States for neuroendocrine tumors. Click here for more information about the scan and locations of where it is being offered throughout the US.  We will be adding to the list based on feedback from the NET community.

CCF Infographic: 6 Questions to Ask Your Doctor

Have you or someone you love been diagnosed with a neuroendocrine tumor or carcinoid cancer?  It can feel like a daunting task to figure out next steps and doctor appointments may be overwhelming.   You can help yourself or support a loved-one by learning about the disease and preparing yourself for doctor visits.  The first visit may be the most challenging, so It’s important to arm yourself with relevant questions.  Here we provide you with six questions, specific to neuroendocrine tumors, to ask your doctor.   Click here to download the infographic.

Carcinoid Syndrome Website

The Carcinoid Cancer Foundation’s website www.carcinoidsyndrome.org  is a space for everything about carcinoid syndrome – from diagnosis and treatment to news and community updates. This site is a great resource for patients, caregivers, and physicians alike – looking to learn more about carcinoid syndrome.

Guide to Understanding Carcinoid Syndrome

Know the signs and symptoms — skin flushing, diarrhea, heart racing . . . it could be carcinoid syndrome!  How is it diagnosed, what are the treatment options, what questions should you ask your healthcare provider?  Read more in Guide to Understanding Carcinoid Syndrome,  from Health Monitor and the Carcinoid Cancer Foundation: https://www.carcinoid.org/wp-content/uploads/2015/10/Carcinoid-Syndrome-Guide-to-Understanding.pdf.

Reaching Those Who Are Still Undiagnosed

To combat statistics showing that it often takes 5 to 7 years for patients to receive the correct diagnosis of a neuroendocrine tumor (NET), the Carcinoid Cancer Foundation has partnered with Advanced Accelerator Applications to create an infographic listing common symptoms and misdiagnoses.  Please share this broadly in hopes of helping others get the proper diagnosis more quickly. Download the infographic here.