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

10th Annual Monica Warner Awards Announced

Congratulations to Pam Ryan and Gil Schaenzle who have been named recipients of the 10th Annual Monica Warner Award. Both Pam and Gil embody the passion, dedication, leadership, and spirit of the late Monica Warner, a driving force in the neuroendocrine tumor (NET) community.

As an oncology nurse navigator, Pam is known for her compassion and selfless dedication to improving the care of patients with NET, going above and beyond to meet their needs and creating NET guidelines and protocols for other nurses to ensure they have the resources they need.

Gil has persevered through personal tragedy as a NET caregiver to give back to the community in extraordinary ways and has dedicated her life to spreading NET cancer awareness.

Each award comes with a $10,000 donation from Novartis to a patient-focused 501(c)(3) charitable organization, which Pam has donated to the Zebra Fund at Ochsner Medical Center-Kenner and Gil has donated to The Healing NET Foundation.

Read more about the 2019 Monica Warner Award recipients and the award. https://www.carcinoid.com/monica-…/monica-warner-award-home/

Facebook LIVE with Josh Mailman

Join us on Thursday, May 28th at 12 noon EST, for a special Facebook Live event! We’ll hear from neuroendocrine tumor (NET) patient advocate Josh Mailman for an in-depth discussion about Support Groups. We hope to see you there!

If you have any questions for Josh, send them our way by email at carcinoid at carcinoid.org, by private message on our Facebook page,  or CLICK HERE to comment on our Facebook post and Josh will try to answer them LIVE!

This Facebook Live Event will be hosted by Rain Bennett, a longtime CCF filmmaker and dear friend of the NETs community. #LetsTalkAboutNETs

Facebook Live with Josh Mailman, May 28, 2020

 

 

Ipsen Temporarily Modifies Program for Receiving Somatuline Depot during the Pandemic

Ipsen CARES is temporarily making Somatuline Depot available, at no charge, for eligible patients who cannot get their medicine because they are homebound due to the pandemic, and allowing eligible patients covered by Medicare or Medicaid to participate in Nurse Home Health Administration (NHHA) services.For more information,  visit Ipsen CARES or CLICK HERE. Ipsen CARES can be reached by calling (866) 435-5677.

 

Novartis Temporarily Modifies U.S. Mobile Administration Program for Sandostatin LAR During Pandemic

Due to the COVID-19 pandemic and Novartis’ ongoing commitment to support patients,  Novartis has temporarily modified the eligibility criteria related to their U.S. mobile administration program (MAP) to allow for use by patients currently receiving Sandostatin LAR therapy, regardless of insurance plan or state of residency. 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

Help Support CCF!

During our first 50 years, the Carcinoid Cancer Foundation has helped tens of thousands of people diagnosed with neuroendocrine cancer, loved ones, and those seeking a diagnosis. Have we helped you? Here’s a way to give back.Together we can help CCF achieve its mission of education, awareness, support and advocacy. Please donate today! https://carcinoid.kindful.com/

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.