INCA Monthly Newsletter - August 2018 News Update
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The World Lost Aretha Franklin to NETs
The Queen of Soul, Aretha Franklin sadly died of neuroendocrine cancer (NETs) of the pancreas, the very same cancer that killed Apple founder Steve Jobs and takes the life of thousands of people each year. Neuroendocrine cancer is a type of cancer that is very different to the more common pancreatic cancer.
As announced in a family statement, Aretha Franklin passed away in her home in Detroit on August 16th. It was stated that Franklin’s official cause of death was due to advanced pancreatic cancer of the neuroendocrine type, which was confirmed by Franklin’s oncologist, Dr. Philip Phillips of Karmanos Cancer Institute in Detroit.
Pancreatic cancer and pancreatic neuroendocrine cancer are two very distinct cancers with distinct behaviors that originate in different types of cells in the pancreas. As such they have different symptoms and outcomes for patients.
An often misdiagnosed form of cancer in the medical industry (and sometimes in the media too), neuroendocrine tumours are commonly located in the pancreas, lungs, abdomen, reproductive organs and bowel. Symptoms can include weight loss, hot flushes, shortness of breath and diarrhoea, the disease is frequently misdiagnosed with other conditions such as anxiety, menopause, Irritable Bowel Syndrome (IBS) or diabetes.
Simone Leyden, INCA President and CEO of the Unicorn Foundation Australia says:
“Our NETs community has been saddened to hear of the loss of Aretha Franklin. Another beautiful soul has been lost to NETs, may Aretha RIP. As neuroendocrine cancer affects hundreds of thousands of patients across the world, we need to raise awareness around this frequently overlooked disease and make sure people are familiar with the symptoms.”
The International Neuroendocrine Cancer Alliance (INCA) consists of 20 patient advocacy and research groups and supports NET patients (and their families) by advocating on their behalf to improve diagnosis, care and research globally.
In memory of Aretha Franklin, Simone Leyden spoke to 9 News Melbourne about NETs. Watch the full video here.
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AMEND Launches UK Regional Volunteers Project
AMEND’s 8 new Regional Volunteers are all trained and beginning to set up their regional meetings for members of AMEND’s community around the UK. Areas in the UK currently covered include, Essex, Suffolk, Tyne and Wear, Birmingham, Leicestershire, Warwickshire and the South West. AMEND's Volunteers include, an ACC patient, a mother of a child with MEN2b and MEN1 patients and family members. To learn more about the volunteers and their regional meetings, visit the AMEND website.
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Where the Heart Is
CCF’s 50th anniversary video series continues with “Where the Heart Is.” 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.
Watch the video on CCF's Youtube channel, or on Facebook.
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NET Patient Foundation: Walk for NETs
It is a constant challenge for all patient organisations to raise funds to keep their services running, and one of the NPF's campaigns is Walk for NETs - raising funds and awareness! It is open to anyone and can be done anytime between June and September, anywhere in the UK. A gentle stroll with the children, a lively walk with the dog or a hike through rocky terrain! Hundreds of patients, family and friends have taken to the streets, parks, hills and mountains, taking small (and big) steps to take on NETs. Each step taken helps the NET Patient Foundation to provide essential medical, practical and emotional support to the NET community. There has been an amazing response to the campaign this year - it was a lovely summer and the NPF are so grateful to those who have taken part.
Thank you!
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NET Research Foundation Funds Study to Look for Predictive Biomarker
It is hard for doctors to know which patients will respond to which therapies. New approaches in personalized medicine use predictive “biomarkers” to help guide treatment decisions.
A biomarker is a molecule found in blood, body fluid, or tissue. Research sometimes shows that people with a certain biomarker are more likely to respond to treatment than those who do not have the biomarker. Then doctors can test for that biomarker before starting treatment. That way patients who are most likely to improve are the ones given the treatment.
NETRF has funded a study of patient data to look for shared biomarkers among NET patients who participated in a clinical trial of cabozantinib, an approved treatment for kidney and thyroid cancer.
Jennifer A. Chan, MD, MPH, Dana-Farber Cancer Institute, Boston, MA, led a phase II clinical trial of cabozantinib in patients with carcinoid and pancreatic neuroendocrine tumors (pNET) ( NCT01466036). Six out of 41 patients with carcinoid and three of out 20 with pancreatic tumors experienced a partial response, with an overall response rate of 15%. Dr. Chan calls the results encouraging.
With funding from NETRF, Chan will now evaluate blood samples from clinical trial participants to see if those who responded to cabozantinib share any common biomarkers. If Chan identifies a possible biomarker in the NETRF-funded study, she will try to verify it in a phase III trial of cabozantinib in NETs.
Full article from NETRF
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