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INCA Monthly Newsletter - August 2018 News Update
INCA Members' News
Medical News

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.

INCA Members' News

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.

 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.

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!

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

Registration for Unicorn Foundation New Zealand Annual NET Cancer Patient Education Day Is Open


The Unicorn Foundation New Zealand will hold its annual NET Cancer Patient Education Day on Saturday 22nd Sept, from 10am to 5pm at AUT City Campus, Room WG308, 55 Wellesley Street, Auckland City.
The Unicorn Foundation New Zealand  is excited to be bringing you international speakers and loads of practical information for all NET patients and their supporters. As always, this is a free event to attend, but registration is required. Please click here to read more and register.

The list of guest speakers includes:

Philippa Davies, NET Specialist Nurse, Royal Free London
Complexities of NETs and working in a NET specialist centre

Erin Laing, Dietitian at Peter MacCallum Cancer Centre
Nutrition in NETS, Australian research

Dr Ben Lawrence, Medical Oncologist, Auckland
Research update and MDM case presentation + Q & A

Jenny Allison, Regional Lead Psychologist, ADHB
Psychological Care - talking about NETs with family & friends 

Simone Leyden, INCA President, CEO & Co-Founder Unicorn Foundation Australia 
International NETs research

Kate Wakelin, NET Nurse, Unicorn Foundation Australia
Life with & beyond NETs

Dr Richard Carroll, Endocrinologist, Wellington 
Hereditary NET syndromes and FERNZ Registry

Emma Nichols, Oncology Physiotherapist, ADHB 
Benefits of exercise for Cancer patients

Olivia Cochrane, Dietitian student at Otago University 
Nutrition in NETs, feedback from their research
Medical  News

FDA Approves New Treatment for Pheochromocytoma and Paraganglioma

The U.S. Food and Drug Administration (FDA)  approved iobenguane I 131, an intravenous radiotherapeutic, for the treatment of unresectable, locally advanced or metastatic pheochromocytoma or paraganglioma in adult and pediatric patients 12 years and older.  Patients must test positive for the norepinephrine transporter (as determined by an iobenguane scan), and who require systemic anticancer therapy. 

Pheochromocytoma and paraganglioma are neuroendocrine cancers that arise from cells in and around the adrenal glands. These glands are located right above the kidneys and make hormones including stress hormones called epinephrines and norepinephrines. Pheochromocytomas increase the production of these hormones, leading to hypertension (high blood pressure) and symptoms such as headaches, irritability, sweating, rapid heart rate, nausea, vomiting, weight loss, weakness, chest pain or anxiety. When this type of tumor occurs outside the adrenal gland, it is called a paraganglioma. Metastatic pheochromocytoma and paraganglioma may result in unresectable disease with a poor prognosis, including a five-year survival rate as low as 12%. Treatment options for patients with this disease type were very limited prior to this approval.

“Many patients with these ultra-rare cancers can be treated with surgery or local therapies, but there are no effective systemic treatments for patients who experience tumor-related symptoms such as high blood pressure,” said Richard Pazdur, M.D., director of the FDA’s Oncology Center of Excellence and acting director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research. “Patients will now have an approved therapy that has been shown to decrease the need for blood pressure medication and reduce tumor size in some patients.”

The efficacy of iobenguane I 131 was shown in a single-arm, open-label, clinical trial in 68 patients that measured the number of patients who experienced a 50 percent or greater reduction of all antihypertensive medications lasting for at least six months. This endpoint was supported by the secondary endpoint, overall tumor response measured by imaging. The study met the primary endpoint, with 17 (25 percent) of the 68 evaluable patients experiencing a 50 percent or greater reduction of all antihypertensive medication for at least six months. Overall tumor response was achieved in 15 (22 percent) of the patients studied.

The most common severe side effects reported by patients receiving iobenguane I 131 in clinical trials included low levels of white blood cells (lymphopenia), abnormally low count of a type of white blood cells (neutropenia), low blood platelet count (thrombocytopenia), fatigue, anemia, increased blood clotting, nausea, dizziness, hypertension and vomiting.

The Fight Against Cancer Benefits From a Stronger European Union of Registries

In February this year there was a significant announcement from the European Commission – the Joint Research Centre (JRC) launched the European Cancer Information System (ECIS), the result of several years’ work to integrate data from European cancer registries. The ECIS has data from about 150 European population-based cancer registries from 25 EU member states and 7 non-EU European countries.

It comprises an anonymised database of 34.5 million cancer cases at present, excluding non-melanoma skin cancers, and provides a new and visual way of presenting cancer incidence, mortality and survival data. It also has estimates for this year (2018) based on 
Cancer Incidence in Five Continents for incidence and WHO for mortality in a collaboration led by the International Agency for Research on Cancer (IARC), with also the European Network of Cancer Registries ( ENCR)  and the International Association of Cancer Registries.

Read the full article at Cancer World.
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