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.

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

 

NET Patient Foundation: Walk for NETs

NET Research Foundation Funds Study to Look for Predictive Biomarker

 

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

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