CURE® Teams Up with Melanoma Research Foundation and AIM at Melanoma to Collaborate in Advocacy Spotlight Partnership Program

CURE® Magazine, the largest consumer publication in the United States focused entirely on cancer, today announced that two leading advocacy groups for patients with melanoma, AIM at Melanoma and theMelanoma Research Foundation (MRF), have joined CURE’s Advocacy Spotlight Partnership Program to battle the deadly skin cancer together.

“ ‘We want to recognize that skin cancer is the most common type of cancer, with melanoma its most dangerous type. We are pleased to team up with two leading melanoma advocacy groups to increase focus on this deadly disease, because it is highly curable if detected early,’ said Mike Hennessy Jr., president of Intellisphere Oncology and Healthcare Specialty Group, part of the Plainsboro, N.J.-based Michael J. Hennessy Associates, Inc. (MJH) family of businesses.”

Super Patient: Patient Advocates Help Susan Steel Win Admittance to Clinical Trials

Update:  We are deeply saddened to report that Susan passed away on January 13, 2016. It is a privilege to continue to share her story and keep her memory alive.

When Susan Steel first noticed the mole that derailed her life ten years ago, she was busy raising two children and running two businesses. “I just wasn’t paying attention,” she says. It wasn’t until the mole grew and started to bleed that she finally saw a doctor—and then she was hit with the news that she had melanoma and that it had spread to her lymph nodes.

“My life changed very fast,” Susan recalls. “I was told that my chances were very slim and that I should get my affairs in order.” Continue reading…

How A Group Of Lung Cancer Survivors Got Doctors To Listen

“A group of lung cancer survivors was chatting online last May about what they thought was a big problem: Influential treatment guidelines published by a consortium of prominent cancer centers didn’t reflect an option that several people thought had saved their lives. They wanted to change that.

“The guidelines from the National Comprehensive Cancer Network are important because they’re often a first stop for an oncologist trying to develop a treatment plan after a patient’s diagnosis, Chris Newman, one of the patient group’s members, told Shots. But the guidelines don’t always reflect newer and less proven treatment options that may be offered only at big academic cancer centers, she said. Patients might miss out on treatments that could help them, if the guidelines aren’t up to date.

“That’s what Newman and others thought was happening for some patients with a type of advanced non-small cell lung cancer. When cancer has spread, or metastasized, beyond the original site, it’s diagnosed as stage IV. And it’s historically been a pretty black and white diagnosis. With most forms of cancer, you have metastases or you don’t, says Paul Okunieff, a radiation oncologist and director of the University of Florida Health Cancer Center. Patients whose cancer has spread are often offered chemotherapy or supportive care rather than surgery or radiation to remove the tumors, on the assumption that it’s too late to prevent further spread.

“But some research suggests that patients with oligometastases, or a limited number of tumors (Okunieff says it’s fewer than three or five, depending on whom you ask) may get significant benefit from more aggressive treatment. That possibility wasn’t reflected in the NCCN guidelines.”

Association Launches Nationwide Lung Cancer Awareness Initiative

“The American Lung Association – in partnership with national presenting sponsor, CVS Caremark – recently unveiled LUNG FORCE, a national initiative to make lung cancer in women a public health priority, drive policy change and expand research funding.

“ ‘Together we have to make lung cancer in women a public health priority and change our thinking about this disease. We hope that with increased awareness and education, women will join the fight against lung cancer and for lung health,’ Harold Wimmer, national president and chief executive officer of the American Lung Association, said in a press release. ‘We are proud to introduce LUNG FORCE and honored to have CVS Caremark as a partner in this new movement that unites women to stand together against lung cancer.’ ”

Patient’s Perspective: Erin Youngerberg’s Take on Melanoma

Erin Youngerberg was diagnosed with melanoma in October, 2010, at age 32 years. Well-traveled and an avid photographer, she grew up in Minnesota, went to college and worked in Milwaukee, then made her way east, living in Ohio and North Carolina before ending up in Jersey City, just outside of New York City. After her diagnosis, she started a blog to keep folks back home updated. Called ‘Melanoma and the City,’ it tells the whole story: from appointments at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York City to various city adventures; from treatment side effects to recipes for quinoa and tacos. Erin has also found herself dedicated to spreading the word about melanoma awareness. We asked her to take us through her melanoma story. Continue reading…

A Conversation with Catherine Poole: Melanoma Survivor, Patient Advocate, and Founder of the Melanoma International Foundation

The Melanoma International Foundation (MIF) is a nonprofit organization that provides a support community and scientific guidance for patients with all stages of melanoma and their families and caregivers. The MIF was founded in 2003 by Catherine Poole, who was diagnosed with melanoma 23 years ago. I spoke with Poole about the MIF and her role as a melanoma patient advocate. Continue reading…