Advocating for Lung Cancer Research

Everyone should be advocating for lung cancer research. 1 in 15 people in the U.S. will be diagnosed with lung cancer in their lifetime. Ivy Elkins is one of those people – read her story.

No one gets elbow cancer

Like so many before her, Ivy Elkins’ road to a lung cancer diagnosis was indirect and complicated.  It was the summer of 2013, and she was plagued by pain in her elbow and neck. Visits to her primary care physician, an orthopedist and six months of physical therapy provided little relief.  She recalls casually inquiring if it could be cancer.

“No one gets elbow cancer,” she was told.

Ivy did not have elbow cancer, but an MRI revealed that the pain in her elbow was caused by a mass – an adenocarcinoma – which was literally eating away at the joint. In order to discover where the primary cancer was, an orthopedic oncologist ordered a PET scan. Ivy’s primary cancer was in her lung. She had no symptoms and had never smoked.

Headshot of Ivy Elkins

EGFR and Targeted Therapy

Biomarker testing showed that her lung cancer had the EGFR mutation which made her eligible for a targeted therapy which had been approved by the Food And Drug Administration (FDA) just a few months earlier. Ivy’s treatment plan was simply a daily pill – she would not need to undergo surgery, chemotherapy or radiation. The 47-year-old mom of two tweens was thrilled to have been spared what can be difficult side effects from traditional lung cancer treatments. The targeted therapy kept her disease at bay for three years.

Then Ivy’s cancer began to find its way around the drug.

Because it is not uncommon for the cancer to outsmart the drug, many patients find that their cancer develops resistance to targeted therapy, resulting in the possibility of further metastases and mutations.  In Ivy’s case, it was the T790m mutation. And, just as luck was on her side when she was first diagnosed, it was again: just months prior, a therapy targeted to her new mutation had been approved by the FDA, one of the many new therapies approved within the past several years. The importance of ongoing research cannot be understated. Ivy has been on that medication for a year and a half and is doing great.

Advocacy: EGFR Resisters

At the time of her diagnosis, Ivy, a married mom of two boys had been thinking about returning to work in finance. As her treatment began, and she had virtually no side effects, she decided instead to become a lung cancer advocate. And boy did she!

Since her diagnosis, Ivy has completed Advocate Training through the American Association of Cancer Research. She then created and moderates two Facebook groups – close to 500 members strong – where they share information regarding clinical trials and treatments. Their primary goal is to work as a group to get the attention of lung cancer researchers.

She’s had many speaking engagements across not only the United States, but Europe as well. Ivy is even a full voting member of the Department of Defense’s Congressionally Mandated Program for Lung Cancer. And, just recently, she’s become a member of LCFA’s Speakers Bureau where she’s already worked on the Hope With Answers video project.

Ivy is living proof of the importance of ongoing research and is doing more than her part to advocate for herself and her fellow lung cancer patients.

Photo of Ivy Elkins advocating