Advocate Spotlight: Ivy

LungCancer.net shares the stories and experiences of people living with lung cancer. We are highlighting the story of our advocate Ivy who learned about her stage IV lung cancer in a shocking and unexpected way.

This is Ivy's story...

Ivy's diagnosis story

I was diagnosed with stage IV non-small cell lung cancer on December 26, 2013, after a six month journey to figure out why I was having pain on the left side of my neck and pain/stiffness in my right elbow. I started with my primary care physician, who told me that my discomfort was likely caused by overuse of my iPad, and sent me to physical therapy. I visited two different physician therapists, an orthopedist who gave me cortisone shots, and a rheumatologist before another orthopedist who specialized in shoulder-to-wrist issues ordered an MRI of my elbow.

Results showed a mass that had eaten away bone, so I was quickly sent to an orthopedic oncologist, had a biopsy which diagnosed malignancy, and finally a PET scan to find the originating location of the cancer. By the time I had all the necessary scans, I had a diagnosis of lung cancer that had metastasized to my bones and my brain, where I had 8 small lesions.

Biomarker testing and treatment decisions

The biopsy tissue from my elbow bone was sent immediately for biomarker testing by my cancer center. Fortunately, I was found to have an EGFR Exon 19 deletion, which qualified me for treatment with a targeted therapy drug called Gilotrif (afatinib), which had recently been FDA approved.

At my first full set of scans after starting this treatment, all of my brain lesions had disappeared, bone had grown back in areas of metastasis, and disease burden in my right lung was significantly less. Gilotrif worked for me for one month shy of 3 years, when my oncologist noted some growth in my lungs on a CT scan.

I had a lung tissue biopsy which showed that I had developed a T790M mutation, which could be treated with a newly approved drug called Tagrisso (osimertinib). I started Tagrisso in November 2016 and remain on it today. In February of this past year, I had an upper right lobectomy because my originating tumor was the only area that still showed active cancer on a PET scan.

I am now considered NED (no evidence of disease).

Inspired by family and other survivors

I have been married to my husband Ben for almost 25 years and we have two teenaged sons, Adam (19 years old) and Jared (17 years old). My family brings me much joy and also includes an adorable 10-pound dog, our 7 year old Shih-tzu named Missy. I am extremely grateful that I have had the opportunity to spend time with my family which was not guaranteed when I was diagnosed in 2013. At that time, I didn’t think I would even see my children start high school, let alone college.

I am inspired by other lung cancer patients and caregivers who continue to live well with lung cancer, finding joy in every day. My lung cancer advocacy work is my attempt to turn this inspiration into something concrete that I can do to help the lung cancer community.

Something most people don't know...

Most people don’t know that I used to work for American Airlines in Dallas, Texas. I worked in finance but was a “volunteer” flight attendant for about a week in 1993 when flight attendants went on strike.

Editor’s Note: We are extremely saddened to say that on June 23, 2024, Ivy Elkins passed away. Ivy’s advocacy efforts and writing continue to reach many. She will be deeply missed.