Ivy Elkins: lung cancer patient, super responder, advocate

Diagnosis:

“My first reaction to my diagnosis was sheer terror”

Elkins assumed the pain and stiffness in her elbow and the slight pain in her neck would respond to simple treatments and physical therapy. Six months, an MRI, a biopsy, and a PET scan later she was diagnosed with stage IV non-small cell lung cancer that had spread to her brain and multiple locations in her bones.

“I went from being a totally healthy, active, 47-year-old married mom of 2 young boys to being diagnosed with stage IV lung cancer. So, it was a huge shock – huge shock,” she said in this interview in which she described the start of her lung cancer journey and the path to her diagnosis.

Ms. Elkins credits a sense that “there might really be something wrong” – beyond just the aches and pains of aging – with her persistence in seeking answers.

“If I hadn’t kept going on and advocating for myself, I wouldn’t be here right now,” she said.

Treatment

“[The EGFR mutation finding] changed the whole strategy for treating me from a one-size-fits-all strategy to a specific targeted therapy treatment that suppresses my EGFR lung cancer.”

When imaging identified a mass in her elbow as the cause of months-long pain that failed to respond to conservative therapy­ – and further showed that it was a lung cancer metastasis, a biopsy was performed and revealed that Ivy Elkins had an epidermal growth factor receptor (EGFR) lung cancer mutation.

She was initially treated with afatinib due to her brain metastases and experienced improvement of her elbow symptoms within a week. She continued an active lifestyle with stable disease for about 3 years.

However, despite a lack of symptoms, a follow-up CT scan showed some progression and she was started on osimertinib, another targeted therapy that had recently been developed to attack the type of secondary mutation (T790M) she had.

That was a little over 2 years ago, and the treatment was effective and caused minimal side effects. “I still feel fantastic and I’m doing great,” she said, noting that such a response isn’t necessarily typical. In fact, she’s considered a “super-responder.”

“I’ve been very, very fortunate and that has allowed me to fully live a normal life, be involved with advocacy, travel, do everything that I enjoy doing.”

The patient-oncologist relationship

“I love my oncologist … we have hugged and laughed together. When I progressed, we cried together.”

The patient-oncologist relationship is extremely important, and very different than the relationship one might have with a doctor they see once a year due to an illness, according to Ivy Elkins, who described the patient-oncologist relationship as a very special long-term partnership.

“You want to have an oncologist who treats you as a person, who makes a little bit of an effort to get to know you and what your priorities are in life so he or she knows what’s important to you … what you need so that they can consider that when they talk to you about treatment alternatives,” she said.

Super responder status

“I really want them to figure out why I have done so well.”

As a “super-responder,” Ivy Elkins said she is committed to research that will identify why some EGFR-positive lung cancer patients respond so much better than others to treatment, and she regularly submits blood samples as part of study looking for just those answers.

“I’m looking forward to finding that out … because I would love that to be able to help other people who are in the same position as I am,” she said, noting that the desire to help others is what spurs her patient advocacy.

Advocacy

“I knew what I had gone through getting up to speed on my diagnosis and about lung cancer.”

After the initial shock of being diagnosed with lung cancer and coming to terms with the diagnosis, Ivy Elkins dove into the process of learning everything she could about her EGFR-positive lung cancer.

She had to learn the language.

“I had to understand what different types of scans I needed, what type of treatment I needed, what targeted therapy even meant,” she said. “And then I honestly needed to kind of grieve my life as I thought it was going to be.”

But within about a year and a half, she began to feel stable enough emotionally and physically to start thinking about others who were facing similar diagnoses. That’s when her lung cancer journey also became an advocacy journey. In this interview she discusses her role as a patient and research advocate.

The EGFR Resisters

“We are working to learn more about the mechanisms of EGFR-mutated lung cancer resistance.”

Ivy Elkins became a patient advocate about 18 months into her lung cancer journey, and about a year and half ago she joined forces with 6 other lung cancer patients with EGFR mutations and formed a patient-focused group that aims to “build connections and share knowledge and accelerate research.”

The group is now some 1,200 members strong and collaborates with other advocacy groups, pharmaceutical companies, and oncology researchers with a shared goal of making EGFR-positive lung cancer a chronic disease “where people don’t view it or feel that they have a terminal diagnosis, [but as a disease where] they can move from one treatment to the next treatment,” Ms. Elkins said in this video interview.

“We’re not there yet, but that’s the goal,” she said.

Find more information about the group on their website or follow them on twitter at @EGFRResisters.