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Five years after her diagnosis, Ivy Elkins continues to give back to the lung cancer community.

It started with some pain in Ivy Elkins' right elbow. About five years ago, she noticed that she was having difficulty bending and straightening her arm and had pain in her neck. Her primary care physician recommended she undergo physical therapy to see if the pain and mobility improved.

After several months, Elkins was not responding to physical therapy. In fact, it was getting more difficult to bend her elbow. Elkins underwent more testing to determine the cause of the pain. She saw an orthopedist who ordered an MRI, which revealed a mass in her elbow that had eaten the bone away in the joint. The orthopedist sent her to an orthopedic oncologist who performed a biopsy and told Elkins the mass was adenocarcinoma, a malignant tumor. Since adenocarcinomas do not originate in the bone, doctors began searching for the source of the cancer. Elkins was stunned when she learned it originated in her lungs. Further testing also showed eight tiny lesions in her brain.

"I can't tell you how shocked and completely thrown I was to find out that I had Stage IV lung cancer," said Elkins. "It had already spread to my bones, to my elbow, and it had also spread to my neck and a few other locations."

When Elkins was diagnosed, she was in her late 40s, had never smoked and did not have any of common symptoms associated with lung cancer. She never coughed, had trouble breathing or wheezed. The only signs were the pain in her elbow and neck.

In the beginning Elkins said it was very hard to process her diagnosis, but as she underwent treatment she began to feel more hopeful. Elkins' cancer was tested and found to be EGFR mutation-positive. Because of the type of cancer she has, Elkins was able to be treated with a targeted therapy oral medication to address the mutation and shrink her tumor. When her initial targeted therapy medication stopped working after three years,

she was fortunate to be able to have further treatment with a second targeted therapy medication.

While she is not cured, the medications have significantly improved her condition. Within three months of starting her first targeted therapy medication, Elkins said the lesions in her brain were gone and the tumor in her lungs had shrunk.

"As I started feeling better, I felt a little bit more like there was hope and that it wasn't basically, this is it," said Elkins.

Today, Elkins said her life has returned to normal. She enjoys spending time with her family, seeing friends, traveling, reading, seeing movies and trying new restaurants. She has also become an advocate for lung cancer awareness, speaking about her experiences, participating in awareness walks and advocating for more research. She is especially committed to helping raise funds for research regarding lung cancers that are EGFR mutation-positive.

When she was diagnosed, Elkins turned to the lung cancer community and found that having the support of others going through similar experiences was invaluable.

"Meeting other people who also had lung cancer and meeting people my age or younger gave me a lot of hope; especially when meeting people who had been living large amounts of time with lung cancer," said Elkins.

Elkins knows how difficult it is to learn that you've been diagnosed with lung cancer. She advises those who have been newly diagnosed to avoid researching their disease online and to not focus on statistics since new research and treatment options are continuously improving the lives and life expectancy of those living with lung cancer. Elkins again stressed the need to meet other people who are dealing with lung cancer and reach out to them for support.

"It's wonderful to have support of family, spouses, and friends but it's also really, really important to have people that are going through the same thing as you that you can talk to," said Elkins.

Finally, Elkins said being your own advocate is key. She encourages individuals to seek second opinions if they choose to and to ask questions about their diagnosis and care, especially if there is something they don't understand. Finding a care team that you trust is extremely important.

Nearly five years after her diagnosis, Elkins continues to help those affected by lung cancer and is committed to giving back to the community that helped her through a difficult time.

"I have moved from the shock and devastation of being diagnosed with lung cancer to trying to help other people like myself," said Elkins.
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Title Annotation:Niche/Adv
Publication:Daily Herald (Arlington Heights, IL)
Date:Nov 4, 2018
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