When looking for inspiration, Saila Hanninen needs only to glance at her left wrist. Tattooed there is the Finnish word “jaksaa” (pronounced YÄK SAH), roughly translating to “strength.” Jaksaa, however, is about more than just physical strength: It’s about fortitude, endurance, mental toughness, and a willingness to keep going when the odds are against you.
The word has become Hanninen’s personal motto after she was diagnosed with stage IV lung cancer in 2017. It is a daily reminder to always dream big and continue fighting.
“It’s a mantra I use to channel the positive energy and selflessness of those around me,” explains Hanninen. “Cancer may control my schedule, but it won’t dictate my life.”
At her peak
In 2016, Hanninen, then 35, felt she was in the best shape of her life. She had recently completed her ninth marathon and her first full Ironman (a 2.4-mile swim, 112-mile bicycle ride, and 26.2-mile run), a feat she calls a dream come true.
But as she began training for upcoming 2017 races, she started feeling off. It was a series of little things at first: Her training times got slower, she started experiencing pain in her lower back, and she developed a nagging cough she just couldn’t shake. Eventually there were symptoms she couldn’t ignore, such as being out of breath after leaving a voicemail, and Hanninen decided to see a doctor.
Initially, she was told she had a virus and was given an inhaler, but as things got worse, she decided to seek out a specialist. This time, X-rays, blood tests, and a consult with a thoracic oncologist revealed the devastating news: Despite having never smoked, Hanninen had stage IV non-small cell lung cancer.
“It’s tough to describe that moment. I was feeling a mixture of shock, denial, fear, and sadness,” says Hanninen. “I was also really angry in the way the news was delivered to me, and knew I needed to find a true partner in my care.”
The right partner
Hanninen immediately scheduled appointments at various hospitals. While she met many outstanding teams, there was an instant connection with Pasi A. Jänne, MD, PhD, director of the Lowe Center for Thoracic Oncology, the Belfer Center for Applied Cancer Science, and the newly created Chen-Huang Center for EGFR Mutant Lung Cancers at Dana-Farber/Brigham and Women’s Cancer Center.
Hanninen’s cancer was found to have an EGFR (epidermal growth factor receptor) mutation, leading to abnormal cell growth. Jänne himself helped discover this mutation in a subset of lung cancers in 2004. The discovery eventually led to EGFR testing as part of the standard of care for patients with lung cancer.
Those with advanced EGFR mutant lung cancers are typically given a single EGFR inhibitor (designed to specifically target the alteration) instead of chemotherapy as the first line of treatment. While initially effective, eventually the cancer becomes resistant to the therapy, making it more difficult to treat. To combat this, Hanninen was placed on a clinical trial that combined a pair of EGFR inhibitors, given simultaneously.
The treatment worked for over a year, but eventually Hanninen’s cancer progressed. She has since been on multiple therapies including radiation and a second clinical trial. In June, she began receiving chemotherapy infusions and today her cancer is currently stable.
“Treatments for EGFR are constantly evolving, and we’re focusing on how to best inhibit this cancer and deliver good, long-term outcomes,” says Jänne.
Today, Hanninen is using jaksaa as a rallying cry not just for herself, but to inspire others. She’s working to raise $1 million in support of Dana-Farber — particularly Jänne’s research — through her charity, Jaksaa.
Hanninen is also in the middle of planning her wedding with her fiancé, Jay, buying a house, training for future races, and trying to grow her young family. One of her goals is to complete a second triathlon in 2022, five years after her original diagnosis.
“I’m incredibly lucky to be surrounded by positive people, especially Jay, my family, and friends,” says Hanninen. “I may have cancer, but it won’t make life decisions for me. Instead, I set the tone and decide what I’m going to do.”