“I set an example that you can push back and you will still get care,” she explains. ““Your life is not as important to anyone as it is to you, and you really have to stand up for yourself.”
Linnea had surgery to remove the tumor and lower lobe of her left lung, and started a course of chemotherapy. But her first scan after surgery and completing chemo revealed a new nodule.
In 2008, Linnea became very sick again and was given three to eight months to live. After undergoing genetic testing that showed she was ALK positive, she was given the option of going on a cutting edge Phase 1 clinical trial. She became the fourth person in the world to take part in a study of Crizotinib.
“From the moment I was diagnosed, I set my sights on being an outlier,” she says. “And 12 years later, damned if I’m not an outlier and a survivor.”
Since then she has taken part in three Phase 1 clinical trials.
Despite never having more than a 70% reduction in disease, she has learned to live with the disease as a manageable, chronic condition. Instead of NED (No Evidence of Disease), Linnea says she’s NDY (Not Dead Yet). Her experience has made her a patient advocate and a lung cancer activist.
Want more? Linnea on dating with lung cancer.
“You have to be your own best advocate,” she says. “I say very forcefully now that I am an expert on my own experience.”