I have been living with stage IV lung cancer since June 2014. No one wishes such a diagnosis for themselves or anyone else. I am relatively lucky for all the following reasons: my cancer has a targetable mutation (EGFR); I was diagnosed before the disease spread to my bones or brain; I was able to retire from work; my kids are all grown up; I can go to a major cancer research hospital; and I have excellent health insurance. Right now, I feel great with few symptoms.
I’ve had three lines of treatment so far: erlotinib, a phase 2 trial of rociletinib, and now osimertinib (my cancer has developed the T790M resistance mutation). I’ve lasted eight to ten months on each drug. I would definitely sign up for another clinical trial if the right one was available and suitable for my specific diagnosis and treatment.
A highlight of my experience so far was the opportunity to speak to the FDA Oncologic Drug Advisory Committee when they held a hearing on rociletinib in April 2016. I spoke about my experience with rociletinib as a patient. It was fascinating to see how carefully drugs are reviewed before they are approved, and rewarding to be part of the process.
My focus now is on advocacy through writing and some fundraising work. I keep up with recent research developments, and I stay mindful and cheerful in my day to day life. I keep loving my family and friends, and finding joy in the ineffable beauty of our world and life itself.