From Shock to Advocacy: Living With Stage IV Lung Cancer

The way my lung cancer story starts is not unique. After a couple of months of some odd symptoms - a cough, constipation, and shortness of breath if I squatted - I had a CT scan, and it revealed a worrisome mass in my upper left lobe plus a pleural effusion. I had a thoracentesis on that frightening day, and entered the gray zone of waiting to find out what was wrong with me. No one was saying anything specific, but faces and voices were grim, and it was clear that I probably had some form of cancer. A week and a half later, in June 2014, my family doctor told me I had adenocarcinoma of the lung, and a week after that I entered a cancer center for the first time and found out I was stage IV.

With the bad comes the good

While this diagnosis is a horrible stroke of bad luck, it has been tempered by instance after instance of good luck in the nearly three years I have lived with stage IV lung cancer. My good luck started with referral to a very good local oncologist, who steered my treatment in the right direction from day one. She put the wheels in motion for biopsy of my cancer and gave me information about genomic mutations and possible treatment paths. A wonderful thoracic surgeon did the biopsy, and told me he I believed I had a targetable mutation. Sure enough, the lab reported that I have an EGFR exon 19 deletion mutation. I was able to go on targeted therapy, and it looks like I will be able to get three years of survival out of those miraculous pills.

Treatment decisions

In April 2015, when I showed resistance to my first line of treatment, erlotinib, I enrolled in a phase II clinical trial. The drug, rociletinib, is no longer being developed, but it gave me 8 months of life. I went to Roswell Park Cancer Institute for this trial, and I have gone there ever since.

I am currently on osimertinib, the best drug yet. After 13 months, my cancer is starting to show signs of waking up. I am continuing on osimertinib for 3 more months. My doctor at Roswell and I have a plan for next steps. The most likely next line of treatment is standard chemotherapy, but I will have another biopsy and send the sample for comprehensive genomic testing to see if there is another mutation that can be targeted. I am also keeping close tabs on phase 1 clinical trials, looking for one at Roswell or in Boston that could be a good fit for my situation.

Lessons from my MS

Stage IV lung cancer is not my first experience of serious chronic illness. Twenty years ago I was diagnosed with multiple sclerosis. Treatment put me into remission, and I learned resilience and living in the moment. Lung cancer is more serious than the type of MS I have, however. I’ve spent time coming to terms with my mortality and rededicated myself to living in the now.

Finding my tribe of advocates

I have also become a lung cancer advocate. The tribe of lung cancer advocates is a great group of people, ready to share information and fellowship, and choosing to become an advocate has greatly enriched my life with new friendships. I work with the American Lung Association LUNG FORCE initiative, raising money for research and speaking in public about the patient experience. I am a mentor to other patients who are on the same treatment path, and am active in a few online patient-to-patient support communities. Going to conferences is a great way to deepen knowledge and relationships, and I’ve been to the HOPE Summit and to the Targeted Therapies in Lung Cancer Patient Forum sponsored by GRACE. I also spoke at an FDA Oncologic Drug Advisory Committee hearing about my experience as a patient during the phase II rociletinib trial.

I think that this is the most rewarding work I have ever done. I look forward to contributing to this excellent website, and learning from everyone else who contributes informative and thoughtful pieces. Together we build resources to make the path easier for those who follow, and help each other find the best way forward for our individual situations.