Janet’s advance lung cancer was so aggressive, she was told she would most likely have to “be on chemo for the rest of [her] life, which would likely be short.” Janet started to explore other treatment options and found an alterative treatment through her fellow patient network. Today, she continues to share her survival story to inspire other patients.
Janet’s story demonstrates the Patient Voice Principles of Empowerment and Access to Information. It also points to the benefits of genomic testing (finding out what your unique genes are) and precision medicine (treatment based on your unique genes).
Janet’s story:
I am a metastatic lung cancer patient. Lung cancer is the most deadly cancer, killing more people every year than the other top three cancer killers combined. Yet, thanks to precision medicine, research, and other patients, I am a four-year survivor who is living with lung cancer as a chronic illness.
I was diagnosed with advanced lung cancer in May 2011. I had chemo and radiation, and my tumors shrank, but a new tumor quickly appeared. I had different chemo drugs followed by more radiation. The known tumors were gone or dead, but two new tumors appeared.
I was now a metastatic lung cancer patient. Whenever I stopped treatment, I grew a new tumor in less than 2 months. My oncologist told me I would be on chemo for the rest of my life, which would likely be short.
When I was first diagnosed, my doctor had ordered two molecular tests on my biopsied tumor tissue. He was testing for acquired mutations in two genes, EGFR and ALK, because cancer drugs were available that targeted those genomic mutations in lung cancer. Unfortunately, both tests were negative–my tumor tissue had no mutations in those two genes.
From online patients, I learned a clinical trial was testing for more mutations in 10 different genes. I arranged to get my tissue tested at University of Colorado, but again all tests were negative.
However, another patient told me of a recently discovered gene alteration for which I had not been tested. The gene was called ROS1. I told my community oncologist about it, but he hadn’t heard of it and didn’t know how to test for it. I contacted the University of Colorado again, and learned they had just developed a ROS1 test, and they also still had some of my tumor tissue left. I gave them permission to test my tissue. Lucky for me, the test result was positive!
I flew from Seattle to Denver to enroll in a clinical trial for a drug that targets ROS1. The pill I take twice daily has far fewer side effects than chemo. After the first eight weeks on the drug, scans showed all my tumors were gone. I’ve had No Evidence of Disease for 34 months and counting. I have my life back. I am not cured, but I am living well with metastatic lung cancer. Not bad, given my disease typically kills over half of patients in the first year after diagnosis.
I will keep taking this drug for as long as it keeps working for me. And I have hope that when my cancer grows again, new tests based on recent medical discoveries will be available to identify a new precision medicine treatment for me.
I share my story in writing and public speaking in hopes of improving outcomes and quality of life for lung cancer patients. Cancer patients, as well as their caregivers and healthcare providers, need to learn about genomic testing and precision medicine. It might buy time and a better quality of life for a cancer patient you love.
