"Outliers" and Hope

One of the cancer survivor blogs I came across shortly after my diagnosis was Linnea Olson's Outliving Lung Cancer. I found it by googling, as I often do, "surviving stage IV lung cancer." I had seen all the terrible prognosis data, and by that point had resigned myself to believing I had maybe about 18 months, at best, left on earth and that the remaining days weren't going to be pretty. Then I found Linnea's blog. She'd been diagnosed with lung cancer in 2005 and was still kicking around the planet a dozen years later! And so much had happened in her very full life during those years -- raising kids, getting a divorce, moving into an artists' community. I clicked through her posts the way a choco-coffeeholic pops chocolate-covered espresso beans. How could this be? How could someone with Stage IV lung cancer be alive so many years after diagnosis? What magic was at work here?

As it turned out, it wasn't magic, exactly, but science. Doctors had been able to identify a genetic driver for Linnea's cancer, the ALK gene rearrangement. That was in the early days of targeted therapies, and after surgery and some failed therapy, Linnea became Patient #4 in a Phase I study of crizotinib. The new experimental drug (the one I am currently on, which is now considered standard of care) kept her cancer in check for several years. Since then, she's moved on to some chemo and other targeted therapies. Just as she was becoming resistant to one therapy, another became available. In other words, Linnea is living proof that we are truly each day on the cusp of possibility in cancer treatment.

My despondency began to lift. I started to believe that a lung cancer diagnosis did not have to be an immediate death sentence.

Now Linnea is a 13-year survivor, an "outlier" by late-stage lung cancer standards. She wrote recently about forgetting to observe her cancerversary, and what a great feeling it was to realize the day had passed like any other normal day: Thirteen Boffo Years and Counting. And here's a link to a great article about the state of research, Targeting Cancer, featuring Linnea.

We are repeatedly told that "each patient's cancer is different" and that our responses to treatment will vary due to all sorts of factors. For some of us, nothing will work. For others, something works, but not that well, or only for a little while. Others get a good long ride on one treatment before having to pursue another. Some people get cured. In Linnea's case, she's journeyed through quite a few different treatments now, including different TKI's (tyrosine kinase inhibitors like crizotinib). I for one am grateful she is telling her story of persistence, hope, and courage.

Next time someone asks me what I want to be when I grow up, I'm going to say "an outlier."