We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases will share their unique stories; the third in our series comes from cancer patient/blogger Linnea Duff.
On April 5th, I quietly noted the seventh anniversary of the day my world turned upside down. For two years a persistent cough and shortness of breath had been attributed to adult onset asthma. It was only when I developed pneumonia that a chest CT scan was ordered, revealing a 5-cm mass on my left lung. A biopsy confirmed the unthinkable; I had an uncommon variety of non small cell lung cancer.
I was 45 years old and had never smoked. The only thing I knew about my diagnosis was that the overall five-year survival rate for lung cancer was only 15 percent. Determined to beat those odds, we transferred my care to Massachusetts General Hospital, where we hoped I’d have access to the most current research in the treatment of lung cancer.
Despite removal of the entire lower lobe of my left lung as well as adjuvant chemotherapy, my cancer recurred almost immediately. Three years after the initial diagnosis my health began to decline rapidly. Another therapy proved useless and my cancer was now deemed terminal. The situation seemed hopeless when a new biopsy revealed that I was positive for a mutation of the ALK gene. Given the chance to enroll in a phase I clinical trial for an experimental therapy that targeted the newly identified ALK mutation, I jumped at the chance.
And then an amazing thing happened. While I had hoped the experimental drug (crizotinib) would extend my life for several months, I ultimately spent almost three years on the trial. Six months ago, I entered my second phase I clinical trial for yet another ALK inhibitor (LDK 378).
Clinical trials, which remain under-referred as well as underutilized (enrollment of cancer patients hovers around 5 percent), have become my personal lifeline. I no longer view clinical trials as a last resort, but rather as my next good chance.
I am fortunate to have been able to participate in these trials at the same hospital where I receive my care, but I know patients who travel great distances to gain access to experimental therapies. These patients generally share my perspective; we are aware of the risks and understand that not every clinical trial will be effective in treating our individual cancers. And yet, we embrace the opportunity to enroll. Perhaps our quality of life will be enhanced and our lives extended.
No matter the outcome, we’ve been given the opportunity for not just another avenue of treatment, but to do something meaningful. By participating in a clinical trial, we are paving the way for other patients; the experimental therapies of today may become the gold standards of tomorrow.
Linnea Duff, of Amherst, NH, is a married mother of three who has been battling NSCLC (stage IV) for over seven years. She blogs at life and breath: outliving lung cancer.