My name is Linnea Duff, and I have advanced lung cancer. Over a period of 6 and 1/2 years, I have had a variety of treatments. On October 1st of 2008, I enrolled in the PF-02341066 trial (crizotinib, Xalkori). I have had a remarkable response to the trial drug, which has stopped the formerly relentless march of my cancer. The fact that I continue to survive has given me the opportunity to be a voice for lung cancer, and I felt a blog would be an excellent medium with which to tell my story.
My purpose in recounting my experiences is two-fold: to offer hope and to provide a window into the life of someone living with terminal lung cancer. And I do mean living. I have lung cancer, but it doesn’t have me. Best, Linnea
How Did I Get Here:
In two words: lung cancer. A little over six years ago, at the age of 45, I received a diagnosis of NSCLC, BAC. Prior to that moment, I thought that the only people who needed to worry about lung cancer were smokers, and I had never smoked. I also knew that survival statistics were worse than almost any other cancer: 84% of those diagnosed with lung cancer died within 5 years. The situation was not completely hopeless, as my cancer was limited to one lung. Surgery, the only accepted cure for lung cancer, was possible.
In late April of 2005 the lower lobe of my left lung was removed. This was followed 7 weeks later with adjuvant chemo (due to the size–5 cm–of my tumor). I received 4 infusions of cisplatin/ taxotere every three weeks. This was an unbelievably difficult experience, emotionally and physically, but I was going for the cure.
However my first post chemo scan in September showed an area of “concern”. The cure would elude me, although for the next two and a half years I retained a sliver of hope that the “schmutz” in my lungs was anything but cancer. Imagine yourself hoping that you have TB, or pulmonary fibrosis, or pneumonia. My cancer was the elephant in our room. However, we did our best to carry on as normal, and in the eyes of most people cancer was behind us.
By January of 2008, my cough returned and I became increasingly short of breath. And then in June of 2008, a biopsy confirmed that the cancer had metastasized and was now in both lungs. I now had stage IV, or terminal, lung cancer. In July, I began a course of Tarceva. It was known that I did not possess the EGFR mutation, which would have indicated that the Tarceva was more likely to be effective. However, there were really few viable treatment options, and Tarceva was one of the least noxious in terms of side effects. After two months a CT scan revealed that the Tarceva was having little effect. In the meantime, another genetic test had been performed on my tumor biopsy. My oncologist told me that it showed that I possessed an ALK mutation. This was significant, because among the courses of action he now proposed was a clinical trial that targeted this mutation. My other options were to continue with the Tarceva, return to a platinum based chemo (which was previously ineffective) or, most ominously, do nothing. The clinical trial was a phase I–which means that they were testing the drugs on humans for the first time and the goal was more to assess a safe dose than to determine clinical efficacy. This was truly uncharted territory, and certainly not risk free. Definitely the old between a rock and a hard place though–if my lung cancer continued its progression, death was certain. The clinical trial offered no guarantee that it would forestall my death, and in fact, might hasten it. It was a long shot, but it was a shot.
For me this was a no-brainer. I made the decision to go for the trial. In subsequent posts, I will go into greater detail about the particulars of this journey. Let me now cut to the chase and tell you that the clinical trial was successful beyond my wildest dreams. The side effects of the trial drug were negligible for me (a rarity in the treatment of lung cancer) and within days after starting treatment, I began to feel so much better. By the time of my first scan at seven weeks, I showed an almost complete response.
My cancer is not cured, but it is being managed. I am not only still alive, but I am alive and well. What follows is a short movie that was made by Pfizer, the sponsor of the PF-02341066 trial, to be shown in house to their research team. It is as good an illustration as any of the positive impact of this drug on my family.
Why a blog? Because of the deadly toll of lung cancer, survivors who can stand up and talk about our experience are few. Survivors with stage IV lung cancer are rarer still. I have been given the gift of more time, and I would like to take this opportunity to educate and to offer insight into our experience. It is also my desire to instill hope in fellow sufferers of this awful disease. Do not give up hope. Progress has been slow, but it is coming. Genetic testing offers a world of possibilities for targeted therapy.
And now an update
Much has changed since I wrote these words. On August 26th, 2011, FDA approval was granted to PF-02341066, crizotinib, or, as it is now known, Xalkori. Hopefully stories such as mine will become much more commonplace.
After almost three years on Xalkori, I have taken my last dose (at least for now). My cancer has acquired an additional mutation which has knocked down the effectiveness of Xalkori, and I have been experiencing a slow but steady progression. On September 7th, 2011, I will have my lead in dose of LDK 378, a second generation ALK inhibitor from Novartis, yet another phase I of clinical trial.
I am hopeful that my ‘terminal’ cancer can continued to be managed; possibly for an extended period of time. I will take all of life I can get, and I think this story is far from over.