James (Rocky) Lagno: Surviving Lung Cancer Thanks to Modern Medicine
Epping, New Hampshire
I have lung cancer caused by a rare genetic mutation. I was so sick the doctors warned me I probably had only about a year to live. But I received a drug that targets my specific mutation, and now I am pretty much back to normal. For me, it’s like a miracle.
My experience with cancer started around Thanksgiving 2010, with a dry, persistent cough that wouldn’t go away. I saw several specialists, but no one mentioned cancer. I am not a smoker; I’ve never smoked. So I guess that’s why the doctors didn’t think of it.
Finally, it got to the point that I had no energy and couldn’t catch my breath. I went to an urgent care facility, and the staff there thought it was pneumonia. Then I started coughing up a little blood. I went back to the urgent care facility, and a doctor there suggested it could be lung cancer. I got the diagnosis in July 2011.
That was a shock. It was very upsetting to my wife and me. We’d been married less than two years, and this was obviously going to have a big impact on our life together.
After I had my first appointment with an oncologist, it turned out that not only did I have primary lung cancer, but I also had primary cancer of my thyroid (which was later removed). The oncologist told me I should probably think about a bucket list but also suggested I should get a second opinion. So I went to a hospital in Boston, where they started me on intravenous chemotherapy and an aggressive course of radiation. I had daily radiation for more than 30 treatments in my chest area, so much radiation that I had burns on my back.
My wife, Geralynn, had done a lot of research and had learned about a clinical trial for patients with the ALK mutation and lung cancer. We wanted to know if I could get into it. The doctors, however, thought the standard-of-care treatment was the way to go. So we stuck with that. But then the scans showed that the tumors were actually getting bigger. I was told I should get my affairs in order because a patient in such a situation has, on average, about 13 months to live.
Geralynn insisted that I have another biopsy and genetic testing to see if I had the ALK mutation and—lo and behold—I did. So I started taking the drug crizotinib, which had recently been approved as a treatment for ALK-positive lung cancer. It worked well for several months in controlling the tumors, but then it was no longer effective. By that point I was so tired I couldn’t walk the dogs. My oncologist suggested I contact Dr. Alice Shaw at Massachusetts General Hospital, who was conducting a clinical trial of another drug targeting ALK, ceritinib.
As part of the protocol, I had an MRI, which showed lesions in my brain. That and the history of thyroid cancer kept me out of the regular clinical trial, but Dr. Shaw obtained ceritinib for me on a compassionate use basis.
The first few weeks were rough because we had to get the dose right and there were some side effects, like nausea and other gastrointestinal issues. But then we got it straightened out, and since the middle of 2013, my condition has been stable. It’s not a complete recovery and I don’t have any expectation of going into remission or becoming cancer-free, but my quality of life is practically back to what I had before the diagnosis. I’m doing great.
It’s a personal choice whether to enter a clinical trial. But let’s face it, chemotherapy and radiation have been around for 40 years. You ought to see the new things that modern medicine can do.
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