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 speci;c
mutation, and now I am pretty much back to normal. For
me, it’s like a miracle.
My experience with cancer started around ;anksgiving
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 sta; there thought it was pneumonia. ;en 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.
;at 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.
A;er I had my ;rst 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). ;e 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. ;e 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 a;airs 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
e;ective. 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. ;at 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.
;e ;rst few weeks were rough because we had to get
the dose right and there were some side e;ects, 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.
SURVIVING LUNG CANCER THANKS TO