When I was diagnosed with metastatic melanoma, there
were very few treatments to choose from, and a;er
standard treatment failed to control my disease, I took
part in two clinical trials. I wasn’t able to ;nish either
trial, but the medication I received through the second
one, an anti–PD- 1 immunotherapy, worked anyway and
my tumors are gone. I’ve been stable for two years. ;e
experimental immunotherapies changed my life and
allowed me to look further down the road. A;er I was
diagnosed, I just hoped I’d see my youngest daughter go to
kindergarten. Now maybe I can see her get married.
It began in 2008, when my nasal passages were blocked.
;e ENT [ear, nose, and throat] doctor looked and said,
“You’ve got a golf ball up there.” He did a biopsy and called
a week later with a diagnosis of mucosal melanoma.
I’d never heard of it, but I soon learned that it’s very rare,
accounting for only about 1 percent of melanoma cases.
Unfortunately, the prognosis is usually not good. ;e
treatment was to remove the tumor and then treat the area
with radiation, ;ve days a week for 10 weeks.
A year later, a tumor showed up in my lung, and the doctors
removed it. I remember sitting with my wife, saying, “All
right, this is not that bad— I can manage it if every couple
of years I have to go under the knife.” Unfortunately, the
situation did not stay that way. ;e cancer spread to my
spine and midsection, and scans showed that I had cancer
in 15–20 sites.
My oncologist did everything he could, but ;nally he said,
“;ere is no more conventional medicine that can help
you. We should consider clinical trials.” For me, it was an
easy choice because there wasn’t anything else to do.
In February 2011, I started in a trial for ipilimumab, which
allows the T cells in your body to attack your cancer. A;er
several infusions of the drug, scans showed that my tumors
had shrunk by 20 percent. ;at was the ;rst good news we
had since 2008. During my time in the trial, the FDA [U.S.
Food and Drug Administration] approved the drug and it
was marketed as Yervoy, so my last couple of doses were
not through the trial. Ipilimumab worked well for a while,
but then the tumors grew again and the doctors took me
o; the drug ahead of schedule.
My doctor told me that new drugs called anti–PD- 1
immunotherapies were coming out. PD stands for
“programmed death,” which isn’t a great name, but the
drugs that target it basically restore the natural ability of
the immune system to go a;er cancer cells.
I was turned down for one trial but was accepted into
another sponsored by Merck, with an anti–PD- 1 drug
then called MK-3475. I started on March 1, 2012. It was
an all-day infusion every three weeks. But a;er only ;ve
infusions, the doctors thought I was going into renal
failure. So they put me in the hospital for three days and
took me o; the drug. ;at was a tough time.
;e doctors then did an ultrasound of my kidneys. My
doctor called me to say they couldn’t ;gure out what was
going on with my kidneys, but the ultrasound showed
some of the tumors, and they were all shrinking. A few
weeks later, I had a full set of scans, and the tumors had
shrunk by 50 percent. A few months a;er that, all they
could see was shadowing, which means that something
was there once but it really isn’t there anymore. It has
stayed that way, nothing there, a;er only ;ve infusions.
;e reality is that without cancer research, I wouldn’t be
here. I want to help the next person and keep the cause
going, so I give speeches to support more funding for
research. My wife and I also participate in triathlons to
raise money for research: I swim for money. Our team,
Tri-ing for a Cure, has raised over $100,000.
68 AACR Cancer Progress Report 2014
BEATING STAGE IV MUCOSAL MELANOMA
THANKS TO IMMUNOTHERAPY