I was diagnosed with cancer in May
2013, just days after my son had turned
6. I had woken up a few days earlier and
felt a grape-sized lump in my armpit.
Immediately I had thought of breast
cancer—my mom had beaten breast
cancer several decades earlier and
because of that I had been in a breast
cancer–surveillance program at The
James†. But after several mammograms,
ultrasounds, and a biopsy, the nurse
practitioner called and told me it wasn’t
breast cancer, it was neuroendocrine
carcinoma of unknown primary.
I took the call while sitting at a red
light on my way to pick up my son from
preschool. It took everything I had for
me not to fall apart. After getting my
son, I went to see my doctor, who is also
a close friend, as his office was close by.
The nurse took my son to another room,
and then I broke down.
My friend had told me, “Carrie this
is not good, this is a hardcore, mean
cancer.” So, when I saw the oncologist
at The James who specialized in
neuroendocrine carcinomas I already
knew the seriousness of the situation.
She told me that the lump in my armpit
was a lymph node that was enlarged
because the neuroendocrine carcinoma
had spread there but she did not know
where the original cancer was. She also
told me that my chances of survival were
less than 15 percent.
After seven cycles of platinum-based
chemotherapy, I was cancer free. But just
3 to 4 months later, a scan showed cancer
in a lymph node near my kidney. I was
treated with everolimus (Afinitor) for
8 weeks, but the cancer spread through
the lymph nodes in my pelvis. The
chemotherapies I received through a
clinical trial also failed to stop the cancer
spreading. I knew the situation was dire.
Fortunately, the oncologist running
the clinical trial I had been on did a
molecular test on a sample of my cancer,
and he told me he was 96 percent sure
that the primary cancer was Merkel cell
Ever since my diagnosis, I had been
educating myself about the latest in
cancer research and clinical trials,
but this was the piece of information
I vitally needed to narrow down my
online research. I had already been
emailing and speaking to researchers
around the world, but this diagnosis
made me particularly interested in the
idea of immunotherapy.
Just when I hit rock bottom, a response
to one of my emails connected me to Dr.
Howard Kaufman at the Cancer Institute
of New Jersey in New Brunswick, who
had just opened a clinical trial, testing
avelumab as a treatment for Merkel cell
carcinoma. Before I could enroll in the
trial, they had to test my cancer to be
100 percent sure that it was Merkel cell
carcinoma. I was overwhelmed when
I found out all three molecular tests
confirmed that it was.
I received my first infusion of avelumab
in July 2014. After just three infusions,
two weeks apart, I had my first scans.
The nurse practitioner handed me the
report as she prepared me for my fourth
infusion. I had to read it over and over;
it said that all my tumors had resolved.
After what seemed like forever, Dr.
Kaufman came over and confirmed what
I had read; I was cancer free. It was one of
the most powerful moments in my life.
There has been no sign of cancer since
then, and in May 2015, Dr. Kaufman
decided I do not need to take avelumab
Having stage IV cancer and coming so
close to death has changed me, which has
been hard for my friends and family. But
in a lot of ways the changes are for the
better. I spend every day thankful to be
here. I am also grateful for the researchers
who made this possible and I’m hopeful
that the work they are doing will allow
other people like me, mothers, fathers,
sisters, brothers, husbands, wives, to have
the same outcome that I have.
† The Ohio State University Comprehensive Cancer
Center – Arthur G. James Cancer Hospital and
Richard J. Solove Research Institute
AMERICAN ASSOCIATION FOR CANCER RESEARCH 87
" After just three treatments, the cancer was gone,
and today I’m doing great. "
© AACR/Scott Winters