I was asked to write an article about my cancer riot. It was to be shared with fellow patients on a cancer forum. Here is what I wrote:
In September 2013, I was a 47-year-old engineer-turned-programmer,
wife, and homeschooling mom. My life was full and happy. I had no concern about
cancer, so when I heard the doctor say, “I think you have cancer,” I could
hardly believe that he was talking to me.
Just two short days later, I woke up from surgery with a sharp
pain in my abdomen that brought the reality of my diagnosis screaming into focus.
Eight inches of cancer-containing colon was cut out, along with a tumor-laden
artery, part of my bladder, and twenty-one lymph nodes (pathology would later
find seventeen of them to be cancerous). Though I hurt, I was thankful that 1) I
woke up at all, and 2) the tumor was gone. I thought that the surgeon’s scalpel
had brought my cancer history to an end that very day. Silly me.
FOLFOX chemotherapy was next as soon as I recovered from surgery, “Just
to be sure,” they said, “that it’s all gone.” Slowly, sickeningly, I slogged my way through
six months of nauseating treatments, bone-crushingly painful supportive
measures, and countless needle punctures. Though I grew sicker and wearier as
the weeks progressed, after each treatment I told myself that I was one step
closer to restored health. I would endure whatever it took to be able to continue
raising my family with my husband.
One year after diagnosis my oncologist ordered routine scans to determine
whether the treatments had been successful. Though a few small nodules in my
lungs were noted, the PET scan was inconclusive. So, I underwent a needle
biopsy. It was also inconclusive. Next, I had a lung wedge procedure which finally,
sadly, proved unequivocally that colon cancer had metastasized to my lungs. My
case was considered terminal.
FOLFIRI was offered as the next step, but I declined. I told my
doctor that I wanted to look into clinical trials before doing any more
chemotherapy. I had read about a patient who underwent immunotherapy at the NIH
in 2014, and I was curious to know whether it would work for me.
Two days later, on my 49th birthday, I was on the phone
with a research nurse at the NIH asking about Dr. Rosenberg’s TIL trial. I filled
out paperwork and requested medical records and scans to be sent to the NIH.
Exercising due diligence, I visited one of my state’s university
oncology research clinics to find out what trials were offered there. Shockingly,
not only did the clinic director inform me that he had no trials for which I
qualified, he went further to actually discourage me from applying for a trial at
the NIH! It seemed that bedside manner, if he ever had any, was not to be
wasted on a terminal patient. At least, not this one.
Though my request to be screened for the TIL trial was twice denied,
in February of 2015 they accepted me. On April 1, I underwent tumor harvest
surgery at the NIH. The goal was for the surgeon to extract a large enough
sample of tumor tissue to obtain a sufficient number of tumor-infiltrating lymphocytes
(TIL) from it. I was sent home to recover while the scientists began to work on
my cells. Weeks crawled by as I waited for word about whether or not a
treatment could be developed from my cells.
In mid-June I got the long-awaited call. The immunotherapy fellow
said they did indeed find enough cells, and they were excited to discover that
some of the cells targeted a driver mutation. I had no idea what these words
meant, but it sounded like extra-good news.
Back to the NIH I went. I underwent grueling “conditioning chemo”
for seven days to quiet my immune system. Then, exactly three months after the
lung harvest surgery, on July 1, 2015, 148 billion of my own mutation-targeting
cells were infused into my body. Immediately after that, I was given the first
of what would be five doses of IL-2. Two weeks later, my immune system
recovered enough so that I could return home. My total stay was twenty-four
days.
Each follow-up in the weeks to come showed more and more shrinkage
to seven lung tumors. However, by nine months post-treatment it was clear that
one of the seven tumors had changed. It was growing again.
Several options were discussed, but ultimately the decision was
made to surgically remove the recalcitrant tumor. Due to its threatening location,
the doctor opted to perform a lobectomy rather than attempt to remove just the
tumor.
On April 7, 2016, I became the first person to undergo surgery
post-TIL therapy. Remarkably, the scientists’ study of the tumors they examined
post-surgery uncovered one of the mechanisms that is used by cancer cells to
evade the immune system. Those results were published in the New England
Journal of Medicine eight months later.
From the day of that surgery, I was declared NED—no evaluable
disease. I maintain that status today. Trial NCT01174121 worked to eliminate
six tumors from my lungs using my own cells, and the team at NIH saw me through
to NED by performing surgery to eradicate the final one. I could not be more
grateful!