Since I was diagnosed with metastatic lung cancer in 2011, I have received numerous treatments, most by participating in clinical trials. A lot
of these treatments have caused me to lose my
voice, which was devastating to me because I am
a professional singer. Within 2 months of starting
a clinical trial testing a drug called osimertinib
(Tagrisso), I had my voice back, along with my
breath. Although my lung cancer progressed after
2 years of receiving osimertinib, my experience
with the drug was so awesome that I always said
if my lung cancer progressed again, I would look
to enroll in a clinical trial testing osimertinib in
combination with other treatments. Today I am
at that point. I am enrolling in a clinical trial of
osimertinib plus another treatment. I am thrilled.
My journey with lung cancer started 5 ½ years
ago, when I was just 49. I went to the doctor due to
a persistent cold and cough that had not gone away
despite several courses of antibiotics. The doctor
ordered a chest X-ray, and after taking one look
at the film she said, “It looks like it is metastatic
lung cancer and there’s just so much of it,” then
left me alone in the exam room.
All I could think about was: What would happen
to my 8-year-old daughter? I was a single mom
and everything I had heard about lung cancer
pointed to death.
My fears were compounded when, after a biopsy
showed that I had non–small cell lung cancer,
the doctor told me I had maybe 2 years left to
live at the most.
I wanted more. So I sought a second opinion
at a research hospital, Rush University Medical
Center, in Chicago. The doctors there would not
give me a timeline saying that there were lots of
new drugs in development, and they could not
give me an accurate prognosis.
That made me confident in the treatment plan
that they outlined, and I started chemotherapy
almost immediately. It didn’t work, however, and
the lung cancer continued to progress.
The doctors started me on erlotinib (Tarceva),
which is an EGFR inhibitor, even though my
diagnostic biopsy had not been tested for EFGR
mutations. They had a hunch that it might work
because I was so young, and EGFR mutations
are more common among younger people. It did
work. In fact, I had almost a complete response.
Unfortunately, it didn’t last, and the cancer
progressed again. This time they did a biopsy
and tested it for a specific EGFR mutation, the
EGFR T790M mutation, which is a frequent cause
of resistance to EGFR inhibitors in lung cancer.
My doctor helped me find an early-stage
clinical trial of a drug called CO-1686, which was
designed to inhibit the EGFR T790M mutation.
It didn’t work for me, so I had to start a really
strong chemotherapy combination, carboplatin-taxol. It was extremely tough. It made me so sick.
I still have neuropathy in my feet as a result of
After my lung cancer progressed again, I went
back to erlotinib. This kept my lung cancer at bay
for 6 months, at which point I was able to get
the last spot in Denver in a clinical trial testing
osimertinib, another drug designed to inhibit the
EGFR T790M mutation.
The 2 years I spent taking osimertinib were so
different from the rest of my time being treated
for lung cancer. I felt healthier than I had in a long
time. There were almost no side effects, my voice
came back, I could sing again, I could exercise,
and I took my daughter to Paris where we did bike
tours and walked everywhere. It was awesome.
In early 2016, I had to switch to another clinical
trial because my lung cancer progressed again.
This trial was testing an antibody-drug conjugate.
The drug gave me fewer side effects than regular
chemotherapy, but my quality of life was not as
good as it was when I was taking osimertinib.
However, my time in this trial has come to an
end and I am so very happy to be returning to
an osimertinib trial.
Thank God for clinical trials. I am alive 5 ½ years
after my diagnosis with metastatic lung cancer.
Statistics said I should have been gone years ago,
but I’m not. I’m still here. I’m with my daughter,
and that is what matters.
IS THE LEADING
DEATH IN THE
GINGER TAM // AGE 54 // NORTHFIELD