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 the chemo.
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