Patient story: Michelle’s journey with non-small cell lung cancer

I was 45 years old when I was diagnosed with Stage IV non-small cell lung cancer. My cancer experience started with what I now know is a classic symptom: a cough that would not go away.

For me, it began in September 2017. While awaiting insurance paperwork to go through, I spent four months trying every over-the-counter solution I could find. Nothing worked. It was miserable, yet I never imagined it was something serious. Could it be an infection, I wondered, like bronchitis? My doctor had the same thought and prescribed me antibiotics.

Weeks passed with no change. After multiple appointments with no resolution, my doctor finally ordered an X-ray, reassuring me that there was nothing to worry about.  I agreed with her—at that time, the X-ray felt unnecessary.

It turns out it was not. We found a large mass on one of my lungs, and my doctor immediately ordered a biopsy and more scans, revealing the extent of my cancer. As a relatively healthy person, it was a surprise. My oncologist said it best: “You look a lot better on the outside than you do on the inside.”

I didn’t have much time to process the shock of the diagnosis before jumping into treatment. Within a week, I was in chemotherapy. Fairly soon after starting chemotherapy, we learned via biomarker testing that I had the anaplastic lymphoma kinase (ALK) positive mutation, a relatively rare mutation found in 1 in 20 people with lung cancer. The upshot was that I wouldn’t have to continue with chemotherapy—I could take an ALK-inhibitors in pill form. My gene mutation enabled me to get this more advanced therapy, but I know there are a lot of people who won’t have access to this, unfortunately.

Although the ALK-inhibitor has been better than chemotherapy, it hasn’t been all smooth sailing. Within a few months, I developed jaundice so severe that my eyes turned yellow. With my kidney and liver health at risk, we decided to stop the medication. I then had to wait a full 30 days for it to clear my system. The time in between medications was challenging: the cough returned, and I struggled to walk and breathe.

The next medication worked much better. After some dosage adjustments—and many trips to the lab for blood work—I was able to stay on the same medication for over five years. Some recent brain fog and forgetfulness prompted me to switch medications again. After some initial side effects, the new medication seems to be working and I am stable. I still need lab work once a month. To get there, I need to borrow a car or use a rideshare service.

Today, much of my focus is on maintaining my health. Exercise is an important part of that, and I am part of a weekly walking group. A lot of the time, I have to push myself out the door, but I’ve learned over the years that cancer brings extra ailments and pains, and exercise helps keep these at bay.

Another important part of my health is leaning on support systems, both online and in-person. I’ve found the strongest support from others who are also living with lung cancer. For example, last year I attended a cancer retreat I found via Facebook, which gave me an opportunity to connect with others about what survivorship looks like to each of us. From that retreat, I was able to meet some new friends, many of whom live nearby. We all meet up regularly, which has been great. I’ve been a cancer patient for nearly a decade now, and I’ve encountered so many loving and caring people along the way.

What does the future hold? It’s hard to say. What I do know is I’m content with where I am right now on my cancer journey: My health is stable, and my prescriptions are doing their job, and I like my doctors. I’m grateful that I have access to ALK-inhibitors and have had success with  them, but understand that this is not the case for everyone.

 

In our experience