Amy McMillin: Diagnosed With Stage IV NSCLC in 2019

In April of 2019, I sat in the doctor's office holding on for dear life to my husband while two doctors explained that I had non-small cell lung cancer (Originally stage IIIB, but advanced to Stage IV). They had found a tumor in my lower left lobe along with six lymph nodes in my upper right chest. I still to this day don’t remember exactly what all was said in that room because all I could think was “How could I possibly have cancer?”

We immediately got in to see an amazing oncologist at The University of Texas Southwestern Medical Center (UTSW) in Dallas. This doctor took initiative to run my genetic tests while also starting my chemo and radiation.

After chemo and radiation didn’t show much improvement, it was advised that I should start Immunotherapy. After three round in November 2019, I was admitted to the hospital with pneumonitis. The doctors also found that I had cancerous fluid around my heart and lung, putting me up to Stage IV. During this time, the genetics tests showed RET-positive. UTSW did not have any clinical trials at that time, so I was sent to Dr. Vivek Subbiah at MD Anderson in Houston.

In December 2019, I traveled to Houston to have my scans, tests, and initial meeting with Dr. Subbiah. It was such a relief to speak to him and listen to his expertise and confidence in the LOXO-292 clinical trial (later named Retevmo after FDA approval in 2020). I didn’t hesitate to sign up. In January 2020, I started with the trial and still remain on Retevmo. There was initial shrinkage in my tumor and lymph nodes, but fortunately I have remained stable over four years later and counting. There are side effects that I have to manage, but, overall, Retevmo has allowed me to live a normal and full life.

There were only two drugs for the RET mutation when I was initially diagnosed. Now, there are multiple trials going with more coming down the line to give others and myself additional treatment options. I am so thankful that Retevmo and RET research have given me over four years and so much hope for the future.