I’m Alive Because of Recent Breakthroughs in Lung Cancer Research

When I found out that I had EGFR positive lung cancer, I cried tears of joy. This discovery took place less than two weeks after my initial diagnosis with stage IV lung cancer. It’s amazing how my perspective changed so quickly in such a short period of time. I went from crying hysterically because I was devastated and shocked by my diagnosis, to feeling hopeful and a little bit like I won the lottery because of this EGFR mutation.

Exploring my treatment options

I received my initial diagnosis of stage IV lung cancer from an orthopedic oncologist who did not know much about lung cancer treatments. Since it was December 26, 2013, there was no one available from thoracic oncology in my major medical center to speak with me. I didn’t know what my treatment would involve, but I assumed traditional intravenous chemotherapy, with accompanying hair loss, nausea, etc. The time between Christmas and New Year’s Eve is definitely not the best time to get a life shattering diagnosis and try to get answers and treatment quickly!

Through a friend of a friend, I managed to get an appointment with an excellent thoracic oncologist in the very same major medical center for early January. I soon got a surprise call from my new oncologist’s nurse. Unknown to me, the bone biopsy that the orthopedic oncologist used to diagnose cancer had been sent for molecular testing and the nurse had found in the medical center’s shared record system that I had an EGFR mutation!

New options change the treatment landscape

I then found out that I was eligible for targeted therapy treatment that would inhibit my EGFR mutation directly and hopefully shrink my cancer. Prior to my first appointment with my thoracic oncologist, her nurse got me pre-authorized through my insurance company for a newly FDA approved oral medication called Gilotrif (afatinib). Gilotrif was approved on July 12, 2013 — less than 6 months before my diagnosis. My treatment expectations totally changed; I would now be taking a pill once a day with low likelihood of hair loss and nausea. This was much different (and better) than I expected!

When I actually met my new thoracic oncologist in person, I had further tests and discovered that in addition to cancer in my lungs and metastasis to my elbow, I also had some other concerning areas of cancer metastasis, namely 8 small lesions in my brain and a lesion in my neck that was in danger of causing my cervical spine to collapse.

Working collaboratively with my medical team

In one very long day at the medical center, I visited a neurosurgeon and a radiation oncologist to discuss whether neck surgery and brain radiation might be needed prior to starting my targeted therapy pill. After consulting with my oncologist, the medical team came to a consensus that if I would be willing to wear a neck brace, I could start on the Gilotrif. Hopefully, In addition to shrinking the main tumor in my lungs, it would also work on my neck and my brain.

Well, it did — amazingly well. In my first three months of treatment, all of my brain mets disappeared and bone grew back both in my neck and my elbow. I avoided both neck surgery and brain radiation. The neurosurgeon said I could stop wearing the neck brace and confessed that he was really surprised that I had such a significant improvement. My lung tumor shrunk initially and then remained stable...for one month shy of 3 years.

Adjusting treatment plans over time

On March 30, 2017, a new oral targeted therapy called Tagrisso (osimertinib) was FDA approved for people with EGFR positive lung cancer who progressed and developed a T790M secondary mutation after initial targeted therapy treatment. Again, this was just in time for me since I developed that T790M mutation in mid to late 2017. I started on Tagrisso in November 2017 and am currently still taking it and feeling great.

If I had been diagnosed just 5 years ago, my treatment path would have been completely different and there’s an extremely good chance I would not be here writing this. Lung cancer is the leading cause of cancer deaths in the United States, but receives less government funding for research than other cancers. More funding means more research, which directly leads to more treatments and improved survival for patients such as myself. WE NEED THIS!

Editor’s Note: We are extremely saddened to say that on June 23, 2024, Ivy Elkins passed away. Ivy’s advocacy efforts and writing continue to reach many. She will be deeply missed.