Wait, Can you say That Again?

As you can imagine, the Stage IV lung cancer diagnosis was shocking. How does a 42-year-old healthy, fit, non-smoker end up here?

Many physicians that saw me in the hospital would have similar questions; shortness of breath, chronic cough, coughing up blood, unintentional weight loss, or chest pain. The answer was always the same, no. I am the healthiest I have been in my adult life. I had spent an entire decade (2010-2020) having children, I had finally gotten my weight under control, I was exercising consistently (hello, I ride a Peloton), and I was at a place in my life where my spiritual and physical strength were moving in a positive direction. Many instances occurred during those first five days in the hospital where we can see how tenderly God was guiding us. One of those blessings was the medical team initially treating me at UTSW. 

From the moment I presented, they not only acutely treated my symptoms, but they recognized that I was “presenting” uniquely. Yes, they saw the brain tumors, which led them to discover the cancer in my lung. Even without confirmation, they discussed and explained this other type of lung cancer; it was one of their “differentials” (my medical peeps will appreciate that.) The significance of this is that there was no wasted time. 

When my lung was biopsied in the OR, tissue and blood were collected and sent for comprehensive biomarker testing, Next-Generation Sequencing, NGS. I will not attempt to explain what all NGS encompasses; at its basic level, NGS allows the sequencing of genomes or DNA to detect specific mutations, allowing for a detailed disease diagnosis, prognosis therapeutic decision, and follow-up for patients like me. The results of this test allowed for my particular diagnosis of EGFR T790 mutation.

Still, trying to figure it out?

For the record, out of all the science classes I have taken, cell biology is only one step up from chemistry, which I took twice.

EGFR (epidermal growth factor receptor) is a protein on the surface of cells. It normally helps cells grow by sending signals to tell cells if, when, and how quickly to divide. When EGFR mutates, it sends too many signals that tell the cell to divide, which can cause cancer cells and a tumor to form.

My friend and mentor Lindi, who founded and runs Breath of Hope Kentucky, has done much to raise awareness and make changes in the EGFR Lung Cancer World. I am sharing this information and pictures that she shared with me.

So We Aren’t Doing Chemo?

All of this testing and diagnosis was crucial because although my tumor is adenocarcinoma,  Non-small cell lung cancer (NSCLC), it allows for more specific and broader options for treatment. The standard treatment for NSCLC consists of chemotherapy and immunotherapy, four cycles that are twenty-one weeks long, delivered through an IV or port. Traditional chemotherapy successfully kills cancer cells and has many side effects. Because we know I have the EGFR mutated lung cancer, my treatment would not start here. 

Let me introduce you to Osimertinib, which is sold under the name Tagrisso.

Fortunately, my diagnosis came quickly, and I was started promptly on Osimertinib, a pill I take once a day. This treatment has very few side effects compared to traditional chemotherapy.

EGFR Resisters 

Ideally, I would stay on Osimertinib indefinitely; there would be no progression, and we would live happily ever after. Unfortunately, people like me tend to develop resistance to osimertinib within five years, leading to the progression of my cancer.

Click here to read more.

The EGFR Resisters group has become an invaluable source of information, hope, and connection. This group is only six years old, founded by EGFR + Lung Cancer patients like me. It is a patient-funded, patient-driven, and patient-led foundation that is advancing the research and treatment of my cancer in real time.

Without this support, along with research and clinical trials before my diagnosis, Osimertinib would not have been available, and other treatments that tend to have less favorable outcomes and side effects would have been started. 

Take a deep breath 

I have been on Osimertinib for nine months. In December 2022, I had three rounds of Stereotactic body radiation therapy (SBRT), a specialized type of external beam radiation that allows the exact delivery of high doses of radiation to small targets.

My last CT scan was this past April at MD Anderson; they put my CT from June 2022 next to the one from April 2023; the tumor in my lung has decreased by over 80%.

While at MD Anderson, I had another bronchoscopy; they sampled several lymph nodes in my lungs, including the mediastinal node; none of the lymph nodes had any active cancer cells; they were all clean, with no signs of cancer in a single one. I know how lucky I am,

I have been reminded several times by one of my physicians (not at MD Anderson) that I’m early in my disease and that progression will occur.

Maybe she is right, maybe not. At our appointment last week, she said, “Karly, I know you want a miracle.” This is after a PET scan that showed continued healing.

I also have learned that I cannot ask my physicians to predict my future.

One of the oncologists I have seen explained that they could see 100 patients, all with EGFR + Lung Cancer, and all could have different biological responses. I have also developed an enormous respect for oncologists; I cannot imagine every one of my patients looking to me to cure their cancer, give them more time, and save their lives. 

Only some people in my shoes got to start where I did; some of their journeys took them in many directions before finding the proper treatment. 

I also know many more will join this club that no one asked to be a member of. I see you; I am sincerely sorry that you are here. I want to ensure that their diagnosis and treatment come as swiftly as mine.

If you are anyone you know finds themselves in a similar situation as mine, please insist on comprehensive biomarker testing.

There is so much hope for those living with or loving someone with EGFR + Lung Cancer. Through continued research, clinical trials, awareness, and funding, we can treat this cancer more like a chronic disease, not a terminal diagnosis.

I so, so selfishly want this in my lifetime.