Properly Treated

The majority of patients with non-small cell lung cancer have genetic alterations, also called mutations. This “damage” to the cellular DNA is what enables and drives cancer growth. 

As Jeffrey Crawford, MD, a veteran medical oncologist who co-leads DCI’s Solid Tumor Therapeutics Research Program, explained, in some cases there are single “driver” mutations that can be targeted with a specific drug. In many other settings, he said, clinical trials are ongoing and may identify an effective targeted therapy. In addition, many other tumors have several mutations, and chemotherapy and/or immunotherapy may be more effective in those patients.

The most commonly mutated genes implicated in lung cancer are EGFR, KRAS, and ALK+. Only EGFR, ALK+, and ROS1 (a rarer mutation) are targetable by an FDA-approved therapy.

Molecular testing (in patients both with and without a prior smoking history) can identify which genetic alteration/mutation might be driving the lung cancer and if there are FDA-approved drug(s) available — that is, targeted therapies proven to shrink cancer and prolong survival in patients whose tumors harbor the mutation.

Both Huynh and Gira each had biopsies to determine if they were one of the fortunate ones for whom targeted therapy might work.

When Crawford, Gira’s oncologist, told him he had one of those targetable mutations “it was truly an answered prayer.” Gira remembers saying,"Praise the Lord! Thank you, God!”

“I had been waiting anxiously ever since the biopsy for the pathological study to be completed. It gave me hope. It was a cause for rejoicing."

Gira, under Crawford’s care, learned he had a mutation in the anaplastic lymphoma kinase (ALK) gene. This mutation is a genetic alteration in the DNA of lung cells that causes these cells to grow abnormally, turn into cancer cells, and potentially spread to other areas of the body. In ALK+ NSCLC, Gira’s diagnosis, the ALK gene fuses with another gene (EML4) to produce a unique ALK protein that promotes unchecked growth of the cells.

Mutations in the ALK gene are acquired, not hereditary. Only four percent of all non-small-cell lung cancer patients are ALK+. Those most likely to be diagnosed ALK+ are age-55-or-younger never-smokers — at least a decade younger than typical non-small cell lung cancer patients.

When Gira had first heard, weeks before, about the various types of cancer mutations he could have, the Teenage Mutant Ninja Turtles had come to mind. As it turned out, his mutation, while not a fighting turtle, was the next best thing.

“Dr. Crawford said, ‘If you have to have lung cancer, this is the one you want,’” said Gira, who began taking the ALK inhibitor alectinib (Brand: Alecensa). “There have been some really, great medical breakthroughs and advancements that I have been a beneficiary of because I had that mutation.”

Unfortunately, ALK+ is an aggressive subtype that has a propensity for spreading to the brain. While treatment kept Gira’s cancer at bay for more than a year, an MRI in October 2018 of Gira’s brain revealed 40 tumors.

It’s routine for oncologists to obtain brain MRIs for their advanced-stage lung cancer patients. According to the Duke Center for Brain and Spine Metastasis at DCI, lung cancer accounts for 50 to 60% of all brain metastases, either at initial diagnosis, or later in their disease course.

There were too many tumors to deploy surgery or stereotactic radiosurgery (a radiation procedure) to treat the individual tumors, so Gira was referred to DCI radiation oncologist Christopher Kelsey, MD, for consideration of another treatment option — whole brain radiation therapy, which treats all of the tumors in the brain, including very small lesions that go undetected on MRI.

Within three months of this therapy, the cancer in his brain was starting to regress and eventually resolved. Unfortunately, at the six-month mark, a new brain MRI demonstrated some new lesions.  At this point, instead of further radiation, Kelsey and Crawford decided to treat Gira with a new targeted therapy, lorlatinib (another ALK inhibitor), which was successful.

On July 9, 2019, Gira was treated to his first cancer-free scan since diagnosis.

“Twenty-two months after diagnosis, I met NED (no evidence of disease) for the first time,” said Gira. He and his wife celebrated with a special “NED” cake.

Huynh, who already had brain metastasis at diagnosis, underwent a different radiation procedure to her brain than Gira.

Duke Cancer Institute radiation oncologist Grace Kim, MD, PhD, performed stereotactic radiosurgery (precisely-targeted high-dose radiation) on the more than 10 tiny cancerous lesions in Huynh’s brain over the course of five treatments. Kim treated all of her lesions with SRS and over time the lesions decreased in size until they eventually disappeared.

When Huynh underwent molecular testing, she learned she had a mutation in the epidermal growth factor receptor (EGFR) gene, whose job it is to help cells grow and divide normally. Commonly found in skin cells, EGFR can also be found elsewhere in the body, including the lungs. When it’s mutated, the EGFR becomes “stuck in the on-position” (as the Lung Cancer Foundation describes it), allowing cells to grow abnormally and out of control.

Most lung cancer patients with EGFR mutations aren’t born with them, they’re acquired. According to the Lung Cancer Foundation, these mutations are most commonly found in never smokers, people with non-small cell lung cancer adenocarcinoma, women, young adults and people of Asian or East Asian heritage. While these mutations are observed in about 10% to 15% of all advanced cases of NSCLC, they can also appear in earlier stages of disease.

Several different mutations in the EGFR gene are linked with NSCLC. Huynh was prescribed osimertinib (Brand: Tagrisso) — FDA-approved to work against sensitive EGFR mutations as well as the otherwise resistant T790M-mutated EGFR.

She was taking the drug a little less than two years — her lung cancer stable — when, in July 2019, she learned the cancer in her lungs was growing again. Kelsey treated the tumor in her left lung and an adjacent lymph node with stereotactic body radiation therapy and she continued taking osimertinib in hopes of delaying or preventing further cancer development.

Since diagnosis, Huynh has alternated between receiving care from Stinchcombe and Crawford.

“They’re both amazing,” said Huynh.

Paying it Forward

After their life-altering cancer diagnoses, both Gira and Huynh took a step back from their careers to heal, to focus on family, and to move forward helping others impacted by cancer.

Both were diagnosed as they were sending their first-borns off to college. Now, those same daughters are in their final year of undergraduate studies; each with plans to continue their studies after graduation.

After his cancer diagnosis, Gira continued working for nearly a year and a half as the Senior Pastor of Orange UMC in Chapel Hill before taking medical leave and turning his professional focus to a ministry of writing. This past August, Gira published an Amazon best-seller How Cancer Cured Me: Experiencing the healing of brokenness and disease, based on notes he wrote in his journal over a two year time period, in which he detailed the physical and spiritual setbacks and “amazing, multi-dimensional healing” he experienced through his lung cancer journey and the personal, family and professional issues and conflicts he confronted. Through his blog (www.davidgira.com), his book, and interactions with readers, he’s devoted himself ever since to supporting cancer patients and their loved ones.

He’s also became a strong public advocate for lung cancer screening and education. At his latest trip to Duke Cancer Center, he stopped in the garden to make a YouTube video about the different risk factors for lung cancer (not just a smoker’s disease) and the symptoms people shouldn’t ignore.

Huynh’s path to advocacy, meanwhile, began with “crashing a gala.”

“When you're first diagnosed, you feel like you're all alone in this and you read all the statistics and you’re like, ‘Oh, my gosh, right?’ And so, I Googled “North Carolina lung cancer,” and stumbled onto the website of the Lung Cancer Initiative of North Carolina (LCI),” shared Huynh. “I still remember that day. I found out that they had a gala going on that weekend (LCI’s annual Evening of Hope fundraiser), and I just showed up. I wanted to know who else had lung cancer and how they were doing? I just wanted to meet another survivor.”

The LCI staff welcomed her with open arms and took down her name and number. There she met DCI thoracic oncologist Jennifer Garst, MD, the founder and board chair of LCI, who right away introduced her to other cancer survivors.

“They gave me a lot of hope at that time, which I needed. They invited me to stay, but I said I couldn’t. I just wanted to know that there are other people out there like me,” recalled Huynh.

Huynh stayed connected with LCI, attended educational talks and seminars and got to know the work done by staff. She still volunteers with the non-profit whenever she can, whether participating in their annual fundraiser, connecting with other survivors, or this past summer allowing a video crew to come to her home and tape a special message for LCI’s pandemic-era virtual gala.

“Staying in touch to see the progress of research, hearing other survivors’ stories, there is such hope,” she said.