This holiday season, two stage 4 lung cancer survivors share their inspirational stories of healing and passing on the gift
David Gira, 49, and Phuong Huynh, 46, come from different family and professional backgrounds.
They’ve never met, but they have many things in common. Each has been married more than 20 years. Him, 23. Her, 24. Each is a parent of more than one child. Each has a daughter in her final year of college. Both live in cities in North Carolina’s Research Triangle. Each has a family member who works in healthcare at Duke. And both have become unexpected advocates for a cause they never thought much about before September 2017.
Gira, a father-of-three, is an ordained elder of the United Methodist Church of North Carolina with nearly 20 years of pastoral and church leadership experience. Born in Michigan, he’s lived in North Carolina since the late 1970s; in Charlotte, Locust, Boone (for college), Greensboro, and Wilson. After earning a Master of Divinity with honors from Duke in 2005, he went on to live and serve (as pastor) in Graham, Fayetteville, Raleigh and Chapel Hill.
Gira and his wife Amy (a nurse at the Duke University Hospital birthing center) and family live in Raleigh.
Huynh, a mother-of-two, is a research scientist with 17 years of experience in drug development. Born in Vietnam, she was eight years old when she and her family arrived in the U.S. as immigrants. Huynh’s father, in the volatile restaurant business, moved the family where the work was — from Harford, Connecticut, to Worcester, Massachusettes, to Orlando, Florida, to Buffalo, New York.
After graduating from the University of Buffalo, Huynh spent the first six years of her professional life with Pfizer Inc. in Groton, Connecticut, before moving south for warmer climes and plentiful job prospects, including an eight- year stint in the labs of GlaxoSmithKline. She and her husband Lance Schado (with GE Aviation) and family live in Cary.
In September 2017, the pastor and the scientist were each shocked by a diagnosis of non-small cell lung cancer— the most common type of lung cancer. Neither Gira, nor Huynh, had ever used tobacco — the leading risk factor for lung cancer. Their cases weren’t entirely unusual. According to the American Cancer Society, as many as 20% of people with lung cancer have never smoked or used any other form of tobacco. (Patients in this group may have been predisposed to lung cancer due to radon gas, second-hand smoke, cancer-causing agents in the workplace, air pollution, and/or genetic mutations, or no apparent cause at all)
They would each seek and receive treatment from Duke Cancer Institute’s thoracic oncology team and radiation oncology team. They would each experience lung cancer’s spread to the brain and other setbacks. And, as they celebrated Christmas this year, each of their families would rejoice in the greatest gift — no evidence of disease.
Gira may have let his cough go on longer before seeing a doctor, if it hadn’t been for his wife Amy insisting he get checked when his prolonged cough turned painful that summer of 2017. She’d heard that kind of cough on the hospital’s pulmonary unit. He sounded like one of her patients.
Gira’s diagnosis on September 1, 2017, was squamous cell carcinoma, a kind of non-small cell lung cancer linked to a history of smoking and more common in men than in women.
“Scans revealed a golf-ball sized tumor in my right lung. I had never been a smoker or a golfer! In fact, I loathe both!” Gira likes to joke. “Cancer snuck up on me, scared me, and flipped my world upside down.”
When Huynh went in for her annual gynecological exam that same month, she mentioned a “summer cold” — characterized only by a dry cough and mainly in the evenings — that had dragged on for weeks.
She also casually brought up some new breathlessness she’d been experiencing.
“I was very active, I was doing boot camp and running and I realized that I was more tired than usual. You know, I thought, ‘Why am I so tired?’ I couldn't run as fast and as hard. And going up a long flight of stairs, I would get a little out of breath. My heart would beat faster,” said Huynh.
Huynh had entered menopause in her early 40s, considered abnormally early, so she was accustomed to keeping a close eye on her reproductive health; even worried over it. The coughing and breathlessness weren’t of great concern. But her gynecologist insisted on an X-ray to be safe.
“It was crazy, when she called me with the results; I remember, she even said, ‘You know, actually, they saw something on the X-ray… hopefully, it’s nothing.’ She ordered a CT scan and wished me the best,” recalled Huynh, who was referred to a UNC pulmonologist in Chapel Hill. “He saw something on the CT, then I went in for a PET scan. I remember the radiologist helping me with the PET scan saying, ‘You know your health record is clean. It’s probably fine.’”
The pulmonologist reviewed her PET scan results and suspecting tuberculosis, even recommended she quarantine and undergo a bronchoscopy.
“I was quarantined for like five minutes before he went and did the bronchoscopy. And I remember reading the preliminary results, which showed that there’s cancer, and being very emotional and upset and my husband was very positive, saying, ‘You know, let's not get, too, too crazy. Let's wait for the final result,’ but you know, coming from a lab, I know that very rarely is a preliminary result wrong.”
When the final result was in, the pulmonologist provided Huynh few details.
“He just said, ‘It looks like it is cancer, so I want you to go see an oncologist.’ And you know, we cried, my husband and I cried a lot. But he (my pulmonologist) did say one thing that was really helpful, ‘Properly diagnosed is the road to proper treatment,’ and that calmed me down a little bit,” said Huynh.
She wasn’t calm for long. In the short time before a scheduled appointment with DCI thoracic oncologist Thomas Stinchcombe, MD, Huynh began experiencing a new symptom — numbness that traveled from her head to her arms to her fingers. Afraid she was having a heart attack, she went to the ER. It wasn’t that. An MRI revealed masses in her brain.
After some additional tests, Stinchcombe told her she was facing a stage 4 lung cancer diagnosis; that the tumors in her brain were metastatic lung cancer tumors. Huynh had adenocarcinoma, the most common form of non-small cell lung cancer, which originates in the cells in the glands on the outer part of the lungs. This type, he explained, most frequently strikes women, non-smokers, and people under the age of 45.
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 diseasebased 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.
Focus on the Future
Some of the most effective drugs at treating non-small cell lung cancer — all of the drugs that Gira and Huynh have so far been treated with — belong to a particularly robust class of drugs (second and third generation tyrosine kinase inhibitors (TKIs)) that can often shrink tumors and dramatically increase life expectancy.
“You know, I never thought I would be taking oncology drugs. When you work in drug development as I did, you think ‘I never want to touch those oncology drugs … they are so toxic,’” said Huynh, who’s developed a newfound appreciation for both these drugs upon which her life now depends and for the accelerated speed of oncology drug development vs. other drug types.
For her, the benefits in survival have far outweighed the risks in side-effects. Huynh’s oncologists report that her brain remains clear of disease and there’s no evidence of active disease elsewhere in her body, including her lungs.
Gira remains “NED.”
“Unfortunately, acquired resistance to any and/or all of the currently available TKIs will happen in most patients,” said Crawford. “Both Rev. Gira and Ms. Huynh are both multiyear survivors with advanced lung cancer who have benefited from targeted therapy and radiation. There is hope of benefit from chemotherapy and/or immunotherapy if and when they need it.”
Many stage-4-cancer patients become comfortable with the idea that, if they can’t be cured, they can live with advanced cancer like one would live with a chronic illness.
“That’s the hope,” said Huynh.
“When I was diagnosed, I asked Dr. Crawford ‘What's my prognosis? You know, just give it to me. And of course, he had an answer that is very appropriate. I had to really press to get a number. He also said, ‘Doctors are wrong many times, you know.’ And even after he gave me a number, I felt like, ‘You know, what if I'm an outlier, what if I'm different?’ So, my mindset now is that I'm going to live every day the best I can and be thankful and grateful for the day that I have,” said Huynh. “I don't know how many days, how many years I have, but I'm going to keep going and maybe one day I can live long enough to maybe see the next treatment and be able to get on that.”
“I'm at a point now where I don't want to think about that (my prognosis) too much,” she continued. “I just want to think about what's in front of me — my children, my family — and absolutely enjoy what I have now.”
Reflected Gira, “I want to be a faithful steward of the healing I've received at DCI. I believe all things work together for good for those who love God. I want continued good to come out of my cancer experience for me, my family, and everyone impacted by this disease.”
Stage 4 lung cancer survivor Phuong Huynh taped a special message for the Lung Cancer Initiative of North Carolina (LCI) about her lung cancer journey and her volunteer work with the non-profit. The video aired at LCI's Evening of Hope Live Online Celebration & Auction this summer. (Duke Cancer Institute thoracic oncologist Jennifer Garst, MD, is LCI's founder and board chair.)
During the Covid-19 pandemic, Phuong Huynh has spent most of her time at home. Like many people, she hasn’t traveled like she used to. She had to cancel a trip to Vietnam (the couple’s first trip back since either of them left the country as refugees in the ‘80s) and postpone a family reunion/birthday celebrations-trip to the Caribbean.
“If I was in someone else's situation, someone who’s not sick, I’d be under the assumption that I’m going to live a great healthy life and these trips could wait,” said Huynh. “But what if I don't have another two, three years?”
Instead, the family has made small trips, like to the beach or the mountains.
For the couple's 24th wedding anniversary this fall, Huynh and her husband picked up takeout and had a picnic at the Rose Garden in Raleigh, then walked around and enjoyed the flowers.
“That day, it was a beautiful day. And you know, it's just things like that. We just have to do it a little differently,” she said. “My husband is my rock. All the time, he tells me, ‘You're gonna be fine.’ At first it was hard. I said, ‘I'm not fine. I don’t know what you're talking about. I’m a mess.’ But just hearing those words over and over, from him, somehow, now I believe it.”