Looking back, I can pinpoint my first symptom of lung cancer. I was at an accounting conference in Atlanta and stopped in the middle of a staircase, heart pounding and lungs burning. “I should be able to climb three flights of stairs,” I chastised myself. “I must be really out of shape.”
Symptom two followed shortly: I developed a cough that lasted for days, then weeks, then a couple months. I visited the doctor after hurting my back moving furniture and mentioned, as an afterthought, that I had a lingering cough.
He listened to my lungs and, hearing ‘crackling,’ sent me for an x-ray, which confirmed his suspicions I had pneumonia. I started an antibiotic. The cough stayed, so I took a second round of antibiotics. This time the cough disappeared, but my second x-ray wasn’t clear. My primary care provider (PCP) said it was normal for the x-ray to show remnants of the pneumonia even after symptoms resolved, so he recommended I have a third x-ray in a month or two.
When I went for the third x-ray, the radiology staff told me the radiologist had recommended a CT scan after my 2nd X-ray, but my PCP ignored the suggestion. I had the x-ray and headed to Vegas. I got the call at the craps table at the casino. “You need a CT scan,” the nurse said. I knew then I was in trouble.
The doctor insisted I come to his office to get my CT results, but I didn’t need to hear my diagnosis from him. I walked in and said: “I have lung cancer,” then asked: “What is my life expectancy?” He pulled out his phone and said: “Siri, what is the prognosis of adenocarcinoma?” Even after insisting I hear the news from him in person, he hadn’t bothered to learn the answers to the most obvious questions I’d ask. He couldn’t even recommend or refer a pulmonologist. I sat in the exam room and used the insurance website to find one.
I alone coordinated my care and advocated for myself. I made an appointment for the biopsy and showed up for the appointment to get my biopsy results to find the doctor’s office door locked. They had changed the appointment, the office staff explained, but I knew they never notified me. I couldn’t find a thoracic oncologist covered by my health insurance, and I lived in the seventh largest city in the U.S. and had the number one form of lethal cancer. Instead, I had a generalist.
When I heard my results, I learned I had stage 3, non-small-cell adenocarcinoma, which, in my case, was inoperable lung cancer. I paid out of pocket for a second opinion to confirm it and started chemotherapy four months after diagnosis.
My first scan after treatment – nine rounds of chemotherapy and 36 rounds of radiation – showed my disease had progressed. My cancer was still inoperable and in November 2018 I started Imfinzi, an immunotherapy treatment that had been given fast-track
approval from the FDA in 2017. I did 26 rounds between October 2018 and November 2019. I had stable scans until September 2020.
In the spring of 2019, I attended Lungevity’s Hope Summit, where I met a lot of survivors and gained a lot of hope. One of these survivors was Terri Conneran, who eventually was diagnosed with the KRAS mutation and founded the KRAS Kickers. Through the years we maintained contact on Facebook, so when I was diagnosed in 2020 with the same biomarker, it was natural for me to reach out to her and join the Kickers. The KRAS Kickers had a support network filled with people who understood their challenges and coped and navigated the complicated world of advanced cancer care together.
In September 2020, a scan showed I had progression in my right lung. The radiation oncologist felt it was inflammation, so didn’t address it. A PET scan showed a lymph node near my collarbone might be an issue. I had a biopsy followed by 10 rounds of radiation.
I had met Bonnie Addario from Go2 for Lung Cancer and she encouraged me to push the oncologist for biomarker testing, but my oncologist discouraged getting it. She was concerned about insurance covering the test, and I told her if insurance didn’t pay for a biomarker test there were grants, and if grants wouldn’t pay for it, I would use my retirement funds. Those funds wouldn’t be any use to me if I died. I pressed and advocated for myself until my oncologist agreed.
I had the biomarker testing done and in mid-November tested positive for KRAS G12C. Bonnie once again advised me to seek a second opinion and set me up with a thoracic oncologist in California. By this time, I had started planning a move to Florida to be closer to family and access better medical care. My oncologist ordered a CT-A scan that showed my right upper lobe had collapsed. My pulmonologist spoke to my oncologist and stated a stent wouldn’t work, so nothing was done.
I moved to Florida on oxygen, and days after arriving landed in urgent care. Doctors found my right lung had collapsed. My new oncologist suggested I try Opdivo and Yervoy, since I had seen good results with Imfinzi. He also suggested I get a PleurX catheter to handle the fluid in my pleural cavity. I had a second and third thorancentesis in addition to scans, and had the catheter installed. Two weeks after my first round of Opdivo and Yervoy, I had my second round of Opdivo, and five days after that I was back in the hospital because I had developed pneumonitis. I was in the hospital for weeks, having a surgery, a broncoscopy and another procedure to clean out my pleural cavity. I was on high doses of steroids to get my pneumonitis under control.
In May 2021, a drug that treated cancer specific to my biomarker, Lumakras (sotorasib), was approved. I began taking it in June. In two weeks, my cough was gone. In five and a half weeks, my scans showed significant improvement, and in nine and a half weeks I was able to go off supplemental oxygen.
On January 6, 2022, one year after moving to Florida, my scans found “no evidence of disease.” Today, I consider myself an optimistic realist. I know the odds, and I’m going to live my best life for as long as I’m able. Looking back, I can’t believe how sick I was. Through this ordeal, KRAS Kickers provided education, helped me advocate for myself and offered unwavering fellowship and support. Like my supporters in the lung cancer support groups, they’ve been ’my people.’ I’ve had to work hard to get the medical care I needed, and still do. But after I joined KRAS Kickers in late 2020, I’ve been grateful to have the KRAS Kickers on my team.
In January of this year, a scan showed my cancer had returned. Biopsies will show if my mutations have changed, and I will start the process of finding a new treatment. Whatever form that treatment takes; I remain hopeful it will work.
Each month, KRAS Kickers is pleased to present a Survivor Story. These are the journeys of cancer survivors that have graciously offered to share this part of their lives with us to provide an awareness of community and hope to our readers. None of us are in this alone, and we all have a story to tell.