Super ASK Patient: Carla Takes Charge of Her Own Lung Cancer Treatment


In the fall of 2014, I experienced an unusual dry cough with nasal drain, and was just not feeling like myself—someone who rarely got sick. My general practitioner performed several tests that revealed nothing, and lung cancer was never suspected because I hadn’t been a smoker and had no family history.

By the following summer, when I developed shortness of breath, I was tested again, was told I had asthma, and received a prescription for steroid treatment. Only then did I take charge of the situation, question my doctor, and ask for a chest X-ray, which showed a three-by-four-inch tumor in my right lung. In October of 2015, I was diagnosed at age 53 with stage 4 non-small cell lung cancer (NSCLC). I had a pleural effusion, and my cancer had the mutations EGFR +ve and exon 19 deletion.

Needless to say, I was shocked…and it seemed ludicrous to me to accept the grim prognosis of 9 to 12 months, as if every patient was the same. After researching this deadly disease, I refused to accept a short life expectancy based solely on historical data. Lung cancer research had been disproportionately underfunded and little progress had been made for decades. But things had advanced substantially in the last five years, so it was time for new statistics!

Carla with her husband and son in Panama

After five days of radiation, I was prescribed afatinib (often sold under the brand name Gilotrif). This was effective for three years, during which I was blessed with an excellent “normal” quality of life. Now I am on Tagrisso (generic name osimertinib), which is working well, and thankfully, without side effects.

My advice to any cancer patient is to take control…it is YOUR life! I have changed hospitals three times and am fortunate to have sought out an amazing oncologist who is compassionate, knowledgeable, and proactive, always welcoming my input. I partnered with the best naturopath in the province, who specializes in cancer and guided me towards the most effective supplements and adjuvant therapies. While I live and have received most of my treatment in Canada, I also researched international alternative treatments and travelled to Cuba several times for Vaxira vaccines. And I found Emma at Cancer Commons, who has been a wonderful support and incredible resource.

I would also advise any patient to listen to your body and always go with your gut. Though I had no symptoms, 1.5 years after diagnosis I felt I should have another brain MRI “just in case.” Lo and behold, it revealed four small brain metastases, which were immediately and successfully Gamma Knifed and have not returned.

Carla and extended family in Mexico

A year after that, my CT scan showed “thickening of the omentum” and growths on my ovaries, which my gynecologist did not think was related to the NSCLC. I persevered and requested surgery, which discovered and removed tumors in my abdominal area. These proved to be metastases from NSCLC. They tested positive for the necessary resistance mutation (T790M), which allowed me to start my second targeted therapy (Tagrisso). I have been taking this drug since October 2018, and I am doing very well now.

Lastly, I advise any cancer patient to surround yourself with positivity. Read stories about cancer survivors. Talk to people who have open minds and are optimists. And most important, allow yourself to have HOPE!

Travelling has always been my passion, and this health “scare” has made that a bigger priority than ever. I have taken advantage of the companionship of friends and family and experienced over a dozen fabulous adventures since my diagnosis just over three years ago. Do more of what you love!

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Super Patients are cancer survivors who learned to be more engaged in their own care. Cancer Commons believes every patient can be a Super Patient or benefit from a Super Caregiver or Super Advocate. We hope these stories will provide inspiration and hope for your or your loved one’s own treatment journey.


‘Eye-Popping’ pCR Rate With SABR Alone in Early Lung Cancer

Excerpt:

“Stereotactic ablative radiotherapy (SABR) yielded a surprisingly low pathologic complete response (pCR) rate in a phase II trial of operable, early-stage lung cancer patients, raising questions about SABR alone in this setting.

“In the first study to examine neoadjuvant SABR prior to surgery in non-small cell lung cancer (NSCLC), SABR yielded a 60% pCR rate at 10 weeks post-radiation (95% CI 44%-76%), a rate far lower than hypothesized when the trial was designed, reported David Palma, MD, PhD, of the London Health Sciences Centre in London, Ontario, Canada, and colleagues, in JAMA Oncology.”

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If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.


Lung-MAP Precision Medicine Trial Expands

Excerpt:

The Lung Cancer Master Protocol (Lung-MAP), the first precision medicine trial in lung cancer supported by the National Cancer Institute (NCI), is undergoing a major expansion to include patients with all non–small cell lung cancers (NSCLCs).

“The trial previously tested treatments for people with advanced-stage squamous cell lung cancer. Opening the trial to all types of advanced-stage NSCLCs means that thousands of new patients will be eligible to enroll.”

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If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.


FDA Approves Lorlatinib for Second- or Third-Line Treatment of ALK-Positive Metastatic NSCLC

Excerpt:

“On November 2, 2018, the Food and Drug Administration granted accelerated approval to lorlatinib (LORBRENA, Pfizer, Inc.) for patients with anaplastic lymphoma kinase (ALK)-positive metastatic non-small cell lung cancer (NSCLC) whose disease has progressed on crizotinib and at least one other ALK inhibitor for metastatic disease or whose disease has progressed on alectinib or ceritinib as the first ALK inhibitor therapy for metastatic disease.

“Approval was based on a subgroup of 215 patients with ALK-positive metastatic NSCLC, previously treated with one or more ALK kinase inhibitors, enrolled in a non‑randomized, dose-ranging and activity-estimating, multi‑cohort, multicenter study (Study B7461001; NCT01970865). The major efficacy measures were overall response rate (ORR) and intracranial ORR, according to RECIST 1.1, as assessed by an independent central review committee.”

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Pembrolizumab Regimen Receives FDA Approval for Frontline Treatment of Squamous NSCLC

Excerpt:

“Based on findings from the phase III KEYNOTE-407 trial, pembrolizumab (Keytruda) has been approved by the FDA for use in combination with carboplatin and either paclitaxel or nab-paclitaxel (Abraxane) for the frontline treatment of patients with metastatic squamous non–small cell lung cancer (NSCLC).

“Results from the trial showed combining pembrolizumab with chemotherapy reduced the risk of death by 36% compared with chemotherapy alone in patients with metastatic squamous NSCLC. The median overall survival (OS) was 15.9 months (95% CI, 13.2 – not evaluable) with pembrolizumab versus 11.3 months (95% CI, 9.5-14.8) with chemotherapy alone (HR, 0.64; 95% CI, 0.49-0.85; P = .0017). The OS benefit was observed regardless of PD-L1 expression level, choice of taxane, age, sex, and ECOG performance status.”

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Aggressive RT, Surgery Doubles OS in NSCLC With Limited Mets

Excerpt:

“Aggressive local consolidation in stage IV non-small lung cancer (NSCLC) drastically improved overall survival over standard care in patients with up to three metastatic lesions, a small randomized study found.

“Among 49 patients whose disease had not progressed after initial systemic therapy, overall survival was 41.2 months in those treated with radiotherapy or surgery compared with 17.0 months in those on standard maintenance therapy (P=0.017), reported Daniel Gomez, MD, of MD Anderson Cancer Center in Houston, at a press briefing here at the American Society for Radiation Oncology (ASTRO) meeting.”

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If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.


Liquid Biopsy IDs More NSCLC Mutations, Yields Patient Therapy Response in Study of Guardant Test

Excerpt:

“New data this week has added evidence for the value of blood-based cancer testing in non-small cell lung cancer, demonstrating in a cohort of about 300 that comprehensive liquid biopsy — in this case Guardant Health’s Guardant360 test — can help identify targeted mutations in more patients than tissue sequencing.

“The study also found that patients treated on the basis of blood-based test results respond to treatment similarly to those treated based on tissue test results.”

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FDA Approves Vizimpro for EGFR-Mutated Non-Small Cell Lung Cancer

Excerpt:

“The FDA approved dacomitinib for the first-line treatment of patients with metastatic non-small cell lung cancer whose tumors have EGFR exon 19 deletion or exon 21 L858R substitution mutations.

“Dacomitinib (Vizimpro, Pfizer) is a once-daily oral pan-human EGFR tyrosine kinase inhibitor.”

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If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.


Pembrolizumab Plus Chemotherapy Prolongs OS, PFS for Metastatic Lung Cancer

Excerpt:

“The addition of pembrolizumab to chemotherapy extended OS and PFS compared with chemotherapy alone among patients with metastatic, squamous, non-small-cell lung cancer, according to results of the randomized phase 3 KEYNOTE-407 trial presented at International Association for the Study of Lung Cancer’s World Conference on Lung Cancer.

“The double-blind study included 559 treatment-naive patients with metastatic, squamous NSCLC. Patients who had symptomatic central nervous system metastases, a history of noninfectious pneumonitis that required the use of glucocorticoids, active autoimmune disease or who were receiving systemic immunosuppressive treatment were excluded.”

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If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.