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.


Afatinib Approval for Lung Cancer Expanded by FDA

Excerpt:

“The frontline indication for afatinib (Gilotrif) has been expanded by the FDA to include the treatment of patients with metastatic non–small cell lung cancer (NSCLC) whose tumors harbor uncommon EGFR alterations in L861Q, G719X, and/or S768I.

“The FDA initially approved afatinib in 2013 for the treatment of patients with metastatic NSCLC with exon 19 deletions or exon 21 L858R substitutions. In 2016, the FDA expanded the indication to include patients with squamous histology following progression on a platinum-based chemotherapy.”

Go to full article.

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.


Targetable Mutations in NSCLC: More Testing Needed!


Diagnosis of adenocarcinoma of the lung, a major subtype of non-small lung cancer (NSCLC), nowadays triggers mandatory testing of tumor tissue for alterations in four genes: EGFR, ALK, ROS1, and more recently, BRAF. If present, these alterations predict sensitivity to specific targeted drugs approved by the U.S. Food and Drug Administration (FDA) that work better and often longer than standard chemotherapy, and are better tolerated.

However, there are many more targetable/actionable genomic alterations (also known as “drivers”) in NSCLC. This blog post will briefly discuss most of them, with the goal of promoting molecular testing for more than the four “usual suspects” mentioned above. Some patients with these alterations may benefit from FDA-approved drugs or from enrollment in clinical trials that are testing additional drugs and drug combinations. Continue reading…


FDA Grants Priority Review to Afatinib for NSCLC With Rare EGFR Mutations

Excerpt:

“The FDA has granted a priority review to a supplemental new drug application (sNDA) for afatinib (Gilotrif) for the frontline treatment of patients with metastatic non–small cell lung cancer (NSCLC) whose tumors harbor EGFR exon 21 (L861Q), G719X, or S768I substitution mutations.

“Uncommon mutations such as these represent less than 10% of the EGFR mutations found in NSCLC patients, but are associated with poor prognosis and survival, Boehringer Ingelheim, the manufacturer of afatinib, noted in a press release.”

Go to full article.

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.


EGFR-mutant NSCLC: Choice of First-Line Treatment May Get More Complicated


Medical guidelines for treatment of newly diagnosed non-small cell lung cancer (NSCLC) mandate upfront testing of tumor tissue for mutations in the EGFR gene (as well as ALK and ROS gene translocation). EGFR mutations are found in 10 to 15% of white patients, but in patients of East Asian origin such mutations are in encountered in approximately 48%. However, with new data and drugs entering the playing field, newly diagnosed patients’ treatment decisions could become more complex.

There is a good reason to test for EGFR mutations: the accumulated data show that, compared to first-line chemotherapy, treatment with drugs that inhibit the activity of EGFR in patients with activating EGFR mutations improves patients’ median progression-free survival (PFS) time from 4.6 to 6.9 months to 9.6 to 13.1 months, and has a higher objective response rate (ORR). Moreover, EGFR inhibitors are associated with a significantly lower incidence of adverse effects and better control of disease symptoms. Continue reading…


Lung Cancer Highlights from ASCO 2016


This year, the Annual Meeting of the American Society of Clinical Oncology (ASCO) did not produce any truly groundbreaking revelations about new treatments for lung cancer. However, researchers did report quite a few positive findings, and some disappointing ones. I have summarized some of the more prominent presentations below. Continue reading…


US Widens Use of Boehringer's Lung Cancer Drug Gilotrif

Excerpt:

“US health officials have expanded the approved indications for Boehringer Ingelheim’s Gilotrif, clearing its use in patients with squamous cell carcinoma of the lung.

“Gilotrif (afatinib), an oral, once-daily EGFR-directed therapy, is currently cleared in the US for the first-line treatment of specific types of EGFR mutation-positive non-small cell lung cancer.

“Approval for squamous cell carcinoma of the lung, a disease linked with a particularly bleak poor prognosis of one-year survival post diagnosis, was based on data from the head-to-head LUX-Lung 8 trial in patients whose tumours progressed after first-line chemotherapy.”

Go to full article.

Do you have questions about this story? Let us know in a comment below. 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.


CHMP Recommends Afatinib for Second-Line NSCLC

“Afatinib (Giotrif, EU; Gilotrif, US) has received a positive recommendation from the Committee for Medicinal Products for Human Use (CHMP) as a treatment for patients with advanced squamous cell non–small cell lung cancer (NSCLC) following progression on platinum-based chemotherapy, according to Boehringer Ingelheim, the manufacturer of the irreversible EGFR inhibitor.

“The CHMP opinion, which recommends that the treatment should gain approval from the European Medicines Agency in this setting, is based on data from the phase III LUX-Lung 8 trial. In the study, second-line afatinib reduced the risk of both disease progression and death by 19%, compared with erlotinib (Tarceva) in patients with advanced squamous cell carcinoma of the lung.”


Afatinib Shows Clinical Benefit for Lung Cancer Patients with Brain Metastases

“Non-small cell lung cancer (NSCLC) patients with common epidermal growth factor (EGFR) mutations and brain metastases showed improved progression-free survival (PFS) and response from the EGFR tyrosine kinase inhibitor (TKI) afatinib compared to standard platinum doublet chemotherapy.

“More than 25% of with advanced NSCLC experience progression to the brain from their primary lung and this number increases to 44-63% for those NSCLC tumors driven by EGFR mutations. Prognosis is poor and typically ranges for 1-5 months for those with . EGFR TKIs are highly effective therapies for advanced NSCLC driven by EGFR mutations, especially the common mutations, exon 19 deletions and L858R point mutations. Even though there are a number of EGFR TKIs approved for first-line therapy of EGFR mutation positive NSCLC, there is a scarcity of prospective data for EGFR TKIs in patients with brain metastases.”