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!

***

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.


Studies Confirm Osimertinib Activity in Brain Mets

Excerpt:

“The resistance mutation-targeting EGFR inhibitor osimertinib (Tagrisso) demonstrated superior activity against central nervous system (CNS) metastases as compared with chemotherapy or nonselective EGFR inhibitors, two randomized trials of patients with lung cancer showed.

“In a comparison involving patients with untreated EGFR-mutated advanced non-small cell lung cancer (NSCLC), the median CNS progression-free survival (PFS) was not reached in patients who received osimertinib or a first-generation EGFR inhibitor. However, the available data favored the osimertinib arm (95% CI 16.5 months to not reached versus 13.9 months to not reached, HR 0.48, 95% CI 0.26-0.86, P=0.014). Osimertinib also led to a higher response rate.”

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.


CNS Activity of EGFR Tyrosine Kinase Inhibitor in T790M-Positive Advanced NSCLC

Excerpt:

“In a planned subgroup analysis of the phase III AURA3 trial reported in the Journal of Clinical Oncology, Wu et al found that the third-generation EGFR tyrosine kinase inhibitor osimertinib (Tagrisso) produced higher central nervous system (CNS) response rates vs platinum plus pemetrexed (Alimta) in patients with advanced EGFR T790M-positive non–small cell lung cancer (NSCLC).

“In AURA3, 419 patients with disease progression on prior EGFR tyrosine kinase inhibitor treatment were randomized 2:1 to receive osimertinib at 80 mg once daily or platinum plus pemetrexed. The current subgroup analysis was conducted in patients with measurable or nonmeasurable CNS lesions on baseline brain scan by blinded independent central neuroradiologic review.”

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.


AstraZeneca Wins U.S. Approval for 1st-Line Use of Lung Cancer Drug

Excerpt:

“U.S. regulators have expanded use of AstraZeneca’s lung cancer drug Tagrisso to include initial treatment of patients with a specific genetic mutation, the company said on Wednesday.

“The latest Food and Drug Administration approval includes patients with metastatic non-small cell lung cancer whose tumors have epidermal growth factor receptor (EGFR) mutations as detected by an FDA-approved test.

“Tagrisso, also known as osimertinib, was already approved for use in patients whose lung cancer worsened after treatment with other EGFR therapies and who have developed a secondary mutation.”

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 Frontline Osimertinib Priority Review for NSCLC

Excerpt:

“The FDA has granted a priority review to a supplemental new drug application (sNDA) for the use of osimertinib (Tagrisso) as a first-line treatment for patients with non–small cell lung cancer (NSCLC) whose tumors harbor EGFR mutations (exon 19 deletions or exon 21 [L858R] substitution mutations).

“The sNDA is based on the phase III FLAURA study, in which frontline osimertinib reduced the risk of progression or death by 54% versus standard TKI therapy—erlotinib (Tarceva) or gefitinib (Iressa). In the double-blind study, the median progression-free survival (PFS) was 10.2 months (95% CI, 9.6-11.1) for standard therapy and 18.9 months (95% CI, 12.5-21.4) with osimertinib (HR, 0.46; 95% CI, 0.37-0.57; P <.0001).”

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.


Ramalingam Shares Notable Updates in NCCN Guidelines for EGFR+ NSCLC

Excerpt:

“Among the notable updates in the National Comprehensive Cancer Network’s (NCCN) recently released  treatment guidelines for non–small cell cancer (NSCLC) is the category 2A recommendation to give osimertinib (Tagrisso), a third-generation irreversible EGFR inhibitor designed to inhibit both EGFR-sensitizing and EGFR T790M-resistance mutations, in the first-line setting for patients whose disease is EGFR mutant, explains Suresh A. Ramalingam, MD.

“Osimertinib was also given a category 1 recommendation as a subsequent therapy after patients progressed on treatment with standard EGFR tyrosine kinase inhibitors (TKIs) erlotinib (Tarceva), gefitinib (Iressa), and afatinib (Gilotrif). The FDA granted a breakthrough therapy designation to a supplemental biologics license application for osimertinib as a frontline treatment for patients with metastatic EGFR-mutation–positive NSCLC in October 2017. The application was based on findings from the double-blind, phase III FLAURA trial, in which frontline osimertinib was associated with a 54% reduction in the risk of progression or death compared with standard therapy.”

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.


Update Sustains Osimertinib Activity Against CNS Mets in NSCLC

Excerpt:

“New results again demonstrated the benefit of frontline osimertinib (Tagrisso) in patients with EGFR-positive advanced non–small cell lung cancer (NSCLC) and CNS metastases at baseline, according to data presented at the 2017 ESMO Asia Congress.

“The subgroup analysis from the phase III FLAURA trial included 128 patients with at least 1 measurable and/or nonmeasurable CNS lesion at baseline. Among 61 patients who received osimertinib, the CNS objective response rate (ORR) was 66%, compared to 43% (odds ratio, 2.5; 95% CI 1.2-5.2; P = .011) in 67 patients who received standard EGFR TKI therapy with erlotinib (Tarceva) or gefitinib (Iressa).”

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.


Osimertinib Continues to Show Impressive Activity in EGFR+ NSCLC

Excerpt:

“Osimertinib (Tagrisso) has impressed researchers in the field of EGFR-mutant non–small cell lung cancer (NSCLC), most recently with results from the phase III FLAURA trial solidifying its benefit.

“In FLAURA, treatment with frontline osimertinib led to a median progression-free survival (PFS) of 18.9 months (95% CI, 15.2-21.4). This represented a 54% risk reduction in progression or death compared with a standard EGFR tyrosine kinase inhibitor (TKI) for patients with locally advanced or metastatic EGFR-mutant NSCLC.”

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.