A Tennessee Marathon Runner, 28, Diagnosed With Stage 4 Lung Cancer 13-Years Ago, Finds Hope In Clinical Trial and Vows to Still ‘Live Life to the Fullest’

Despite more than a decade of treatment and the constant anxiety that comes with being a stage 4 patient, Legasse has built a life filled with movement, work, and meaning.

“For nearly 13 years, it’s been a journey filled with ups and downs. Despite everything, I run marathons, work full-time, and embrace life every day,” he told the lung cancer support organization ALK Positive.

ALK is a signaling protein that is inappropriately present on the tumors of about 5% of patients with NCSLC. Legasse is part of the 5% of people with non-small cell lung cancer (NSCLC) whose tumors carry an ALK gene rearrangement, a subtype first identified in 2007. This mutation causes the ALK gene to fuse with another gene (EML4), creating an oncogene that drives uncontrolled cell growth.

WATCH: What It’s Like To Get Molecular Testing for Lung Cancer

Over the years, Legasse says he has been treated with multiple generations of ALK inhibitors—Crizotinib, Brigatinib, Alectinib, Lorlatinib—and is now enrolled in the Nuvalent 655 clinical trial.

The Nuvalent 655 clinical trial is ongoing and compares neladalkib, an ALK inhibitor designed to cross the blood-brain barrier and avoid neurological side effects, with alectinib, a current standard first-line ALK inhibitor.

Clinical trials like this one offer patients with metastatic disease access to promising new therapies.

SurvivorNet offers patients and their caregivers a helpful guide to clinical trials. These trials can give patients access to incredible new therapies, or what some would call “tomorrow’s medicine,” today.  If you’re looking for a clinical trial, check out our SurvivorNet Clinical Trial Finder.

WATCH: What to Know Before Enrolling in a Clinical Trial

Legasse says one of the biggest lessons he’s learned since his diagnosis is the importance of accepting help. As a teen and young adult, he tried to project toughness and independence, even on the hardest treatment days.

“I had a ‘tough guy’ mentality from about 15 to 25 years old, where I was never willing to show any vulnerability or lack of independence,” he said.

“It took me years to finally not be ashamed of asking for help…You need a whole team to take on cancer.”

To manage the emotional weight of living with stage 4 cancer, Lagassee leans heavily on physical activity—especially running. Exhausting his body helps quiet his mind and ease the anxiety that can surface during ongoing treatment.

“I like to exhaust myself physically to slow down my mind from overthinking,” he explained. “I usually go for a run or workout, but I also find relaxation in reading, journaling, and meditation,” Legasse said.

Coping With Your Mental Health After a Diagnosis

According to Mental Health America, “56% of adults with a mental illness receive no treatment, and over 27 million individuals experiencing a mental illness are going untreated.”

While millions of people have unmet mental health needs, the need for mental health resources is even greater among cancer patients and their families.

Research published in Epidemiology and Psychiatric Sciences found that “35 to 40 percent of cancer patients have a diagnosable psychiatric disorder,” and the number of people experiencing mental health challenges is “higher among cancer patients with advanced stages of cancer and in palliative care settings.”

WATCH: How Genetic Testing Can Help Determine the Right Form of Mental Health Treatment.

Dr. Asher Aladjem, a board-certified psychiatrist at NYU Langone, tells SurvivorNet, “Anxiety is a protective and normal kind of symptom.”

“Sometimes the anxiety gets to the point that things stand in the way of the scan or whatever the test is, and people avoid it and run away from it. Treating the anxiety allows for the completion of the workup or the treatment or whatever the situation may be in a much more effective way,” Dr. Aladjem said.

Dr. Alagjem encourages patients to advocate for their mental health. He reminds us that even if mental health services are not offered while undergoing physical treatment for a diagnosis, patients can still ask their care team about them.

“We are trying to advocate for patients to be able to get the services that they need with whatever support they may need – whether it’s medications or therapy or nursing staff,” Dr. Alagjem added.

Understanding Lung Cancer and Why It’s Hard to Catch Early

Lung cancer forms when cancer cells develop in the tissues of the lung. It is the second most common form of cancer and the leading cause of cancer deaths in both men and women in the U.S., SurvivorNet experts say. It’s “completely asymptomatic,” says thoracic surgeon-in-chief at Temple University Health System Dr. Joseph Friedberg.

“It causes no issues until it has spread somewhere. So, if it spreads to the bones, it may cause pain. If it spreads to the brain, it may cause something not subtle, like a seizure,” Dr. Friedberg adds.

WATCH: Detecting lung cancer in the absence of symptoms.

Scans such as X-rays can help doctors determine if a shadow appears, which can prompt further testing for lung cancer.

Lung cancer often doesn’t cause symptoms until it has already spread outside the lungs, according to SurvivorNet’s experts.

There are two main types of lung cancer, which doctors group together based on how they act and how they’re treated:

Non-small cell lung cancer (NSCLC) is the most common type and makes up about 85% of cases.
Small cell lung cancer (SCLC) is less common, but it tends to grow faster than NSCLC and is treated very differently.

Some people with lung cancer may experience symptoms such as:

• A cough that doesn’t go away, that gets worse, or that brings up bloody phlegm
• Shortness of breath
• Fatigue
• Chest pain
• Hoarse voice
• Appetite loss
• Weight loss

If you are experiencing these kinds of symptoms consistently, contact your doctor for further tests.

Advancements In Lung Cancer Treatment

Lung cancer treatment is still evolving, offering the promise of hope for people living with this type of cancer. Research presented at the 2024 American Society of Clinical Oncology (ASCO) showed that (generic name: durvalumab) (brand name: Imfinzi), a type of immunotherapy drug, could reduce the risk of death for patients with limited-stage small cell lung cancer (LS-SCLC) by 27 percent.

The study demonstrated that the use of Imfinzi improved overall survival and progression-free survival (the time a patient lives without their disease getting worse) in patients.

“SCLC is one of the most aggressive types of lung cancer. The ADRIATIC trial is a landmark study and provides a new standard of care with the addition of immunotherapy for patients with early-stage SCLC who are being treated with the goal of curing their cancer,” said Dr. Lauren Byers, thoracic section chief in the Department of Thoracic-Head & Neck Medical Oncology at the University of Texas MD Anderson Cancer Center in Houston.

Dr. Byers pointed out that Imfinzi helped patients live for years compared to many other treatment approaches, where the benefits were measured in months.

WATCH: Understanding Immunotherapy in Lung Cancer.

Another treatment option that has shown great promise is the drug Rybrevant, which is approved by the U.S. Food and Drug Administration for non-small lung cancer (NSCLC) and has a specific genetic mutation your doctor can identify through testing.

“When a patient comes in, we immediately sequence the tumor. We are doing panels that might include three, four, or 500 genes, the ones that are most likely. Some sort of next-generation approach is the best standard of care these days – it has to be done,” Dr. Herbst explains.

The active ingredient in Rybrevant is amivantamab-vmjw. It belongs to a class of drugs known as biologics, which are made from living cells.

The drug works like a guided missile, finding and sticking to the bad cancer cells. It targets and attaches to two specific proteins in cancer cells, disrupting their growth signals and activating the immune system to fight the cancer.

Once it finds its target, it blocks the signals the cells need to grow and spread. This stops the cancer from worsening and helps patients feel better for longer.

Rybrevant is different from older cancer treatments because it is a targeted drug therapy. It doesn’t just attack all rapidly dividing cells like traditional chemotherapy does. Instead, it goes after the cancer cells with the mutation it was designed to treat while avoiding the healthy surrounding cells. This means it can be more effective and might have fewer side effects than other treatments.

WATCH: Imfinzi offering hope to patients.

Lorlatinib and crizotinib are other lung cancer treatments known as tyrosine kinase inhibitors. These drugs target ALK, a signaling protein inappropriately present in the tumors of about five percent of patients with NCSLC.

“It is encouraging that the upfront benefits of lorlatinib over crizotinib continue for several years in more than half the patients. It is also encouraging that patients receiving lorlatinib had much fewer incidences of brain metastasis, which can be devastating,” Dr. Leslie Busby, an oncologist at Rocky Mountain Cancer Centers, told SurvivorNet.

Five-year PFS, or the percentage of patients who lived five years without any evidence of cancer growth or death, was 60% among patients who received lorlatinib compared to only 8% among patients who received crizotinib—an absolute difference greater than 50%.

Coping With Chemotherapy Lung Cancer Treatment

Lung cancer often doesn’t cause symptoms until it has already spread outside the lungs. Doctors may suspect lung cancer after seeing a shadow on a routine chest X-ray that requires further evaluation.

Once a lung cancer diagnosis is confirmed, it’s important to find out whether the cancer has spread. Depending on the part of the body being scanned, additional scans may include a CT scan, PET scan, or MRI.

The PET/CT scan combines two imaging tests in one. CT stands for computed tomography. It uses X-rays to take pictures of the body from many different angles.

PET is an acronym for positron emission tomography. It uses a radioactive form of sugar that cancer cells absorb more than healthy cells, helping to distinguish healthy cells from cancer. A PET scan can help determine the extent of the cancer’s spread and its stage before treatment.

WATCH: Understanding PET and CT Scans.

A scan of the chest, abdomen, pelvis, and brain to see if the cancer has started to spread outside of the lung.

Treatment varies depending on the type and stage of cancer you have. If the cancer is local — meaning just in the lungs — surgery may be an option. However, if cancer has spread to the lymph nodes, a combination of radiation (use of X-ray-like beams focused on cancer cells to kill them) with chemotherapy, followed by immunotherapy (a treatment method where the immune system is re-engineered to target cancer cells and kill them), may be the best option.

Once the cancer has spread outside of the lungs, chemotherapy and/or targeted drugs are used to control its growth as much as possible.

Surgery is more optimal for early-stage lung cancer, meaning the cancer has not spread beyond the lungs. For more advanced stages of lung cancer, adding chemotherapy and other treatment methods may be ideal.

Chemotherapy and Lung Cancer

Chemotherapy is often recommended in patients with high-risk features such as tumors > 4cm or in poorly differentiated tumors. There are other factors your clinical team will also consider when deciding whether chemotherapy is right for you.

Chemotherapy alone used to be the mainstay of treatment for stage 4 lung cancer. It is often used with other treatment options, such as immunotherapy, radiation therapy, or targeted medications. Chemotherapy is important in stage 4 cancer because often, more localized treatment options, like focused radiation or surgery, are no longer possible due to the extent of the disease and how much it has spread to other parts of the body (also called metastasis).

WATCH: How targeted therapies can be used for advanced lung cancer.

Systemic treatment of the body with chemotherapy is helpful to slow the progression of further growth of the primary cancer, prevent future metastasis, and relieve symptoms associated with existing tumors. However, chemotherapy works by killing all cell types, healthy or cancerous, that are multiplying quickly, so it does have significant side effects for the healthy tissue.

Some patients may also be considered for other therapies, including the targeted agent osimertinib and the immunotherapy drug atezolizumab. These drugs are very different from chemotherapy and are often much better tolerated. However, to receive these drugs, the tumor must test positive for certain biomarkers that allow these drugs to be effective. Genetic testing helps distinguish specific biomarkers in cancerous tumors and determine effective treatments.

How Molecular Testing Helps Lung Cancer Patients

Lung cancer treatment has seen notable progress, partly because of molecular testing and profiling. This type of testing helps better understand specific genetic alterations and mutations that drive the growth, development, and progression of cancer cells. Some of these molecular characteristics can be targeted using precise and effective new therapies to improve patient outcomes. Ultimately, understanding the molecular profile of each person’s cancer allows oncologists to use customized and personalized treatments.

RELATED Next-Generation Sequencing in Lung Cancer

There are several next-generation sequencing (NGS) tests you may encounter, depending on where you are getting treatment and what you are getting treatment for. Here are some of the common ones currently on the market:

• FoundationOne®CDx looks at 324 genes in solid tumors and says results can take up to 12 days. Test results include microsatellite instability (MSI) and tumor mutational burden (TMB) to help inform immunotherapy decisions.
• OmniSeq Insight provides comprehensive genomic and immune profiling for all solid tumors. It looks for 523 different genes. Test results include microsatellite instability (MSI) and tumor mutational burden (TMB), as well as PD-L1 by immunohistochemistry (IHC).
• Cobas EGFR Mutation Test v2 identifies 42 mutations in exons 18, 19, 20, and 21 of the epidermal growth factor receptor (EGFR) gene. It is designed to test tissue and plasma specimens with a single kit, allowing labs to run tissue and plasma simultaneously on the same plate.

Questions for Your Doctor

If you find yourself diagnosed with lung cancer and are concerned about the long-term impacts, here are some questions you can ask your doctor.

• Has my cancer spread to other parts of the body?
• Based on my cancer stage, what are my treatment options?
• What are the side effects of my recommended treatment?
• Are there ways to help minimize the effects of treatment?
• How long will I be unable to work or carry out my daily activities?
• What financial resources are available to get the treatments I need?

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