2-Time Cancer Survivor Who Focuses on Optimism
- Alex Parra, 24, is an inspirational social media influencer who beat stage 2 bone cancer and stage 4 lung cancer. Upon self-reflection, he explains how concerning it was learning he had stage 4 lung cancer despite not experiencing symptoms upon his diagnosis.
- Lung cancer is commonly already in stage four when it is first diagnosed because its symptoms are hard to detect in the early stages of the disease. Treating lung cancer depends on the cancer’s location and how advanced it is.
- Parra found hope through a clinical trial after other treatment paths proved ineffective. Clinical trials help doctors better understand cancer and discover more effective treatment methods. They also give patients a chance to try a treatment before it’s approved by the U.S. Food and Drug Administration (FDA), which can potentially be life-changing.
- Despite the great benefits of clinical trials, they also come with risks (like potential side effects that are not fully understood yet). People interested in participating in clinical trials must first talk with their doctor to see if they would be a good fit.
View this post on InstagramRead More“Trying new activities as an amputee is always daunting, but never impossible,” Parra shared in a recent post, where he’s seen balancing on one foot while bouncing a ball on a racket. “One of the most important pieces of disability advocacy is just showing up and giving it a shot.”Parra’s feed is filled with moments that many might overlook—like walking down the aisle of an airplane or navigating everyday tasks with a prosthetic leg. But behind the snapshots is a story of grit and survival that began in his teens.
Diagnosed with stage 2 bone cancer as a teenager, Parra underwent an above-knee amputation and months of chemotherapy. He emerged from treatment determined to reclaim his life.
According to the National Cancer Institute, osteosarcoma is the “most common type of bone cancer.” Symptoms of this type of cancer include bone or joint pain, swelling over a bone, or an unexplained bone fracture. Treatment options include surgery, chemotherapy, targeted therapy, radiation, and samarium Sm 153, which helps alleviate bone pain.
But just a year later, during routine remission scans, doctors found four suspicious spots on his lungs.
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“I was diagnosed with stage 4 lung cancer in 2019, and the way that I found out, it could have all been avoided,” Parra said in a candid video titled, “Cancer was so nice I had to get it twice.”
He explained the emotional rollercoaster of those early scans: “I got my CT scans, and I have four dots in my lungs, which could or could not be cancer. I get asked, do I want to do surgery to make sure that it isn’t cancer, or do I want to wait and see if it is cancer. I’m not just going to sit here and let those four dots sit in my lungs that could potentially be cancer.”
After surgery, doctors removed three of the four spots—but one remained elusive. “Three months go by, and I’m ready to graduate and get my diploma. Then I get a phone call saying that I need to come back,” he recalled. “So, I go in and I’m told that I have stage 4 lung cancer with about three months left to live and a ten percent chance.”
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Parra believes that the one spot left behind may have been the source of his second diagnosis. “Maybe it’s not, but maybe it is,” he said. “The scariest part about this is not that I got lung cancer or that I had three months left to live, it’s the fact that I was just living such a normal life, completely healthy, without even knowing that I had stage 4 lung cancer in my body—and that for me is the scariest part.”
Today, Parra is thriving. He’s a vocal advocate for disability inclusion, cancer awareness, and clinical trials. His story is a reminder that survivorship isn’t just about beating the odds—it’s about rewriting them.
Helping Patients Understand Lung Cancer Risks
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- Lung Screening With Low-Dose CT Should Happen For All
- Combining Therapies What Does It Mean For Lung Cancer Patients?
- How To Deal With A New Metastatic Lung Cancer Diagnosis
- A New Development in the Fight Against Lung Cancer: Explaining the Liquid Biopsy
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%.
How Clinical Trials Gave Alex Added Hope
“The issue I had when I was declared stage 4 was that there weren’t any guarantees of treatment that would cure me. Chemo didn’t work the first time; I didn’t want to do radiation because that was a risk, and it would make the tumor worse. My only options were clinical trials,” Parra said.
Memorial Sloan Kettering Cancer Center had a clinical trial that used immunotherapy, giving Parra hope. He participated in immunotherapy treatment, which uses the body’s immune system to fight cancer cells.
Clinical trials help doctors better understand cancer and discover more effective treatment methods. They also give patients a chance to try a treatment before it’s approved by the U.S. Food and Drug Administration (FDA), which can potentially be life-changing.
Parra says clinical trials are worth exploring, especially if other treatment options are limited.
“I’d say it was worth it. It was a lot better than chemo. I didn’t lose my hair, which was great, and it helped make me cancer-free,” Parra said.
What to Consider When Clinical Trials Are an Option?
Within the U.S., all new drugs must go through clinical trials before the FDA approves them. Although the rewards of clinical trials can be great, they also come with risks. Talking to your doctor about this before enrolling in a trial is important. Some risks to consider include:
- The risk of harm and/or side effects due to experimental treatments
- Researchers may be unaware of some potential side effects of experimental treatments
- The treatment may not work for you, even if it has worked for others
Dr. Beth Karlan is a gynecologic oncologist at UCLA Health. She says the goal with clinical trials is to advance cancer research to a point where the disease becomes akin to diabetes, where it becomes a manageable condition.
“Clinical trials hopefully can benefit you, but they also provide very, very vital information to the whole scientific community about the effectiveness of these treatments,” Dr. Karlan said.
“They can be life-saving. We’ve seen many in the last few years of children and adults who have participated in trials and have had miraculous results,” Dr. Karlan continued.
WATCH: Clinical trials can be life-saving.
Before you enroll in a trial, you must be allowed to read the consent documents thoroughly and to ask any questions you may have. The documents will likely contain the following:
- The purpose of the research
- Any risks and benefits expected from the research
- Information about procedures that may cause discomfort (like frequent blood tests)
- Any alternative procedures the patient might consider instead
- How the patient’s information will be kept private
- How long is the study expected to take
- A form confirming you are participating in research voluntarily
- Whether any compensation or additional medical care is available if some sort of injury occurs
- The patient’s rights (like the right to stop research in the middle of the trial)
- Contacts for any patient questions
Patients are allowed to walk away at any time during the trial. Understanding your rights as a voluntary patient is important before you participate in a clinical trial, and understanding that the treatment may not work is also crucial.
Do Clinical Trials Cost Participants Anything?
Clinical trials may also have no extra cost for the participants, as the study’s sponsor may pay for the treatment and any additional care. Some sponsors even pay for travel to and from appointments or treatment centers. Patients should ask what will be paid for before signing up to be part of a trial.
The Affordable Care Act also mandates that health insurance companies cover routine patient care costs while people are enrolled in clinical trials.
The ‘Placebo’
During the treatment of an experimental drug in a clinical trial, while some participants receive the real thing, others do not. These participants receive a placebo.
The placebo is “an inactive substance or other intervention that looks the same as and is given the same way as an active drug or treatment being tested. The effects of the active drug or other intervention are compared to the effects of the placebo, as defined by the National Cancer Institute.
In some cancer clinical trials that are “randomized,” patients who enroll are randomly assigned to receive either a placebo or the new experimental drug being studied. If the clinical trial is “double-blinded,” that means that neither the patients nor the doctors running the clinical trial know who’s in which group. This is an important part of a clinical trial design because it safeguards against bias and the possibility of skewed results.
It’s important to know that getting zero treatment isn’t usually the reality of the “placebo arm” anyway.
Instead, when patients with life-threatening cancers enroll in randomized clinical trials, the two groups are often broken into the new, experimental drug and a “control” group that receives the “standard-of-care” treatment.
Treatments considered standard of care are those that experts accept as the go-to treatment for specific cancers. Standard-of-care, in other words, is the most commonly used treatment.
In many cases, it might involve a combination of chemotherapy, surgery, or radiation, but not always.
How to Find a Clinical Trial
If you want to participate in a clinical trial, your first step should be to talk with your doctor. They can address many of your initial questions and help you determine if you would make a good participant.
Another crucial part of clinical trials is finding the right one for you. SurvirorNet has a resource to help with this called the Clinical Trial Finder.
The portal provides resourceful information to more than 103,000 active clinical trials. You can research this tool for yourself or someone else based on a few simple questions about your condition and location.
Learn more about SurvivorNet's rigorous medical review process.
