Clinical Trials Offer Hope for Patients
- Alex Parra, 23, is an inspirational social media influencer who beat stage 2 bone cancer and stage 4 lung cancer. He credits clinical trials for giving him hope after other treatment options proved ineffective and doctors gave him only a 10 percent chance of survival.
- 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.
- For help finding a clinical trial that’s right for you, try our easy-to-use Clinical Trial Finder.
Alex Parra, 23, is an inspirational stage 4 lung cancer survivor who never ceases to amaze. He’s still riding an emotional high after completing a marathon on just one leg after losing the other one from bone cancer as a teenager. Now in survivorship, he’s a staunch advocate for clinical trials and the hope they give to patients seeking treatment options.
Read More@alex1leg Replying to @Bartholomeus13 ♬ original sound – Alex1Leg
Parra’s need for a running blade stems from his bone cancer diagnosis several years ago. Nagging knee pains for the teenage athlete helped kickstart his journey to a confirmed diagnosis.
“I had stage 2 bone cancer, otherwise known as osteosarcoma, that came back as stage 4 lung cancer when I was 17. I was given three months to live and a 10 percent chance of survival. I was declared terminal,” he said.
@alex1legYou are capable of so much more than you ever couldve imagined♬ original sound – Alex1Leg
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.
Parra tried chemotherapy for treatment, but chemo proved ineffective, leaving him with the option of knee replacement or amputation, the V Foundation reports. Parra added the cost of treatment also weighed heavy on his family.
“When I got my diagnosis, I knew we could never afford it. The never-ending hospital bills, the constant chemo, it was already enough,” Parra explained in his TikTok video.
After his amputation, Parra had to learn how to walk again with a prosthetic leg. He also endured additional chemotherapy until completing treatment in May 2017.
WATCH: Understanding Stage 4 Lung Cancer
A few months later, his cancer returned as stage 4 lung cancer after spots on his lungs were detected on imaging scans. In stage four lung cancer, cancer has spread to other regions of the body, which is called metastasis. Stage four is the most advanced cancer stage. 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.
“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 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.
WATCH: Immunotherapy and Lung Cancer
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.
Expert Resources on Clinical Trials
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 is also providing 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 the study is 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 trials 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 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 for 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.