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Lung cancer clinical trials

Not only did a clinical trial save her life, but her family came back asking about clinical trials for others

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I had a patient in my clinic in Mississippi with widespread lung cancer, says lung cancer specialist Raymond U. Osarogiagbon, MD, Chief Scientist for Baptist Memorial Health Care in Memphis, Tennessee. “I talked to her about the clinical trial we had and she was interested, but she needed to come back with her family.”

“There were — I kid you not — 30 people that came with her and I sat them down and explained why the clinical trial was a good idea for her.”

“It was time well spent. Because not only did she get on the clinical trial. Not only did she stay on the clinical trial on a treatment that turned out to be the new standard treatment for this terrible cancer she had. But since that time, she and her family have come back with not only gratitude, but also when others have been diagnosed with the cancer, they have come back asking if there was a clinical trial!”

A wonderful 2-minute video from the National Cancer Institute.

"I am on my second life on this earth. This is what science has done for me."

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“When I was given my diagnosis of advanced lung cancer, they told me I had less than six months to live and to get all my affairs in place,” Barry Nelson remembers. “I was a smoker for 37 years. My mother, she died from cancer. My mother’s sisters and her mother died from cancer. I really was quite arrogant and prideful and not taking the time to realize what I was doing to myself.”

“I prayed to God and He said, you’re going to die but you’re not right now. I went through a number of different treatments, not getting the results they were looking for.”

Having exhausted his treatment options, “I was one of the first lung cancer patients to participate in a clinical trial with immunotherapy. Immediately when I had my first infusion, it was just a whole new feeling. And I knew that something was different.”

“As a cancer survivor for the last 10 years, I’m not on any type of medication or treatment and I am on my second life here on this earth. I hope that I’m a better person. This is what science has done for me.”

A 4-minute video from the National Cancer Institute.

"We are dealt a deck of cards in life. And it is about how to play our cards that matters.”

At the start of the COVID-19 pandemic, Sheena began experiencing terrible ear pain. Doctors couldn’t figure out what was causing her pain, until her primary care physician did a chest X-ray and noticed a mass in her lung.

She was diagnosed with advanced lung cancer, which came as a shock since she had no known risk factors. Biomarker testing showed that it was EGFR-positive non-small cell lung cancer. Her oncologist suggested a clinical trial might be the most appropriate treatment option for her at the time and she agreed to participate.

Sheena now takes a pill once a day which keeps her cancer under control. The clinical trial is highly monitored, and Sheena is in close contact with her physicians so they can address any side effects that might occur.

She is passionate about sharing her experience with other Black lung disease patients to raise awareness of the importance of self-advocacy, education and making informed care choices.

“As my father used to say, we are dealt a deck of cards in life. And it is about how to play our cards that matters. I don’t want anyone facing lung disease to miss out on receiving the best care for them, which may be a clinical trial,” says Sheena.

Source: “The Importance of Representation in Lung Cancer Clinical Trials” by Carly Ornstein on the American Lung Association website (2022)

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“We do clinical trials in order to understand processes that are involved in lung cancer, whether that’s the treatments that are effective or whether they’re safe,” says Manish Patel, D.O., and oncologist and researcher at the University of Minnesota.

“It really is the clinical trial that determines how we take care of patients. All of these clinical trials are involved in developing the best therapy for patients with lung cancer.

Without clinical trials, we really don’t know what the best treatments are or how to choose the treatment for a patient with with lung cancer.

So they’re incredibly important.”

A 1-minute video from You and Lung Cancer

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Lung cancer clinical trials are research studies in which people volunteer to help test new treatments, procedures or ways to diagnose or screen for lung cancer. Clinical trials help researchers develop better tests and treatments and are especially important in lung cancer.

What is a clinical trial? Why are clinical trials need in lung cancer?
What are pre-clinical studies? Who is in charge of clinical trials?
Who approves treatments after clinical trials?
What are Phases 1, 2, 3, 4 of a clinical trial?
Who can be in a lung cancer clinical trial? How can I join a lung cancer clinical trial?
What is informed consent? Can I leave a clinical trial after I join?
What are the benefits and risks of taking part in a clinical trial?

A 6-minute video from You and Lung Cancer

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Researchers need different people to take part in different clinical trials. For example, a particular trial may need volunteers with a certain type or stage of lung cancer, or of a certain age, sex or ethnicity.

The benefit of taking part in a clinical trial is that it allows you to try a drug treatment or procedure that is not yet available to the public. The risk is that you may experience unwanted side effects. The trial may benefit your health or it may not, but the knowledge that researchers gain will benefit people in the future.

Ask your doctor about joining a clinical trial. You can ask any time before or during treatment. You can leave a clinical trial at any time and you will still receive treatment for your lung cancer unless you want to stop that.

A 6-minute video from You and Lung Cancer and developed by A Breath of Hope Lung Foundation and Mechanisms in Medicine Inc. with support from pharmaceutical companies.

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Reason one.  You have a chance to receive treatment based on the latest research that is not yet available to others. Clinical trials are based on the best knowledge available for your kind of cancer.

Reason two. You’ll get high-quality care and be carefully monitored throughout the study.

Reason three. You add to the world’s knowledge about cancer and help to improve cancer care for future generations. 

A 2-minute video from the National Cancer Institute

It is no secret that there is a lack of diversity in clinical research. With fewer than five percent of all adults diagnosed with cancer participating in trials, the adverse effects of this disparity are magnified when it comes to the treatment and care of minority patients.

The disparities in clinical trials significantly impact the efficacy of treatment for underrepresented groups. This impact will only increase as the trend of personalized medicine continues and treatments like immunotherapy are explicitly tailored to one’s genotype. Without sufficient data regarding a patient group, doctors have limited ability to predict how they may respond to treatment.

For example, a found that some African Americans have lung tumors with a different gene expression than those found in white patients. This could impact the efficacy of specific therapies.

Source: “Lack of Diversity in Clinical Trials: A Patient’s Guide” (Lung Cancer Foundation of America)

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“You can imagine the shock of my family when we all learned that I had stage four lung cancer,” says Sheena. “My decision to participate in a clinical trial came as a result of my conversation with the oncologist.”

“Part of the challenges in the African American community is that we don’t have a lot of data because many African Americans don’t participate in clinical trials. I said yes, one of the things that I would love to share, with me being an African American woman, is how we respond to health care. I know a lot of it has to do with trust and believe me, I get that.”

“But when you think about your health, you read in Scripture that your body is your temple, so taking care of it and making sure that we find the right providers that can help us is very critical.”

A 2-minute video from the American Lung Association.

Between 2009 and 2019, 21 clinical trials led to FDA approval of 12 oral chemotherapy agents for the treatment of Non–Small Cell Lung Cancer. Eleven of these trials reported on at least one race. In these 11 clinical trials, which had a total of 3,811 participants, 56% of the participants were Asian, 42% were White, and less than 2.5% were Black or Hispanic.

Source: “Cancer Disparities and Black American Representation in Clinical Trials Leading to the Approval of Oral Chemotherapy Drugs in the United States Between 2009 and 2019. “ 

W=White 85.6%, B=Black 8.3%, A=Asian 4.8%, H=Hispanic 1.1%, AI=American Indian and Alaskan Native 0.2%

Among 93 clinical trials for breast, colorectal, lung, and prostate cancers from 2004 to 2017, lung cancer studies had the highest proportion of White and Asian participants and the lowest proportion of Black, Hispanic, and American Indian/Alaskan Native participants.

Source: Racial and Ethnic Disparities Among Participants in Precision Oncology Clinical Studies (2021)

The disparities in clinical trials significantly affect the efficacy of treatment for under-represented groups. This impact will only increase as the trend of personalized medicine continues and treatments like immunotherapy are explicitly tailored to one’s genes. Without sufficient data regarding a patient group, doctors have limited ability to predict how they may respond to treatment.

For example, a 2017 study found that some African Americans have lung tumors with a different gene expression than those found in white patients. This could impact the efficacy of specific therapies.

In the U.S., patients who enroll in cancer treatment trials tend to be younger, male, and white. This lack of diversity in clinical trials can lead to a cycle where new treatments are most effective for the most represented group. The results are not generalizable or misapplied to certain populations and perpetuate health disparities in the lung cancer continuum.

Source: “Lack of Diversity in Clinical Trials: A Patient’s Guide” (Lung Cancer Foundation of America)

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“Clinical trials play a big role in our medical decision making. Simply put, you need to be represented for us to make a good decision based on your particular cancer and how it works in your body,” says Janine Harewood, M.D., an oncologist in Ft. Myers, Florida.

Some reasons why you should participate in clinical trials: you get first access to drugs which are not available in the general population as yet, you’re more likely to get frequent health checkups just because you need to be closely monitored, and it’s an opportunity to make a difference and help other patients gain from the information that we learn.”

“But for every good thing, it does come with risks. It’s a clinical trial because we don’t know everything. We’re trying to assess how the drug works, if it does work or if there any side effects.” 

“The most common fear I hear from patients is that they won’t get the treatment when they’re on trial. Clinical trials today are not like they were. Now when clinical trials are designed, there’s the trial drug and then there’s the standard of care, not a placebo.”

“Clinical trials are always an option. Even if you’re not confident right now about going into a clinical trial and  you’re comfortable with your treatment, there’s no harm in seeing what your options are.”

“I encourage you in the same way I would encourage my family. Please open yourself to the idea of a clinical trial and at least make sure that you get all the information so that you can make an informed decision.”

A 4-minute video from You and Lung Cancer.

Not finding out about clinical trial opportunities. Many people of color don’t find out about clinical trial opportunities because their doctors don’t present them as an option. This can be a major barrier, because many people don’t know how to ask about, research, or find clinical trials on their own without a doctor’s support.

Overly strict eligibility criteria. Every clinical trial has guidelines about who is eligible to join to protect the safety of trial participants and ensure that they share certain characteristics, such as cancer type or previous treatments. But overly strict eligibility criteria have prevented many people from being able to enroll in clinical trials by excluding diseases that disproportionately affect people of color, such as high blood pressure (hypertension), diabetes, HIV, hepatitis B, and hepatitis C.

Travel and transportation. Clinical trial participants often have to travel to a clinical trial site for regular in-person visits which can be time-consuming and expensive. If you lack transportation, can’t take time off from work, or have family caregiving responsibilities, it can be more difficult to participate in a trial.

Out-of-pocket costs. Clinical trials usually pay for anything that is part of the trial, such as the study treatment you’ll receive, while health insurance usually covers routine care costs. But trial participants may have extra, out-of-pocket expenses such as parking, gas, taxis, airfare, and lodging that are not covered by the trial or health insurance. People may also face challenges with insurance coverage during the trial or lost income from time taken off work.

Lack of trust in the healthcare system. People of color may have personally experienced or observed discrimination in a healthcare setting. Or they may have received inferior care; research shows that Black and Hispanic women are less likely than white women to receive breast cancer treatment that adheres to medical guidelines.

All of these barriers contribute to the lack of diversity among clinical trial participants. But the barrier with the biggest impact may be that people of color simply aren’t being told about clinical trial opportunities or asked to participate. “If it’s not presented to you, how are you going to participate?” asks Eleanor M. Walker, MD, director of breast radiation oncology for the Henry Ford Health System in Detroit, Michigan.

Read more at “Why are people of color underrepresented in clinical trials? in breastcancer.org’s “Special Report: Increasing Racial Diversity in Breast Cancer Clinical Trials.”

Questions to Ask Your Doctor about Treatment Clinical Trials


If you are thinking about taking part in a clinical trial, be sure to ask your doctor, “Is there a clinical trial that I can join?” If your doctor offers you a trial, here are some questions you may want to ask, such as:

How long will I be in the trial? What kinds of tests and treatments are involved? How will the doctor know if the treatment is working? How will I be told about the trial’s results? How long do I have to make up my mind about joining this trial? Who can I speak with about questions I have during and after the trial? Who will be in charge of my care? Is there someone I can talk to who has been in the trial?

Source: “Questions to Ask Your Doctor about Treatment Clinical Trials” (National Cancer Institute)

Steps to Find a Clinical Trial

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Learn how to find the right clinical trial for you with the National Cancer Institute’s six-step guide:

Step 1: Gather Details about Your Cancer
Step 2: Find Clinical Trials
Step 3: Take a Closer Look at the Trials that Interest You
Step 4: Contact the Team Running the Trial
Step 5: Ask Questions
Step 6: Make an Appointment

A 2-minute video from the National Cancer Institute

A free, over-the-phone service that helps Black or African American (AA) cancer patients learn more about clinical trials.

The Peer Clinical Trials Support Program matches interested patients with a peer — a Black or African American cancer patient or survivor with experience participating in a cancer clinical trial. Patients have the opportunity to discuss their fears, questions, and concerns with a knowledgeable and empathetic guide, and hear from someone of a similar background who has “been there, done that.”

Source: Cancer Support Community

Learn how to find the right clinical trial for you with the National Cancer Institute’s six-step guide.

If you are thinking about joining a clinical trial as a treatment option, the best place to start is to talk with your doctor or another member of your health care team. Often, your doctor may know about a clinical trial that could be a good option for you. He or she may also be able to search for a trial for you, provide information, and answer questions to help you decide about joining a clinical trial.

Some doctors may not be aware of clinical trials that could be appropriate for you. If so, you may want to get a second opinion about your treatment options, including taking part in a clinical trial.

If you decide to look for trials on your own, the steps discussed here can guide you in your search.

The NCI’s Cancer Information Service can also provide a tailored clinical trials search that you can discuss with your doctor. To reach them call 1-800-4-CANCER (1-800-422-6237) and select option 2. This is a free service. Keep in mind that the search results do not replace advice from your doctor.

Source: National Cancer Institute (2022)

CRI Clinical Trial Finder

Our Cancer Immunotherapy Clinical Trial Finder will aid you in finding your answer to cancer. Understand the basics of cancer clinical trials, why clinical trials are so critical to our work, what things to consider about enrolling, and how to assist patients in finding clinical trials for which they may be eligible.

Source: Cancer Research Institute

Standup to Cancer

If you are a cancer patient who needs help identifying clinical trial options or needs financial assistance to attend a clinical trial, we’d like to hear from you. Our Patient Navigator can help you find the right clinical trial. We can also help you with the costs associated with participating in a clinical trial, including transportation and lodging. 

For more information, email Lazarex or to speak with a Lazarex representative, call 925.820.4517.

Source: Lazarex Cancer Foundation