What Are Clinical Trials and How Can They Advance Treatment?

COVID-19 has impacted our daily lives throughout the U.S. This previously unknown virus that has caused the pandemic we are currently in has scientists all over the world researching for a cure.

The virus is educating a lot of people about the clinical trial process. As scientists race to find a cure for this deadly virus, the process that is in place for approval for new medications, treatments, and vaccinations is being questioned. Why does it take so long? Why is participation so low?

Patients, family members, and experts who are dealing with malignant mesothelioma know that the process to improve therapy leading to a cure is slow. There are requirements as the process is rigorous with defined stages, criteria, and approvals.

One of the challenges of conducting a clinical trial is to get participation in the trial. All participation is voluntary and can be withdrawn at any time. It is estimated that less than 5 percent of all adult patients diagnosed with cancer participate in clinical trials. Some of the reasons people give for not participating are:

Lack of awareness, patients didn’t know about it.
They don’t think they qualify.
Fear and safety involved.
The inconvenience of location or added responsibilities.
Confusion over whether it is covered by insurance.

It is reported that 25 percent of cancer trials failed to enroll a sufficient number of patients, and 18 percent of trials closed with less than half the targeted enrollment.

Research from 2019 gives another perspective. The article published in the Journal of the National Cancer Institute in March of 2019 written by Unger JM, Validya R, Hershman DL, et al did a systematic review and analysis of the structural, clinical, and physician and patient barriers to cancer clinical trial participation. Their findings in a study funded by the National Cancer Institute included that:

55.6 percent of patients did not participate in a trial because no trial was available for their type or stage of cancer at their treatment center.
21.5 percent of patients were ineligible due to criteria that did not include them such as co-morbidities.
22.9 percent of patients had physician and patient related barriers, such as not being asked to participate or refusing by the patient.

As we continue to live through this pandemic and people are becoming more aware of the clinical trial process, there are reports of up to 16,000 people – mostly young – that have offered to participate in the development of a vaccine. They are volunteering to be given the vaccine and then exposed to the coronavirus as part of a study to evaluate a vaccine that is still in the experimental phase.

COVID-19 has changed our lives. Hopefully a new awareness of the opportunity to participate in clinical trials for all diseases will be one of the positive results that comes from the pandemic.

Top reasons to be seen at a Mesothelioma Center of Excellence

We always recommend that patients diagnosed or suspected to have malignant mesothelioma be seen at a dedicated Mesothelioma Center of Excellence for diagnosis and treatment by an experienced medical team.

The pandemic we are currently in has made it difficult and sometimes impossible to do this. As people all over the country follow distancing guidelines, we are realizing in our own worlds that we cannot be teachers, hairdressers, cook like chefs, do DYI projects like on TV, and we cannot treat ourselves for medical issues.

One of the perspectives we are gaining out of this pandemic is the one to respect experience. There are skill sets involved in being an expert. With experience comes relationships – respect what experience can bring to your situation.

The pandemic has allowed us to re-examine our relationships with each other and what is important to us. Caring for patients with malignant mesothelioma is complex. Everyone is different and their expectations are different.

When we slowly get back to our lives before the pandemic and start looking to our experts for care, what should that care look like?

In 2017, The John A. Hartford Foundation and the Institute of Healthcare Improvement along with the American Hospital Association and the Catholic Health Association of the United States came up with the “4Ms.” These are four evidence-based elements of high-quality care. The guidelines are aimed at treatment of the older adult, but really apply to all.

What Matters – what are the persons goals, what do they want?
Medication – what medications are necessary? How do these medications affect the person’s mobility or cognition? Is that what they want?
Mentation – is the person depressed? Are they suffering from delirium? Has their dementia been identified?
Mobility – is the person safely able to move around? Are they falling? Are they safe?

In the Mesothelioma Center that we are very familiar with, these are standards of care. When you come to a Mesothelioma Center of Excellence you will be treated by experienced professionals that have incorporated these evidence-based practices into your care – before and after the pandemic.

How Mesothelioma Patients Can Take Care of Themselves During Coronavirus

As we continue social distancing, washing our hands, and staying in our homes, a new normal is settling in. For people that are dealing with malignant mesothelioma as well as the COVID- 19 virus, day to day living can be extremely stressful during these uncharted times. What can people who have malignant mesothelioma do day to day?

Back to basics like eating right, high protein diet.
Walking daily outside if able.
Limiting your alcohol intake.
Taking your medications as prescribed.
Keeping your spirits up.
Having a routine that includes adequate sleep.
Limit your time watching the news and social media.

At times, fear creeps in for all of us. We fear what is going on around us, what is coming, when it will all end and when our “normal” lives come back. For those dealing with malignant mesothelioma either as a new diagnosis or have been living with the diagnosis, this is a particularly challenging time. An article in Psychology Today by Laura Markham PHD, “Coping with Fear in the Face of a Pandemic,” has suggestions for when worry and fear take hold of us.

Use your pause button – stop and take several deep breaths to calm your body down.
Notice what you are worried about – if it is something in the future, it might not happen and you cannot control it anyway.
Calm your mind by taking charge of your thoughts – you can handle it.
Empower yourself and your family – cultivate positivity.
Consciously choose love instead of fear.

If you are under treatment for malignant mesothelioma there could be some specific questions requiring answers. Although the focus is on taking care of coronavirus patients in most hospitals and Centers of Excellence, the mesothelioma team is still available.

Call your team. If you don’t have a dedicated mesothelioma team, reach out – the experts are available. Remember you are not alone even when it feels that way.

Balancing Mesothelioma with the Coronavirus Pandemic

When someone is diagnosed with malignant mesothelioma, the battle is both mental and physical. The symptoms are numerous and some more frightening than others. Mentally it can have an outsized effect on one’s peace of mind, affecting your physical wellbeing as well as your emotional wellbeing.

So how does a mesothelioma patient keep mind and body in sync during a strenuous time like the coronavirus pandemic?

First, look around at yourself and jot down your physical symptoms. Put factual numbers to paper. A few strategies you might consider include:

Monitor daily weight.
Monitor calorie intake if you can, or just list what you eat.
If you have an O2 sat monitor use that and record the findings.
If you don’t have an O2 sat monitor monitor, record the distance you can walk each day.

Now that really is the easier part. Mental wellbeing can be a challenge. How do you keep your head in check and not get carried away to dark thoughts and fear? If you are having a hard time being calm, there is a fair amount of advice available. Here are some different approaches:

Close your eyes, take a deep breath, and exhale slowly.
Say out loud three things you are grateful for today.
Connect with others. Talk with people you trust about your concerns and how you are feeling.
Take a break from news, including social media.

If these ideas aren’t working, contact your primary care provider and they will try to help with your physical or mental challenges at this time. Reach out to your mesothelioma team. Remember that mesothelioma patients are high risk when it comes to coronavirus and the COVID-19 virus’ related respiratory symptoms.

You are not alone. These times are uncharted territory for all of us. We can get through it with help from one another.

Minnesota Student Wins Fourth Place in Mesothelioma Scholarship Contest

Mesothelioma Help is proud to help a future physician’s assistant in Minnesota achieve her education goal by awarding her $500 as part of the annual Jan Egerton & Don Smitley Mesothelioma Scholarship contest. Sheri Sanford, a student at Normandale Community College, was awarded the fourth-place prize in the cancer organization’s national essay contest this year.

In her essay, Sheri shared her inspiration for switching gears in her career ─ going from dreams of becoming a lawyer to pursuing a master’s degree as a physician’s assistant with a focus in oncology.

In 2016, Sheri’s uncle was diagnosed with malignant mesothelioma, a rare cancer whose only known cause is exposure to asbestos. Her uncle had spent his life working in the construction industry, one of the high-risk fields for exposure. “I lost my uncle after he caught the cancer in a very advanced stage and he died in less than a year,” she explained in her essay.

Sheri’s experience inspired her to change career paths and go into medicine so she could help other cancer patients and their families. “My uncle is not just a simple statistic. He is much more than that and Stage IV Mesothelioma will not define him. The people diagnosed with mesothelioma are real loving people,” she wrote.

“Awareness about asbestos is extremely crucial for every individual to be knowledgeable of, to prevent this crippling disease or catch it in the early stages.”

About Mesothelioma

Each year, about 3,000 Americans are diagnosed with malignant mesothelioma, a deadly cancer that affects the lining of the chest cavity and lungs. The cancer is caused by exposure to microscopic asbestos fibers, which are inhaled and can lodge in the body.

For decades, asbestos was commonly used in construction, industrial and household materials. Although it is recognized as a known carcinogen, asbestos is still not banned in the United States.

Mesothelioma can develop 15 to 60 years after a person was exposed to asbestos.

About the Scholarship Contest

The Jan Egerton & Don Smitley Mesothelioma Scholarships are named after two respected mesothelioma warriors who put up a brave fight against the devastating cancer. Four scholarships are awarded each year to deserving students in universities and colleges throughout the country.

In total, $5,000 in scholarships was awarded this year to four dedicated students. Out of dozens of impressive entries, the winners were selected based on the thoughtful and heartfelt essays they wrote.

The MesotheliomaHelp.org scholarship contest is generously funded by the nationally recognized asbestos law firm of Belluck & Fox, LLP.

“We are proud to support these deserving college students in their mission to raise awareness of the dangers of asbestos and its long-term health effects,” Belluck & Fox managing partner Joseph Belluck explained. “As a law firm focused on fighting for those harmed by asbestos, we know how important it is to warn people about exposure, and we appreciate these students for sharing their personal stories and insights.”

About MesotheliomaHelp.org

Mesothelioma Help is a comprehensive resource for individuals and families who are coping with a mesothelioma diagnosis. The site connects patients and caregivers with knowledgeable medical providers, respected legal professionals and the most up-to-date information on treatment developments. Get directions to Mesothelioma Help now to learn more about mesothelioma.

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