How to Judge the Significance of Mesothelioma Research News

It is easier than ever for mesothelioma patients and caregivers to learn about the disease and its treatment options.

As soon as researchers publish a scientific discovery, all kinds of websites cover the news — often with eye-catching headlines and an uplifting tone.

In many cases, even the academic sources put a positive spin on their findings so they can attract more attention.

Researching a topic as complicated as asbestos-related cancer is hard. By keeping the following three key questions in mind, you’ll be able to put what you read in perspective:

  • Is this really about mesothelioma?

  • Were there any real patients involved?

  • How much did this actually help people?

General Science vs. Mesothelioma Research

The word “cancer” refers to more than 200 different diseases. There is no single cause of cancer, and there is no one treatment that works on all types of cancer.

When you see a research article, first ask yourself, “Is this really about mesothelioma?”

I read about interesting discoveries in cancer science every day, but only a small fraction of that information is useful for people facing mesothelioma. It’s tough because mesothelioma is so rare.

Most cancer researchers focus on more common diseases such as breast cancer or prostate cancer. Treatment that works on these diseases is distinct from mesothelioma treatment.

Each type of cancer responds differently to drugs and requires surgeons with different specialties.

Focus on Research Involving the Right Type of Mesothelioma

Mesothelioma itself falls into two main categories — pleural and peritoneal — which usually involve varying treatment plans. A patient’s treatment options also depend on the cancer stage and cell type.

Be suspicious of any website that talks vaguely about a “cure for cancer.” Even if researchers discover a cure for one type of cancer, nothing can cure all types of cancer.

However, there are some cases where mesothelioma research overlaps with other research.

Some lung cancer treatments, such as the immunotherapy drug pembrolizumab (Keytruda), show promise for pleural mesothelioma.

Another example is the hyperthermic intraperitoneal chemotherapy (HIPEC) procedure, which is used on ovarian cancer and peritoneal mesothelioma.

Laboratory Research vs. Clinical Trials

Let’s say you find a research article and confirm it is relevant to mesothelioma. The next question to ask is, “Were there any real patients involved?” Laboratory experiments are a great start, but they are not enough to prove a treatment really works.

Or as a doctor might say, it’s a long way from the laboratory bench to the patient’s bedside.

Three key terms to learn are “in vitro,” “in vivo,” and “clinical trial.”

In Vitro Research

“In vitro” is Latin for “in glass.” It refers to an experiment conducted in a test tube, a petri dish or anywhere else outside of a living creature.

Researchers often test drug compounds on mesothelioma cells grown in a lab. But even if a drug works in this setting, that does not mean it will work in a patient’s body. The drug might be too toxic for humans, or it might get broken down by the body before it ever reaches the cancer.

In Vivo Research

“In vivo” is Latin for “in life.” It refers to an experiment conducted with a living creature — usually lab mice.

You might come across the term “mouse model.” This means the researchers put mesothelioma cells into mice and then tested a treatment on them. Mice and humans are types of mammals, so our organs and tissues respond somewhat similarly to treatments.

Testing treatments on mice is more useful than experimenting in a petri dish. However, there is no substitute for a clinical trial involving human patients.

Clinical Trials

A clinical trial is a research study patients can volunteer for. Experimental treatments have to pass through certain phases before the U.S. Food and Drug Administration approves them.

  • Phase I trials involve a small number of patients to make sure the treatment is safe.

  • Phase II trials test the treatment on a larger group of patients to see if it works.

  • Phase III trials compare a group of patients receiving the experimental treatment to a group receiving standard therapy. This is the only way to prove whether the new treatment actually improves health care.

How to Understand Treatment Outcomes

Nonscientists who summarize medical research articles sometimes misinterpret clinical trial data.

Unfortunately, drug manufacturers also have a financial incentive to present trial results in a positive light. Knowing the following vocabulary words will help you keep statistics in context.

  • Median: The number in the middle of the results.

  • Overall Survival: How long patients live after treatment. A median overall survival of 20 months means about half of patients lived shorter than 20 months and about half lived longer.

  • Progression-Free Survival: How long it took for tumors to grow back.

  • Survival Rate: The percentage of patients who survived for a certain length of time. A one-year survival rate of 30 percent means 30 percent of patients were alive one year after treatment.

  • Complications and Adverse Events: Treatment side effects. Researchers usually report what percentage of patients experienced severe problems or died because of treatment.

  • Quality of Life: How patients feel. Sometimes a treatment can reduce patients’ symptoms even if it doesn’t extend their survival. Other times a treatment may help patients live longer without making them feel better.

Be a Practical Reader

The last question to ask yourself about any research you read is, “How much did this actually help people?”

It’s a great thing when doctors can help mesothelioma patients live longer and feel better. Thanks to researchers’ hard work and patients’ participation in clinical trials, many people experience much better outcomes from mesothelioma treatment than they would have 20 years ago.

But mesothelioma remains an aggressive and incurable disease. When you read about experimental treatments, focus on the facts.

Always examine what kinds of patients are eligible and what risks are involved. And if a treatment increases median survival by a few months, that’s a measurable improvement, but it is not appropriate to call it a miracle cure.

Your Doctors Have the Final Word

Medical research is difficult to read because it is meant for doctors. Researching on your own is good, but talking to an experienced mesothelioma specialist is essential.

Respect the expertise of those conducting the research and treating the patients.

Keytruda Helped Mesothelioma Survivor Take His Life Back

Pleural mesothelioma survivor Randy Boudreaux struggled to catch his breath a year ago when he made the roundtrip walk to the mailbox at the end of the driveway.

It felt like a marathon.

Today he walks the whole neighborhood briskly for a mile or two with his wife Jeanette and their dog Brandy, enjoying the scenery like never before.

Life has changed significantly in a year. Keytruda changed it.

“I’m doing really well right now, just living my life,” Boudreaux told Asbestos.com from his home in Carriere, Mississippi. “I’m fortunate we found something that worked. This Keytruda changed everything for me.”

Keytruda, the brand name for pembrolizumab, is an immunotherapy drug still not approved by the U.S. Food and Drug Administration (FDA) for the treatment of mesothelioma.

However, Keytruda shows remarkable promise for mesothelioma patients who are able to obtain it.

Boudreaux, 70, is the latest example.

Success Is Building with Keytruda

Mesothelioma survivor Walter Merth of Philadelphia had a similar experience in 2016, staging a significant turnaround with Keytruda after chemotherapy failed him.

Former President Jimmy Carter brought considerable attention to Keytruda in 2015 when he credited the drug for stopping the melanoma cancer that had spread to his brain.

The FDA approved the use of Keytruda in 2016 for non-small cell lung cancers that included a particular mutation targeted by the drug.

And at the American Society of Clinical Oncology convention earlier this month, one study showed patients survived longer if they used Keytruda instead of chemotherapy.

“He just looks so much healthier now, and all his tests are coming back better,” Jeanette said. “Sometimes when we’re walking together, I have to ask him to slow down so I can keep up. It’s pretty remarkable. We’ve got hills here, too. We get back to the house and he’s not even breathing hard anymore.”

Boudreaux started taking Keytruda almost a year ago, replacing the chemotherapy that was no longer working.

Finding Hope at Ochsner

When Boudreaux was diagnosed with mesothelioma in 2014, he was not a surgical candidate because of a previous surgery for non-small cell lung cancer.

He had a piece of lung removed the year before on the opposite side of the chest from where the mesothelioma was found.

When Boudreaux’s local oncologist struggled to treat him, he turned to Ochsner Medical Center 80 minutes away in New Orleans.

Mesothelioma specialist Dr. Robert Ramirez was waiting.

It was Ramirez who arranged the availability of Keytruda through the FDA’s Expanded Access program, also known as compassionate use.

Treatment now includes a 30-minute infusion every 21 days — which is done closer to home — and a scan at Ochsner every three months.

“I sure hope this keeps up, but Dr. Ramirez says if it stops working we’ll find something else,” Boudreaux said. “I think everyone there is real pleased, and a little surprised, at how well this is working for me.”

A Real Turnaround

Walking across the room is no longer a problem, which it was a year ago.

Food tastes good again, which it didn’t after so many rounds of chemotherapy. He has regained almost 20 pounds he had lost.

Boudreaux looks healthy and happy.

“People look at him now, and don’t even think there is anything wrong with him,” Jeanette said.

He has regained an interest in the insurance agency he ran for 30 years, but turned over to his sons when he first got sick.

Randy Boudreaux with grandchildren

Pleural mesothelioma survivor Randy Boudreaux with two of his grandchildren.

Boudreaux spends considerable time outdoors, often trying to do too much. His pace slowed recently for a few days, but only after twisting a knee trying to chase a snake out of the backyard, another sign of his renewed vitality.

He laughed about that setback.

“I’ve had worse problems,” he said.

A Family History of Cancer

Boudreaux was diagnosed with kidney cancer almost 20 years ago, fortunate that it was discovered by accident and removed before it spread.

His mother died of cancer at age 49. His sister died of cancer at 67. His brother died young, too.

Boudreaux knew the odds were against him, even before he was diagnosed with mesothelioma.

“I’ve been living on borrowed time, but I’ve never looked at this cancer like I was dying. Never looked at it like this was the end,” he said. “I just saw it as something else that needed to be fixed. Sure, I was upset about getting it, but I was prepared to fight it. You have to stay positive, and I’m very encouraged about what’s going on now.”

Spousal Support Has Been Key

It certainly helped he had Jeanette alongside him. The two are about to celebrate their 33rd wedding anniversary.

Jeanette was the one who researched extensively every option he had.

She helped connect him to Ochsner. She was the one guiding him through every awful side effect of chemotherapy and the one paying attention at every doctor’s appointment.

“She’s not like a home nurse. She’s a home doctor,” he said. “I couldn’t have made it through this without her.”

Although there is no cure for pleural mesothelioma, and he already has far exceeded the typical survival expectation, Boudreaux knows there are no certainties.

“You can’t worry about what might happen. My blood work now is coming back better than it has in 20 years. I’ve been very fortunate,” he said. “This stuff is working now. And one day they might have a cure for all these things.”

Can Chronotherapy Improve Mesothelioma Treatment?

The science of chronotherapy generally involves helping people maintain a healthy sleep schedule.

Some researchers believe biological clocks may also hold a key to optimizing chemotherapy.

“Chronochemotherapy” is an experimental technique that aligns treatment with the circadian rhythm of cancer cells. It could make chemotherapy for mesothelioma more effective while also reducing drug side effects.

Every cell has a biological clock that determines when it is most and least vulnerable to DNA damage. The biological clocks of cancer cells are often out of sync with the rest of the body’s circadian rhythm. Exploiting this misalignment may be a way to make chemotherapy more effective.

Chronochemotherapy is not a new idea, but recent advances in technology have brought scientists closer to unlocking its potential.

Circadian Rhythm and Cancer

Every cell in the body has its own biological clock. The brain keeps all these cellular clocks synchronized by releasing hormones.

These biological clocks regulate the body’s circadian rhythm, which affects the way it works at different times of the day.

Your circadian rhythm helps you wake up in the morning and fall asleep at night. At the microscopic level, the circadian rhythm tells cells when to focus on different activities.

Cancer researchers are particularly interested in the timing of DNA repair. Many chemotherapy drugs are designed to damage cancer-cell DNA, causing cancer cells to break down.

But if chemotherapy is given during the time when cancer cells are repairing their DNA, the drugs are not as effective.

Chronochemotherapy: Timing Treatment Right

Chronochemotherapy is based on the idea that giving chemotherapy at certain times could improve outcomes for cancer patients.

So far this approach is not proven to increase drug effectiveness, but some research shows it can reduce side effects.

Researchers have known for decades that cancer cells often have altered circadian rhythms. For example, tumor cells may be 12 hours off, doing their nighttime activities during the day and their daytime activities at night.

Because of their altered biological clocks, cancer cells often perform their DNA repairs at a different time than the rest of the body.

The goal of chronochemotherapy is to administer cancer drugs when the body’s healthy cells are repairing their DNA but cancer cells are not.

Timed this way, chemotherapy drugs should do more damage to cancer cells and less collateral damage to healthy cells.

A 2017 study in Radiation Oncology reported a phase II trial of chronochemotherapy for patients with nasopharyngeal carcinoma. The experimental group experienced fewer side effects than patients who received standard chemotherapy, but overall survival was the same for both groups.

New Research Tools Reveal Workings of Biological Clocks

Scientists have been aware of the circadian rhythm for a long time, but it is difficult to figure out exactly how biological clocks work.

Chronochemotherapy researchers believe this is why the technique is not yet reliable.

In May 2018, scientists at the University of North Carolina reported a new research method that could lead to a breakthrough. Researchers were able to measure DNA-repair activity over a whole 24-hour period in mice treated with the drug cisplatin.

Cisplatin is one of the most common chemotherapy drugs used in mesothelioma treatment. This research should help specialists understand how cisplatin affects mesothelioma cells at different times in their circadian rhythm.

Remaining Challenges of Chronochemotherapy

Doctors have pointed out practical issues with scheduling chemotherapy according to a tumor’s broken clock.

What if it turns out the best time to give chemotherapy is in the middle of the night? Disrupting a patient’s sleep schedule could do more harm than good.

One proposed solution is to design an automatic chemotherapy pump patients can take home with them. If chemotherapy needs to be administered in the middle of the night, patients could be connected to the pump when they go to bed. Then the pump would deliver the drug at the set time.

Another solution under investigation is to use a special drug to reset the biological clocks of cancer cells. This way, doctors would be able to make chronochemotherapy as convenient as possible for the patient.

Researchers around the world are exploring these possibilities, so it is only a matter of time before mesothelioma specialists understand the impact chronochemotherapy can have.

Mesothelioma Survivor Still Relishing Graduation Day

Six years after aggressive surgery for pleural mesothelioma, Kay Kilpatrick-Simmons watched proudly as granddaughter Claire crossed the stage at Marymount High School to accept her diploma last month.

Mission accomplished.

The congratulatory hug was emotional — in more ways than one.

Kilpatrick-Simmons, 73, already has beaten the odds, using her goal-setting power of positive thinking, family support and the expertise of Dr. Robert Cameron, mesothelioma specialist and senior professor of thoracic surgery at UCLA Medical Center.

“One of my goals was to be around long enough to see the grandkids graduate,” Kilpatrick-Simmons told Asbestos.com. “This was the second one. And it means a lot. Sure, I’d love to see a couple more.”

Clayton, 12, and Anna, 6, are next in line.

“I like to set goals and focus on them,” she said. “Mental attitude plays into this. How much? I’m not sure, but I won’t watch sad movies, for example, only happy stuff, comedies. I stay away from anything that might be depressing. I try not to even think about this disease unless I have a scan coming up.”

Dr. Cameron Makes A Difference

Kilpatrick-Simmons sees Cameron every three months for checkups at UCLA, where she first underwent the aggressive pleurectomy and decortication (P/D) surgery in 2012.

The post-surgery survival has been a fight that tested her determination. The radiation treatments caused pneumonitis, a serious inflammation of the lung that required hospitalization.

Extensive chemotherapy caused kidney failure and another trip to the hospital.

She rebounded both times and watched her oldest grandchild (Scott) graduate two years ago.

She also underwent cryoablation, a novel treatment at UCLA which involved killing recurrent mesothelioma tumor cells with liquid nitrogen.

Recent scans show no new tumor growth, but catching her breath after a short walk still can be difficult. She travels a lot by wheelchair.

She has met with a nine-year mesothelioma survivor who also is a patient of Cameron’s and doing equally well. Together, they have become an inspiration to many, far exceeding the typical expectations with pleural mesothelioma.

“Dr. Cameron has been great. He’s always encouraging, motivating me,” Kilpatrick-Simmons said. “He’s like a cheerleader almost, raising my spirits each time I see him. A lot of people didn’t think I would make it this far. He did. He always did.”

Her biggest supporter throughout this fight has been husband Cliff, who is 13 years older but has served as her primary caregiver. He fractured his hip a year ago but still insisted on accompanying her to a checkup.

They laugh about it now.

“Somebody said we looked like a train going into the doctor’s office, each of us getting pushed in a wheelchair,” she said. “But he’s better now, doing everything again. He’s been unbelievably supportive.”

Mesothelioma Diagnosis Was Stunning

Kilpatrick-Simmons spent much of her career in health care — first as a clinical nurse before moving into administrative work.

She was stunned by the original diagnosis, which came not long after she and her daughter finished a two-day, 40-mile walking marathon.

It was the seventh time they had done it together, an annual breast cancer awareness event.

But something felt different that last time. It seemed more grueling than usual.

“I used to walk five miles a day, worked out with a trainer, kept in good shape. But now I’m pretty much sedentary,” she said. “My legs are still great, but breathing can be a problem when I try to exercise. If not for that, I might still be dancing.”

Staying Strong and Positive

Instead of exercising now, Kilpatrick-Simmons keeps a daily journal, usually documenting the day’s events each evening.

“I write down what I’m grateful for, things as simple as going out to dinner with my husband, watching the birds out back on the fence, visiting with friends, going to graduation,” she said. “It keeps me positive. Back when I was healthy and working, I was too busy to stop and appreciate the little things that I was grateful for.”

She is especially grateful for finding Cameron, whose office is three miles from her home in Los Angeles.

There are patients who travel from around the country for his expertise in treating mesothelioma.

She found him around the corner.

And despite the disease, the tone of her voice is consistently positive. Instead of bemoaning her fate, she talks about new doors it opens.

“It makes you appreciate things. Seeing life from a wheelchair is an interesting human study from my perspective,” she said. “People either don’t see you, or they are totally sweet. When I go to a school function, I could not be treated better if I was a queen. It’s wonderful.”

Her weekend after Claire’s graduation last month was typical.

“It was a weekend of parties. My daughter and her husband hosted a big barbecue. It was a lot of fun,” she said. “It may have been a small graduating class, but there was a lot of celebrating. I used to love being part of those big crowds. It felt really good to be there.”

Pioneer in Asbestos Exposure Awareness

One of the first people to sound the alarm on the dangers of asbestos was a female factory inspector from the United Kingdom.

In 1898, Lucy Deane Streatfield wrote a report on the adverse health effects of working with asbestos in factories.

Her report was the first of its kind in the United Kingdom — and among the first in the world — to uncover the risks of asbestos exposure. Today, we know asbestos causes mesothelioma cancer and other serious illnesses.

Streatfield’s work to reveal the dangers of asbestos were the humble beginnings of the workers’ rights revolution. Her bravery paved the way for other inspectors to advocate for safer working conditions.

She was one of the first female factory inspectors in the U.K., and the first to raise concerns about the hazards of asbestos exposure.

Her report spoke of the “easily demonstrated dangers to the health of the workers.”

Streatfield and other factory inspectors noticed “cases of injury to bronchial tubes and lungs medically attributed to employment of the sufferers.” These health effects caused the inspectors to pay closer to attention to the ways asbestos was processed in factories.

It also motivated inspectors to view asbestos fibers under a microscope.

“The evil effects of asbestos dust have also instigated a microscopic examination of the mineral dust by Her Majesty’s Medical Inspector,” Streatfield said. “Clearly revealed was the sharp, glass-like jagged nature of the particles.”

Streatfield’s report was featured in the larger, annual report for Her Majesty’s Chief Inspector of Factories. At the time, her warnings were ignored.

Later Reports Confirmed Streatfield’s Findings

In reports published between 1906 and 1910, other female factory inspectors discussed concerns over asbestos exposure.

  • In a 1906 report, the inspectors said working with asbestos caused more injury to workers than any other dust-producing work in factories.

  • In 1911, a study conducted on rats proved asbestos causes fibrosis of the lungs, or asbestosis. The study was led by J.M. Beattie, a professor at the University of Sheffield.

  • By 1927, a U.K. doctor confirmed asbestos exposure causes asbestosis in humans. Dr. Ian Grieve conducted a study on asbestos factory workers in Armley, England. He reported asbestosis among workers who manufactured asbestos mattresses for use on trains.

Workplace Regulations Implemented

These reports painted a bleak picture of the effects of working at an asbestos factory at the turn of the 20th century.

The evidence became undeniable. In the early 1930s, the United Kingdom began regulating asbestos in the workplace.

New policies were created to reduce dust at work. Factories had to install ventilation systems. They also had to provide protective clothing, face masks and other safety equipment.

These efforts drastically reduced asbestos exposure in U.K. factories.

Streatfield’s groundbreaking work went largely unnoticed at the time. But, today, we celebrate her efforts and acknowledge the important role she played in changing the course of history.