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.

Can Gardening Be Dangerous to a Mesothelioma Patient?

Along the usual stresses of determining next steps after a mesothelioma diagnosis, you may wonder if you can still participate in your favorite hobbies and activities.

For most people, the answer is yes, but this may come with a warning.

If your favorite activity is gardening, you may need to take a few extra precautions while tending to your plants.

This should reduce the risk your hobby contributes to infections and other mesothelioma treatment complications.

Gardening is a popular and healing activity for many people. In fact, it’s so popular, many hospitals and cancer centers now have healing garden programs.

If you want to participate in a local healing garden or just putter in your own backyard, learning to do so safely after mesothelioma is an important first step.

Immune Function Matters

Neutrophils are part of the immune system. When their levels are abnormally low, this is referred to as neutropenia.

This form of decreased immunity is a sign you need to be extra careful to minimize your risk of cuts, scrapes and other potential sources of infection.

Some mesothelioma therapies cause neutropenia, and your doctor will track numbers of these cells with blood tests. Most health care providers do not consider neutrophil counts between 1,000 and 1,500 a cause for alarm.

However, when counts drop below 1,000, and especially when they drop below 500, risk for infection increases. At these levels, even normal bacteria from your mouth and digestive tract can cause serious infections.

All people in cancer treatment need to take steps to minimize risk of infection, but this is especially important if your neutrophil counts are below 1,000.

If your counts are below 500, ask your doctor if you need to avoid gardening or other activities.

Safe Gardening Is Important

The key to safe gardening during mesothelioma treatment is to protect yourself from things that may increase infection risk. Protecting against sun exposure is important, too.

  • Invest in a pair of thick leather gloves to protect your hands against dirt, rocks, sharp sticks, thorns and other items that can puncture your skin.

  • Wear long sleeves, long pants and closed-toed shoes to protect against cuts, scrapes and sun exposure.

  • Wear a high-quality sunscreen on exposed skin. Some chemotherapy treatments make skin extra sensitive to sun exposure.

  • Leave the thorny plants — roses, raspberries, cacti and other prickly greenery — to someone else.

  • Make sure your gardening tools are clean and properly sharpened to avoid needing extra pressure when cutting and digging.

  • Wash hands for 20 seconds with plain soap and running water after gardening and frequently throughout the day.

Additional Common-Sense Steps

Stay hydrated and pace yourself. Having liquids handy will ensure you don’t run dry. Be careful not to get any soil in your beverage, which will help reduce infection risk, too.

Pacing yourself can be a challenge. If you’re a longtime gardener, you may have expectations about how much you can get done in an afternoon.

If you’re fatigued from treatment, it may take longer than anticipated to finish your usual gardening tasks. Focus on the journey, not the end result. If you’re enjoying the fresh air, you may worry less about how much you get done.

Bathe or shower daily, especially if you’ve been digging in the dirt that day. Use plain, unscented lotion after bathing to avoid dry, cracked skin. Do this after each hand washing, too.

Avoid dusty, lightweight products, such as vermiculite, mulch and zeolite. Your lungs may be extra sensitive due to treatment. Avoiding excess dust will minimize irritation so you can enjoy gardening. Consider a dust mask, too.

Wearing glasses, sunglasses or work goggles will protect your eyes from irritation and potential infection. Also avoid manure-based products or other soil conditioners made of animal waste.

Check in with Your Health Care Team as Needed

If you are unsure whether a particular activity is safe for you, ask your doctor or nurse for guidance.

If you have neutropenia and develop a fever, call your doctor right away to let them know.

With a few precautions, you can spend time outdoors, enjoy a favorite activity and keep yourself protected against infection and sun exposure after a mesothelioma diagnosis.

5 Things to Do After a Mesothelioma Diagnosis

A mesothelioma diagnosis can be frightening, stressful and overwhelming.

What should I do first? What type of treatment is going to be recommended? How will I manage the financial impact of this disease? What will my family do?

These and many other questions may be running through your head. This makes it hard to take positive steps to cope with the diagnosis.

Focusing on concrete actions to take now can help you get organized and move forward.

Learn About the Disease

Understanding how mesothelioma affects your health and quality of life is an important first step. Some people know exposure to asbestos is the main cause of mesothelioma but not much beyond that.

There are several types of mesothelioma, and the two most common, which account for nearly all mesothelioma diagnoses in the United States, are pleural and peritoneal.

Approximately 20 percent of mesothelioma cases are peritoneal and up to 75 percent are pleural.

The other two mesothelioma types are pericardial and testicular. These mesotheliomas are rare compared with pleural and peritoneal disease. Together they account for less than 5 percent of mesothelioma cases in the U.S.

Ask your doctor about the type and location of your mesothelioma. What are the organs or parts of your body affected by the disease? How will the disease’s location impact your ability to live your life? What symptoms should you expect?

For example, if your disease is pleural mesothelioma, it may affect your ability to breathe deeply. You may want to ask for a referral to a respiratory therapist. Gentle stretching, movement and breathing exercises can improve breathing.

Peritoneal mesothelioma can contribute to GI symptoms, such as feeling full early and inability to eat your favorite foods. A registered dietitian can develop an eating plan to meet your needs and keep you strong for treatment.

Get a Second Opinion from a Specialist

Many cancer treatment facilities do not have a mesothelioma specialist on staff. This doesn’t mean people should immediately go somewhere else for cancer care. It simply reflects the fact mesothelioma is rare.

Only a few oncologists are considered experts and specialists in managing mesothelioma. If your original cancer doctor does not have much experience treating mesothelioma, ask for a second opinion.

Do not worry about offending your doctor. Oncologists are used to consulting with others. They also request second opinions from other doctors.

Your cancer center can help you put the pieces in place to get a second opinion. This might include sending scans, medical records and blood tests to the consulting physician.

With this information, the consulting physician may be able to provide additional insights on the best mesothelioma care for your situation.

Talk to a Specialist About Your Diagnosis

We can connect you or a loved one with top mesothelioma doctors and cancer centers in your area.

Get Help Now

A mesothelioma specialist can be an important link to learning more about clinical trials, too. A specialist may be conducting a study.

An experienced mesothelioma doctor also may have more awareness of ongoing trials appropriate for you to consider.

Seek Social and Emotional Support

If you’ve been diagnosed with mesothelioma, emotional support should be an important component of your care. You can rely on family and friends for support. People who love you want to help.

However, having a rare disease can feel isolating. Sometimes, talking to an oncology social worker or therapist will give you a place to talk openly about your fears without worrying about how your family may react.

Talking face-to-face with someone may not feel right for you. But an oncology social worker can be a great advocate. They can put you in touch with local, regional and national resources for coping with your disease.

Mesothelioma support groups are another option for people newly diagnosed with the disease and for people who have been living with it for some time. Mesothelioma is rare, so your cancer center may not have one. An online support group is another option. This can allow you to connect with people for support and information from a patient perspective.

Prepare Your Body for Treatment

According to a March 2018 article published in The American Journal of Industrial Medicine, taking advantage of supportive therapies reduces distress for mesothelioma patients. Physical therapy and a healthy diet were singled out for their positive effects on patients.

These results support that, regardless of your treatment plan, you can take steps to keep your body strong and weather the physical challenges ahead.

Mesothelioma treatment is more of a marathon than a sprint. You may undergo surgery, radiation therapy and chemotherapy. Sometimes these treatments are delivered together. Other times one may follow another.

Respiratory therapists are an important part of a comprehensive mesothelioma care team. If you’re experiencing shortness of breath or other breathing difficulties, ask for a referral to a respiratory therapist.

Many patients and family members don’t realize, even after breathing difficulties occur, there are steps to improve breathing function. Only a qualified respiratory therapist can develop a plan to best meet your needs.

Keeping your body strong with good nutrition is another important part of mesothelioma care. You need fuel to heal, maintain immunity and rebuild your body during and after treatment. Food is that fuel.

Make eating well a priority. If you are losing weight without trying or having problems eating enough, ask to see a dietitian. Your doctor or nurse may tell you to simply eat more.

A dietitian can take a comprehensive diet history, estimate your unique protein and calorie needs, and learn about your likes and dislikes. This information will be used to create a nutrition plan best suited to you.

Learn About Your Financial and Legal Options

In March 2018, The American Journal of Industrial Medicine published an article on the psychological and emotional distress mesothelioma patients and people exposed to asbestos experienced.

Mesothelioma patients who had access to clear and accurate legal information on the possibility of compensation had less distress.

When faced with a life-threatening disease, financial security can help you cope. Knowing you have financial security is important for you and your family.

Inspirational Mesothelioma Survivor Starts Hospice Care at Right Time

Rich and Aline DeLisle made the difficult decision recently to stop Rich’s cancer treatment and begin home hospice care — the final stage of his journey with pleural mesothelioma. Then, something unusual happened.

The party started.

Sons and daughters, in-laws, grandchildren and great grandchildren, nieces and nephews, and friends he hadn’t seen in years, all began descending upon their Central Florida home.

They came from across town, across the state, and across the country to celebrate the life of this gregarious, fun-loving, family patriarch who rarely met anyone he didn’t like.

Rich and Aline have kept the door open.

“Instead of people coming for a funeral, we invited everyone to come now and see him before he passes — not after — when they can still enjoy each other’s company,” Aline said. “And it’s been wonderful. We never thought so many would show up. He hasn’t smiled and laughed this much in quite a while. It’s been crazy around here.”

Enjoying Everyone’s Company

The refrigerator is overflowing with food and drink.

Children are swimming in the backyard pool. The driveway is filled with cars that have spilled onto the street.

Overnight guests are sleeping everywhere, including couches and floors. It looks more like a hostel than a single-family home.

There is life — not death — in the air.

“We didn’t invite anyone here to sit around and mope over me,” Rich said. “I have to get ready for the party tonight.”

Rich travels mostly with help in a wheelchair now. He needs oxygen to breathe easier. He takes breaks from the pool-side chatter, excusing himself from the conversation before lying down in his room to rest.

The hospice nurse has left for the day. A minister has arrived to chat with Rich, who speaks a little softer and slower than before but with the same conviction and sharp wit he had six years ago when first diagnosed. He engages visitors and tells great stories like he always did.

The night before, he was playing the bongos with the kids around the pool. Everyone was enjoying themselves.

He repeated his familiar line with a smile:

“I may have mesothelioma, but mesothelioma doesn’t have me.”

An Inspiration to Many Others

For several years, Rich has been an inspiration to others who have been diagnosed with this incurable disease.

He has helped mesothelioma survivors through his story on Asbestos.com, his Facebook posts, his involvement in support groups, and through private email exchanges with patients.

He and Aline are well known for their energetic optimism at Moffitt Cancer Center in Tampa, Florida, where he underwent his aggressive pleurectomy and decortication procedure six years ago. He returned regularly for checkups and treatment.

“The care I received there was nothing but the best,” Rich said. “I can’t say enough good things about the way I was treated.”

Rich was told in 2012, at his original diagnosis, that he could expect to live six to nine months. He is now in his seventh year.

He beat the odds, lasting longer than anyone but he and Aline expected.

Always a spur-of-the moment couple — married for more than 46 years — they never stopped living.

Instead of slowing down after his diagnosis, Rich and Aline accelerated the pace of the things they wanted to do together.

They had five children, 20 grandchildren and nine great grandchildren.

They wanted to see them all.

Rich DeLisle by his pool

Rich DeLisle was diagnosed with pleural mesothelioma in 2012. His story and fun-loving personality has inspired many other survivors.

Don’t Stop Living

They obtained United States passports and traveled extensively. They bought annual passes to Walt Disney World.

They took a Disney cruise, where Rich found himself on stage in a gold disco costume doing Karaoke.

The day after his original diagnosis of mesothelioma was reconfirmed at Brigham and Women’s Hospital in Boston, he and son Eric went to Fenway Park to see their first Red Sox-Yankees game together.

He later joined Eric on a business trip to Las Vegas, where he spent much of his three days at the Bellagio Resort & Casino, turning up more than his share of aces.

For the first few years, the scans at Moffitt showed no new tumor growth, lifting their spirits each time. He was unusually healthy.

He and Aline took regular weekend trips to Cedar Key, a laid-back coastal Florida community where they fished and stayed at the same quaint motel next to the marina.

The couple who ran the marina motel were two of the recent visitors to the DeLisle home, good friends who wanted one more laugh with Rich and Aline.

They all told fishing stories that had grown with time.

The Choice for Hospice Care

Despite the years of optimism, the mesothelioma tumors eventually did return — with a vengeance.

The past nine months have been especially difficult, trying to fight off the cancer and the side effects of new therapeutics.

After traditional chemotherapy failed to help, Rich tried the experimental transarterial chemoperfusion, which identifies and attacks the specific blood vessels feeding the tumors.

He tried an immunotherapy and listeria vaccine combination.

Nothing worked consistently.

He and Aline were discussing a return to Tampa to enroll in one last clinical trial when Rich waved it off. He told Aline he wanted to call hospice instead, ending any further treatment.

“It’s just been too much on her, trying to do everything. My body is gone. I was tired of being sick,” he said. “I couldn’t take any more of those treatments. We’ve cried together enough. It was just time for something else.”

Hospice arrived the next day with everything he needed to be more comfortable. Aline started calling friends and family, making them aware of the decision.

“I just said ‘Would you rather everyone come see you after you’ve passed or now when you can still appreciate they’re here?” Aline said. “I think he’s really enjoyed having everyone here now and all that’s going on.”

Raising Awareness of Anxiety in Cancer Patients

May is Mental Health Awareness Month, which is an opportunity to learn more about mental health issues in our society and to reduce the stigma surrounding mental health.

While many advances have been made in the funding and treatment of mental illness in the United Stated, and today, there is considerably less stigma related to having a mental illness, there is still a long way to go.

I’ve worked as a mental health counselor for over 20 years in oncology clinics and hospitals where I assessed and counseled cancer patients and their caregivers. Some patients were initially puzzled when their oncologist referred them to me for assessment because they worried their doctor thought they were crazy.

I got used to explaining that no one thought they were crazy. Instead, I explained there are many common emotional and psychological challenges when battling a cancer diagnosis, and their oncologist wanted them to be aware of those challenges. In addition, their doctor wanted them to understand the resources available to them if they begin to experience some emotional distress.

There is a wide range of completely understandable emotions that go along with any diagnosis of cancer. Mesothelioma is known to be incurable and we know cancer patients struggle even more emotionally and psychologically when their prognosis is poor.

Anxiety Common Among Cancer Patients

Cancer patients, including those with mesothelioma, often report symptoms of anxiety and depression, and decades of research in the field of psycho-oncology support this fact. Because of the prevalence of emotional distress (mostly symptoms of anxiety and depression), many cancer treatment centers now employ counselors to help their patients deal with those issues.

Research indicates that 10-35 percent of cancer patients are diagnosed with anxiety. The variation in the data most likely stems from differences in how researchers define and measure anxiety in their study.

Anecdotally, I have found that a vast majority of cancer patients experience uncomfortable symptoms of anxiety at some point during their treatment and into survival.

The most common symptoms of anxiety cancer patients reported to me include: Uncontrollable and intrusive worrying about the unknown and of death, panic symptoms when faces with certain procedures or treatments, poor sleep, agitation and irritability.

While anxiety is common and completely understandable in mesothelioma patients, counseling, anti-anxiety medications or both can treat it.

Most oncologists are aware of the prevalence of anxiety among their patients. They regularly prescribe medications on a short-term basis for their patients who have anxiety or sleep problems because of the condition.

Counseling focuses on raising awareness of anxiety triggers, monitoring worrying thoughts and teaching coping skills to reduce anxiety.

Managing Depression

Depression is slightly less common than anxiety in cancer patients. There are many potential contributors to depression when someone has cancer. These can include:

  • Side effects of chemotherapy or other treatment medications

  • Fatigue

  • Loss of ability to engage in regular activities or work

  • Changes in relationships

  • Fear of the unknown, pain or death.

Depression, much like anxiety, is also manageable with medication, counseling or a combination of both. Oncologists routinely assess for and treat depression with anti-depressants.

Many mesothelioma patients are overwhelmed with emotional distress when they are diagnosed. Some may develop anxiety or depressive disorders during or after their treatment. It is important to continue to talk about the prevalence of emotional or psychological issues in cancer patients.

That will help patients and loved ones stay vigilant about these issues, feel comfortable seeking treatment if needed and know where to look for mental health care.

5 Research Breakthroughs Mesothelioma Patients Should Know

Scientists around the world are striving to develop more effective treatment options for mesothelioma.

The asbestos-related cancer has a five-year survival rate of less than 10 percent. Most patients live around one year after diagnosis.

Developing better treatments to control the cancer is necessary. Researchers are working on a number of options.

Some of these options involve new immunotherapy drugs, innovative methods of drug delivery and different combinations of treatments.

This research is being conducted at some of the nation’s best cancer centers. For example, Penn Medicine’s Abramson Cancer Center is developing photodynamic therapy for mesothelioma, while Stanford University School of Medicine is working on stem cell therapy.

These promising breakthroughs don’t happen overnight. It takes years of research and development to get these treatments tested and proven through clinical trials.

It also takes participants. The more mesothelioma patients who volunteer to join clinical trials, the closer we come to controlling or one day curing the cancer.

Immunotherapy for Mesothelioma

In June 2017, promising results from a phase II clinical trial were published by French researchers. Out of 108 mesothelioma patients, approximately half responded well to combination therapy with nivolumab (Opdivo) and ipilimumab (Yervoy).

That high response rate is unusual in mesothelioma research.

Researchers were so shocked by the results that they designed a phase III trial to continue testing the drug combination in a larger group of patients. It could become the first immunotherapy regimen approved by the U.S. Food and Drug Administration (FDA) to treat mesothelioma.

Pembrolizumab, otherwise known as Keytruda, is another immunotherapy drug showing promise in mesothelioma research.

In a 2017 study by Penn Medicine, tumors shrank in 14 of 25 pleural mesothelioma patients taking Keytruda. The overall survival of the patients was 18 months, compared to 12 months for patients treated only with chemotherapy.

Using Nanocells to Deliver Treatment

Australian researchers introduced a new therapy for mesothelioma in 2015 that put one patient nearly into full remission.

Partial or full remission is rarely reported among people with mesothelioma, which indicates the potential of this research.

The study involved nanocells, which are derived from bacteria and modified to serve as a delivery vehicle for anti-cancer treatments.

The anti-cancer treatment used in this phase I study involved microRNA, which is genetic material similar to DNA. The microRNA used in the study stimulates the immune system to attack mesothelioma tumors.

Researchers did not expect to see such a positive response in the phase I study. Research is continuing into further phases.

Photodynamic Therapy

Clinical trials are investigating photodynamic therapy for mesothelioma in combination with surgery.

The preliminary results indicate photodynamic therapy can kill remaining cancer cells left behind after surgery. This can reduce the risk of local cancer recurrence and help patients live longer.

Researchers at the Abramson Cancer Center have led important studies on photodynamic therapy for mesothelioma in recent years. They are currently recruiting for a phase II clinical trial combining photodynamic therapy with surgery and chemotherapy.

Targeting Mesothelin

Mesothelin is a protein and antigen made by mesothelioma cancer cells. Researchers are developing drugs that target mesothelin to kill mesothelioma cells and leave healthy cells unharmed.

Mesothelin-targeting drugs under development include:

Stem Cell Vaccine for Mesothelioma

The Stanford University School of Medicine is developing a stem cell vaccine as a treatment option for mesothelioma. Their research is currently being conducted on mice.

The hope is stem cells may be used to prevent and treat mesothelioma.

People with a history of asbestos exposure might be able to take the vaccine to prevent mesothelioma. The vaccine might also help mesothelioma patients live longer by controlling cancer growth.

While many of these breakthroughs are in early phases of testing, the research conducted today is paving the way for treatments of tomorrow.