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.

Finding Moments of Joy as a Mesothelioma Caregiver

When a loved one is diagnosed with a debilitating illness such as mesothelioma, everyday life can become full of challenges for those who care for them.

In addition to taking on the role of caregiver, you may have to take more responsibility for decision making, financial management, household chores and caring for children and pets.

Then there is the emotional turmoil that comes with the new reality: Feelings of isolation, sadness, anger, helplessness and fear. With all this going on, it is easy to believe that joy can no longer be found in life.

But no matter how challenging life may become, moments of joy are possible, and you can find them in something most of us take for granted — nature.

Tapping into Nature

Nature is all around us, but we often don’t stop to appreciate or acknowledge the vital role it plays in our physical and emotional well-being.

You do not have to travel to the Amazon rainforest to experience the wonder of nature. It can be found right in your own backyard.

When we tune in to nature, our senses of sight, hearing, smell and touch are awakened and we are open to experience pure joy.

Caregiving for a loved one with mesothelioma is never easy, but experiencing moments of joy, no matter how fleeting, can provide some valuable time away from emotional stress and help renew the energy you need to continue your vital role.

Here are five things you can do to find your moments of joy.

Use a Tree as a Meditation Focus Point

Make your way out into the backyard and find a quiet, secluded place where you can focus on nothing other than a tree in your line of sight.

Shut all thoughts from your mind as you concentrate on the smaller branches of the tree. Watch how they move as the wind blows, and listen to the rustling of the leaves.

If you are fortunate to have birds visiting, watch them as they sit on the tree. Appreciate how beautiful and unique they are and listen to their calls. Stay as long as you like, enjoying this wonderful connection with nature.

Collect Fallen Leaves

Take a walk to the park or into your own backyard. Focus on leaves on the grass. Scoop up a handful of them and note the following:

  • Color: Are they predominately green or a combination of green, red, yellow and brown?
  • Shape: Which trees did they come from?
  • Feel: Are they smooth or rough? Are there any seeds on the back of them?
  • Smell: Are they sweet-smelling or earthy?

As you answer these questions, you will feel closer to nature and be able to put worrying thoughts aside.

Take some leaves home and put them in a glass jar. Every time you look at them, they will provide a pleasant memory of the joy you felt that day.

Visit the Ocean

Go for a walk along the beach. Feel the sand under your feet and notice how the sand sifts between your toes. Walk down to the water’s edge and feel the cool wash of the waves on your feet.

Close your eyes and feel the cool ocean spray on your face — take deep breaths and fill your lungs with clean, healthy air. Find a place on the sand where you can stay dry and gaze at the vision before you.

Concentrate on the waves crashing to shore. Enjoy their rhythm as they roll up the sand and then back to the sea. Notice the foam left behind as it glistens in the sun.

Walk along the shore to a group of shells. Take a handful into your hand. Notice how varied they are. What shape are they? What color are they? Where did they come from?

Take a few shells home and display them as a pleasant reminder of the joy you experienced at the beach.

Observe Life in a Garden

Take a walk out to a garden. Sit on a comfortable chair and spend some time really looking at the abundance of nature there. If you look closely, you will see life in many forms.

On the ground there will be trails of ants carrying out their business, snails hiding in their shells, the remnants of dead flowers, splashes of color against the mulch.

Next, focus on the flowers and how many varieties there are. Note how perfectly each flower is formed and how many buds are about to open. Take a close look at the leaves and how symmetrical they are.

Close your eyes, take a deep breath through your nose and enjoy the wonderful scent of the flowers. It is the best perfume you will ever find.

Rise and Relax with the Sun

Set your alarm clock to wake up early one morning so you can experience the sunrise. As you watch the beautiful colors come into the sky, close your eyes and listen to the sounds of nature waking up around you.

At the end of day, stop whatever you are doing and make your way outside to watch the sunset. As you look up to the sky, take some slow, deep breaths. Notice how this relaxes your body and your mind.

Then focus on the sunset. See how the colors build and then fade. Watch closely as the sun disappears and darkness descends.

Your appreciation of the beauty you have witnessed will remain long after the sun has set.

How Asbestos Changed My Life

Asbestos is the stuff of nightmares, and I should know. It killed my husband, Brian.

Diagnosed with mesothelioma at age 52, he became one of hundreds condemned to death because of time spent in the asbestos mining town of Wittenoom, Western Australia.

The fact that he, his sister and their parents spent only a few short months in the town before relocating to Port Headland, Western Australia, made no difference.

Brian had 45 years of good health before the cancer struck. There was no way of stopping it.

As I struggled to come to terms with his terminal illness, I found it hard to believe asbestos was the cause. For most of my life, I’ve lived, worked and played in buildings predominantly built with asbestos without a care.

No one ever told me it was something to fear.

The shock of Brian’s diagnosis made me realize how little I knew about asbestos.

Suddenly, I needed to know what it is, where it came from and, most importantly, why it is so deadly?

My quest to find answers revealed some frightening facts about asbestos, the menace that still poses a threat around the world today.

Asbestos in Australia

Asbestos is a name given to a group of silicate minerals that occur naturally on every continent.

Consisting of magnesium, calcium and iron, types of asbestos include: Chrysotile, amosite, crocidolite, tremolite, anthophyllite and actinolite.

Australia has a long legacy with asbestos. Mining in Western Australia began in the 1930s.

Situated at the mouth of the Wittenoom Gorge, the Wittenoom mine was responsible for shipping more than 150,000 tons of crocidolite (blue asbestos) from 1943 to 1966. Blue asbestos is now known to be the deadliest of all types of asbestos.

According to experts, Australia had the world’s highest per capita use of asbestos from the 1950s to the 1980s.

Hailed as a miracle product at that time because of its remarkably high tensile strength and heat resistance, it was used extensively by the building industry in the production of a wide range of building products.

As a result, any home, school, hospital or business built during this time is likely to contain asbestos products.

Asbestos is commonly found in:

  • Cement (fibro asbestos sheeting)
  • Lagging on water pipes
  • Roofing materials
  • Floor underlays
  • Insulation
  • Piping for water supply and sewage
  • Electrical wire casings
  • Paints, coatings and sealants

It is estimated as much as two-thirds of asbestos products manufactured and installed between the 1940s and 1960s are reaching the end of their lifespan.

This is particularly concerning when it comes to fibro asbestos sheeting in hundreds of older buildings, backyard sheds and fences across Australia.

Weakened by time and the elements, the sheets can easily become friable, meaning the cement within them breaks down and is easily crumbled. Once this occurs, microscopic asbestos fibers are released into the air.

Carried by the wind, inhaling or ingesting these fibers can lead to asbestos-related diseases such as mesothelioma.

Take Precautions to Prevent Asbestos Exposure

Mesothelioma — a word I didn’t know for most of my life — is now forever on my mind.

I will never forget the pain and suffering this devasting disease caused Brian or his brave attempt to survive it. During his two years of survival, mesothelioma robbed him of everything he once enjoyed in life.

It has been almost 17 years since I became a widow. Time has eased the pain of my loss, but I still feel anger whenever I hear the word asbestos.

For me, there has been no justice for Brian’s suffering and unnecessary death. His killer is still out there, it is not going away, and its next victim could be me — or you.

This reality shows how vital it is to be aware of asbestos and take the following steps to protect ourselves and others from harm.

  • Be Aware: Make it your business to find out where asbestos may be lurking in your home and the buildings that surround you. If you are unsure about whether your home contains asbestos, call the experts.
  • Check Before You Act: Do not attempt to destroy or remove any product containing asbestos yourself. Contact an authorized asbestos abatement company to do the job safely.
  • Be Responsible: Do not attempt renovations of any kind in a home built before the 1980s. It is highly likely that it will contain several asbestos products, some of which may be in places you may not expect.
  • Be Proactive: Share your knowledge about asbestos with everyone you know. Your future health could depend on them and their actions regarding the deadly mineral.

Nurse and Mesothelioma Patient Advocate

May is Oncology Nursing Month, celebrating a profession that serves an integral part in cancer care.

Oncology nurses are essential to a patient’s cancer journey. They are there to explain a diagnosis, guide a patient through treatment, celebrate victories and offer comfort and support through the unimaginable.

The field of oncology nursing is one of the most challenging and rewarding fields in nursing. These nurses often work behind the scenes, communicating with doctors and coordinating care.

For patients battling a rare and aggressive cancer such as mesothelioma, oncology nurses play an important role in a survivorship care plan. They keep track of medical records and test results, safely administer treatments such as chemotherapy, and help patients understand complex medical terminology.

Karen Selby is a registered nurse and patient and family advocate at The Mesothelioma Center. Her extensive background includes working for a surgical oncology program at the University of Maryland Medical Center, where she assisted surgeons with lung resections, lung transplants, pneumonectomies, pleurectomies and other procedures.

As a patient advocate at The Mesothelioma Center, Selby uses that experience when working with mesothelioma patients and caregivers. For nearly 10 years, she has helped patients navigate the complicated health care system and connected them with the resources they need during their cancer battle.

Interview with Karen Selby

Q: What is your background with oncology nursing and patient advocacy?

Selby: It’s almost impossible to be a nurse and not deal with oncology in some aspect. My oncology experience started in the early 90s as an operating room first assistant nurse for a very progressive surgical oncology program at the University of Maryland.

This experience allowed me to gain knowledge in the surgical procedures associated with diagnosing and treating mesothelioma. I am a natural nurturer and enjoyed the patient care aspect of nursing. So, when The Mesothelioma Center reached out to me in 2009 to see if I had an interest in joining their advocacy program, I was very excited.

Q: When did you first get involved with helping mesothelioma patients? What drew you to this specialty?

Selby: Well, I first got involved in perioperative nursing in the early 90s. I was quickly drawn to surgery just after nursing school. After several years in the operating room, I found myself specializing in vascular and oncologic specialties.

I joined The Mesothelioma Center as a Patient Advocate in 2009 and was immediately excited to assist patients and caregivers with this rare cancer. My experience allowed me to know firsthand the importance of choosing the right specialist in order to receive best treatment options.

Sometimes this isn’t easy to understand, so sharing my experience with patients allows me to help them be the most educated and informed when making the choices that are right for them.

Q: How does your background prepare you for supporting mesothelioma patients and caregivers?

Selby: Because my background is multifaceted, being a true advocate for a new patient or caregiver comes easy. I am naturally drawn to someone in need and want to walk with them on their journey to help make their life a little easier.

That may mean explaining the process that they will be experiencing during a future procedure, helping them research and choose a clinical trial, assisting with scheduling an appointment to see a specialist, or bringing like patients together in our unique support group.

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Q: What should patients expect when they first connect with you?

Selby: I ask lots of questions. I want to know as much as I can about their unique story. Everyone is different, so knowing as much as I can helps tailor the services we can offer here at The Mesothelioma Center.

Q: What makes The Mesothelioma Center different?

Selby: Our advocacy center is very unique in that we have very high-level, experienced advocates on staff, with each having unique skill sets: Medical, VA-Accredited Claims Agents, a certified dietitian and a licensed mental health counselor, to name a few.

We truly are an advocacy center, and our desire is to always have the patient or caregiver’s best interest at heart. We have no secret agenda.

Q: Why should mesothelioma patients connect with a patient advocate with oncology nursing experience?

Selby: With mesothelioma being very searchable, patients and caregivers can search terms on the internet and find themselves visiting a variety of websites that will label themselves as advocacy groups.

Many of these groups may not have any oncology experience and know very little about this unique cancer.

Connecting with an experienced oncologic nurse will allow the patient to get individualized information based on their unique situation rather than very broad and generalized information.

Q: How do you make a difference in the lives of the patients you help?

Selby: I feel that I try to help them at their level. I listen to their needs, then help them prioritize and problem solve. I have been here for almost 10 years and don’t plan on going anywhere as long as I’m needed.

I love it when I have a survivor call me several years after a diagnosis and say, ‘Wow, I can’t believe you remember me!’

Nutrition for Your Loved One After Mesothelioma Treatment

Mesothelioma and its treatment may cause a variety of side effects. These symptoms can diminish ability to eat well and lead to unintentional weight loss.

If you’re caring for a loved one with mesothelioma, you can help that person meet their nutrition needs and avoid losing weight without trying.

This is important because proper nutrition is a critical component of mesothelioma treatment. The right nutrients are the fuel your loved one needs to heal, maintain immunity and rebuild their body during and after treatment.

Beyond preparing food, removing stress from meal times, keeping realistic expectations, remaining flexible and supporting eating efforts can do wonders for your loved one’s ability to eat.

Understand the Challenges

One of the most challenging things about cancer is the additional stress it can place on a relationship or family. Every family has challenges, and we all get irritated with our spouse from time to time.

Mesothelioma cancer can magnify small day-to-day annoyances and bring them to a boiling point. Even things as seemingly normal as having a meal together can feel like a battleground after a cancer diagnosis.

Following mesothelioma treatment, eating can be a huge challenge. Food can taste horrible, or have a metallic flavor or texture like cardboard. Appetite can be nonexistent, and nausea comes and goes.

Words alone often aren’t adequate to describe these challenges to a family member who is not experiencing them directly.

Lending a Hand with Love, Not Judgment

For the family member, it’s easy to think, “Why aren’t they trying harder? If they’d just make more of an effort to eat what I’ve made, this would be so much easier.”

But this can come across as unneeded stress and feeling “nagged.”

This dynamic is the last thing a person struggling to eat needs. Stress can lessen appetite further and adds another barrier to eating enough. If they think every bite and sip is monitored, it’s harder for them to eat well.

As a caregiver, you can support your loved one’s attempts to eat without judgment by:

  • Offering them food frequently throughout the day and in small amounts.
  • Preparing various types and flavors of food.
  • Making suggestions of different things for your loved one to try.
  • Preparing what your loved one wants without judging its “healthfulness.”
  • Being supportive, even if someone doesn’t eat as much as you’d hoped.

Don’t Take It Personally

Common eating issues for people in cancer treatment include intermittent nausea, inconsistent appetite and frequently changing likes and dislikes.

For the person preparing meals, this may feel like constant failure. Your loved one mentions a food that sounds good. By the time you’ve fixed it, the moment has passed, their appetite has waned and they say, “Nevermind.”

It’s easy to feel your hard work in fixing what they want is being rejected. Just remember, what sounds great one minute may not be appealing the next. It’s not your fault, and it’s not your loved one’s fault either.

Instead of getting mad, simply acknowledge how hard it is to go through this. Offer to wrap the food and reheat later when they feel better. You can also try something else that’s quick and easy — a few sips of a smoothie or some crackers and cheese.

Understand the How and Why of Changing Nutrition Needs

Under normal circumstances, weight loss can benefit health if a person carries excess fat. However, cancer treatment is far from a normal situation.

With cancer, the body often cannot respond to weight loss in a healthy way. Instead of losing fat during treatment, patients can lose lean tissue. Lean tissue makes up muscle, organs, red and white blood cells and platelets.

In this way, weight loss exaggerates weakness and fatigue. You end up depleting the very cells and tissues needed to keep immunity strong and maintain healing.

Your loved one might put a positive spin on things: “At least I’ll lose a few pounds.”

Be supportive and help them move from old goals (weight loss) to a new goal (maintaining weight) to stay strong through treatment.

Let Go of Regular Routines, Try New Ways to Connect

One of the hardest things around eating habits is breaking routine. If you’ve always had three meals a day, and always eaten breakfast and dinner together as a family, it can feel hard to let go of that pattern.

However, when someone is struggling to eat enough during mesothelioma treatment, three meals a day doesn’t always work well to meet nutrition needs.

Many patients find multiple mini-meals and snacks — just a few bites at a time every 60 to 90 minutes — easier to manage than large meals. If meal times were your time to catch up on the day, create a new ritual.

Make it clear you’re still there for your loved one by saying, “Since dinner isn’t working very well right now, let’s make 5 p.m. our catch-up time whether you feel like eating then or not.”

Honest communication can head off a lot of battles around eating during cancer treatment.

Use Available Resources

Make the most of every eating opportunity with protein and calories.

  • Eat protein-rich foods regularly such as cheese, eggs, chicken, fish, lean beef, beans, tofu and nuts.
  • Drink high-calories liquids such as 100 percent fruit juice or smoothies made with whey protein powder or milk.
  • Add cheese and cooked meats to omelets, sandwiches, soups, salads and casseroles.
  • Increase protein in milk by blending one packet of dry milk powder into one quart of whole milk.
  • Add powdered milk or plain whey protein powder to milkshakes, cream-based soups and mashed potatoes.
  • Ask your loved one, “Salty or sweet?” Tailor each meal or snack to what appeals to them at the time.
  • Snack on cheese, nut butters or roasted nuts.
  • Blend nut butters or ice cream into smoothies and milkshakes.
  • Offer egg-based desserts such as cheesecake, custard and pudding.

3 Key Takeaways from Immunotherapy Expert Teleconference

If you have been diagnosed with mesothelioma, you’re likely considering treatment options.

These might include surgery, radiation therapy or chemotherapy with pemetrexed plus cisplatin or carboplatin. In some cases, bevacizumab may be added to that chemotherapy regimen.

These therapies are standard of care. They are accepted by medical experts as appropriate treatment for mesothelioma and are used by oncology professionals.

If you’ve already received standard of care and related treatments or you’re considering clinical trials, you may be interested in learning more about immunotherapy.

A free immunotherapy teleconference is a great place to start. CancerCare recently hosted a one-hour education workshop featuring three immunotherapy experts. The teleconference is available online for free.

For mesothelioma patients, immunotherapy is mostly available through clinical trials at this time.

Along with many important topics, the experts discussed clinical trials and shared important considerations for anyone thinking of participating in a clinical trial.

Exploring Future of Immunotherapy

Medical oncologist Dr. Mark Kris of Memorial Sloan Kettering Cancer Center (MSK), who served on the panel, discussed the early days of immunotherapy and its future.

“A better understanding of the immune system in recent years has allowed us to capitalize on that early work and develop new immune-based therapies,” Kris said. “Just a short time ago, we didn’t understand the on-off switches of the immune system. Now we understand them better. This has allowed development of drugs that don’t kill cancer directly but enable the immune system to do so.”

Kris explained there are several approved drugs that work this way, and more are on the horizon. None of these are approved for mesothelioma as standard of care, although they may be available through a clinical trial.

“These drugs can improve outcomes for many people,” Kris said. “But the key is working with your health care team to find out if immunotherapy is right for you. I cannot stress enough the importance of clear communication with your team about immunotherapy and whether it should be added to your cancer care plan.”

Consider a Clinical Trial

Clinical trials often are the only way a person with mesothelioma can access immunotherapy treatment options.

“We really need to acknowledge the many decades of patients who have participated in clinical trials over the years,” said panelist and medical oncologist Dr. Gregory Daniels of Moores Cancer Center in California. “We owe them a huge debt of gratitude, because it’s gotten us to where we are now.”

Daniels said clinical trial participation is always voluntary and helps patients gain access to otherwise unavailable treatments while advancing medical science.

“Ask questions so you fully understand, ‘How is this trial helpful to me? How could this trial harm me?’” he added.

To keep patient interests front and center, clinical trials are well regulated. Doctors and nurses familiar with giving experimental treatments conduct these trials.

If a patient is interested in a clinical trial, the medical provider will determine eligibility. That means finding out if they meet the right criteria to safely participate in the study.

For example, this might include undergoing scans or other tests to ensure your heart function is good enough for this particular treatment. Researchers always want to match someone to the right clinical trial for them.

“Clinical trials also allow for stopping the trial early if there is a clear benefit or harm of a newer therapy being tested,” Daniels said. “Most importantly, the patient must be comfortable with getting either treatment.”

Daniels explained trials are randomized, so patients — and often doctors — do not know who is receiving which treatment. The patient and doctor do not have a choice about which treatment will be administered.

“However, most clinical trials do not use a true placebo, meaning no treatment at all. Instead, you might be comparing standard of care against standard of care plus a new drug,” Daniels said. “Either way, you’ll be getting good treatment. No one receives no treatment.”

For mesothelioma patients, clinical trials may be the only way to receive a new drug not yet approved to treat mesothelioma, even if it already is approved for other cancers.

‘Environment Around Cancer’ Matters

Dr. Michael Postow, panel member and assistant attending physician in the melanoma and immunotherapy department at MSK agreed with Kris: Medical science advancements have allowed for a better understanding of the immune system.

“Immunotherapy is often called a ‘fourth modality’ of treatment after chemotherapy, radiation therapy and surgery, but it’s really more than that. It interacts with the immune system, which affects how other therapies work, to give even better outcomes,” said Postow.

Postow stressed that “immunotherapy is about the environment around the cancer. We used to focus only on the cancer cell, and now we know it is important to consider what is happening around the cancer cell that allowed it to grow and reproduce.”

“We now take a more holistic view on how the body interacts with cancer, and what we learn gives us even more targets for future immunotherapy approaches,” Postow said. “This informs how we approach cancer prevention, too.”

Postow explained that, surprisingly, not smoking is actually a form of immunotherapy “because smoking interferes with how the immune system functions.”

“Tobacco and alcohol cause cancerous mutations in cells and chronic inflammation that allow cancer to grow,” he said. “We now know avoiding things that harm the body works against cancer.”

The holistic approach also extends to cancer prevention vaccines.

For example, the HPV vaccine that prevents cervical and head and neck cancers caused by the HPV virus is a form of immunotherapy. For this approach, timing matters.

People are exposed to HPV through sexual activity, so the vaccine is recommended for children before they become sexually active. Getting vaccinated before viral exposure is critical for cancer prevention.

Postow also noted the important role of clinical trials in immunotherapy advances: “While immunotherapy allows for complete elimination of cancer from the body for a few people, a substantial number of patients do not have the response we want.”

A final takeaway from the experts is the importance of cancer survivorship care.

“These therapies are very complicated,” Postow said. “If you receive immunotherapy, you need experienced cancer centers and experienced doctors for appropriate treatment and long-term follow up.”