Asbestos Exposure Risks Lurk in Australian Hospitals

Hospitals in Australia rank among the best in the world for utilizing the latest techniques and innovations.

Unfortunately the same cannot be said for safety.

Of the more than 700 public hospitals and 630 private hospitals in Australia, many are not as safe as they appear.

Health unions and lawyers are warning that many major hospitals in the country are riddled with asbestos. The deadly mineral is the known cause of a number of diseases such as asbestosis, lung cancer and mesothelioma.

Exposure to asbestos poses a serious health risk to hospital staffs and the public.

The fact that asbestos lurks in Australian hospitals should come as no surprise. Many of these buildings were built prior to the 1980s when asbestos was considered a wonder material.

Asbestos was incorporated into a wide range of products to protect against fire, corrosion, acids, electricity and energy loss.

The building industry used asbestos-containing products extensively in the construction of homes and businesses, including hospitals.

As a general rule, any establishment built or renovated before the mid-1980s likely contains asbestos-containing materials.

Common areas where asbestos is found include:

  • Lagging on steam pipes
  • Ceiling cavities sprayed with asbestos
  • Fire doors with asbestos cores
  • Boiler houses and laundries insulated with asbestos
  • Asbestos fireproofing on columns
  • Electrical wiring insulation
  • Heating, ventilation and air-conditioning ducts
  • Underground service tunnels

Hospital Built on Top of Hundreds of Tons of Asbestos

Westmead — one of Sydney’s major hospitals — was forced to close its asbestos-riddled service tunnels in 2014.

Former James Hardie engineer Fred Sandilands told ABC News that during his employment he supervised the dumping of tens of thousands of tons of asbestos waste in the immediate area of the hospital and throughout other suburbs surrounding the James Hardie asbestos factory in Sydney.

The hospital itself is riddled with asbestos, found in old fire doors, boilers and laundry rooms. The extensive network of hot water pipes within the underground service tunnels are wrapped in asbestos lagging, some of which has become friable.

For decades, hospital staff and nurses used the tunnels to transport sick patients from one hospital building to another, inadvertently exposing themselves and their patients to toxic asbestos fibers.

The tunnels have also been used for nonmedical reasons including visits by Technical and Further Education (TAFE) students and even Halloween parties where decorations were draped on the asbestos pipes.

Untrained Worker Exposes Asbestos Concerns

In 2014, a young apprentice — untrained in the dangers of asbestos — cut into some lagging.

Following the incident, Westmead Hospital chief executive Danny O’Connor acknowledged the risk but stated he had not seen any reports of friable asbestos.

“There is asbestos in the tunnel but prior to the disturbance of the lagging on the piping within the tunnel, all of the asbestos was contained,” he said.

Shortly after, however, the tunnels were inspected by industrial hygienists who found white, brown and high-risk blue asbestos on concrete columns, concrete surfaces and paths within the tunnels.

Following the report, the tunnels were closed to all but a select few, who were required to wear protective clothing and face masks when entering.

In 2015, the hospital began the first stage of a massive redevelopment involving the demolition of some existing buildings and the excavation of the top 8 inches of contaminated soil.

Under controlled conditions, the contaminated soil was removed and transported to an approved disposal facility. Broken pieces of bonded asbestos sheeting were also removed from the base of plants in surrounding garden beds.

Calculated measures were taken to reduce the risk of residential waste streams entering stormwater catchments during demolition.

The Health Services Union (HSU) worked closely with Westmead management to prevent asbestos exposure risks in and around the site.

HSU also began health monitoring of Westmead staff members who worked in the tunnels and may have been unknowingly exposed to asbestos.

The asbestos problem at Westmead has opened the eyes of many who were unaware of the danger that lurks in buildings they thought were safe.

Tragically, Westmead is just the tip of the iceberg.

Major hospitals in Melbourne, Brisbane, Adelaide, Perth and Sydney are also known to have underground tunnels full of asbestos and fire doors with asbestos cores.

Some of these materials are damaged and extremely dangerous.

According to the Asbestos Safety and Eradication Agency’s 2016-17 report, occupational asbestos exposure increased to 70 percent from 64 percent the previous year.

Importance of Mesothelioma Cancer Survivorship Care Plans

The details of your mesothelioma cancer treatment can be overwhelming.

It is a challenge to remember complicated drug names, surgery details, potential side effects and long-term health issues associated with your cancer treatment.

Cancer survivorship care plans help patients keep track of these details and communicate with their health care providers. A good survivorship plan may improve your health care after a mesothelioma diagnosis.

These documents are important because they track your current treatment and potential future medical care needs.

Cancer treatment facilities are supposed to complete cancer survivorship care plans for every patient. Unfortunately, these plans aren’t provided for the majority of patients.

The purpose, completion and delivery of these plans were hot topics among cancer experts at last week’s American Society of Clinical Oncology (ASCO) Cancer Survivorship Symposium in Orlando.

No Consistency in Cancer Survivorship Care Plans

The Institute of Medicine first recommended every cancer patient receive an individualized cancer survivorship care plan in 2006.

ASCO, the American Cancer Society and the National Comprehensive Cancer Network provide examples of cancer survivorship care plans. Despite these efforts, the majority of patients still are not getting a plan.

At the symposium, Dr. Paul Jacobsen of the National Cancer Institute (NCI) shared results from a review of 24 studies on cancer survivorship care plans.

The findings are not encouraging.

Only 43 percent of NCI-designated cancer centers — among the best cancer care facilities in the country­ — provided these plans to patients, Jacobsen said. Just 1 in 5 oncologists provided these plans, noting lack of time and resources as barriers.

Patients who received a cancer survivorship care plan had the same levels of anxiety, psychological distress, depression, and quality of life as the patients who didn’t get a plan, according to Dr. Jacobsen.

In summary, cancer survivorship care plans weren’t provided consistently. When plans were provided, they failed to improve health care and quality of life for cancer patients and survivors.

If mesothelioma cancer survivorship care plans don’t work, why do you need one?

We need them because many health care providers agree that when they are properly created and used, these plans can be lifesavers for cancer patients, including people with mesothelioma.

Maximizing Your Mesothelioma Cancer Survivorship Care Plan

The negative findings about cancer survivorship care plans presented at the recent ASCO meeting may discourage your doctor from raising this issue. But you should ask for a cancer survivorship care plan anyway.

With a little attention to the issue, you can work with your cancer health care team to create a mesothelioma survivorship care plan that works for you.

As you start treatment, ask the team to document everything from the beginning.

Be persistent and ask that your plan be updated after every visit.

For example, if a new drug is added to your treatment, tell your doctor, “I see you’ve added a new drug to my treatment. Are there other side effects I will need to worry about long term? Has this been added to my cancer survivorship care plan?”

For your mesothelioma cancer survivorship care plan, ask about:

  • Contact information for your health care providers, including medical and radiation oncologists, surgeons, nurse practitioners, physician assistants, and specialists (physical therapists, dietitians and others)
  • Your follow-up tests and appointments and how often to follow up
  • Possible short- and long-term health issues related to your mesothelioma treatments your primary care provider needs to know
  • Generic and brand names of drugs you received for treatment and any surgeries performed
  • Any radiation treatments you received, and the parts of the body treated or affected by the radiation, including organs in the path of radiation exposure

Ask a loved one or friend to help keep track of other key information. This could include writing down your diagnosis date, your mesothelioma cell type and genetic tests performed on your tumors.

Many patients find it helpful to understand how to obtain results of important lab tests and imaging scans such as X-rays, CT and PET scans and MRIs. Find out where these records are stored and how to request copies.

Additional Ways to Improve Your Survivorship Plan

Ask for printed and electronic copies of your mesothelioma cancer survivorship treatment plan. Add the following information to your plan:

  • Any nonmesothelioma-related medications you take such as drugs to manage cholesterol, blood pressure, pain, diabetes and other chronic conditions
  • Your blood type
  • Your use of tobacco, alcohol, other drugs or substances
  • Your use of dietary supplements, herbs or other complementary or alternative medicine treatments.

Mesothelioma cancer survivorship care plans are an important part of your treatment.

Many health experts agree: When done correctly, survivorship care plans do help cancer patients get the best care after a challenging diagnosis.

Healing Benefits of Reading for Cancer Patients

I inherited a love of reading from my father.

He read to me as often as his work schedule allowed. However, it was his gift of a set of Little Golden Books that ignited a passion for reading that still burns in my heart today.

I think reading a few chapters of a good book is food for the heart and soul.

When doctors diagnosed Dad with mesothelioma, he turned to reading for spiritual guidance and an escape from reality.

As his physical limitations increased, so did Dad’s love for reading. He’d sit in his recliner reading for hours.

Sometimes Dad read for healing, but mostly he enjoyed reading for pleasure.

Other cancer patients might find spiritual healing and emotional pleasure within the pages of a book, just as my father did.

Using Books as Therapy

Perhaps the act of reading has properties of healing.

The oldest library in the world belonged to Pharaoh Ramses II. Above the entrance reportedly read the phrase, “The house of healing for the soul.”

In more recent history, mental health practitioners used literature in a therapeutic context.

Sigmund Freud used literature within his psychotherapy practices in the early 1900s.

Bibliotherapy, or the use of books in therapy, is a relatively common practice for many helping professionals today.

An article published by the American Counseling Association describes several therapeutic properties of using literature in modern therapy practices.

Some of the benefits of bibliotherapy include:

  • Self-Awareness: Through reading, people may learn more about their inner self, including their strengths and weaknesses.
  • Empathy: Readers may identify with characters in a story, gaining a deeper understanding of the feelings and emotions of others through the literature.
  • Hopefulness: People can relate to the struggles and triumphs of the characters they read about, developing a greater sense of hope in the trials of real life.
  • Reduced Negativity: Reading can diminish negative emotions, transforming them into more positive feelings and attitudes. This emotional transformation can yield a more reassuring outlook.

Professionals use clinical bibliotherapy as part of a larger therapeutic framework to address a variety of health issues such as trauma and chronic illness.

However, cancer patients and their caregivers may tap into some of the healing characteristics of reading a good book as well.

Reading Benefits for Cancer Patients

Professionals at the University of Texas MD Anderson Cancer Center claim reading books can help cancer patients and their caregivers.

Dietary books may help patients gain a deeper understanding of healing properties of nutrition and foods they might eat to improve their health.

Some authors compose cookbooks with cancer patients in mind. One might read about foods that boost the immune system and aid in healing after cancer treatment.

People affected by cancer might also enjoy reading nonfiction personal accounts of cancer survivors.

Readers can relate to the struggles of facing cancer and find hope in the triumphs of others. Reading memoirs of survivors can also help families better understand their loved one’s fears and emotions surrounding their diagnosis.

A Vacation from Real Life

Some patients and caregivers might not be interested in reading about certain aspects of cancer, despite the positive nature of the literature.

My father used reading as a means to break away from his diagnosis.

He liked spiritual reading, classic novels and science fiction. He could relax in his chair and take a small vacation from his chemotherapy treatments and medication regimen.

A good book has the power to teleport a reader to another time or place.

Reading can be much more engaging than other types of entertainment such as movies or television because readers must actively use their imagination to envision the characters, setting and plot.

Perhaps it is the healing properties of literature that Nobel Peace Prize winner Kofi Annan had in mind when he said, “Literacy is a bridge from misery to hope.”

Bonding with My Father

Admittedly, it may be a little old-fashioned, but some patients and caregivers might enjoy reading to each other from the same book.

My father and I read John Steinbeck’s “Of Mice and Men” in a hospital room when he had some chemotherapy complications.

I loved hearing him speak using the voices of the characters, George and Lenny. We laughed until we cried.

I read to him when I wasn’t sure he could even hear me. There were many times when my emotions left me feeling speechless, and the words written on the pages gave me a voice when I had none.

Despite the fact I was voicing the words of another, it was as though I said all I needed to say in those moments.

A Resource During Difficult Times

Families facing cancer usually spend a significant amount of time in medical facilities.

There are times when they can keep themselves entertained watching television in the rooms or leafing through pamphlets in the waiting areas.

However, books provide an entertaining way to pass the time.

Social workers and other members of an oncology team may suggest the most beneficial reading materials for your family.

A caregiver can also inquire with their loved one about which books they might like to hear or read.

If communication is limited, a caregiver can always choose reading materials that convey a message of love and support.

Whether in a clinical context, among loved ones or alone, literature presents many joys and opportunities for growth.

No matter the genre or format, reading can lighten the mood, enrich the spirit and feed the soul.

Understanding and Navigating Mesothelioma Clinical Trials

Clinical trials offer many mesothelioma patients a chance at trying an experimental drug or other novel treatment.

But for the everyday Joe, understanding and navigating the language of mesothelioma clinical trials can be monumental.

For example, ClinicalTrials.gov, which is a U.S. National Institutes of Health database, contains public information about more than 264,000 clinical trials involving any health condition in the nation and in more than 200 countries.

As with any database housing that amount of information, navigating all the elements to find the one clinical trial you are searching for can be cumbersome if you don’t understand all the moving parts.

Why is it important to understand clinical trials? It’s important because it better educates you and your loved ones about the therapies — other than traditional treatments — that may prolong your life expectancy or improve your prognosis.

How to Find the Right Study

The following step-by-step guide will hopefully help you or a loved one locate a mesothelioma clinical trial that may be right for you.

Go to ClinicalTrials.gov

Once there, you’ll see a few search options, including recruitment status, condition and the country where the clinical trial is based.

Start Your Clinical Trial Search

If you are looking for an ongoing clinical trial or one that may soon begin to recruit participants, click the “recruiting and not yet recruiting studies.” If you choose “all studies,” the database will search any ongoing, upcoming or closed clinical trial.

The next step is to enter “mesothelioma” for the condition, and click the drop-down menu in country until you find your country of residence. You will also be able to select a specific city, state or both if you prefer.

Some mesothelioma clinical trials are global, which means cancer centers across several countries run the same trial.

Click the “search” button and the database will begin looking for the trials that match your selections.

Choosing the Right Trial

When the database locates mesothelioma clinical trials that match your search terms, you’ll see a list of study titles, statuses, conditions, interventions and locations.

You will also notice a collection of recruitment statuses on the page, eligibility criteria, study type, study results, study phase and who is funding the trial.

It’s a lot of information to deal with at once, but not all of it is pertinent to you. For example, maybe you are just interested in phase III clinical trials currently recruiting participants. If so, click “recruiting” in the recruitment status and choose “phase III” in the study phase section.

Once you’re done with those two selections, choose “apply,” and a list of only those trials will appear.

You can always click on the particular trial to read the specifics of the study, including eligibility, purpose, estimated number of participants and trial location.

Find a Mesothelioma Clinical Trial

Let us help you find a clinical trial actively enrolling pleural mesothelioma patients.

FIND A TRIAL

Understanding Clinical Trial Language

While those steps will start you on the way to finding a particular trial, there’s still the issue of understanding what each type of status or criteria means.

For example, what’s the difference between “suspended,” “terminated” and “completed”?

  • Recruiting: The trial is enrolling patients that meet the inclusion criteria. There will be a list of sites enrolling or planning to enroll patients as well as contact information.
  • Not Yet Recruiting: The trial is not yet enrolling patients. Unfortunately, Clinicaltrials.gov doesn’t notify you when the trial begins recruiting.
  • Active Not Recruiting: The trial is ongoing, and patients are enrolled and receiving treatment. Unfortunately, they are not enrolling new patients.
  • Suspended: The trial has ended early but may start enrolling patients again.
  • Terminated: The trail has ended early and will not restart. Patients are no longer receiving treatment.
  • Expanded Access: Patients with serious diseases who may not qualify for other trials can enroll in the clinical trial and gain access to the experimental treatment.

Enroll in a Clinical Trial

Even as a physician, Clinicaltrials.gov can be overwhelming and difficult to navigate. If you find a trial that interests you, use this guide and speak to your doctor or contact the clinical trial site if you have questions.

Be sure you have the ClinicalTrials.gov identifier number or NCT number in order to communicate about a specific trial.

Do not get discouraged. By participating in a clinical trial, you will have access to new treatments, and the study team will monitor you. Each new trial offers hope for you and those who follow you.

Clinical trials are important for all mesothelioma patients because they carve the path toward new treatments for patients.

The Cost of VA Health Care for Mesothelioma

The Department of Veterans Affairs (VA) health care system includes some of the top mesothelioma specialists in the nation.

Given the ever-rising cost of cancer treatment in the U.S., you are right to wonder if these top specialists come with hefty medical bills.

Fortunately, many veterans can get mesothelioma treatment through the VA system at no charge. Veterans ineligible for free treatment must pay VA copays, but these costs are still reasonable compared to most private health care.

Transportation and lodging assistance is also available for veterans who live far away from VA medical centers with mesothelioma specialists.

Free Treatment for Service-Connected Mesothelioma

The VA considers mesothelioma and other malignant forms of cancer 100 percent disabling.

If the cancer was caused by active-duty asbestos exposure, the veteran is entitled to disability compensation benefits and free cancer treatment through the VA health care system.

The U.S. military was a major user of asbestos-containing materials from the 1930s to the 1970s. Thousands of veterans — especially those who served on Navy ships — now suffer from asbestos-related illnesses as a result.

When a veteran is diagnosed with mesothelioma that traces back to military service, a VA-accredited patient advocate can help them file a disability claim and find a mesothelioma specialist within the VA system.

When the disability claim is approved, it will cover all the costs of the cancer treatment.

VA Copays for Non-Service-Connected Cancer Treatment

Some veterans develop mesothelioma as a result of asbestos exposure they suffered during their civilian career.

Veterans who left the military to work in construction, heavy industry or firefighting have faced high risks of occupational asbestos exposure.

If a veteran’s cancer is not linked to active-duty toxic exposure, they cannot file a VA disability claim for it.

However, veterans can still qualify for free cancer treatment under certain conditions:

  • Low income
  • Former prisoner-of-war status
  • Rated 50 percent or more disabled from other conditions
  • Deemed catastrophically disabled by VA provider

The VA website details information about VA health care copays.

A veteran with non-service-connected mesothelioma may end up having to pay a few thousand dollars for treatment in the VA system, depending on their treatment plan.

In contrast, cancer treatment costs tens of thousands of dollars for many Americans, even after they have paid health insurance premiums.

Transportation Services and Reimbursement for VA Patients

Cancer treatment involves many indirect costs in addition to health care expenses.

Experienced mesothelioma specialists are few and far between, so the Veterans Transportation Program helps veterans travel to the VA treatment centers where they will receive the best treatment.

The VA partners with veterans service organizations, government services and nonprofit groups to provide transportation services for veterans, no matter where they live in the U.S.

Special government grants ensure transportation assistance for veterans living in rural areas.

The Beneficiary Travel program can make travel arrangements for VA patients and pay for their bus, train or plane tickets. This program can also reimburse the travel expenses of VA patients who drive themselves for treatment.

When a veteran has to travel far from their primary doctor to see a specialist in another city, a dedicated Traveling Veteran Coordinator makes sure the two medical teams communicate so the veteran’s health care is seamless.

Lodging for Veterans and Families Who Travel for Treatment

Many VA health care systems have a “hoptel” program that provides free overnight accommodations for veterans who must travel more than 50 miles for outpatient services.

This program pays for the cost of staying in a hotel or motel near the medical center.

In addition, the Fisher House Foundation sets up “comfort homes” where family members can stay for free while veterans are recovering in a VA hospital. These homes typically have several private bedrooms for individual families as well as common areas for cooking, dining and socializing.

The foundation also collects donated frequent flyer miles and hotel points to give out to family members of hospitalized veterans.

Don’t Let Valentine’s Day Stress Impact Your Cancer Battle

Leading up to Valentine’s Day, jewelers, florists and fancy restaurants all fight for your business.

They each stress the importance of showing your sweetheart how much you care on what many consider the most romantic day of the year.

But when you or your loved one is battling mesothelioma, you may not have the energy, the funds or the desire to make a big deal out of Valentine’s Day.

When mesothelioma intrudes into a marriage, a couple may feel like they have gone from husband or wife to patient or caregiver. This has its own set of challenges and adjustments.

As a couple shifts gears toward battling mesothelioma, they may put nurturing their relationship on the back burner to focus on fighting the cancer and managing treatment side effects.

I found that some marital relationships are strengthened by the experience of fighting cancer together.

But many couples find the stressors that accompany a mesothelioma diagnosis can negatively affect their relationship.

Financial worries, fatigue, social isolation, decreased libido and communication problems while dealing with mesothelioma can strain a partnership at a time when couples want their relationship to be at its most resilient.

It is no wonder that couples fighting mesothelioma have enough on their plate without the pressure of trying to make Valentine’s Day special.

Little Gestures Can Go a Long Way

As a couples therapist, I found that the happiest couples don’t save up their romantic gestures for one or two special days of the year such as Valentine’s Day or their anniversary.

They let their partner know they are loved and appreciated on a regular basis.

These caring behaviors don’t have to be elaborate gestures that require a lot of money or preparation.

You can do little things each day to show your loved one you are thinking about them.

It is the little things that keep a relationship strong. It is the tone of your voice when speaking to your partner. It is the private jokes you share that no one else gets. It’s saying to your partner “I appreciate your help,” or listening to their fears or worries without trying to fix the problems or give false reassurance.

Give your loved one a foot rub without being asked. Make your partner their favorite homemade meal and let them indulge.

Simple gestures speak volumes.

Don’t Let Valentine’s Day Create Added Stress

When a couple is dealing with a life-threatening diagnosis such as mesothelioma, the last thing they need is to feel pressured to live up to an unrealistic expectation on Valentine’s Day.

Take a moment and reflect upon what your partner loves about you and appreciates about your time together.

It doesn’t take a lot of effort to let your loved one know you love them and are thinking about them on Valentine’s Day.

And make sure they know how much you care the other 364 days of the year.

Mesothelioma Immunotherapy Side Effects Often Misdiagnosed

Compared to chemotherapy, immunotherapy side effects are usually mild.

Unfortunately, when immunotherapy does cause severe side effects, they are highly unpredictable.

The developing science of immunotherapy has led to some of the greatest breakthroughs in cancer treatment in the past decade.

Checkpoint inhibitors such as pembrolizumab (Keytruda), nivolumab (Opdivo) and ipilimumab (Yervoy) are gaining popularity as off-label treatments for mesothelioma.

In certain cases, the new class of drugs has proven effective against even the most treatment-resistant tumors. Sarcomatoid mesothelioma survivor Gene Hartline found success with Opdivo after chemotherapy stopped working.

While the science behind immunotherapy dates back to the 1890s, doctors cannot yet determine the potential benefit and risk of current therapies for each individual patient.

A large fraction of patients experience little benefit from immunotherapy, and a small percentage suffer life-threatening side events.

Chemotherapy and immunotherapy affect the body in different ways.

Because immunotherapy is a much newer treatment compared to chemotherapy, the medical community has little experience identifying and responding to its side effects.

Patients receiving immunotherapy must be proactive to prevent misdiagnosis of side effects.

Difference Between Chemotherapy and Immunotherapy

Chemotherapy is one of the most established forms of cancer treatment. It uses drugs that attack all rapidly dividing cells in the body.

This is often an effective way to target cancer cells, but it also damages many of the body’s normal cells in the process, leading to harsh side effects.

Immunotherapy, on the other hand, helps the body’s own immune system fight cancer cells. In particular, checkpoint inhibitors disable certain molecules that keep immune system cells inactive.

As a result, the body’s immune system goes into high alert, giving it a much better chance of finding and destroying cancer cells.

The standard chemotherapy regimen for mesothelioma has not changed much since 2004, when the U.S. Food and Drug Administration (FDA) approved the combination of pemetrexed (Alimta) and cisplatin as a first-line treatment.

By contrast, the first FDA approval of a first-line immunotherapy treatment for lung cancer came in 2017 with Keytruda.

All immunotherapy for mesothelioma remains experimental.

Why Are Immunotherapy Side Effects Dangerous?

Checkpoint inhibitors such as Keytruda and Opdivo are not designed to hurt cells directly, which is why they typically have much milder side effects than chemotherapy.

Common side effects of immunotherapy include:

  • Skin irritation at the injection site
  • Dry mouth
  • Fatigue
  • Aches and pains
  • Nausea
  • Loss of appetite
  • Fever

Patients may feel as though they are fighting the flu, because their body reacts much like it would to a viral infection.

However, an overactive immune system can also target healthy cells by accident, which causes the rare and dangerous side effects of immunotherapy.

These adverse events can occur in almost any part of the body — seemingly at random — which makes them easy to misdiagnose.

Most doctors are familiar with chemotherapy side effects, but if a cancer patient goes to the emergency room with a severe rash, vision problems or inflammation in their liver, ER doctors may not suspect it is actually a negative reaction to a new immunotherapy drug.

Managing severe immunotherapy side effects may require corticosteroids or other types of medication that control the immune system.

If uninformed doctors waste time trying to treat the wrong illness, the patient could suffer permanent tissue damage or death.

Keep Your Doctors Informed

In general, immunotherapy is less toxic than chemotherapy.

Many cancer specialists are optimistic ongoing research in clinical trials will make immunotherapy even safer and more effective than it is today.

In the meantime, the key to receiving immunotherapy safely is to consider how unpredictable its side effects can be.

  • Tell your oncologist about every health issue you experience, even if it seems unrelated to your cancer.
  • When you see other medical specialists, make sure they know you have received immunotherapy, and give them the contact information of your oncologist.
  • If you develop a health problem after receiving immunotherapy, make sure your health care providers consider the possibility it may be a side effect.

In most cases, immunotherapy side effects can be treated with medication or will fade away on their own after you stop receiving the therapy.

Communication Crucial After a Mesothelioma Diagnosis

A diagnosis of mesothelioma can be devastating and have an influence on your relationships.

These relationships include immediate and extended family, close friends, casual or social contacts, co-workers and others. The impact of a cancer diagnosis can increase the stress on each of these relationships and negatively affect communication.

I know this from experience.

Open communication is the key to alleviating the stress. You may feel comfortable discussing all aspects of your life with some people but more reserved with others. Some people may want to hear all the details, and others may not.

Honest and nonjudgmental communication is critical.

It’s important to determine your level of comfort when sharing details and be aware of the comfort levels of the people listening to you. Expectations of yourself and others may need to be adjusted.

Diagnosis Affects Partners or Spouses the Most

Your spouse or partner will be the relationship most affected by your mesothelioma diagnosis.

The household responsibilities may need adjustments that could lead to stress. If you are the patient and handled most of the household duties, your spouse or partner may need to take them over. This could cause resentment on both sides.

A caregiver may feel helpless and try controlling the patient’s behavior in an effort to control something.

When I received treatment for my stage 4 metastatic colon cancer, I had a sense of control because I was “doing something,” but my partner felt helpless and scared, and tried to control things — and me.

By addressing these feelings, our relationship improved, and we became closer. Sharing our fears and expectations opened a channel we didn’t know existed.

Prepare a List for Your Loved Ones

Be specific when people ask if there is anything they can do to help. Having a list ready, with multiple items they can choose from, is a great place to start.

Whatever your list includes — yard work, meals, walking the dog or cleaning the litter box — you will be surprised what friends and family are willing to do for you.

Expressing specific tasks is easier for the doer, and it requires less energy from all involved. They also know the help they are giving is needed.

I jotted a few chores on a list I prepared for my family and friends. My cousins visited and raked my yard. My friend made a two-hour round trip to clean the litter boxes.

People cooked meals and froze them for us, and someone stayed with me daily.

Be Considerate of Others

At first, it was difficult to ask for help.

I had always been the one to support others, but it made the people helping me feel less helpless. Always consider what people are comfortable doing for you and be respectful of their limitations by giving them a few options. People want to help because it also helps them.

Hopefully, some of these tips can help you improve communication while undergoing treatment or recovering from therapies.

It’s also important to remember counseling or professional help is available if the stress becomes too uncomfortable or communication breakdowns cannot be resolved with simple conversations.

6 Ways Mesothelioma Treatment Affects Your Senses

Our senses are vital to how we enjoy our lives. When you receive mesothelioma treatment, be prepared for how it may affect your vision, hearing and other senses.

Talking about your side effects with doctors and adjusting your lifestyle as necessary can protect your quality of life.

Chemotherapy drugs often damage sensing cells and the nerve cells that connect your sense organs to your brain.

Platinum-based drugs in particular affect senses. These drugs include cisplatin and carboplatin, which are standard in mesothelioma treatment.

Other types of cancer drugs as well as radiation therapy can also cause sensory side effects. Cancer treatments may affect your senses immediately, or side effects may develop months later.

Treatment affects each person differently.

In most cases, sensory side effects are temporary, but it may take weeks or months for your senses to return to normal after you stop receiving treatment.

Doctors need to know about any problems your cancer treatment causes. If a cancer drug gives you vision or hearing problems, those problems will only get worse the longer you receive the treatment.

Your medical team can intervene to prevent sensory losses or make them easier to live with.

Mesothelioma, Cisplatin and Hearing Loss

Our sense of hearing depends on thousands of tiny cells in our inner ears that sense the vibration of sound waves.

When something kills these cells, they do not grow back, which is why hearing loss is usually permanent.

Platinum drugs are ototoxic, meaning they are poisonous to the inner ear. Hearing loss is a very common side effect of cisplatin and carboplatin. You may not notice this side effect if you already experience age-related hearing loss.

In some cases, patients lose almost all the hearing they have left.

The more ototoxic drugs you receive, the greater your risk of hearing loss. Researchers are trying to develop a medication that will protect the inner ear during platinum chemotherapy, but it is not yet approved by the U.S. Food and Drug Administration.

Your doctors should monitor your hearing before, during and after treatment. If permanent hearing loss is unavoidable, you may benefit from hearing aids.

Chemotherapy can also cause or worsen tinnitus, or chronic ringing in the ears, which can make it hard to rest or concentrate.

Vision Problems from Cancer Treatment

You may experience blurred or double vision if a drug damages your optic nerves.

Chemotherapy can also prevent fluid around your eyes from draining properly, which puts pressure on your optic nerves. This leads to glaucoma, which may cause slow or sudden vision loss.

Cataracts may form when chemotherapy damages the proteins that make up the lenses of your eyes, clouding your vision.

Various drugs can cause sensitivity to light, or photophobia. This happens when parts of your eyes swell, making it painful for your pupils to get smaller when you see a bright light.

Numbness and Tingling in Extremities

When chemotherapy damages nerve cells throughout your body, it becomes difficult for signals to travel from your extremities to your brain.

This condition is called peripheral neuropathy, and the most common symptoms are numbness or tingling in your fingertips and toes.

Your risk is greater if you have other conditions that cause peripheral neuropathy such as diabetes, alcoholism and malnutrition. During mesothelioma treatment, you should always watch your blood sugar, limit alcohol consumption and make sure you eat enough.

If mesothelioma treatment affects your sense of touch, alert your doctors. Be cautious of damage to your nervous system.

Loss of Balance and Coordination

If your treatment affects your sense of hearing and touch, it may also make you feel clumsy.

Damage to the vestibular system in your inner ear affects your sense of balance, leading to feelings of dizziness or vertigo.

Peripheral neuropathy will make you less coordinated, as the lack of sensation in your hands and feet make simple tasks such as walking and picking things up tricky.

Tips for adapting to these side effects include:

  • Using tools and utensils with easy-to-grip handles.
  • Clearing away things in your home you might trip over.
  • Sitting down when you do things with your hands to make balancing easier.

Changes in Taste Perception

Cancer treatment can affect your sense of taste in many ways.

When receiving a drug through an IV, some patients experience a side effect called “metal mouth.” They taste the metallic flavor of the chemotherapy as it finds its way into their saliva.

Another common side effect is the formation of mouth sores that are sensitive to tart foods. These sores are caused by inflammation of the mucus membrane in the mouth — a condition called oral mucositis.

Chemotherapy and radiation therapy can also damage the taste buds on your tongue. This may cause you to lose your sense of taste, or it may change how sensitive you are to different flavors.

If you discover new preferences for sweet, sour, bitter and salty foods, you may want to change what you eat or how you season it.

Sense of Smell During Chemotherapy

One of the main side effects of chemotherapy is nausea, which gives you a weak stomach. When your body feels nauseous, you may no longer be able to tolerate strong food smells.

You can adapt to this by avoiding kitchens when food is cooking and steering clear of pungent seasonings. Cold meals may appeal to you more than hot meals, because cold food is harder to smell.

It’s important to make sure you eat enough during cancer treatment, but you may actually want to avoid your favorite foods. You do not want your body to learn to associate them with nausea caused by chemotherapy.

Alert Doctors to Sensory Side Effects

You should always tell your doctors about changes in your sensory perception. Don’t assume all your vision or hearing problems are age-related.

Sensory problems could point to a bad reaction to a cancer treatment. They could also be caused by cancer spreading to your brain.

In the past, cancer doctors often didn’t worry about the long-term effects of chemotherapy, because cancer patients were not expected to survive very long. Cancer treatment is changing, however.

You should talk to your doctor about how to minimize your risk of sensory side effects. When these side effects are unavoidable, find out what you or your doctors can do to manage them.

Mesothelioma Advocates Unite on World Cancer Day

Every year on World Cancer Day, people around the globe unify to celebrate the lives of cancer survivors, to remember those lost too soon and to work toward a cure.

WorldCancerDay.org says the global event “aims to reduce the number of preventable deaths each year by raising cancer awareness among the general public and pressing governments to take further action against the disease.”

An estimated 8.8 million people die from cancer worldwide each year. Over the next 10 years, that number is projected to increase to more than 14 million.

These numbers are startling. Without action, they are terrifying.

Advocacy groups around the world are developing practical strategies to address the cancer burden.

“We are entering a new era for global health,” the event website reads. “Now more than ever there is a need for a global commitment to help drive advancements in cancer.”

Patient Advocates Campaign for Early Detection

Patient Advocates from The Mesothelioma Center at Asbestos.com are dedicated to supporting people carelessly exposed to asbestos.

Asbestos exposure may lead to serious health conditions, including an aggressive cancer called mesothelioma. Given the rarity of this cancer, the global mesothelioma burden is unclear, but experts estimate as many as 43,000 people worldwide die from this disease each year.

Timing is everything. Late-stage mesothelioma patients typically have less treatment options available and a poor prognosis.

That’s why our team of Patient Advocates is coming together to improve early detection. By increasing awareness of signs and symptoms of mesothelioma, we can improve mesothelioma survival.

Snehal Smart, Physician and Patient Advocate

“Far too often, a patient ignores their body when they notice early signs and symptoms from cancers and therefore delay getting medical assistance.

Snehal Smart

In addition, it is also common for a doctor to order several tests or may be unsure if the symptoms may be related to cancer or something else before one is diagnosed with cancer,” Smart told Asbestos.com.

“Early detection of cancers can open more treatment options and improve survival and save lives. Before the cancer has spread, it is more likely to be treated successfully. Once it spreads, treatment becomes more difficult, and generally, a person’s chance of surviving is much lower. By understanding early detection saves lives, we can help patients be more aware of the signs and symptoms of cancer and help them get early medical attention and treatment.”

Aaron Munz, Director of Veterans Department and VA-Accredited Claims Agent

Aaron Munz

“I can help veterans and other workers who were exposed to asbestos understand their risks and help them take proactive steps to start medical testing for an early diagnosis.

I can help connect them to medical specialists for diagnosis, treatment and monitoring, giving them the best chance for successful interventions.”

Danielle DiPietro, VA-Accredited Claims Agent and Patient Advocate

Danielle DiPietro

“Being proactive with your health is extremely important, especially for those diagnosed with mesothelioma. Knowing you have a history of exposure to asbestos means you need to have annual exams to ensure you do not have a cancer or another asbestos-related condition.

If the doctor can detect a diagnosis early, there are more treatment options which can lead to a longer life expectancy.”

Karen Selby, Registered Nurse and Patient Advocate

Karen Selby

“Early detection is so very important, especially when dealing with deadly asbestos cancer. Mesothelioma and other asbestos-related diseases often can be silent for a long time, many growing before symptoms ever start to occur. Without early screening, patients are often diagnosed too late where treatment is no longer effective”.

Additional Ways to Make a Difference

Cara Tompot

In addition to our Patient Advocates, we asked our editorial team to make a 2018 commitment to lessen the cancer burden.

By uniting our team on World Cancer Day, we can make a difference all year long.

After a cancer diagnosis, many patients feel alone and lost. This is especially true for those with rare cancers such as mesothelioma.

Joining forces with survivors, caregivers, doctors, researchers and advocates around the world ensures no one fights cancer alone.

Matt Mauney, Editor and Content Writer

Matt Mauney

We can shape policy change. Mesothelioma is an entirely preventable cancer. Asbestos — the overwhelming cause for the disease — is not banned in the United States. Effective advocacy is needed to raise awareness about the dangers of asbestos and the need for a comprehensive ban. Together, we can reduce exposure to this deadly carcinogen.”

Walter Pacheco, Managing Editor

Walter Pacheco

“I can make healthy lifestyle choices. Eating right and exercising regularly will help keep cancer at bay as well as keep my body healthy.

I commit to a weekly routine of cardio, making better meal choices and wearing sun screen.”

Tim Povtak, Senior Content Writer

Tim Povtak

“We can challenge perceptions. By writing about inspirational mesothelioma survivors, we can show that a diagnosis of this rare and aggressive cancer is no longer the death sentence it once was.

Hope can replace the gloom-and-doom attitude of yesterday.”

Cancer Affects Everyone

Cancer is a disease that knows no boundaries and has — or will — affect us all directly or indirectly during our lifetime.

By taking urgent action, we can work to prevent future cancer and fight to find a cure.