A Necessary Discussion: End-of-Life Options for Mesothelioma Patients

The COVID-19 pandemic has been a frightening time for all of us. The uncertain nature of the disease and number of people affected brings the importance of what we want at the end of our lives to the forefront. With hospitals and skilled nursing facilities limiting visitors and the inability of some to travel, it is necessary to discuss what we wish to happen at the end of life with our loved ones.

We all know that when one person within our family or group of friends gets diagnosed with a severe illness like malignant mesothelioma, it affects all of us. Uncomfortable conversations need to be had. However, navigating these complex and potentially life-altering conversations can be done in a reflective, thoughtful way.

As nurses, we have long heard our peers state that they would never have chosen the treatment that a particular patient went with, only to confront a health challenge themselves and choose the same treatment option.

Our relationships are the most important connections that we have. What we value and who we love are all individual decisions. Once we self-reflect on what we value and how we would like to live our final days, we need to let others know. To ensure your wishes are carried out, they must be shared with those who care about us: a spouse, partners, friends, and so on. Your medical team needs to know your desires, but more important than anything is that you and your loved ones know them.

Having essential conversations regarding our end-of-life wishes should be done by all of us, ideally before a health crisis. But unfortunately, it is easy to put off these conversations.

There is guidance and help on where to start thinking and planning about our wishes. Ellen Goodman, one of the co-founders of the Conversation Project, sums up their goal: “Conversations about what matters to you, not what is the matter with you.”

There are workbooks to help clarify your values and wishes. What do you value? Do you want to be home when you die? With who will you share your wishes?

In this complex world, sometimes we need to get back to basics and accept that we all are mortal. Talking and planning will not hasten our end of life but enable some peace when it does come. Ensuring that what you as an individual value and the decisions you want are honored can offer some peace of mind for both you and your loved ones.

November is National Family Caregivers Month

October was Health Literacy Month and November is National Family Caregivers Month. Both of these special months highlight the importance of education, support, and understanding when dealing with or caring for a loved one. When faced with a diagnosis of malignant mesothelioma, understanding of the disease and what to look for helps both the patient and the caregiver.

The definition of health literacy from the Affordable Care Act of 2010 is “the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make health decisions.”

There is nothing simple about understanding the disease of malignant mesothelioma. From diagnosis through treatment the terminology and descriptions of the disease are difficult to understand and to even pronounce. The process of being diagnosed is usually after weeks or months of tests and scans, and after other common illnesses are ruled out. Health literacy can become an issue immediately.

A “family caregiver” is considered anyone who does not get paid but helps another person do what they can no longer do without assistance. Family caregivers provide extensive assistance which can include medications, shopping, preparing meals, cleaning, advocating, coordinating, educating – the list is very long, and the contributions vital.

For a rare serious disease like malignant mesothelioma, it is important for patients and families to understand what they are dealing with. The options for treatment can be confusing and the plan can change with further testing. The importance of being able to understand and trust your team is vital. Family caregivers are the link between the patient and their medical team. Having someone with you during this journey can be life saving. In order to give the patient the best possible chance for recovery and quality time, the family caregiver’s contribution and understanding of the disease and the patient is very important and often both overlooked and under appreciated.

Looking around, the number of people who in addition to maintaining their jobs and lives also provide care for someone else is staggering. The term “invisible army” has been given to these caregivers who often are not recognized.

We honor and thank all the family caregivers for their huge contribution to ongoing care for another person, family or not!

Combination of Liquid Biopsy Tools Improves Results in Detecting Biomarkers, May Lead to Better Selection of Targeted Mesothelioma Treatments

Researchers continue to look for an effective tool that can be used for the early detection of cancer and to track the effectiveness of treatment. Now, one company reports that by pairing its liquid biopsy analyzer tool with another company’s genetic data analysis tool, the resulting tests proved to be nearly 100% accurate. This is another step in using blood tests to help guide personalized medicine for lung cancer and pleural mesothelioma patients.

In a press release prior to the Fifth AACR-IASLC International Joint Conference held earlier this month in San Diego, Biocept, Inc, reports when it paired the Target Selector ctDNA lung cancer assays with the Thermo Fisher QuantStudio5 (QS5) real-time PCR instrument results of the detection of key lung cancer mutations resulted in “more than 99% sensitivity and more than 99% specificity.”

“The ability to rapidly and accurately assess the molecular status of a patient’s tumor using a simple blood draw can be a critical factor in the selection of individualized targeted therapy,” said Biocept’s Senior Vice President and Senior Medical Director Veena Singh, MD. “Our tests can further provide for the monitoring of response to therapy over time without invasive tissue biopsies that can be difficult to perform in patients diagnosed with cancer.”

The tests targeted EGFR, KRAS and BRAF mutations that have been shown to be present in lung cancer and in some pleural mesothelioma tumors as well. According to some reports, mutations of the KRAS gene (Kirsten rat sarcoma viral oncogene homolog) are found in 20 to 25 percent of lung cancers. The EGFR gene is overexpressed in more than 50% of pleural mesothelioma patients, and in approximately 15% of lung cancer patients, and is one of the primary targets for bringing personalized care to cancer patients.

With the advent of personalized therapies that target specific biomarkers, ensuring that effective tools are available to quickly and easily identify treatable mesothelioma markers is critical. Personalized cancer treatment optimizes the potential for success.

Often, lung cancer and mesothelioma patients must undergo invasive and painful biopsies to extract diseased tissue for diagnosis. Tissue biopsy tests can take up to 10 days to get a result leaving patients worried and missing out on treatment. However, with just a blood sample, this partnership could bring effective treatments to cancer patients in a shorter time.

Pleural mesothelioma, caused by exposure to airborne asbestos fibers, is an incurable cancer involving the lining of the lung. Nearly 3,000 Americans are diagnosed with mesothelioma each year. There is no cure for the cancer.

Libby, Montana Mesothelioma Doctors Contribute Knowledge to Medical Journals

The doctors at Libby, Montana’s Center for Asbestos Related Disease (CARD) know a thing or two about mesothelioma. The town is home to a vermiculite mine blamed for widespread contamination from asbestos exposure and for hundreds of cases of mesothelioma, and CARD has been the hub for care and screening of many of the patients. Now, the medical team is sharing their knowledge of this deadly disease through collaboration on articles for scientific journals.

Dr. Brad Black and Dr. Gregory Loewen, both physicians at CARD, were among the authors in two separate studies published recently in the peer-reviewed journals Inhalation Toxicology and the Journal of Occupational and Environmental Medicine (JOEM), according to a Dec. 29 article in The Western News. The two provided their expertise into the studies looking at the pulmonary function of miners at Libby’s vermiculite mine.

In the study of 256 individuals who worked at the mine for a minimum of six months, the researchers concluded “eighty-seven percent of miners exposed to Libby Amphibole had pleural abnormalities on CT [computed tomography].” The study was published in JOEM.

“… most doctors probably don’t know about this unique type of asbestos related disease and wouldn’t be able to recognize it in their patients if they didn’t hear about it,” said Dr. Black on why the study is important.

The W.R. Grace vermiculite mine and mill located in Libby, closed since 1990, was found to have an asbestos deposit in the mine and is the site of significant asbestos exposure. According to reports, nearly 3,000 residents and former miners have been diagnosed with an asbestos-related disease, and over 400 have died from mesothelioma. Contamination from the site led the federal government to declare Libby a health emergency.

Asbestos is a known carcinogen and is proven to cause mesothelioma, a serious cancer caused by breathing in the asbestos fibers that then become lodged in the thin membrane that lines and encases the lungs.

The second study followed one individual who worked at the mine from 1969 to 1990 and had no other known exposure to asbestos. The person developed “asbestos-like” pathological features and eventually an adenocarcinoma. According to the authors, “This is to our knowledge the first time such an extensive evaluation has been conducted in a vermiculite miner from Libby, Montana.”

About CARD

CARD’s primary goal is to provide specialty healthcare and screening to those affected by Libby Amphibole Asbestos. CARD’s secondary goal is to stimulate research from around the country to gain further understanding of disease mechanisms, improve early disease and cancer detection and intervention, and develop effective health management strategies in hope of finding answers to improve health outcomes for individuals and communities.

Find out more about the Center for Asbestos Related Disease on its website.

Read the studies in the Dec. 1 issue of the Journal of Occupational and Environmental Medicine and in the Oct. 17 issue of Inhalation Toxicology.

Sources:

Center for Asbestos Related Disease
http://www.libbyasbestos.org/
Inhalation Toxicology
http://www.tandfonline.com/doi/abs/10.1080/08958378.2017.1372536
Journal of Occupational and Environmental Medicine
http://journals.lww.com/joem/pages/default.aspx
The Western News
http://www.thewesternnews.com/front_page_slider/20171229/libby_asbestos_clinic_contributes_research_to_two_journals

Helping Mesothelioma Patients Happy This 2018

Make the Most of the New Year

During the holidays, “Happy New Year!” gets repeated countless times throughout the day. Whether it is from the barista at the local coffee shop or the staff at the medical center, this is not the message a mesothelioma patient or his or her family wants to hear. It is doubtful that anyone with mesothelioma is happy.

But today is the start of a new year, and mesothelioma patients and their families can make the most of every day. In 2018, consider looking at “happy” another way and change the way you look at the new year.

Help others in the mesothelioma community by offering them insights from your experiences.

Always stay positive.

Praise your caregivers and let them know they are appreciated and valued.

Take Pleasure in the little things and look forward to whatever the next day may bring.

Your medical team members are your partners and advocates. Insist on the best care from them, and make sure they know what you want.

Just like looking at “happy” one letter at a time may help you change your perspective, take 2018 one day at a time and make the most of the new year.

For Your Family Articles: Page 1 of 14

A Necessary Discussion: End-of-Life Options for Mesothelioma Patients

November is National Family Caregivers Month

Combination of Liquid Biopsy Tools Improves Results in Detecting Biomarkers, May Lead to Better Selection of Targeted Mesothelioma Treatments

Libby, Montana Mesothelioma Doctors Contribute Knowledge to Medical Journals

About CARD

Make the Most of the New Year

Download Your Free Mesothelioma Handbook

Free Mesothelioma Patient

& Treatment Guide

For Your Family Articles: Page 1 of 14

A Necessary Discussion: End-of-Life Options for Mesothelioma Patients

November is National Family Caregivers Month

Combination of Liquid Biopsy Tools Improves Results in Detecting Biomarkers, May Lead to Better Selection of Targeted Mesothelioma Treatments

Libby, Montana Mesothelioma Doctors Contribute Knowledge to Medical Journals

About CARD

Make the Most of the New Year

Free Mesothelioma Patient & Treatment Guide

Free Mesothelioma Patient

& Treatment Guide