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Like America, Transitions in Care are Critical for Mesothelioma Patients

As the United States awaits the peaceful transfer of power from one administration to another, transitions are at the forefront of the news. We are all being reminded of what an important role that transitions play in life. Whether the transitions be personal or public, transitions are times of change. Transitions involve communication and education, they can be physical or emotional.

The importance of transitions in dealing with the medical system cannot be understated. Transitions of care have been studied extensively in the health care system and identified as an area that needs improvement.  

Different factors that can influence a successful transition of care are communication breakdown, patient education breakdown, and an accountability breakdown.

Being diagnosed with a serious illness or cancer like malignant mesothelioma can change the person’s life immediately. 

A pleural mesothelioma patient that we recently visited was describing her journey with the disease. Her first symptom was a dry cough. The cough did not go away. Her family members urged her to go to her PCP and get the cough investigated. She did and was diagnosed with malignant mesothelioma within a few months. She was eligible for and had surgery.

Her journey has been full of transitions. As she spoke of her journey and what she had been through, one of the most challenging things for her was thinking of herself as being a patient with a serious cancer. She is an active person, had been on no medications, and the last thing she thought that her dry cough was from was a serious cancer.

As our patient continues on her journey with mesothelioma, her ability to deal with the disease and the change in the flow of her life are ongoing. As she adjusts to living with cancer and looks forward, one thing is certain: her life and her family’s lives have been changed.

We hope as she transitions to her “new normal” – as we hope for our country – and continues to be supported in her physical and emotional journey.

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!

Residents of the Town of Asbestos in Canada Consider New Name

With the internet, social media, and many other modern forms of communication, everyone’s “brand” and naming has taken on increased importance. It is not unusual for a company to rebrand itself with a different feature that they want people to associate with their business. In this case, there is a town’s name associated with disease and death.

The news from Asbestos, Canada a year ago was that the town leaders wanted to change the name because of the negative connotations that the word asbestos holds. Asbestos, Canada is the home to the Jeffrey Mine and is a small town 80 miles east of Montreal. The approximate population is around 7,000 people.

For many years the Jeffrey Mine, which was named after W.H. Jeffrey, who bankrolled the town’s asbestos mine, was the leading producer of asbestos in the world. The mine made Canada one of the world’s leaders in asbestos exportation. It was last owned by the Johns Manville Corporation.

A vote was scheduled to be taken by the townspeople in October on what to change the name to. The four choices that were to be voted on were:

  1. Apalone – an indigenous species of turtles.
  2. Jeffrey – W.H. Jeffrey bankrolled the town’s Jeffrey Asbestos Mine.
  3. Phoenix – the mythological bird of rebirth.
  4. Trois-Lacs – a local lake and the name of a municipality that merged with Asbestos in 1999.

This week the leaders of Asbestos, Canada decided to “pause” the re-naming as there is a lot of dissension among the town people on the changing of the name.

Asbestos causes cancer. This was declared by the World Health Organization over 30 years ago. It is a fact no amount of rebranding can hide. Asbestos continues to kill people.

Approximately 100,000 people die globally each year from asbestos related diseases. Asbestos can cause lung cancer, malignant mesothelioma, and asbestosis. It is estimated that at least 80-85 percent of cases of malignant mesothelioma can be traced to exposure to asbestos. Changing the name of the town will not change the history of what asbestos has and continues to do to the health of the world.

Asbestos, Canada will always be associated with the Jeffrey Mine and asbestos manufacturing. The legacy of the damage that asbestos has done to peoples’ lives and contributed to their premature deaths cannot be rebranded.

We wish the people of Asbestos the best as they search for a new name and a healthy future that does not highlight their history in asbestos production.

What Are Clinical Trials and How Can They Advance Treatment?

COVID-19 has impacted our daily lives throughout the U.S. This previously unknown virus that has caused the pandemic we are currently in has scientists all over the world researching for a cure.

The virus is educating a lot of people about the clinical trial process. As scientists race to find a cure for this deadly virus, the process that is in place for approval for new medications, treatments, and vaccinations is being questioned. Why does it take so long? Why is participation so low?

Patients, family members, and experts who are dealing with malignant mesothelioma know that the process to improve therapy leading to a cure is slow. There are requirements as the process is rigorous with defined stages, criteria, and approvals.

One of the challenges of conducting a clinical trial is to get participation in the trial. All participation is voluntary and can be withdrawn at any time. It is estimated that less than 5 percent of all adult patients diagnosed with cancer participate in clinical trials. Some of the reasons people give for not participating are:

  • Lack of awareness, patients didn’t know about it.
  • They don’t think they qualify.
  • Fear and safety involved.
  • The inconvenience of location or added responsibilities.
  • Confusion over whether it is covered by insurance.

It is reported that 25 percent of cancer trials failed to enroll a sufficient number of patients, and 18 percent of trials closed with less than half the targeted enrollment.

Research from 2019 gives another perspective. The article published in the Journal of the National Cancer Institute in March of 2019 written by Unger JM, Validya R, Hershman DL, et al  did a systematic review and analysis of the structural, clinical, and physician and patient barriers to cancer clinical trial participation. Their findings in a study funded by the National Cancer Institute included that:

  • 55.6 percent of patients did not participate in a trial because no trial was available for their type or stage of cancer at their treatment center.
  • 21.5 percent of patients were ineligible due to criteria that did not include them such as co-morbidities.
  • 22.9 percent of patients had physician and patient related barriers, such as not being asked to participate or refusing by the patient.

As we continue to live through this pandemic and people are becoming more aware of the clinical trial process, there are reports of up to 16,000 people – mostly young – that have offered to participate in the development of a vaccine. They are volunteering to be given the vaccine and then exposed to the coronavirus as part of a study to evaluate a vaccine that is still in the experimental phase.

COVID-19 has changed our lives. Hopefully a new awareness of the opportunity to participate in clinical trials for all diseases will be one of the positive results that comes from the pandemic.

Balancing Mesothelioma with the Coronavirus Pandemic

Worried PatientWhen someone is diagnosed with malignant mesothelioma, the battle is both mental and physical. The symptoms are numerous and some more frightening than others. Mentally it can have an outsized effect on one’s peace of mind, affecting your physical wellbeing as well as your emotional wellbeing.

So how does a mesothelioma patient keep mind and body in sync during a strenuous time like the coronavirus pandemic? 

First, look around at yourself and jot down your physical symptoms. Put factual numbers to paper. A few strategies you might consider include:

  • Monitor daily weight.
  • Monitor calorie intake if you can, or just list what you eat.
  • If you have an O2 sat monitor use that and record the findings.
  • If you don’t have an O2 sat monitor monitor, record the distance you can walk each day.

Now that really is the easier part. Mental wellbeing can be a challenge. How do you keep your head in check and not get carried away to dark thoughts and fear? If you are having a hard time being calm, there is a fair amount of advice available. Here are some different approaches:

  • Close your eyes, take a deep breath, and exhale slowly.
  • Say out loud three things you are grateful for today.
  • Connect with others. Talk with people you trust about your concerns and how you are feeling.
  • Take a break from news, including social media.

If these ideas aren’t working, contact your primary care provider and they will try to help with your physical or mental challenges at this time. Reach out to your mesothelioma team. Remember that mesothelioma patients are high risk when it comes to coronavirus and the COVID-19 virus’ related respiratory symptoms. 

You are not alone. These times are uncharted territory for all of us. We can get through it with help from one another.

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