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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!

Mesothelioma Treatments Make Progress Through Clinical Trials

Over the years we have had the privilege of seeing people diagnosed with malignant mesothelioma in different stages of their journey. Malignant mesothelioma is a rare cancer that is difficult to diagnose and to treat. Treatment options are limited and long term quality survival is the goal with ultimately leading to a cure. Always recommended has been getting treatment at a Mesothelioma Center of Excellence and participating in clinical trials.

Treatment and research has been ongoing, but for most, painfully slow with limited successes.

The Food and Drug Administration recently approved the use of two immunotherapy drugs for the treatment of inoperable malignant pleural mesothelioma. The drugs, Opdivo (Nivolumab) and Yervoy (Ipillmumbab), were approved by the FDA in less than six weeks. The six weeks timeline was following the submission of a new Biological License Application under the FDA’s real time Oncology Review process.

These successes do not come overnight. They come in increments. They are like building blocks with this success building on the next. Not many among us are research scientists or are gifted with the knowledge and drive to conduct a clinical trial when it succeeds, but more importantly when it doesn’t. To continue with the next idea and not give up takes committed leaders and a very supportive community.

The mesothelioma community worldwide is small. For the successful clinical trial that led to the FDA approval in record time of this new treatment option, recruitment was started in September of 2016. There were 109 study locations worldwide, enrolling 606 patients. This is a collaborative effort that yielded an important treatment option for people and families that are dealing with this largely preventable rare cancer.

To participate in a clinical trial is also a courageous thing to do. For many, the results may not come in time to help them or improve their quality of life, but will help others in the future.

These numbers do not tell the story of the lives this research will affect. We have the privilege of being in a position to see the results and to put faces to the treatment options that are now being offered. The results are all scientifically quantitated and verified through the scientific process.

As we continue to see people and families affected by malignant pleural mesothelioma, we will continue to put faces and stories to their particular journey. We also remember the many brave people that entered into these clinical trials and are not able to see the success in which they had a vital part in. With this new option hopefully patients and their families will be able to enjoy quality time while further research can continue toward the cure.

First New Drug Treatment for Mesothelioma Approved by FDA in Over 16 Years

For the first time in 16 years, the U.S. Food & Drug Administration has approved a new drug combination specifically for the treatment of malignant pleural mesothelioma. The two drugs, which are to be used together when surgery is not an option, are Opdivo (nivolumab) and Yervoy (ipilimumab).

About 20,000 Americans are diagnosed with malignant pleural mesothelioma each year according to the FDA – the vast majority of which have tumors at diagnosis that cannot be removed by surgery. The devastating cancer is caused by the inhalation of asbestos fibers, often found in manufacturing, construction, mining, military, transportation and other common settings.

When combined, Opdivo and Yervoy improve T-cell function to reduce growth of the patient’s tumor.

“In 2004, FDA approved pemetrexed in combination with cisplatin for this indication, and now patients have an important, additional treatment option after more than a decade with only one FDA-approved drug regimen,” said Dr. Richard Pazdur, director of the FDA’s Oncology Center of Excellence.

The drug therapy was approved after a clinical trial involving over 600 participants with unresectable malignant pleural mesothelioma that had yet to be treated. Patients received doses of both Opdivo and Yervoy every few weeks for up to two years before results were measured.

“Approval of nivolumab plus ipilimumab provides a new treatment that has demonstrated an improvement in overall survival for patients with malignant pleural mesothelioma,” said Dr. Pazdur.

Those who took the new combination survived an average of 18.1 months from diagnosis, compared to 14.1 months for those who received standard chemotherapy.

It can be difficult to navigate the many treatment and legal options presented to mesothelioma patients after they are diagnosed. The experts at the Mesothelioma Help Organization are here to help you make sense of it – reach out today.

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.

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