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Advocacy Articles: Page 1 of 13

Flexibility Plays an Important Role in the Mesothelioma Journey

The quality of flexibility is best described as the ability to bend without breaking.  Facing challenges either physical or mental throughout life and the ability to adapt to the unexpected requires flexibility. 

Everyone’s journey in life and facing death is different.  Guiding these uncharted experiences can be very difficult for both the person facing their mortality  and the family and loved ones trying to help. 

When facing end-of-life patients and families often have different perspectives. The perspectives that they have at the beginning of the journey often change as the journey continues.

Recently a patient was facing the end of his life.  He had battled his disease for several years and was ready to stop.  His family was supportive of his decision and wanted to follow his wishes. The plan was hospice at home with family members taking turns caring for them.  The family was able to see that his wishes were honored but it required flexibility. This sounds logical but when emotions and relationships are involved it is not always easy to navigate.

People plan and expect things to go by plan. Everybody has their own scenarios and plans about what they would like their death to look like. Sometimes these plans need to be adjusted. Like birth when the expectant parents have the birthing plan in place, every scenario is planned for.  The unexpected happens and the plan needs to be adjusted.  Flexibility plays an important part in that.

Malignant mesothelioma is a disease that challenges people every day beginning at diagnosis. It is a rare disease that charts its course from individual to individual. 

When facing the end of life for any disease the plan may have to be adjusted.  Any disease or end-of-life issue is never neatly packaged and there are no instructions on how to respond and which way to handle decisions and circumstances that are out of their control.

Remain flexible and adjust your expectations throughout your journey.  Treasure every moment of this life. Planning is important but the ability to be flexible and adjust to life-ending moments as we respect the wishes of our loved ones is a success. Although the outcome may not be what you were hoping for and the timing may not be long enough, facing our mortality and those of our loved ones is an important part of life.

New Immunotherapy Drugs Show Promising Results for Certain Cancers in Clinical Trials. Is Mesothelioma Next?

Participation in Clinical Trials is how progress is made in medical research.  The trials are regulated and must conform to rigorous standards and be able to be replicated. Research scientists dedicate their careers to making progress with treatments for diseases using Clinical Trials. The inclusion and exclusion criteria are very specific. Some Clinical Trials are not able to be done due to lack of enrollment. Participation is voluntary and only with informed consent that the patient can withdraw at any time. In the United States it is estimated that only 5% of adults eligible to participate in a Clinical Trial sign on.

Progress can be slow and results are often not what the researchers had hoped for. Responses can vary by individual participants and success is often made in small percentages of people responding to the treatment. 

This past week some very exciting news was published in the New England Journal of Medicine and reported widely in the media.  A surprising report was published of the results of a Clinical Trial with a small sample of patients diagnosed with a specific mismatch-repair deficiency rectal cancer and the immunotherapy drug Dostarlimab, brand name Jemperfi. This specific type of rectal cancer makes up 5-10% of all rectal cancers. 

Before beginning the standard treatment for this type of rectal cancer, which is chemotherapy followed by radiation followed by surgery, these patients joined a Clinical Trial testing Dostarlimab infusions before the standard treatment.  Dostarlimab is classified as an immunotherapy drug.  It has been approved by the FDA for treatment of certain types of endometrial cancers. The results were a surprising 14 out of 14 patients having a full remission.  No evidence of their disease was found!  For 100% of the patients enrolled in the study to have no evidence of disease after six months of treatment is what researchers dream of.  The importance of this response is exciting for all of the patients and researchers and for possible results with other cancers. More research with a larger number of patients will need to be done.

These results  are encouraging for research for malignant mesothelioma that are ongoing with some Clinical Trials including immunotherapy drugs. 

With renewed enthusiasm we encourage those diagnosed with Malignant Mesothelioma or any other cancer to checkout www.ClinicalTrial.gov or ask your treatment team about eligibility to participate in a Clinical Trial. 

    

Memorial Day: One-Third of Mesothelioma Victims are Veterans

The end of May is when we stop as a country to remember our fallen soldiers. As the nation pays tribute to those that have sacrificed their lives for our freedom, this Memorial Day has special meaning.

Memorial Day is a day to remember and honor all military service members that have died while serving our country. Our heroes that gave their lives for our freedom and our way of life will never be forgotten. Their stories need to be told and listened to. We hope that their sacrifice is remembered and honored by  a grateful nation that collectively stops and gives thanks, for their ultimate sacrifice. 

This year, for the mesothelioma community, in which one third of the victims of this deadly cancer are veterans, we reflect on the continued toll that serving our country may take on service members decades later. By exposure to a known carcinogen, asbestos, the leading cause of malignant mesothelioma in the service of our country decades earlier, this group of soldiers and their families also end up  sacrificing their lives.

Asbestos is still not banned in the United States. The knowledge that it causes deadly diseases that can kill people has been known for decades. For decades advocates have been working to get the importing of asbestos for use in products banned in the United States with no success.  This year we are closer than ever to finally realizing this common sense ban. The bill to ban asbestos is progressing slowly through the Congress but only after endless work by tireless advocates. Advocates whose family members paid with the price of their lives, a fight that they continue to fight so that you or your family member might not suffer the same preventable fate.

Why in this great country of ours are we not able to agree that what is proven that asbestos kills as does guns? There is no need for asbestos or for certain guns. Banning both will prevent needless tragedies, a great majority of Americans agree with getting that done. Why is it acceptable that senseless killing of children while at school and continued use of a known carcinogen to slowly kill is accepted?

Pray that our leaders will have the courage to come together to protect public safety by supporting a total and complete ban of asbestos and the regulation of guns. All of us deserve no less.

Memorial Day is the traditional start of summer with families getting together and barbecues.  Sometimes the meaning of this holiday can be lost. Take the time to remember those who have gone before us. Say their names, tell their stories. Hold your loved ones tight.

Mesothelioma on International Rare Disease Day

Today is Rare Disease Day. This day is set aside as a worldwide event. The first international Rare Disease Day that included the United States was held in 2009. The theme this year is Patients and Researchers Partners for Life.

There are over 7,000 rare diseases recognized internationally, and approximately 90 percent still lack effective treatment. Eighty percent of them have identified genetic origins, and 75 percent of rare diseases affect children. Raising awareness that these conditions exist and that they affect people all over can shine a light on the need for further research.  

In 1983, when Congress passed the Orphan Drug Act of 1983, rare diseases were called orphan diseases because drug companies were not interested in developing treatments for them. This bill created financial incentives to encourage the development of treatment  and a definition of what a rare disease is. The definition of a rare disease in the United States is  a condition that affects fewer than 200,000 people. The definition is different in Europe where a rare disease is a disease that affects 1 in 2,000 people.

Malignant mesothelioma is a rare disease. A rare disease with an active community and supporters. The progress that has been made towards a cure for mesothelioma has been made by research. Research is slow and expensive.

The Mesothelioma Applied Research Foundation has raised millions for research towards a cure. In addition the Foundation supports patients and families throughout their journey with mesothelioma. Awareness and advocacy, continued over time, is important to bring attention to a rare disease like malignant mesothelioma

The overall goal of Rare Disease Day is to improve the knowledge of the general public on what is a rare disease. The National Organization of Rare Disease is raising awareness by encouraging people to light up buildings on February 28th. Their motto is “alone we are rare together we are strong.”

On Monday, February 28th, take a minute to learn about what challenges people with rare diseases face on a day to day basis. See the possibilities that a small community can accomplish when we all work together to a common goal.

This Labor Day, Let’s Reflect on Those Exposed to Asbestos on the Job

Today we reflect on what Labor Day is and has become.

According to the official definition from the Department of Labor website, “Labor Day is an annual holiday to celebrate the economic and social contributions of workers to the strength, prosperity, and well-being of the country.”

In the United States, Labor Day is a federal holiday currently observed on the first Monday of September. The first Labor Day was celebrated on September 5,1882.  Labor Day has its origins in the labor union movement which advised 8 hours for work, 8 hours for recreation and 8 hours for rest. Through their movement they help shine a light on workers conditions and change laws to regulate working conditions.

Labor Day is also the unofficial end to summer often that is what many people associated with this holiday. As we enjoy our families and friends this last unofficial weekend of summer, we should stop and remember the people who are battling illnesses related to their occupations.

Asbestos is the number one cause of work related deaths worldwide. More than 39,000 lives are lost to asbestos related illnesses each year. Although many think asbestos has been banned in the United States 1.3 million workers are at risk of exposure.

Malignant mesothelioma and asbestos related diseases have historically affected the working man and women. From the asbestos mines, to servicemen serving our country the exposure to asbestos through insulation, and the many products made with asbestos  has continued to affect the health of many workers.

People that are diagnosed with Malignant Mesothelioma can often pinpoint their exposures to jobs held many years ago. The incubation period from exposure to asbestos and development of Malignant Mesothelioma can be as long as 50 years.

Enjoy the holiday and hopefully in the not so distant future we can add banning asbestos to one of the movements that contributed to improved workers health and safety.

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