Tips to Mesothelioma Patients from Rare Disease Sufferer, Sam Berns

Dealing with a rare disease like mesothelioma is not easy. Treatments such as surgery, chemotherapy and radiation are constant reminders of the battle raging inside your body. Managing cancer and its side effects can be stressful and depressing, but finding a way to focus on the positive aspects of your life can make a difference in your physical well-being and in your quality of life.

Sam Berns, a 17-year-old who recently passed away from the rare disease progeria, which causes rapid aging, was faced daily with obstacles, health issues and pain, yet he lived a full and happy life. When asked in an NPR interview what was the most important thing people should know about him, Sam responded simply: “I have a happy life.”

During an inspiring speech hosted by TEDx just months before he passed away, Sam offered his three secrets to happiness:

Focus on what you can do, not what you cannot do.
Surround yourself with people you want to be around.
Keep moving forward and continue to strive for something else.

“I try hard not to waste energy feeling badly for myself,” said Sam. He added that instead of ignoring the feelings, he “lets them in so that I can acknowledge them, and do what I need to do to move past it.”

Many long-term mesothelioma survivors are living testaments to Sam’s outlook. Mavis Nye has battled pleural mesothelioma for over four years, and she is probably one of the happiest people you’ll meet. Keeping mesothelioma in check is not easy, but Mavis believes that the key to her longevity can be attributed to her joy of life. And, Mavis spends time with those who bring her joy.

“Ray [her husband] and I enjoy doing so much together,” said Mavis. “We are laughing all the time and enjoy camping together in the motor home. That’s when we can really relax.”

Mavis’s attitude is echoed by another mesothelioma warrior, Lou Williams. Lou, who has battled mesothelioma for nearly ten years, raised a toast to herself and other mesothelioma patients on New Year’s Day, saying: “Here’s to being here in 12 months time and to living well in the meantime – doing what we love – travelling, spending time with family and friends and fitting as much into our lives as we do now!”

Jan Egerton also offered a New Year’s resolution to all mesothelioma patients, encouraging “everyone in the mesothelioma community, whether you are a patient or a caregiver, to keep a positive attitude and to remember that for every bad day there will be a good one.”

Just like Sam, mesothelioma patients are faced with an uncertain future. But even when Sam was at his lowest and in the hospital fighting another complication, he focused his thoughts on looking forward to when he would be better. He was buoyed by his fourth philosophy, “I never miss a party if I can help it!”

Farewell to Jan Egerton - Mesothelioma Warrior

A Fond Farewell to Jan Egerton – Friend and Mesothelioma Warrior

Jan Egerton, wife, author, friend to countless people worldwide, and a decade-long mesothelioma warrior, lost her battle to the cancer this morning. The mesothelioma community rallied around Jan, and her husband Gary, during this last week as Jan was released from the grips of the disease that she despised.

Since being diagnosed with pleural mesothelioma in 2004, Jan has undergone nearly every procedure available to mesothelioma patients including multiple rounds of chemotherapy, several surgeries, cryoblation, radiation and various other procedures to hold the cancer cells at bay. The journey with the “nasty cancer,” Jan told me one day, “is like a nonstop roller coaster.” Yet, throughout all she endured, Jan’s love of her husband, her beloved dogs, Bear and Lexi, and life itself never failed to shine through.

I reached out to Jan just over a year ago to ask her if she would allow me to share her story on Mesothelioma Help of her ups and downs with her battle against mesothelioma. However humble, she supported my stories about her, and also wrote her own articles for us to post to ensure a patient’s voice is heard. She said, “I hope that by sharing my information here, I can help others find the reality of what happens to people with mesothelioma.” I could not have known that a year later I would be mourning the loss of not just a courageous woman, but of a friend who welcomed me into her world with open arms.

Jan was a true inspiration and her positive attitude and fighting spirit gave strength to everyone in the mesothelioma community, and anyone lucky enough to have met her. And that was evident in the outpouring of support on Facebook over the last few days: “You are an inspirational fighter who will be sadly missed.” “Your survival story has and will be a beacon of hope to me for years to come.” “We are proud of the gallant fight you are fighting.” One person echoed everyone’s thoughts best, saying simply, “I hate you mesothelioma.”

Jan not only created a Facebook community for mesothelioma patients and families to meet and support each other, but she carefully chronicled her journey and hopes through her blog, “Mesothelioma – Jan’s Journey.” For Jan, writing was a release for her and it helped her deal with her cancer. Instead of “mesothelioma eating away at me from the inside, writing has given it a way to come out and keep me sane,” she said.

Jan wanted others facing a similar battle to know what to expect and to have someone to turn to for support. “We need to help each other, as we know more about this cancer than anyone else.”

Jan melded her love of writing with her desire to help find a cure for mesothelioma by writing a novel, “The Dreamweaver’s Choice,” and by donating the proceeds to the Mick Knighton Mesothelioma Research Fund. For Jan’s work with the MKMRF and her continued generosity to help fund research efforts by the organization, Chris Knighton named Jan Ambassador for MKMRF.

“Jan is a source of inspiration and hope to so many people living with mesothelioma,” Chris said. “What better person could we have as an ambassador than Jan?”

Jan never gave up in her fight to raise awareness of mesothelioma and to encourage others to fight with her. She reiterated this in her last blog entry on January 12: “To my fellow warriors, keep the torch burning.”

Godspeed, my friend.

All of us at Mesothelioma Help send our deepest condolences to Gary and to all of Jan’s family and friends during this very difficult time.

Find more of Jan’s insights into life with mesothelioma on “Faces of Mesothelioma.”

Jan’s book, “The Dreamweaver’s Choice,” is available for Kindle at Amazon.com. USA readers can order here, UK readers can access the book here. [Note: Jan also wrote a second book, “The Vial of Darkness,” and just received the hard copies from the printer.] If you would like to download our free e-book, please visit this page.

Mesothelioma & the Military: The Many Sources of Asbestos Exposure

Asbestos can cause mesothelioma and other cancers. Millions of Americans have died over the past 50 years from asbestos exposure. Those who served in the military – particularly the Navy – continue to develop asbestos-related illnesses.

How the Navy Used ACM Products

The Navy used asbestos containing materials (ACMs) for many purposes. According to the Department of Veterans Affairs War Related Illness & Injury Study Center, the Navy used ACMs on ships that were built before 1983 – many of which were in service for decades afterwards.

ACMs were used in many materials, including boilers, turbines, pumps, gaskets, valves, cements, adhesives and pipe coverings. They were extensively used in engine and boiler rooms. Navy veterans were exposed to asbestos when working in very close quarters, which has resulted in an increased risk of developing an asbestos-related illness.

Navy Veterans at Increased Risk

Navy veterans who are at an increased risk of developing an asbestos-related illness include those who:

were involved in repair of asbestos-containing equipment or removal of asbestos materials
served on ships whose keels were laid before 1983
worked in shipyards from the 1930s through the 1990s
worked below deck before the early 1990s
handled, removed or disturbed any ACM during duty
worked as pipe fitters, welders, boiler tenders, electricians, machinists and firemen before the mid-1990s

Unfortunately, many service members often worked directly with asbestos products in tight areas with poor ventilation and were not provided with proper respiratory protection. For many Navy service members, this was a deadly combination.

Serious Health Effects of Asbestos Exposure

Many Navy veterans were continually exposed to asbestos that caused them to contract asbestos-related diseases that affect the lungs or membranes around the lungs such as respiratory cancer (lung cancer and mesothelioma), asbestosis and other types of cancer:

Respiratory Cancer. There are two types of respiratory cancers that are generally caused by asbestos exposure – mesothelioma and lung cancer.
- Mesothelioma affects the mesothelium, a thin membrane that covers the internal organs of the body. Although there are several types of mesothelioma, most affect the membranes surrounding the lung (pleural membrane) or abdominal cavity (the peritoneum).
- Lung cancer forms in the tissues of the lung, usually in the cells that line the air passages. Lung cancer from asbestos generally does not manifest for decades after exposure. Cigarette smoking, along with asbestos exposure, can increase the risk of lung cancer by 50 to 100 times.
Asbestosis. Asbestosis is a condition that causes lung tissue to scar and become thick, stiff and fibrotic. It can be a progressive process and result in shortness of breath. It is often associated with a chronic cough or bronchitis and can eventually lead to disability and death.
Other Cancers. According to the Institute of Medicine, research shows that asbestos exposure can also lead to other cancers – especially those that affect the pharynx, larynx, stomach, colon and rectum.

The tragedy is that these illnesses could have been prevented if proper precautions had been taken to avoid asbestos exposure. Unfortunately, asbestos manufacturers failed to provide sufficient warnings of the health hazards of their products.

Navy Veterans Deserve Compensation for Their Injuries

Any Navy veteran who was injured due to asbestos exposure is likely dealing with costly cancer treatments and other medical expenses that wouldn’t have been necessary had the asbestos companies provided adequate warnings. Navy veterans deserve compensation to cover these costs, and an experienced mesothelioma attorney can analyze your situation to determine your possible legal options against an asbestos manufacturer, distributor or seller.

Million Dollar Donation to Memorial Sloan-Kettering Cancer Center

Just last week we suggested several mesothelioma support organizations to consider donating to in 2014. While non-profit organizations rely heavily on private donations to offer services to mesothelioma patients and their families, many hospitals also rely on private donations to continue to fund mesothelioma research. Now, six “elite U.S. cancer research facilities” will receive a share of $540 million, donated by the estate of the late American shipping magnate Daniel Ludwig, to apply towards fighting cancer.

According to an article from Reuters, the money will be divided equally among “Ludwig Centers” already established at Johns Hopkins University, Harvard University, the Massachusetts Institute of Technology, Memorial Sloan-Kettering Cancer Center, Stanford University and the University of Chicago.

Memorial Sloan-Kettering Cancer Center (MSKCC) is the world’s oldest and largest private cancer center, and is also one of the premier centers for treating mesothelioma patients. According to MSKCC’s website, the cancer center “is a leader in the treatment of mesothelioma and has one of the nation’s largest volumes of patients with this illness.” In addition, scientists at MSKCC are focused on developing new therapies and approaches to treat mesothelioma patients.

“This amazing gift will enable outstanding basic and translational scientists at the Ludwig Center for Cancer Immunotherapy at Memorial Sloan-Kettering to engage in high-risk, high-impact, cutting-edge research at the intersection of immunology, cancer biology, and clinical oncology,” said Alexander Rudensky, PhD, Director of the Ludwig Center at Memorial Sloan-Kettering in a press release announcing the gift.

MSKCC reports its Ludwig Center focuses on harnessing the power of the immune system to fight cancer. Doctors at MSKCC have recently been conducting a clinical trial using the Wilms Tumor-1 vaccine to help the body build an effective immune response to kill cancer cells. The trial was tested on mesothelioma patients to see if it delays or prevents malignant pleural mesothelioma from growing back after surgery. Don Smitley, father of MesotheliomaHelp writer Jennifer Gelsick, was a participant in that trial after which he enjoyed a year of life nearly free of mesothelioma symptoms before passing away in October 2013.

Cancer research is expensive and time-consuming, and for research related to a rare disease, such as mesothelioma, the costs can be even higher. This donation from Ludwig, among the largest publicly recorded gifts to cancer research made by a private organization, provides MSKCC with $90 million to not only fund research, but to attract “the best and the brightest new scientists and clinicians to the field of tumor immunology.”

“The extraordinarily generous gift from Ludwig Cancer Research will have a transformative impact on the Ludwig Center for Cancer Immunotherapy at Memorial Sloan-Kettering,” said Jedd Wolchok, MD, PhD, a medical oncologist, immunologist, and Associate Director of the Ludwig Center at Memorial Sloan-Kettering and Director of the Swim Across America/Ludwig Collaborative Research Laboratory.

MD Anderson Cancer Center and IBM’s Watson Pair Up to Fight Cancer

MesotheliomaHelp has followed IBM’s Watson from its first success in Jeopardy! in 2011 to its use in collaboration between IBM and Memorial Sloan-Kettering Cancer Center. The supercomputer that is already helping doctors diagnose and treat cancer patients is now going to support MD Anderson’s Moon Shots program designed to eradicate cancer.

In an October 18, 2013 press release, IBM and MD Anderson announced MD Anderson Cancer Center will begin using the IBM Watson cognitive computing system for its mission to put an end to cancer. MD Anderson’s president Ronald DePinho, M.D. used President John F. Kennedy’s drive to put a man on the moon as inspiration to reduce the number of deaths from cancer, leading to the Moon Shots program.

While the Moon Shots program will focus on eight cancers including, breast, leukemia and lung cancer, the use of MD Anderson’s Oncology Expert Advisor, powered by IBM Watson, will initially be used to fight leukemia. However, the successes achieved through the use of the supercomputer will especially benefit mesothelioma patients and other patients with rare cancers. Watson can access digital information dispersed throughout the world in just a matter of seconds and “integrate the knowledge of MD Anderson’s clinicians and researchers.”

According to the press release, the Expert Advisor will provide the tools for the MD Anderson medical professionals “to observe and fine-tune treatment plans for patients, while helping them recognize adverse events that may occur throughout the care continuum.”

According to the National Institutes of Health, clinical trials are at the heart of all medical advances. Clinical trials serve to uncover better ways to treat, prevent, diagnose and understand human disease. They provide mesothelioma researchers, and all cancer researchers, with critical information needed to allow them to move their findings from the lab to patients. One way that Watson will benefit cancer patients is by providing a ‘map’ of all clinical trials a patient is eligible for and then identifying the best fit for the given patient.

For many cancer patients, clinical trials may offer them the best available treatment as well as the opportunity to receive new, potentially more effective therapies against their disease.

The ultimate goal for the Cancer Center’s use of the Expert Advisor is “to advance the cancer center’s goal of treating patients with the most effective, safe and evidence-based standard of care available.”

In 2013, MD Anderson Cancer Center was named as the nation’s best hospital for cancer care by US News & World Report. This was the seventh straight year for the ranking, and the tenth time in the last 12 years for the honor. According to the hospital’s website, “MD Anderson’s Thoracic Center cares for more patients with mesothelioma than almost any other center in the United States.” In addition, mesothelioma patients at MD Anderson are treated by a specially trained support team of experts in their fields and mesothelioma. Anne S. Tsao, M.D., Director of the Mesothelioma Program is one of the leading authorities of mesothelioma in the US and is also one of the strongest advocates for taking a personalized treatment approach to mesothelioma.

3,000 Americans are diagnosed with mesothelioma each year. There is no known cure for the cancer, however, personalized care and treatment focused on each patient’s specific characteristics can improve the survival and quality of life.

Author: Nancy Meredith