There are few long-term mesothelioma survivors. Due to the long latency period of the disease, most patients are diagnosed at a late stage, leaving them with an aggressive malignancy and few treatment options.
Hope does exist, however. Every situation is unique, and today we have better tools than ever to detect mesothelioma earlier, such as blood tests that can look for biomarkers. Furthermore, researchers continue to make advancements in treatment, and innovative types of therapy that have helped improve mesothelioma patient’s chances of survival. Their cases may provide clues to researchers that will help improve treatments, extend life expectancy, and, with luck, someday find a cure.
Speak with a MESOTHELIOMA SURVIVOR
Coordinate a time to speak with Heather Von St. James.
Learn Firsthand About:
- Heather’s Amazing Story
- Dr. David Sugarbaker’s Successful Treatment Approach
- Life After Surviving a Mesothelioma Diagnosis
- Coping Strategies for Patients & Family Members
Mesothelioma Survivors in Remission
As any cancer survivor knows, there is no true cure for the disease. However, in some cases, all signs and symptoms of cancer can disappear, allowing the survivor to live in relative health and well-being, sometimes for many years to come. This is known as complete remission.
Complete remission is the goal of all curative treatments for mesothelioma. The removal or death of cancer cells through surgery, chemotherapy, radiation, and emerging treatments can, in some cases, allow mesothelioma patients to live many years – sometimes indefinitely – with the disease in remission.
Mesothelioma Survivor Stories
Long-term mesothelioma survivors often become advocates, supporters, and even caregivers for others. Their stories inspire hope and affirmation for mesothelioma patients who are recently diagnosed or undergoing treatment. Read about some courageous mesothelioma survivors who are in remission below:
In 2006, at the age of 36, Heather Von St. James gave birth to her daughter, Lily Rose. Just three months later, she was diagnosed with mesothelioma–startling news for someone so young. Heather had been exposed to asbestos second-hand as a child when her father would return home from work with his clothing covered in asbestos dust. Heather often wore his coat, and in the process she unwittingly breathed in the fibers.
Conventional treatment options relative to Heather’s diagnosis came with a life expectancy of at most 5 years. Dissatisfied with this targeted life expectancy, Heather and her husband, Cameron, opted for a risky surgical procedure—an extrapleural pneumonectomy—with the belief that it held the greatest possibility of a cancer-free life. Heather had her lung removed on February 2, 2007—an event she and her sister jokingly nicknamed LungLeavin’ Day.
With strong faith, support from a host of family and friends, and a vibrant sense of humor, Heather emerged from a multi-month course of treatment healthy and cancer-free. Every year on the anniversary of her surgery, Heather and her family and friends celebrate LungLeavin’ Day. Heather has dedicated her life after surgery to spreading awareness and hope, and has become a tireless advocate for mesothelioma patients, research, and awareness.
Heather’s Treatment Approach
Heather’s treatment, an extrapleural pneumonectomy, is a relatively new procedure pioneered by Dr. David Sugarbaker of Brigham and Women’s Hospital in Boston, MA. Surgeons removed her left lung, the cancerous pleura, her diaphragm, and the lining of her heart, replacing the latter two with surgical gore-tex. Her chest cavity was then bathed with a heated chemotherapy solution.
Extrapleural pneumonectomy is an extremely dangerous procedure involving a high degree of technical difficulty. Some doctors refuse to perform it, believing that the risks outweigh the benefits. It is only suitable for sufficiently healthy patients whose cancer has not spread from the chest cavity.
Mavis describes herself as an ordinary woman who married a shipwright at the age of 18. For 48 years, she washed her husband’s clothes when he came home from work, unaware that the dust on his jacket was full of deadly asbestos. By simply shaking his dusty clothes prior to putting them in the washing machine, Mavis was unknowingly putting herself at risk for developing a terrible disease years down the road. In June 2009, Mavis was diagnosed with mesothelioma and given only three months to live.
Mavis’s Treatment Approach
Chemotherapy worked to extend her life for another year beyond that, but eventually the tumors started growing again. Mavis then went on to participate in several trials that did manage to buy her some more time, but again did not stop her tumor growth. On the advice from a doctor she was working with, Mavis was able to get her oncologist to refer her for a trial that was getting underway at the Royal Marsden. Mavis was given a new lease on life through this immunotherapy trial, which has kept her cancer free much longer than expected.
Today Mavis encourages mesothelioma patients to stay positive and find a trial that works for them. She continues to fight her disease, while at the same time sharing her experience with her successful trial and raising awareness worldwide about the dangers of asbestos use and her journey with mesothelioma.
Paul Cowley and his wife Claire could hardly believe it when they got the news that he had pleural mesothelioma. He was only 34, much younger than most people diagnosed with this rare and deadly form of cancer. Worse, the doctors told the Cowley family – which included not only Paul and Claire, but also their infant son Ethan – that the disease would inevitably lead to Paul’s death in short order.
That diagnosis came in 2012, but Paul has beaten the odds by surviving beyond five years – a feat that only 9% of mesothelioma patients accomplish. While many days are not easy, the Cowleys count every single one as a blessing. In addition to using his time as a survivor to watch his son grow and spend time with his supportive wife, Paul has also committed himself to raising awareness for mesothelioma and the asbestos that caused it.
Paul is a member of a newer wave of mesothelioma victims who were exposed to asbestos at a very young age, rather than being exposed on the job as many older mesothelioma patients were. Based on his age and the long latency period of mesothelioma, the most likely exposure locations were the schools Paul attended while growing up in the 1980s. Many buildings built before that time period contained asbestos, and it wasn’t until years later that Congress enacted programs like the Asbestos Hazard Emergency Response Act to remove asbestos in schools.
Paul’s Treatment Approach
Because of his young age, Paul was able to attempt an aggressive multimodal treatment regimen that included multiple avenues of attack against the cancer. Within a period of six months, he underwent two operations to remove a series of tumors from his pleura and nearby tissues. In addition, he took six rounds of chemotherapy during that time period in order to kill any cancerous cells that might have been left behind after the surgeries. Claire has said that the period was the “hardest six months of his life,” but the family believes that Paul’s perseverance has made him spiritually stronger than ever.
While mesothelioma cannot be cured outright, the good news is that Paul has remained cancer-free ever since his treatment. He has definitely beaten the odds, and while he is no longer able to work, he gets to spend his days with his family, which is more than he could have asked for when the doctors handed him a dire prognosis at the outset.
Paul Kraus has lived with peritoneal mesothelioma for nearly two decades. Born into a Nazi labor camp in Austria, he escaped as an infant with his mother and brother and soon emigrated with his family to Australia. Asbestos is prevalent in Australia, and as a result, the country suffers from some of the highest rates of mesothelioma in the world. Mr. Kraus was exposed as a youth on a summer job he took in 1962. The cancer was latent until 1997 at which time he was diagnosed and given just weeks to live.
Mr. Kraus turned to alternative medicine and miraculously managed to halt the spread of his cancer. He has written extensively about his experiences and as of this writing (early 2014) is the longest-lived mesothelioma survivor in the world.
Paul’s Treatment Approach
Mr. Kraus utilizes a strict diet, meditation, nutritional supplements, and other alternative treatments to keep his mesothelioma in check. He undergoes ozone therapy, a controversial treatment based on the theory that cancer cells don’t thrive in oxygen-rich environments, on a regular basis. Additionally, Mr. Kraus emphasizes the importance of his positive outlook on living and the beneficial effect this outlook has on his overall well-being.
Stephen Jay Gould
One of the most popular scientific authors of recent times, evolutionary biologist Stephen Jay Gould, authored more than 20 books on a variety of scientific subjects, and published hundreds of essays in Natural History magazine. Gould lived for twenty years after being diagnosed with mesothelioma in 1982. After his diagnosis, he wrote an essay, The Median Isn’t the Message, about his reaction to the news and to the realization that half of all mesothelioma patients died within eight months of diagnosis. His essay has been cited as a source of comfort and hope by many cancer victims.
Stephen Jay Gould died in 2002 of lung cancer that was unrelated to his mesothelioma.
Stephen’s Treatment Approach
Gould underwent multiple surgeries in combination with radiation and chemotherapy. During his year of chemo treatment, he was so overcome with nausea that he turned to marijuana. He credited the drug with allowing him to stay positive through his treatment and became a vocal proponent of medical marijuana. There is a body of evidence suggesting that a positive attitude can boost the immune system, which Gould cited as a factor in his recovery.
Resources for Mesothelioma Patients and Their Families
- Request a Free Mesothelioma Treatment Guide
- Connect with Top Mesothelioma Doctors
- Locate the Nearest Comprehensive Cancer Center
Louise “Lou” Williams was exposed to asbestos as a child in Australia (where her father was exposed through his work), and also during the three years she worked in a contaminated Melbourne office. Her father died of mesothelioma in 1985, and Lou herself was diagnosed with peritoneal mesothelioma in 2003 following eight years of unexplainable chronic fatigue and a year and a half of being misdiagnosed.
After beating that cancer, Lou was diagnosed with pleural mesothelioma in 2009. She now continues her personal fight against mesothelioma while at the same time devoting herself to activism, tirelessly advocating for victims of mesothelioma and other asbestos-related diseases and striving to fast track the drug Keytruda® (pembrolizumab) on to the Australian PBS (Pharmaceutical Benefits Scheme) for mesothelioma patients. Lou is dedicated to using the time she’s been given to helping other patients living with mesothelioma, working towards a global ban on asbestos, and overall “playing a global part in advocacy, education and support.”
Louise’s Treatment Approach
Lou’s peritoneal mesothelioma required surgery to remove the tumors, followed by an intensive regimen of chemotherapy—18 sessions in all. She underwent three separate, major surgeries for her pleural mesothelioma, which also required additional chemotherapy.
By January 2015, Lou’s body began shutting down and her oncologist informed her that there were no further options to combat her mesothelioma. Lou, determined to continue fighting, initiated a 14-day course of radiation in an attempt to target her growing tumors. In April of 2015, Lou’s oncologist introduced her to Keytruda® (pembrolizumab), a new immunotherapy drug which was showing promising results in clinical trials for some mesothelioma patients nearing the end stages of life. Despite the significant expense of the drug, Lou initiated this treatment immediately. Every three weeks for 11 months, Lou received an infusion of Keytruda®. Over time, this drug not only resulted in significant shrinkage of Lou’s tumors, but it reduced her fluids, allowed her to go off of oxygen, boosted her immune system, improved her blood panels, and most importantly, allowed her to live pain free with an excellent quality of life from June 2015 onwards.
March of 2016 delivered a setback for Lou when she learned her tumors were once again growing with some new growth showing above her right lung. Her oncologist took her off of Keytruda® and initiated a weekly course of chemotherapy. Lou credits Keytruda® for giving her life back just as she was about to lose it and states that it is because of Keytruda® that is she is now able to embark on a new regimen of chemotherapy treatment to continue to attack her mesothelioma. Lou is by no means ready to give up in her fight against mesothelioma: “Never give up, living with Mesothelioma is not easy for patient and family. Deal with what happens in the moment and let the universe take care of the big picture.”
Sadly, Lou Williams passed away on April 18, 2017 after surviving mesothelioma for nearly 15 years.
Improving Treatments for Mesothelioma Survivors
As our understanding of mesothelioma improves, scientists have identified a number of promising avenues that may play a role in boosting survival rates.
The best way to improve mesothelioma survival rate is through early detection. New biomarkers such as mesothelin and HMGB1 show promise in helping to catch mesothelioma before it advances too far to be treated effectively.
New treatments such as immunotherapy, cell identification, gene therapy, cryotherapy, and other novel therapies give doctors and patients more options in the battle against mesothelioma. Immunotherapy especially has shown great promise in increasing survivorship.
Refining surgical methods has shown to be effective in treating mesothelioma. Surgery for Mesothelioma After Radiation Therapy (SMART) and Hyperthermic Intraperitoneal Chemotherapy (HIPEC) are two techniques that have increased overall survival.
Many of the improved treatments for mesothelioma have come about as a result of clinical trials. These trials can be risky by nature, as they are designed to test the effectiveness of an unproven treatment.
There is no guarantee that the treatment will help, and side effects are often unknown and potentially dangerous. However, participation in a clinical trial can offer access to promising experimental treatments that may prove more effective than traditional options – ultimately leading to longer survival. Talk to your doctor if you’re interested in taking part in a clinical trial.
Read About More Survivors in our BlogSources
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