01. Improving Survival
Improving Mesothelioma Survival
When patients are diagnosed with mesothelioma, they must work with their medical care team to develop a treatment plan. Treatments can be conventional, consisting of surgery, chemotherapy and radiation, or they may involve experimental treatments and clinical trials, often depending on the patient’s response to conventional treatment and stage of cancer. For late-stage patients, experimental methods may be the best option, if they are eligible. Together, improvements in diagnostic tools and treatment techniques have shown successes for those diagnosed with malignant mesothelioma.
Factors Impacting Long-Term Survival
- Early detection: The best way to improve mesothelioma survival rate is through early detection. New blood tests and biomarkers, such as mesothelin and HMGB1, show promise in helping to detect mesothelioma before it advances too far to be treated effectively.
- Chemotherapy advancements: Drugs like Alimta® have shown success in extending life expectancy for mesothelioma patients, along with newer chemotherapy techniques, like HIPEC, a heated chemotherapy wash used to treat peritoneal mesothelioma.
- Emerging treatments: New experimental treatments like immunotherapy, gene therapy and photodynamic therapy have shown success in treating mesothelioma cancer.
- Clinical trials: As seen through many survivor stories, clinical trials can offer hope to patients with new treatment techniques that might be able to lengthen life expectancy, especially when conventional treatments have proven unsuccessful.
- Enhanced surgeries: Advancements in surgery, including SMART (Surgery for Mesothelioma after Radiation Therapy) and HIPEC (Hyperthermic intraperitoneal chemotherapy), have shown success in killing cancer cells and increasing survival rates.
Some mesothelioma patients experience complete remission or partial remission. Complete remission, also known as “no evidence of disease,” is when all detectable signs and symptoms of the cancer are gone and the patient has completed treatment. Partial remission means a tumor has decreased in size or there is less cancer throughout the body, allowing some patients to pause treatment as long as the cancer doesn’t advance again. Both forms of remission can allow patients to live a full life without harsh symptoms and continuous treatment. However, with the potential for recurrence, it’s crucial that patients maintain long-term follow-ups and monitoring.
03. Survivor Stories
Mesothelioma Survivor Stories
Long-term mesothelioma survivors are supporters and advocates, sharing their experiences with the mesothelioma community, fighting for an asbestos ban and raising awareness for the disease and risks associated with asbestos exposure. Their stories inspire hope and affirmation for mesothelioma patients who are recently diagnosed or those undergoing treatment, and are proof long-term survival is possible, especially as diagnostic tools and treatments continue to advance and improve. Read about some courageous mesothelioma survivors below.
Heather Von St. James
Heather Von St. James was 36 years old when she gave birth to her daughter, Lily Rose, in 2005. Three months later, she was diagnosed with pleural mesothelioma. Heather’s diagnosis was a result of secondhand asbestos exposure as a child. Her father was exposed to asbestos at work and would come home with asbestos dust all over his clothing. Heather frequently wore his coat, and unknowingly inhaled asbestos fibers.
Without treatment, Heather faced a prognosis of 15 months. Doctors told her she could live five years at most with conventional treatment like chemotherapy. Not satisfied with this prognosis, Heather and her husband Cameron decided to pursue an aggressive surgical procedure that they felt would give her the greatest chance at a long, cancer-free life. On February 2, 2006, Heather underwent an extrapleural pneumonectomy, which removed her lung and other impacted tissues. Heather and her sister named this day Lung Leavin’ Day, a day that she will always remember.
With strong faith, support from her family and friends and a vibrant sense of humor, Heather emerged from a multi-month course of treatment cancer-free. Every year on the anniversary of her surgery, Heather and her family and friends celebrate Lung Leavin’ Day. Heather has dedicated her life after surgery to spreading awareness and hope and has become a tireless advocate for mesothelioma patients, research and banning asbestos.
Heather’s Treatment Approach
Heather’s treatment, an extrapleural pneumonectomy, was a relatively new procedure pioneered by Dr. David Sugarbaker of Brigham and Women’s Hospital in Boston, MA. Surgeons removed her left lung and the cancerous pleura, also replacing her diaphragm and the lining of her heart with surgical gore-tex. Her chest cavity was then bathed with a heated chemotherapy solution. After recovering from surgery, Heather underwent four chemotherapy sessions and 30 days of radiation therapy.
Extrapleural pneumonectomy is an extremely dangerous procedure involving a high degree of technical difficulty. It is only suitable for sufficiently healthy patients whose cancer has not spread from the chest cavity. While the surgery is an aggressive treatment, Heather’s experience offers hope to patients diagnosed with malignant pleural mesothelioma.
Resources for Mesothelioma Patients
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 as a result of her secondhand asbestos exposure and was given only three months to live.
Mavis’s Treatment Approach
Mavis underwent chemotherapy, followed by several other clinical trials to extend her life expectancy, despite continued tumor growth. With advice from her physician and a referral from her oncologist, Mavis was able to participate in an immunotherapy clinical trial that ultimately allowed her to defy her prognosis through to today. Mavis is now undergoing treatment again, but her long-term survival experience has offered hope to others and shows the promise of clinical trials. She continues to raise awareness of the dangers of asbestos and share her journey.
Paul Cowley was diagnosed with pleural mesothelioma in 2012 at age 34. Given the type of mesothelioma, Paul faced a life expectancy of 12 – 24 months, which was devastating for Paul, his wife Claire and Ethan, their infant son. Paul’s exposure to asbestos is thought to have occurred during his time in school as a child through the 1980s, based on the time of his diagnosis and the latency period of mesothelioma. Schools built during this time often used asbestos-containing materials, and many schools may still contain asbestos today.
Paul has beaten the odds, surviving more than five years, a feat that only 9% of mesothelioma patients accomplish. Claire Cowley has been a caregiver to Paul and together they’ve been able to watch their son grow. Paul has also committed his time to raising awareness about the dangers of asbestos and mesothelioma.
Paul’s Treatment Approach
Paul’s young age and overall good health allowed him to undergo an aggressive multimodal treatment plan, including two surgeries to tumors from his pleura and nearby tissues, along with six rounds of chemotherapy. His wife Claire noted that this was “the hardest six months of his life,” but that perseverance has made him stronger than ever.
Paul has been cancer-free since completing treatment, beating the odds that were given to him. Although he has been unable to work, Paul now gets to spend time with his family that he didn’t think he would have, grateful to be a long-term mesothelioma survivor.
Paul Kraus was born into a Nazi camp in Austria. He later escaped with his family and moved to Australia, the country with some of the highest rates of mesothelioma cases in the world due to a high prevalence of asbestos. Paul was exposed to asbestos in 1962 during a summer job and was diagnosed with peritoneal mesothelioma in 1997, given just weeks to live.
Paul turned to alternative medicine and miraculously managed to halt the spread of his cancer. He has written extensively about his experiences and is one of the longest-living mesothelioma survivors in the world.
Paul’s Treatment Approach
Paul has and continues to use a strict diet, meditation, nutritional supplements and other alternative treatments to treat his mesothelioma and maintain good health. He regularly undergoes ozone therapy, a controversial treatment based on the theory that cancer cells don’t thrive in oxygen-rich environments. Paul attributes much of his well-being to his positive outlook on living and continues to demonstrate the possibilities of alternative treatment methods through his story.
Stephen Jay Gould
Stephen Jay Gould was a popular scientific author, paleontologist and evolutionary biologist, authoring over 20 books and hundreds of essays published in Natural History magazine. He was diagnosed with peritoneal mesothelioma in 1982, and given a life expectancy of around eight months. After his diagnosis, he wrote “The Median Isn’t the Message,” an essay about his reaction to the news and poor prognosis. His essay has been cited as a source of comfort and hope by many cancer victims, along with his experience battling mesothelioma.
Stephen’s Treatment Approach
Stephen underwent multiple surgeries in combination with radiation and chemotherapy. After experiencing severe chemotherapy side effects, particularly nausea, Stephen began using medical marijuana. He credited the drug for its medicinal effects and for helping him stay positive throughout his treatment. Stephen noted that there is a body of evidence suggesting that a positive attitude can boost the immune system, a benefit that he felt was crucial to his recovery. As a result, he became a vocal proponent of medical marijuana. Stephen lived 20 years after his diagnosis and died in 2002 of lung cancer, unrelated to mesothelioma.
Louise “Lou” Williams
Louise “Lou” Williams faced secondhand exposure after her father was exposed at work, and also faced direct exposure working three years in a contaminated Melbourne office. Her father passed away in 1985 from mesothelioma, and Lou faced a peritoneal mesothelioma diagnosis in 2003, following eight years of unexplained chronic fatigue and a year and a half of misdiagnoses.
Lou was able to beat her cancer, but was then diagnosed with pleural mesothelioma in 2009. Continuing her fight, Lou advocated for victims of mesothelioma and other asbestos-related diseases. She pushed for the accessibility of new immunotherapy drugs like Keytruda®, worked towards a global asbestos ban, and was overall sought to globally advocate, educate and support those affected by the toxin or mesothelioma.
Louise’s Treatment Approach
Lou’s peritoneal mesothelioma treatment consisted of surgical removal of the tumors and an intensive 18 sessions of chemotherapy. Her pleural mesothelioma treatment involved three aggressive surgeries and chemotherapy. After her body began to shut down, she was told she had no more options in January of 2015. Lou insisted on continuing her fight, undergoing a 14-day course of radiation followed by Keytruda®, a new immunotherapy drug that had shown promise in clinical trials for some late-stage mesothelioma patients.
For 11 months, Lou used Keytruda® and saw success in tumor reduction and alleviation of her symptoms. However, in March of 2016, she learned that her tumors were growing again with a new growth above her right lung. Lou again refused to give up and pursued a new chemotherapy regime. Lou sadly passed away on April 18, 2017, after surviving mesothelioma for nearly 15 years.