01. Survivor Stories
Mesothelioma Survivor Stories
Mesothelioma survivor stories provide hope for patients recently diagnosed with mesothelioma. These stories are inspirational for those undergoing treatment. They prove long-term survival is possible due to improved diagnostic tools and mesothelioma treatments.
The mesothelioma community is small but supportive. Long-term mesothelioma survivors share their experiences and stories to inspire other patients. Mesothelioma survivors also often raise awareness about asbestos exposure. They advocate for the mesothelioma community and people at risk of exposure.
Read about courageous mesothelioma survivors below.
Heather Von St. James: Pleural Mesothelioma Survivor
Heather Von St. James was 36 years old when she was diagnosed with pleural mesothelioma. Her diagnosis came three months after giving birth to her daughter Lily Rose in 2005.
Heather Von St. James’ Diagnosis & Treatment
- Asbestos Exposure: Secondary exposure from her father’s asbestos-covered coat
- Year of Diagnosis: 2005
- Type of Mesothelioma: Pleural mesothelioma
- Treatment: Extrapleural pneumonectomy, chemotherapy and radiation
Without treatment, Heather faced a prognosis of 15 months. She was not satisfied with this prognosis and decided to pursue an experimental, aggressive surgical procedure. The late Dr. David Sugarbaker pioneered the procedure at Brigham and Women’s Hospital. Heather and her husband, Cameron, felt the surgery would give her a chance at a long, cancer-free life.
Heather underwent an extrapleural pneumonectomy, which removed her cancerous lung and other impacted tissues. Her chest cavity was then bathed with a heated chemotherapy solution. After recovering from surgery, Heather underwent four chemotherapy sessions followed by 30 days of radiation therapy.
Heather’s surgery and following treatment were successful. She has been a pleural mesothelioma survivor for more than 17 years.
As a mesothelioma survivor, Heather has dedicated her life to raising awareness. Every year on the anniversary of her surgery, Heather and her loved ones celebrate Lung Leavin’ Day. The annual event celebrates survival and raises funds for mesothelioma research. Heather is a tireless advocate for mesothelioma patients. She continuously supports new cancer research and an asbestos ban.
Heather is also a frequent contributor to Mesothelioma.com. She is happy to speak with patients and their loved ones about what to expect while fighting mesothelioma.
Speak With a Mesothelioma Survivor
- 17-year survivor
- A successful surgery
- Coping strategies
Mavis Nye: Pleural Mesothelioma Survivor
In June 2009, Mavis Nye was diagnosed with mesothelioma as a result of secondhand asbestos exposure. She was given a prognosis of three months.
Mavis Nye’s Diagnosis & Treatment
- Asbestos Exposure: Secondary exposure from washing her shipwright husband’s asbestos-covered clothing
- Year of Diagnosis: 2009
- Type of Mesothelioma: Pleural mesothelioma
- Treatment: Chemotherapy and immunotherapy clinical trials
Mavis underwent chemotherapy and then participated in several clinical trials to extend her life expectancy.
Chemotherapy had stopped working for Mavis, and her tumors grew. She learned about an immunotherapy clinical trial testing Keytruda®️. Her participation in the clinical trial allowed her to live years past her initial prognosis.
Mavis is still fighting mesothelioma cancer and undergoing treatment. Her long-term survival shows the promise of clinical trials. She continues to raise awareness of the dangers of asbestos and share her journey on her blog.
Paul Cowley: Pleural Mesothelioma Survivor
Paul Cowley was diagnosed with malignant pleural mesothelioma in 2012 at age 34.
Paul Cowley’s Diagnosis & Treatment
- Asbestos Exposure: Possible exposure at school in the 1980s
- Year of Diagnosis: 2012
- Type of Mesothelioma: Pleural mesothelioma
- Treatment: Surgery and chemotherapy
Paul’s young age and good health allowed him to undergo an aggressive multimodal treatment plan. The plan included two surgeries to remove tumors from his pleura and nearby tissues. Paul also underwent six rounds of chemotherapy.
Paul’s wife, Claire Cowley, said this period was “the hardest six months of his life.” However, perseverance made him stronger than ever. During this period, the couple also raised their young son, and Claire was Paul’s caregiver.
As a result of treatment, he has survived more than eight years. Paul now spends time with his family he didn’t think he would have.
He continues to raise awareness about the dangers of asbestos and mesothelioma. Paul is grateful to be a long-term mesothelioma survivor.
Jim Dykstra: Peritoneal Mesothelioma Survivor
Jim Dykstra was diagnosed with peritoneal mesothelioma in 2013. Jim’s diagnosis of mesothelioma came after a testicular cancer diagnosis in 2011.
Jim Dykstra’s Diagnosis & Treatment
- Asbestos Exposure: Occupational exposure during a 26-year career in the HVAC industry
- Year of Diagnosis: 2013
- Type of Mesothelioma: Peritoneal mesothelioma
- Treatment: Cytoreductive surgery, HIPEC, radiation, chemotherapy and immunotherapy
To treat his mesothelioma, Jim underwent cytoreductive surgery. His surgery was followed by hyperthermic intraperitoneal chemotherapy (HIPEC). Jim also underwent radiation and chemotherapy, and later immunotherapy.
Jim is still battling the disease today and is a 7-year mesothelioma survivor. Jim’s advice to other mesothelioma patients is to “be strong and remember you are not alone in this fight.”
Paul Kraus: Peritoneal Mesothelioma Survivor
Paul Kraus was born into a Nazi camp in Austria. He later escaped with his family and moved to Australia. Due to a high prevalence of asbestos, Australia has high rates of mesothelioma.
Paul Kraus’s Diagnosis & Treatment
- Asbestos Exposure: Occupational exposure at a summer job in 1962
- Year of Diagnosis: 1997
- Type of Mesothelioma: Peritoneal mesothelioma
- Treatment: Alternative therapies
Paul was diagnosed with peritoneal mesothelioma in 1997. At diagnosis, Paul was given only weeks to live.
Paul turned to alternative treatments and managed to halt the spread of his cancer. He keeps a strict diet, takes nutritional supplements and meditates.
Paul also regularly undergoes ozone therapy. Ozone therapy is a controversial treatment based on the theory that cancer cells don’t thrive in oxygen-rich environments. Paul also attributes his well-being to his positive outlook.
He is one of the longest-living mesothelioma survivors in the world and has written about his experiences.
Resources for Mesothelioma Patients
02. Remembering Mesothelioma Survivors
In Remembrance of Late Mesothelioma Survivors
Although some mesothelioma survivors have passed away, many outlived their initial prognosis. Their stories still give hope to patients and highlight the importance of treatment advancements.
Learn about these cherished members of the mesothelioma community below.
Stephen Jay Gould: 20-Year Peritoneal Mesothelioma Survivor
Stephen Jay Gould was a popular scientific author, paleontologist and evolutionary biologist. Gould authored more than 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 Stephen’s diagnosis, he wrote “The Median Isn’t the Message.” It is an essay about his reaction to his diagnosis and poor prognosis. Stephen’s essay has been cited as a source of comfort and hope by many cancer victims.
Stephen underwent multiple surgeries in combination with radiation and chemotherapy. After experiencing severe chemotherapy side effects, Stephen used medical marijuana. He credited the drug for its medicinal effects and for helping him stay positive throughout his treatment.
Despite his initial mesothelioma prognosis, Stephen lived 20 years after his diagnosis. He died in 2002 of lung cancer unrelated to mesothelioma.
Louise “Lou” Williams: 15-Year Peritoneal and Pleural Mesothelioma Survivor
Louise “Lou” Williams was diagnosed with peritoneal mesothelioma in 2003. Lou’s diagnosis came after eight years of unexplained chronic fatigue and one year and a half of misdiagnoses. Her treatment consisted of surgical removal of the tumors and 18 sessions of chemotherapy.
Lou initially overcame peritoneal mesothelioma but was diagnosed with pleural mesothelioma in 2009. Her pleural mesothelioma treatment involved three aggressive surgeries and chemotherapy.
Despite being told she had no more options in January of 2015, she insisted on continuing her fight.
She underwent a 14-day course of radiation followed by Keytruda®. At the time, Keytruda® was a new immunotherapy drug that had shown promise in clinical trials. Throughout her treatment, Lou advocated for the accessibility of new immunotherapy drugs and worked towards a global asbestos ban.
Lou sadly passed away on April 18, 2017, after surviving mesothelioma for nearly 15 years. Lou was a fierce advocate, educator and supporter of those affected by asbestos exposure and mesothelioma.
Emanuel Costa: 4.5-Year Peritoneal Mesothelioma Survivor
Emanuel Costa was diagnosed with peritoneal mesothelioma at age 35. Emanuel’s mesothelioma was treated with multiple rounds and types of chemotherapy, including Gemzar® (gemcitabine) and cisplatin.
After undergoing chemotherapy, Emanuel’s doctors recommended debulking surgery. Following a period of recovery, he again underwent chemotherapy, radiation and other treatments to stop the cancer’s spread.
Although his cancer continued to spread, Emanuel outlived his initial prognosis of six months. He survived four-and-a-half years with the disease.
Emanuel is remembered by his wife, Gina Martucci, and their two children. Emmanuel’s daughter Sarah remembers his strength and perseverance during his cancer journey. The family continues to honor Emanuel’s memory by advocating for mesothelioma cancer research.
03. Improving Mesothelioma Survival
How Treatment Is Improving Mesothelioma Survival
Advancements in treatment techniques and diagnostic tools have increased mesothelioma survival rates. Improved diagnostic tools have helped doctors detect mesothelioma early in some cases. Early diagnosis and treatment are crucial to improving mesothelioma life expectancy.
Researchers continue to test the efficacy of new treatments and combinations. The chemotherapy technique HIPEC has seen recent success. In one study, researchers found peritoneal mesothelioma patients treated with HIPEC following surgery had a 5-year survival rate of 52%.
Some new experimental treatments in clinical trials have also been successful. Clinical trials testing immunotherapy, gene therapy and other new treatments have extended survival for some patients.
Mesothelioma patients who pursue treatment may be more likely to improve long-term survival than those who forgo treatment. However, life expectancy can vary based on cancer type, stage and a patient’s health.
“Survivorship is a test of resilience. I never understood when people told me that I was going to come out stronger, but now on the other side, I feel like I can do anything,”
-Heather Von St. James
Factors Impacting Long-Term Mesothelioma Survival
There is no cure for mesothelioma cancer, but there are factors that impact life expectancy. Although some factors are out of an individual’s control, there are proactive measures patients can take to potentially prolong survival.
Factors that impact long-term survival are:
- Age and overall health: A patient’s health and age may affect the immune system’s ability to fight mesothelioma cancer. A patient with fewer health complications may have better long-term survival.
- Early diagnosis: Early detection is the best way to improve mesothelioma survival. New blood tests and biomarkers, such as mesothelin and HMGB1, are helping detect mesothelioma before it advances.
- A patient’s unique diagnosis: The location, cell type and stage of mesothelioma help determine a patient’s prognosis and treatment options. A mesothelioma specialist can help patients develop a treatment plan that best suits their diagnosis.
- A mesothelioma doctor and cancer center: Finding an oncologist with experience treating malignant mesothelioma can help patients get the best treatment possible. Top doctors are often connected with mesothelioma cancer centers where teams specialize in treating the disease.
- The right treatment plan: A personalized treatment plan caters to a patient’s specific diagnosis. Doctors may recommend standard treatments, clinical trials or a combination of treatments to best improve life expectancy.
Support for Mesothelioma Survivors
- Establishing a strong support system
- Attending support groups
- Connecting with other survivors
- Reaching out to a patient advocate
- Talking with your medical care team
A mesothelioma diagnosis can be isolating. The journey can be difficult for patients and their loved ones. A support system and positive outlook can improve a patient’s quality of life. A sense of support can also help them face treatment and their fight against cancer.
There are support resources for patients, survivors and caregivers.
Can Mesothelioma Patients Achieve Remission?
Some mesothelioma patients experience complete remission or partial remission.
Complete remission occurs when all detectable signs and symptoms of the cancer are gone. Complete remission is also called “no evidence of disease.”
Partial remission means a tumor has decreased in size. It can also mean there is less cancer throughout the body. Partial remission may allow 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. However, even patients in remission may experience a recurrence of cancer. Patients should maintain long-term follow-ups and monitoring with their mesothelioma care team.
Every mesothelioma survivor has a unique cancer journey, but together they unite the mesothelioma community. These stories help patients inspire and support each other as they fight this disease.