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Mesothelioma Survivors

Mesothelioma Survivor

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.

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:

Heather Von St. James

Heather Von St. James

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.

Learn more about Heather's Story

Louise “Lou” Williams

Louise “Lou” Williams

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.”

Paul Kraus

Paul Kraus

Photo Source:
paulkraus.com

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

Stephen Jay Gould

Photo Source:
Kathy Chapman Online

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

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.

Imaging Tests
Blood Tests
Biopsies

Early Detection

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.

Experimental Treatments

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.

Enhanced Surgeries

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.

Clinical Trials

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.


View Sources

Sources

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Kraus, Paul. Surviving Mesothelioma and Other Cancers: A Patient's Guide. (Raleigh: Cancer Monthly, 2005)

Mitchell, Steve. "Clearing the Air Over Asbestos." ScienceNOW Daily News, 10 April 2008.

Staff. "Mesothelioma and the Immune System." Cancer Monthly, April 2007.

Roswell Park Cancer Institute. (n.d.). Mesothelioma treatments. Retrieved from Roswell Park Cancer Institute website March 13, 2014

Stephen Jay Gould, In Lester Grinspoon, ed., Marihuana, The Forbidden Medicine, New Haven: Yale University Press, 1993, 39-41. Retrieved from The Unofficial Stephen Jay Gould Archive.

Dostert, C., Pétrilli, V., Van Bruggen, R., Steele, C., Mossman, B., & Tschopp, J. (2008). Innate immune activation through NALP3 inflammasome sensing of asbestos and silica. Science, 320(5876), 674-677. doi:10.1126/science.1156995

Tabata, C., Shibata, E., Tabata, R., Kanemura, S., Mikami, K., Nogi, Y., . . . Nakano, T. (2013). Serum HMGB1 as a prognostic marker for malignant pleural mesothelioma. BMC Cancer, 13(205). doi:10.1186/1471-2407-13-205

Ostroff, R. M., Mehan, M. R. et al. (2013). Early detection of malignant pleural mesothelioma in asbestos-exposed individuals with a noninvasive proteomics-based surveillance tool. PLOS One, 7(10). doi:10.1371/journal.pone.0046091

Grady, D. (2011, September 12). An immune system trained to kill cancer. The New York Times. Retrieved 20 March 2014

Wang K, Bodempudi V, Liu Z, Borrego-Diaz E, Yamoutpoor F, et al. (2012) Inhibition of Mesothelin as a Novel Strategy for Targeting Cancer Cells. PLoS ONE, 7(4). doi: 10.1371/journal.pone.0033214

Hassan, R. et al. (2013). Major cancer regressions in mesothelioma after treatment with an anti-mesothelin immunotoxin and immune suppression. Science Translational Medicine, 5(208), 208ra147. doi:10.1126/scitranslmed.3006941

Yoon, C. K. (2002, May 21). Stephen Jay Gould, 60, is dead; enlivened evolutionary theory. The New York Times. Retrieved 20 March 2014.

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