A mesothelioma diagnosis is nearly always a terrible shock. The disease is rare, and people often don’t realize they’ve been exposed to asbestos. Anyone who has received a diagnosis is faced with the knowledge that most mesothelioma patients only live for a few months or years.
Hope exists, however. A great many factors impact a patient’s chances of survival, including how early the tumor is detected and how far it has spread. Each patient’s situation is unique.
Researchers are making advancements in treatment and detection, and innovative types of treatment have helped some mesothelioma patients survive against all odds. Their cases may provide clues to researchers that will help improve treatments, extend life expectancy, and, with luck, someday find a cure.
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.
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 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.
The Future of Mesothelioma Treatment
As our understanding of mesothelioma improves, scientists have identified a number of promising avenues that may play a role in boosting survival rates.
The Role of the Immune System
Researchers have come to understand that the immune system plays a role in mesothelioma survival rates. A Swiss study indicates that when asbestos fibers are present in the lung tissue, the immune system eventually becomes fatigued trying to fight them off over the decades of the disease’s latency.
The earlier any type of cancer, including mesothelioma, is detected and treated, the better the chances of survival. Mesothelioma is often very advanced by the time of diagnosis because of its typical extended latency period. Researchers are exploring the presence of various biomarkers that appear with mesothelioma and may lead to more effective testing. This research offers hope for earlier detection of this disease, which could lead to more successful surgeries.
Pathogen-attacking white-blood cells do not fight the cancer cells within the body because the body produces the cancer cells and thus, the white-blood cells do not recognize the cancer cells as “foreign invaders.” Research is underway to figure out how to train the immune system to fight the cancer cells.
Scientists have been experimenting with various uses of gene therapy to combat mesothelioma, cancer, and other diseases. One method, known as suicide gene therapy, alters the genetic structure of cancer cells, lowering their natural defenses and making them more vulnerable to cancer medications. Researchers have had success using suicide gene therapy to fight mesothelioma in mice, and the technique holds great promise for the future. Like many cancer treatments, gene therapy appears to be most effective when paired with other methods, such as chemotherapy. This concept is known as multi-modality treatment and is common to most mesothelioma treatment protocols.
One new treatment option may be found in mesothelin, a protein that is naturally found on mesothelial cells but occurs in higher concentrations in mesothelioma tumors, and can thus be exploited as a kind of marker. In addition to early detection, mesothelin is the basis of several promising new treatments. When combined with recombinant “immunotoxins,” the mesothelin can spur the immune system to attack mesothelial cancer cells, potentially leading to regression.
SMART stands for Surgery for Mesothelioma After Radiation Therapy. A four-year study conducted by researchers at the University of Toronto found that three-year survival rates more than doubled when mesothelioma patients underwent a five-day course of intensity-modulated radiation therapy (IMRT) prior to surgery.
Heated Chemotherapy Treatments
Hyperthermic intraperitoneal chemoperfusion (HIPEC) and intrapleural heated chemotherapy (HITOC) are both relatively new procedures. After the tumor is removed (cytoreduction), a heated chemotherapy solution is circulated throughout the patient’s abdominal or chest cavity. While the surgery leading up to the chemo bath carries a significant risk of complications, HIPEC carries a number of advantages over conventional chemotherapy: higher concentration, better penetration into cells, better ability to target the cancer’s location within the body, and fewer side effects.
Clinical trials are, by nature, risky because their primary purpose is to test the effectiveness of an unproven treatment. There is no guarantee that the treatment will help. Side effects are often unknown and potentially dangerous. However, participation in a clinical trial can give you access to promising experimental treatments that may potentially prove more effective than your other options. Talk to your doctor if you’re interested in taking part in a clinical trial.
Continued research into mesothelioma and potentially life-saving treatments is imperative as the rates for this disease continue to rise and are anticipated to peak in the coming decades. A better understanding of mesothelioma, more effective methods of detection, and improved treatments, surgical or otherwise, can all work together to help increase a victim’s chances of survival. The survivors who have come before may help point the way forward.
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