Survivors of pleural mesothelioma share their stories to offer hope and encouragement to others battling this disease.
Pleural mesothelioma is associated with a poor prognosis, but long-term survivors have proven newer, better therapies and specialized care are helping some patients live longer.
It’s not the statistics that provide hope, but words from survivors that reveal the strength and determination it took for them to outlive the odds.
There is hope. Personalized medicine and new immunotherapies are under development in clinical trials.
And although there is still no cure for pleural mesothelioma, current treatments are helping certain patients live for years with the cancer.
Survivors of pleural mesothelioma are telling their stories, providing insight into why and how some patients are beating the odds.
“I tell people all the time, don’t just take what the first doctor tells you and accept it. That’s wrong. Get other opinions and see what is out there,” said Kathleen A. from Wisconsin, who was diagnosed in 2010. “There are treatments that are working. Find them.”
Some patients live longer because of the treatments they elect, their overall health and how fast their cancer grows.
Survival rates are based on a number of factors, including stage of the disease, age, overall health of the patient, location of the tumors and strength of the patient’s immune system.
A huge factor is the care a patient receives and the doctor who is spearheading the treatment. Because many medical professionals rarely see pleural mesothelioma, it’s important for patients to find a mesothelioma specialist who understands the intricacies of this rare disease and a cancer center that knows how to treat it effectively.
A multimodal approach that includes a combination of surgery, radiation and chemotherapy has worked well for some. Others have found success with clinical trials testing immunotherapy, which uses the patient’s own immune system to fight the disease.
Another reason for varying survival rates is individual response to treatment. Some patients respond particularly well to a specific treatment, while others have little to no response.
At a doctor’s appointment in November 2009, Joanne D. learned she had pleural mesothelioma.
“It was a heart-wrenching moment. I felt like I was hit in the gut. I was lost for words. All I wanted to do was scream. I didn’t know what to do or where to turn to for help,” Joanne said.
She has come a long way since the day she was diagnosed, but her journey hasn’t been easy.
After seeking a specialist and receiving a second opinion, Joanne trusted Dr. David Sugarbaker, who worked at Brigham & Women’s Hospital at the time, with her care. Sugarbaker ordered a pleurectomy, a surgery to remove the lining of the lungs.
Joanne has since had two recurrences, followed by surgery and chemotherapy.
“I may have been diagnosed with mesothelioma, but I am going to be a survivor of this disease. You can bet on that,” she said.
Joanne hopes her story will encourage other pleural mesothelioma patients.
“Attitude is everything,” she said. “It’s what gets you to the next step as a survivor. And don’t underestimate the power of a support system. My friends and family have been everything. Don’t be afraid to ask for help.”
From: Kennesaw, Ga.
Tim C. passed the 10-year survivor mark in 2012, grateful to see his two oldest children go to college and get married.
He credits the aggressive extrapleural pneumonectomy (EPP) surgery for allowing him to survive this long. He was diagnosed younger — in his 40s — than most pleural mesothelioma patients.
He also responded well to the treatment plan he received in Boston with Dr. David Sugarbaker. In the last 10 years, he traveled extensively, including a motorcycle trip across the country.
“Controlling the pain has been a constant battle for me,” he said. “That’s no fun, but I’ve done a lot these last 10 years. I didn’t sit around. I lived another lifetime.”
Sydney R. was diagnosed with pleural mesothelioma in June 2011 and was given 12 to 18 months to live.
She didn’t like that prognosis, so she did her own research. Sydney got second and third opinions, questioned everything her specialists said and did all she could to get the best possible treatment.
To date, she has had a pleurodesis, multiple rounds of chemotherapy and radiation, a pleurectomy and a pneumonectomy. She is ready to keep fighting.
Clinical trials often offer the latest and most innovative therapies that have not been approved yet. Gene therapy and immunotherapy are among the options available through clinical trials.
Numerous survivors have benefited from participating in a clinical trial for pleural mesothelioma. Immunotherapies, new chemotherapy drug combinations and even surgery are available through clinical trials.
Andy A. spent 20 years of his life in the home improvement industry, where he was regularly exposed to asbestos. He was diagnosed with pleural mesothelioma in February 2010.
He looked to specialist Dr. David Jablons for his care and enrolled in a clinical trial involving Amatuximab (MORab-009), an immunotherapy drug.
Andy is still going strong, thanks to his positive response to the clinical trial.
One of the most critical factors in survival is early detection, which increases the treatment options and improves the odds of a lengthy survival. Detecting the cancer early is difficult because there are no early warning signs.
Pleural mesothelioma doesn’t produce symptoms until tumors reach stage 3 or 4, which are the last stages of development. One of the biggest problems with pleural mesothelioma is that it often is not diagnosed until tumors have spread too far for treatment to be effective.
Sometimes the cancer is misdiagnosed at the wrong stage. Seeking a second opinion has the potential to improve the accuracy of the diagnosis, which can change treatment options that might lead to a longer life.
Kathleen still wears the button her son gave her, which reads, “I’m a patient with no patience.”
And it describes her attitude well. She didn’t like the first diagnosis she was given because it offered little hope and few choices.
She insisted on second and third opinions and opted instead for an aggressive pleurectomy and decortication surgery with Dr. Tracey Weigel at the Carbone Cancer Center. She recovered quicker than expected and resumed traveling the country.
Kathleen believes her aggressive treatment and her faith have carried her.
“I don’t know how anyone can get through cancer if they don’t have God in their life,” she said. “I think that’s big.”
Jodi P. was diagnosed with pleural mesothelioma at the young age of 26.
After receiving an initial misdiagnosis of pneumonia twice and two different mesothelioma diagnoses with different stages and treatment options, Dr. Claude Deschamps performed an extrapleural pneumonectomy to treat the mesothelioma, followed by chemotherapy and radiation.
Jodi celebrated her 30th birthday by going skydiving, fulfilling a lifelong dream.
A number of pleural survivors attribute their success to integrative medicine, also known as complementary and alternative medicine.
Many long-term survivors have opted to combine complementary therapies with traditional anticancer treatments.
Herbal medicine, acupuncture, yoga and relaxation therapies are among the many integrative therapies used by pleural mesothelioma survivors.
Judy G. was diagnosed with pleural mesothelioma in 1990 and lived until 2010. She strongly believed in the power of alternative medicine including meditation, massage therapy and nutritional remedies, in addition to surgery. Her story is told in the book “Surviving Mesothelioma: Making Your Own Miracle.”
Bob O. was diagnosed with pleural mesothelioma in 2005 and was given 18 months to live, which convinced him to do things his way. He elected to undergo a pleurectomy and decortication, but he opted for no chemotherapy or radiation. Instead, he altered his diet to add in loads of antioxidants to boost his immune system and stayed active. Many years later, he was able to go fishing almost every day.
The vast majority of people diagnosed with pleural mesothelioma worked with asbestos products throughout their lifetime. Many occupations exposed workers to asbestos products including jobs in construction, manufacturing and industrial settings.
A wide variety of jobs outside of these sectors also placed workers at risk. For example, bakers, hair stylists and teachers have a higher incidence of pleural mesothelioma because they worked with or around asbestos products.
Additionally, those who served in the U.S. armed forces worked with asbestos products, especially Navy and Marine Corps veterans.
If you worked with asbestos products, you should speak to your family doctor about your exposure. The development of new blood tests and better imaging tests can lead to an earlier diagnosis, which can mean more effective treatment options and longer survival.
Marlyn L. worked as a hair stylist for 25 years before she was diagnosed with pleural mesothelioma at the age of 47. After the doctors at the Naval Medical Center in Maryland took a biopsy and determined her diagnosis, she was referred to Dr. Valerie Rusch in New York.
Her tumor was large, so she started chemotherapy right away. Dr. Rusch later removed the tumor, five upper ribs and a portion of her right lung. Although she can no longer style hair, she never gave up her fight and still travels with her husband.
From: New Jersey
David C. is a Marine Corps veteran from New Jersey. He was diagnosed with pleural mesothelioma in 2005 and had an extrapleural pneumonectomy performed by Dr. David Sugarbaker at Brigham & Women’s Hospital. Six years later, he was dancing the night away at his grandson’s wedding reception.
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