June is Cancer Immunotherapy Month. Mesothelioma is a rare cancer that has been impacted by achievements in the field of cancer research over the years, making a difference in the lives of patients.
The Mesothelioma Asbestos and Awareness Center (MAAC) is focused on bringing attention to the dangers of asbestos exposure and its connection to mesothelioma.
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Why was MAAC founded and what is the mission?
As an awareness and advocacy group, we work to help patients, caregivers, and advocates find the information they need to familiarize themselves with the disease. We hope to raise awareness and educate others about the continued presence of asbestos in our communities and ways to reduce exposure risks.
What is mesothelioma?
Mesothelioma is a cancer many people have heard of but are unfamiliar with. One misconception is that mesothelioma is a type of lung cancer, and while it’s true that it most often develops in the lining of the lungs, it can also form in the linings of the heart and abdominal cavity. Although it’s most often associated with senior citizens, mesothelioma has been diagnosed in younger individuals as well.
What causes it?
Exposure to asbestos fibers is the only known cause of mesothelioma. The cancer has a very long latency period, so those diagnosed now were likely exposed to the particles 20 to 50 years ago. Before the dangers of asbestos were truly understood, veterans and laborers may have been exposed to the carcinogenic mineral while on the job. Despite the known severity of asbestos exposure, the mineral is still legal in the United States today.
How is it treated?
There is currently no cure for mesothelioma, but there are some promising treatment options for patients. The most common treatment options include surgery, radiation, and chemotherapy. Immunotherapy is an emerging option currently available through clinical trials. This treatment uses the body’s own immune system to fight the disease, and is a major focus of the Cancer Moonshot Initiative led by former Vice President Joe Biden.
What promising new research is underway?
In addition to immunotherapy, there are also trials and testing focused on gene therapy and photodynamic therapy. The Food and Drug Administration (FDA) approved the first gene therapy drug in 1990, but it was only within the last 15 years that this treatment has been used with cancer specifically. Photodynamic therapy uses a photosynthesizing agent combined with a specific wavelength of light to produce a high-energy form of oxygen that reacts with and kills cancer cells. The treatment has shown success with mesothelioma, esophageal cancer, and non-small cell lung cancer.
Heather Von St. James was diagnosed with mesothelioma more than 10 years ago. She shares her story and her hopes for others with the same diagnosis:
When were you first diagnosed and what was your reaction?
I was diagnosed at 1:30 in the afternoon on November 21st, 2005. My initial reaction was, of course, shock, then fear… then, as the doctor talked and explained more about the disease and prognosis, a quiet determination set in. I would not become a statistic. I had my baby girl to fight for, so despite being afraid I was also determined to fight.
What were your symptoms?
I had a baby in August of 2005, and only gained five pounds throughout the whole pregnancy. Hindsight is 20/20 and we now know that was the first of many symptoms. I continued to lose weight at a rapid pace after I had Lily, 5-7 pounds a week. I had fatigue like I had never experienced along with shortness of breath and what felt like a truck parked on my chest. I also had a low-grade fever that occurred every evening around the same time.
How was your disease treated?
I had an invasive and risky surgical procedure called an extrapleural pneumonectomy that consisted of the removal of my entire left lung and the lining, called the pleura. They also removed the left half of my diaphragm and the lining of my heart, replacing both with surgical GORE-TEX. In order to be able to get to everything a rib was also removed. During surgery, a heated chemo wash was administered for 60 minutes then pumped back out. After three months of recovery, I got the go-ahead to start the first of four sessions of chemo and followed that up with 30 sessions of intensity-modulated radiation therapy.
What does it mean to you to be a survivor of a rare disease?
Being a 12-year survivor of mesothelioma is pretty rare in and of itself. Most patients die within 18 months, and making it to five years is considered long term. I consider myself incredibly fortunate to have lived this long after being told I would die within 15 months. It is why I have such a passion to bring awareness to this disease. I feel like I need to give back.
What do you do in support of finding a cure?
I volunteer with the Mesothelioma Applied Research Foundation (MARF) and every year on the anniversary of the surgery to remove my lung, we throw a huge party to commemorate the occasion. We started using the party as a fundraiser a few years ago, and to date have raised over $35,000.
What do you want others with mesothelioma to know?
Don’t take a death sentence as a prognosis. Right now, more than ever, there are new treatments and therapies that are helping people live longer and have quality lives. Immunotherapies are proving to be an effective weapon against mesothelioma in many cases when chemotherapy no longer is an option. Surgery remains the best chance at long term survival, but it is no longer the only means of treatment. Finding a specialist who knows about mesothelioma and how to treat it is vital.
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