If you have been diagnosed with mesothelioma, you’re likely seeking information and resources to learn more about the disease.
A free one-hour mesothelioma teleconference is a great place to start.
CancerCare recently hosted the “Advancements in the Treatment of Mesothelioma” workshop.
The session featured five mesothelioma experts, including Dr. Hedy Kindler, director of the mesothelioma program at the University of Chicago Comprehensive Cancer Center.
The Mesothelioma Applied Research Foundation co-sponsored the teleconference, which is available online for free.
All mesothelioma patients can benefit from the topics covered, including an overview of the disease, treatment options, importance of clinical trials, how to communicate with your health care team and other important issues.
Communication Is Key
According to Dr. Richard Gralla, professor of medicine at the Albert Einstein College of Medicine and Jacobi Medical Center, it is essential to communicate often with your health care team after a mesothelioma diagnosis. This is especially true when it comes to side effects.
“I can’t overemphasize the importance of communicating clearly with your doctor and nurses about what’s bothering you,” Gralla said.
Every side effect, including pain, shortness of breath, lack of appetite and fatigue, needs attention and can be managed to improve quality of life.
While some side effects are expected, there is no reason to suffer in silence. If you develop new or worsening side effects, you need to tell your health care team right away.
Your doctors will provide information before treatment begins about what to expect. However, if you experience something beyond what you’ve been told, let your team know.
Make Quality of Life a Priority
A cancer diagnosis is overwhelming, and you may be focused on other things than day-to-day quality of life.
During the CancerCare discussion, several participants stressed it is a mistake to ignore your quality of life.
Dr. Richard Daly, assistant attending physician at Memorial Sloan Kettering Cancer Center, stressed communication between physician and patient because it “helps to provide early detection and intervention of symptoms to prevent their worsening,” which is critical for maintaining quality of life.
Even though there is no cure for mesothelioma, life can be good after a diagnosis. Find what you are able to do that brings you joy.
Make it a priority to engage in that activity regularly.
Manage Your Fatigue
Mesothelioma symptoms include muscle weakness, fatigue and shortness of breath. Chemotherapy also can contribute to fatigue.
According to Donna Wilson, pulmonary clinical nurse specialist and fitness coordinator at Memorial Sloan Kettering Cancer Center in New York, the only fix for fatigue is staying active.
She urges patients to remember how and why you breathe — to improve motivation for moving when you feel you’re too tired to do so.
Wilson has worked with lung cancer and mesothelioma patients for decades. She notes gradually building strength in the breathing muscles and engaging in light upper body stretches can significantly improve fatigue.
Despite being extremely tired, making the effort to move more will improve your quality of life. Ask for a referral to an exercise specialist or physical therapist if you need help developing a strength and stretching program.
Multimodal Therapy Is Best
Using multimodal therapy, which combines more than one therapy, tends to give the best results when treating mesothelioma.
However, treatment must be tailored to each individual, because all patients are unique.
Some oncologists advise against using certain chemotherapy drugs in patients ages 70 and older, when the body does not process drugs as quickly or as effectively as it once did.
Other common conditions — such as heart disease and diabetes — may increase side effects from treatments or make them harder to tolerate. People regularly take more medications with age, so medication interactions are a concern.
All of these things and more are taken into account when your oncologist develops your mesothelioma treatment plan.
See a Mesothelioma Specialist
Consult with a mesothelioma specialist to get the best treatments available for this rare and complex cancer.
Most physicians and many oncologists are not familiar with mesothelioma, and it is often misdiagnosed as other chronic conditions.
Doctors may interpret symptoms of mesothelioma as emphysema, bronchitis, chronic obstructive pulmonary disease, lung cancer or another type of cancer.
Even if the diagnosis is correct, it can be challenging for an oncologist unfamiliar with mesothelioma to determine the extent and stage of disease.
A specialist is more likely to be aware of new mesothelioma-specific clinical trials and may have a clinical trial onsite that may be right for you.
“Why do we do clinical trials?” Kindler asked. “Because if we keep using the same treatments, we’ll never find a better one.”
Kindler said that in the last few years, a “tremendous amount research” on the biology of mesothelioma has led to many clinical trials on immunotherapy and targeted therapies.
Mesothelioma specialists also may have a larger cancer care team to support you through this challenging diagnosis. This can include respiratory therapists, advanced nurse practitioners, physical therapists, exercise specialists and dietitians.