The patient’s son was clearly distraught. His previously healthy, active father had been diagnosed with malignant pleural mesothelioma. He had done what most people did in 2016, he began his research with a Google search. He had found the resources he thought he needed. With his fathers blessing he was continuing to research for all options. They were attending a mesothelioma conference together. He raised his hand and asked a question. His voice had a hint of desperation in it. “Where do I go to research current Clinical Trials for patients with mesothelioma?” The expert giving the talk explained that the clinical trials were listed on www.clinicaltrials.gov, under malignant mesothelioma. Sensing the desperation in his voice, the speaker continued to offer a phone number to contact for more information.
There was something about the question and the answer that we couldn’t let go of. After that part of the conference it struck us how difficult it is to navigate the medical system when you are healthy, let alone when you are diagnosed with a rare aggressive cancer. Progress is made through clinical trials, but the language and the terms are more than confusing. The Mesothelioma Applied Research Foundation is an excellent resource for patients and families. Anything that will start the conversation to increase participation in these trials is worth the effort. In order to progress we need patients to enroll in clinical trials. How do we get the word out about the available clinical trials? Many patients and significant others, family and friends are overwhelmed trying to navigate the system, a foreign world, they have suddenly been thrust into.
The Mesothelioma Clinical Trial Digest was started to help increase knowledge of what clinical trials are available in hopes of increasing participation. Our goal is to make patients and families aware of what clinical trials they might be qualified to enroll in. Often times patients are asked at the beginning of their journey with mesothelioma, whether it be chemotherapy, surgery, radiation, what do they want and how much do they want to fight. Digging into clinical trials information to navigate to hope is not an easy task. The Mesothelioma Clinical Trial Digest has been started to make part of this journey easier. Not everyone is a candidate for every clinical trial. This is a testament to the progress that has been made by patients participating in clinical trials. A new treatment option, an addition to the current standard of care, all must be proven in a formalized clinical trial setting. Each patient and family deserves to be aware of the clinical trials available, having a chance to participate in these trials and hopefully improving their chances for a longer life with good quality.
The hope of the Mesothelioma Clinical Trial Digest is to publicize the options for unique and different treatments which are being explored in many research facilities.
– Ellie
Mesothelioma is a serious illness. There is no cure currently but, research has extended the time and maintained the quality of life for many people diagnosed with mesothelioma. Managing the disease and its effect on patients and families takes a team. The only way that malignant mesothelioma will be cured is through collaboration and research- we know these facts, they are well known. From diagnosis through your journey with mesothelioma a vital member of that team should be from palliative care.
In a study published in 2011 of pleural mesothelioma patients, 30% presented with unexplained weight loss. Losing weight for no reason can be a presenting symptom for different cancers. During a patient’s journey with cancer most all patients lose weight at some point. Some lose before and during treatment.
I recently read an article that was written about a man named Steve McQueen who had Mesothelioma. Steve McQueen was a famous movie actor in the 1960’s and 1970’s. This article was published in The New York Times almost 25 years since his passing. When reading the article, many things stood out to me. However, what stood out to me in particular was his path. When someone told him he had no more options in regard to his illness, he still moved forward.
Julie Russell is an experienced Registered Nurse who is also a mesothelioma cancer survivor. Julie’s clinical expertise in nursing is in the area of the Cardiac Intervention. She has also been an instructor of Advanced Cardiac Life Support (ACLS) and Basic Life Support (BLS) for many years. Her varied nursing background includes roles as a nursing supervisor, educator and staff nurse.
Many of us plan so much for our lives, however, sickness is usually not included in the equation. We plan our marriages, children, vacations, but illness is not one we plan for or foresee. As a professional in the medical industry, we meet many types of patients. For instance, some patients want to know everything about their illness and others desire to know nothing at all. Despite what type of person they are, the first step in fighting an illness is a plan. Most people who plan appear to mentally have an easier course. Goals are what make us get up every morning and work hard. Goals become measurable and let us see improvement. That being said, it is important to have measurable goals. This is something people can still stick to even when everything is not going according to plan. In simple terms, when someone is diagnosed with an illness, the ultimate goal is to achieve better health.
As summer approaches, we are reminded that the first Sunday in June is the official National Cancer Survivor Day. This year the 29th annual day is scheduled for Sunday June 5th. According to the website National Cancer Survivors Day, 
