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.