I am not permitted to discuss individual patients for ethical reasons but I can certainly comment about how one should make a medical decison.. We have discussed informed consent at every medical meeting and patient based meeting. The spirit of informed consent is that the patient is given full disclosure regarding the risks and benefits of a procedure. It is not the role of the medical professional to practice parternalistic medicine but to educate the patient so they are able to make a decison based on personal choice. Conventional treatment for mesothelioma has been studied and reported in peer reviewed literature. When patients meet with their surgeon to discuss surgical options the discussion usually includes the following. What are the most commonly reported adverse events associated with the procedure. What is the median survival, what is the time to progression. The discussion includes the types of histologies and how they differ in survival and time and pattern of relapse. We have data on sites of relapse following EPP and PD. We discuss these findings at the symposium each year and we also discuss what types of patients do poorly vs those who tend to have a more favorable outcome. For chemotherapy we have only one approved regimen. We have data on survival, improvement in PFTs (pulmonary function tests) reports on quality of life studies. We do not cure patients with mesothelioma but I hope in time and with more research being conducted we may in the future.
To my knowledge the ILT clinic has never reported their data in a peer reviewed journal nor have they reported conducting a clinical trial at their center. There is no informed consent process because to have informed consent one must be able to discuss risks vs benefits. I have heard talk of a 50% responce but there can be no discussion on responce rates without data. When a clinical trial is about to be opened we work with a statistition who guides us on the number of patiets needed to make an analysis possible to rule out the possibility of chance. We look at the intervention and decisions are made as to how many patients need to be treated to know whether a treatment is active…some trials will close after only 7 patietns if no results are observed in the initial group.
I support every patient’s right to choose their own path but I will not refer to any center that does not publish the results of their treatment in a peer reviewed journal. If a patient does go to the ILT or another alternative center I will continue to provide supportive care and assist in any way possible.
I truly believe that the only way to make advances is to support clinical trials. If one looks at this realistically going to the ILT has no alturistic value. Enrolling in a clincial trial benefits the entire mesothelioma community and moves the science forward….ILT…Phase I study….no guarantees with either but I support science as that is how we advance as a civilization. ILT should conduct some clinical trials and submit the evidence for peer review. We are all held up to these rigorous standards and the ILT should be held to the same standard as anyone else who is involved in patient care.
~Mary Hesdorffer, NPClick here to contact Mary Hesdorffer, Nurse Practitioner or call 877.363.6376