Drug Cautions

Just got off the phone with the wife of a patient whose doctor recommended a new drug to treat her husband’s mesothelioma. They were excited to try this new drug until she spoke to her cousin, a nurse, who looked up the drug and cautioned against using it. We spoke soon after this call and were able to sort out what the common reported events associated with this drug vs rare and fatal reactions. I compare this to the pages of adverse events associated with Aspirin, one always compares the risks vs the benefits with any medication either by prescription or over the counter. When discussing treatment and disease status it is important to do so with a professional trained in oncology or even better mesothelioma. They are more qualified to help you to understand the risks vs the benefits and most will have had experience with particular drugs or other drugs that fall into the same drug classifications. Be cautious as every one means well and wants to help but sometimes this can result in information overload and needless anxiety.

~Mary Hesdorffer, NP

Click here to contact Mary Hesdorffer, Nurse Practitioner or call 877.363.6376

Provider Roles

Lately I have noticed that there is a lot of confusion about who to contact and what is the expected role of the various health professionals that you come into contact with. Once the diagnosis has been confirmed you will either have a consultation with a surgeon, medical oncologist or both. There is a distinct advantage to seeing both as their knowledge about each others fields are somewhat limited. A surgeon is not an expert in chemotherapy and often is not aware of the new clinical trials that are available and often times if a surgery cannot be completed as planned will send you back to a local oncologist who also is usually not well informed. If you meet with a medical oncologist with a expertise in mesothelioma then they can discuss chemotherapy options as well as be prepared to take over your care following surgery, in preparation for surgery or when surgery is not an option. Once the surgery is completed and you have been discharged the surgeon has no role in your care. He should not be counted on to give advice regarding chemotherapy or interventional radiology procedures. You need to move on as you are now entering a new realm and your care should be directed by an oncologist who will manage your care for the duration of your oncology needs. Most of the surgeons and oncologist will have either a PA or NP who works closely with them. This is the person who is usually the most accessible and will direct your calls to the physician if there is something that requires more expertise than they have been trained for. The research nurse is responsible for the study that you might be on and there role is to make sure that the requirements of the study are fulfilled, you will need to get clarification of their role as every practice is different. The radiologist who performs your scans is usually not the person who gives you the results and the medical oncologist or surgeon will sometimes need to discuss your history with the radiologist so that they can make some judgement calls with the history factored in. All results are interpreted based on your prior scans, medical history and sometimes with the timing of the chemotherapy. We usually do not release the results to the patient until the physician has signed off and hopefully has had a chance to discuss them with the patient. There is nothing worse than being saddled with bad news from someone who is not able to tell you what you can do to turn the situation around.

~Mary Hesdorffer, NP

Click here to contact Mary Hesdorffer, Nurse Practitioner or call 877.363.6376

Decision to go the Alternative Route

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, NP

Click here to contact Mary Hesdorffer, Nurse Practitioner or call 877.363.6376

Chemoembolization in Mesothelioma

Lately we have had lots of questions regarding the use of chemoembolization in mesothelioma based on a case that has been making the rounds on the various websites.  In Germany a Dr Vogl is currently studying the application of this technique in mesothelioma and other cancers.  It is not a standard treatment in Germany and the number of mesothelioma patients are small.  I contacted Dr Vogl and he told me that he has observed some interesting results in mesothelioma.  What does that mean exactly? It is the correct answer one would expect from a researcher, he is studying this method he is compiling data and will continue to publish the results in peer reviewed journals.  I contacted members of our scientific advisory board as well as other prominent researcher in mesothelioma as well as the International Interventional Radiologist Association who also responded to my request for more information.

So far what I have found out was that in peritoneal mesothelioma it most likely will not be applicable as very rarely do you have a single focus of mesothelioma within the liver itself, it is usually found on the outer portion which would not have an arterial blood supply.  No one had any experience in using this technique with pleural mesothelioma nor was it under investigation at any of our centers.  The papers are published in peer reviewed journals and your oncologist can certainly view them and discuss with you whether he thinks this could be of potential benefit to you.  At this point we will have to wait for further publications that will define the size, location and amount of disease in patients with mesothelioma who have been treated in this manner.  There are reports of one patients having a 50% decrease in the size of her tumor but we do not have further information as to whether this is the sole focus of disease, nor do we know whether this will translate into increased survival.  I have posted 2 abstracts for those of you who wish to read more about this technique.  Dr Vogyl was kind enough to respond to my email and I hope that this will prove to be an effective new treatment to add to our current therapies in mesothelioma.

~Mary Hesdorffer, NP

Click here to contact Mary Hesdorffer, Nurse Practitioner or call 877.363.6376