Mesothelioma Foundation Expert Can Answer Your Questions!
Nurse Practitioner, Mary Hesdorffer, is a mesothelioma expert and has worked with mesothelioma patients and their families for the past twelve years. Mary is available to answer your questions about mesothelioma, its symptoms and treatments as well as options available to you. This help is a free service provided by the Mesothelioma Applied Research Foundation. We are not a law firm. Read more about the Mesothelioma Applied Research Foundation.
TO GET HELP CALL: (877) End-Meso or (877) 363-6376 or fill out the form to the right to be contacted by her.
The Meso Foundation would like to invite you to join us for the next installment of our Meet the Experts series: “Focused Discussion on a New Clinical Trial: GL-ONC1” on Monday, February 17 at 8 PM Eastern Time, featuring Dr. Valerie Rusch, Memorial Sloan-Kettering Cancer Center.
The teleconference will follow our usual format with Mary Hesdorffer, Nurse Practitioner, as the moderator. We encourage all listeners to submit questions through our Facebook page and email throughout the call.
The teleconference is free, but does require that you RSVP in order to receive the call-in information. You can RSVP here.
Dr. Valerie Rusch of the Memorial Sloan-Kettering Cancer Center is a thoracic surgeon with over 25 years of experience. Her focus is treatment of patients with cancers of the lung, airways (trachea, bronchi), esophagus, mediastinum, chest wall, and pleura (malignant pleural mesothelioma). Read more about Dr. Rusch here.
You can listen to previous Meet the Experts sessions, including our most recent session, “New Frontiers in Surgery” with Dr. Joseph Friedberg, on our Meet the Experts page.
Recently, we had the honor to interview Melissa Culligan, RN, BSN, MS, a thoracic surgery nurse with specialized experience designing clinical trials. To listen press PLAY in the above podcast box (it may take a minute for the podcast to load).
In a cancer like mesothelioma, for which there is only one FDA-approved treatment, clinical trials play an integral role in many patients’ treatment regimens. For this reason, we wanted to provide patients with a solid overview of clinical trials, their design, and implementation.
Melissa Culligan with Dr. Friedberg, Karen Mudrick, and Mary Hesdorffer at Meso Foundation’s 2013 Symposium.
Melissa Culligan, RN, BSN, MS has worked as a thoracic surgery nurse for over 25 years and has worked in the field of thoracic oncology research for the past 15 years. She currently works in the Division of Thoracic Surgery at Penn-Presbyterian Medical Center and is the Director of Clinical Services for the Penn Mesothelioma and Pleural Program. She has a special interest in the areas of mesothelioma and advanced stage lung cancer and has recently graduated from Drexel University’s School of Medicine’s Master’s Program in Clinical Research Organization and Management.
Are you interested in learning more about clinical trials for mesothelioma? Do you have questions about mesothelioma clinical trials? Talk to our mesothelioma specialists through our Ask the Expert feature now.
Personalized medicine is the ability to select a biologic target and direct therapy against this target. It is associated with improved outcomes in a number of tumor types. The most startling was the development of Gleevec which targets CKit in gastrointestinal stromal tumors. The field has since grown by leaps and bounds. We are making progress in mesothelioma, too.
An example of what I’m talking about is displayed in the presentation made by one of our grant recipients, Liang-Chuan (Steve) Wang, Ph.D., at our International Symposium on Malignant Mesothelioma.
In his presentation of his Foundation-funded grant, Dr. Wang and his colleagues at UPenn identified a gene that may be responsible for chemotherapy resistance in mesothelioma patients to Pemetrexed (Alimta) and cisplatin. As per Dr. Wang, this may identify a group of patients who may need higher doses or longer duration of therapy or perhaps should be encouraged to try new drugs. This is step one and Dr. Wang has assured us that he will continue to work on the concept and in the future hopes that it will lead to a clinical trial.
Another example is the work currently underway to exploit mesothelin as a target and way into the malignant cell. Many of you have met patients at our symposium who have benefited from some of these trials and I remain excited and committed to stewarding patients through the clinical trials system to ensure that they know of all opportunities to participate in cutting edge research. Please take a moment to visit the research section on our website to see how the Meso Foundation has funded grants that have laid the groundwork upon which much of what you read about in mesothelioma news has been built upon.
To further advance our ability to get to the point of personalized medicine the Foundation will continue to foster communication among clinician, basic scientists, pathologists and members of biotech and pharmaceutical companies to disseminate information, as well as fund the work that will take us to the next level. Early on, we partnered with Dr. Mike Becich to ensure that the Mesothelioma Virtual Tissue Bank became a reality and we are proud to say that our efforts have paid off. Mesothelioma researchers now have access to mesothelioma tissue to conduct their experiments and further their scientific endeavors.
As the time for the Symposium draws near we are all filled with a sense of excitement. We strive to build upon the momentum gained in prior years and hope that we meet the expectations of both new and seasoned Symposium attendees. This year we will have a new roundtable composed of patients and healthcare providers. In this session I hope that we can identify the strengths that allow those with mesothelioma to continue to lead full and rewarding lives. What does it take to get from the early days of diagnosis to becoming a whole and healthy person who also happens to carry the diagnosis of mesothelioma? Knowing that you have an incurable disease, do you hope for the best and prepare for the worst? Is that even possible? I hope to explore these questions with patients. I also wish to open a dialogue about what it takes to be on the other end of the exam table, as a provider, charged with delivering the news, and then providing hope with reality. It is a fine balance and the providers we have chosen to partake in this discussion are known for their compassion and honesty. I hope that by exploring the patient and provider experience we can come away with better communication skills and a better understanding of what it takes to fill either set of shoes.
These are desperate times and I often get asked the question “should I pay for a treatment that my insurance company is denying”? This often becomes an option after a patient has received standard therapy and possibly one or more clinical trials. Often a physician has a hunch that a particular drug might have activity in mesothelioma, is approved for another cancer and not covered by your insurance plan. A hunch unfortunately does not include a discussion of the percentage of responses that have been observed nor the toxicities observed in mesothelioma. Unfortunately you will incur all the risk including the financial costs without a clear delineation of the risks versus the benefit.
Now suppose you elect to purchase this treatment…there are a number of areas that you need to consider. If you are hospitalized for a non approved out of pocket drug there is a possibility that the insurance company will deny payment for your care. You will need to check your policy and perhaps speak to an agent before you take this risk. Insurance companies are becoming increasingly difficult to work with and they will become more so in this failing economy. If you are stable on this drug, the unanswered question would be: is your disease in a “slow growth” phase or is the drug working? In an area of uncertainty it would be very difficult for you to feel comfortable stopping the therapy and many of these new agents can cost upwards of 4,500 per month. Can you afford this and is this truly in your best interests?
Phase I clinical trials are conducted at many hospitals across the country. Insurance coverage varies but the investigator and hospital will precertify you before you can enroll in the program. You should be well informed about any costs that you will be liable for. Volunteering to participate in a clinical trial helps the entire mesothelioma community. This allows for data to be collected and peer review of the reported results. Without your volunteerism advances will not be made in treating mesothelioma. Alimta began as a Phase I drug tested in many cancers and responses were observed in mesothelioma. Many Phase I trials will prove to have little if any impact in mesothelioma but unless mesothelioma patients actually receive these drugs we will continue to make little headway in curing this disease. Please call me if you have any interest in exploring your clinical trials options. Help the community in this battle. Though the purpose of a Phase I study is to determine the safety and tolerability of a drug, the article below provides some rationale for a benefit to the patient who participates in Phase I studies. Let me know what you think about this issue?
~Mary Hesdorffer, NP
Click here to contact Mary Hesdorffer, Nurse Practitioner or call 877.363.6376