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.
In the July 5, 2014 edition of Lung Cancer, Dr. Lee Krug of Memorial Sloan Kettering Cancer Center, who was the lead investigator of the CBP501 trial, reported that the trial was found not to improve overall survival in patients with malignant mesothelioma.
CBP 501 is a drug in that interrupts DNA repair of transformed cells. It was thought to add synergy to the combination of our first line therapy.
Cisplatin/pemetrexed coupled with a placebo or CBP501, at first glance, appeared to hold promise, having met their endpoint of progression-free survival at 4 months. However, in further evaluation, it was found not to increase overall survival or response rate.
Though we are disappointed to learn of these results, the science from this study nonetheless adds to our knowledge of this disease. We are grateful to all volunteers who participated, because only through a clinical trial are we able to learn what works and what doesn’t.
It was recently reported that the Mayo Clinic has successfully used the measles vaccine to eliminate cancer in a patient enrolled in an experimental trial. The patient, 50-year-old Stacy Erholtz, was suffering from blood cancer, which had spread widely throughout her body, when she resorted to a clinical trial at the Mayo Clinic last June.
Erholtz’s cancer went into remission and became undetectable following a single, massive dose of the measles vaccine. Erholtz was injected with 100 billion infectious units of the measles virus. A typical dose contains only 10,000 infectious units of the virus. The virus works by attaching itself to tumors in the body and using them as hosts for replication, which eventually kills the cancer cells.
A similar experiment using the measles virus to treat mesothelioma is currently being conducted in a clinical trial by Dr. Tobias Peikert of the Mayo Clinic. The clinical trial uses the measles virus to attack mesothelioma cells in patients with pleural mesothelioma regardless of whether they have undergone prior therapy.
Dr. Peikert is using the same measles virus (MV-NIS) in his clinical trial that was used for Stacy Erholtz. Rather than an intravenous injection, however, patients in Dr. Peikert’s trial have the virus delivered into the pleural cavity. The dose used in the trial is also lower than that used for Erholtz.
“This is extremely exciting,” Dr. Peikert said in response to the successful use of the measles virus for Erholtz. “It is very encouraging to see a convincing clinical response to the virus, although one has to caution that thus far this represents a single case.” Dr. Peikert believes the dose of the virus will likely matter as future measles studies for mesothelioma are conducted.
The Meso Foundation held a previous Meet the Mesothelioma Experts podcast session with Dr. Tobias Peikert to discuss his measles virus clinical trial. You can listen to the session below.
Additionally, a video of Dr. Peikert’s panel from the International Symposium on Malignant Mesothelioma can be viewed here.
Listen to more Meet the Mesothelioma Experts podcasts at curemeso.org/experts and check back for information about upcoming sessions.
Over the last few months, there has been a great deal of discussion about the Furthering Asbestos Claim Transparency Act (H.R. 982) also known as the FACT Act. The FACT Act just passed the House of Representatives by a vote of 221-199. The bill requires the existing asbestos trusts to file quarterly reports on the claims they have received.
The Mesothelioma Applied Research Foundation, after difficult consideration, has chosen not to take an official stand on the FACT Act. Mary Hesdorffer, the executive director of the Foundation, and Melinda Kotzian, its chief executive officer, consulted the Foundation’s board of directors and its major supporters, and uniformly decided that the FACT Act falls outside of the mission of the Meso Foundation.
“We are a research foundation focused on developing effective treatments and a cure for mesothelioma,” stated Ms. Kotzian, “Taking a stand on legal issues falls outside our scope of work and outside of our expertise.” As it reads in our policy on litigation:
Our primary function is to support the health needs of the patient. Involvement in tort and litigation issues does not fall into this category, nor is it our area of expertise. For this reason, it is our position that we will abstain from commenting on or supporting legislation that does not directly address the health needs of mesothelioma patients and their loved ones.
Today, February 28th is Rare Disease Day. Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year. In the United States, any disease affecting fewer than 200,000 people is considered rare. Mesothelioma is estimated to be diagnosed in 3,500 American each year, making it very rare.
This year is a very important year for rare diseases, as 2013 marks the 30 year anniversary of the Orphan Drug Act (ODA). The ODA changed the way that pharmaceutical companies viewed rare diseases, like mesothelioma, and the ways they sought to treat them. The ODA created incentives for the development of treatments for Orphan diseases. The ODA grants a special status called an “orphan designation” to a product to treat a rare disease or condition upon request.
The ODA was approved by the U.S. Congress in December 1982 and signed into law by President Ronald Reagan on January 4, 1983. The ODA is considered very successful and has resulted in more than 2,700 potential therapies in the research pipeline and more than 400 approved products.[i] Cancer was the main group of diseases that was targeted for orphan approvals.[ii] Twelve of the drugs that have received an orphan designation for the treatment of mesothelioma, including the one FDA approved treatment that is currently available to mesothelioma patients, Alimta.
The Meso Foundation is a member of the National Organization for Rare Diseases, and is proud to represent the mesothelioma community in this regard. We have joined other member organizations in meetings at the NIH and the FDA, and routinely work together in our advocacy efforts.
[ii]Orphanet J Rare Dis. 2008 Dec 16;3:33. doi: 10.1186/1750-1172-3-33. Incentives for orphan drug research and development in the United States. Seoane-Vazquez E, Rodriguez-Monguio R, Szeinbach SL, Visaria J.
The Meso Foundation realizes that there are numerous groups that you can affiliate with, provide your stories and attempt to raise awareness but it seems as if many are just going about this in the wrong way. To begin with, have you really looked into the Facebook pages or websites that you are supporting? Are they transparent in who they truly represent? Most often this is not the case.
The Foundation is your only 501(c)3 not-for-profit that is dedicated solely to finding a cure for mesothelioma. Our executive director and nurse practitioner, Mary Hesdorffer, is uniquely qualified to assist you in managing your disease and understanding all of the options that are available, be it a clinical trial or a more standard form of treatment. Mary spent years actively treating mesothelioma patients and writing clinical trials and papers that have been published in peer-reviewed journals. She understands the disease and brings a unique perspective to the Foundation both as a medical professional and patient advocate.
Patient advocate is a term that is widely used in mesothelioma, but who are these advocates? Who do they work for and what motivates them to advise you? Many nurses have been hired by legal entities but do you know that they have never worked in a mesothelioma clinic, and are trained in this disease by the law firm that surreptitiously pays their salary?
Hmmm… seems that we have some serious conflicts in this disease and it is about time that everyone takes a step back and thinks about what is truly best for the patient and the disease in general.
As the Meso Foundation is not a business model, we are not beholden to any institution or legal entity. We are independent and trustworthy which sets us apart from many of the “faces” you encounter on the web. Facebook is new to many of you and we ask that you think before you click the “Like” button, stop before you fill out an on-line form. Think. Where is your information going? Whose cause are you supporting?
You have more power than you realize and the capacity to effect change. We invite you to become more closely involved with the Meso Foundation, support our mission and assist us in getting unbiased information directly into the hands of those who are affected by this disease. We have a peer-reviewed research program where we provide grants which we hope one day will not only lead to more effective treatments but to a cure. We have testified before Congress multiple times. Through our direct advocacy efforts we have secured much needed federal funding for mesothelioma research. You can view this expert testimony here.
We invite you to visit our website www.curemeso.org, call us at 877-363-6376. If you’re on Facebook, please “Like” our Facebook page so you can receive the latest news about research, support, and advocacy. We are the real deal- we are your nonprofit and we need your support!