Expanded Financial Assistance for Travel Expenses of Mesothelioma Patients

TravelLast week, we announced the expansion of our Travel Grant program for mesothelioma patients. The program, which was created initially to help mesothelioma patients who are in need travel to see a specialist for the initial consultation, will now also accept applications to cover traveling expenses of patients enrolled in clinical trials away from home, or those seeking new consultation following relapse. Each grant of up to $1,000 can cover lodging, transportation, and meals.

Mesothelioma treatment requires the expertise of a specialist who has extensive mesothelioma experience. Such experts are available at a limited number of centers, access to which often requires the patient to travel. Mesothelioma patients can greatly benefit from consulting with an expert. In many cases, following the initial consultation, the mesothelioma expert will be able to work with the patient’s local physician to guide them through a more specialized treatment.

“The Meso Foundation believes that every patient should have the chance to be seen by an appropriate mesothelioma expert, regardless of their ability to pay,” said Mary Hesdorffer, the executive director of the Meso Foundation and an expert nurse practitioner.

To qualify for the grant, a patient must show significant financial need and fit in one of the following categories:

  • Patients who must travel to receive expert care or an expert consult on their mesothelioma, and cannot afford to do so without assistance. Repeat visits are not covered unless patients are enrolled in a clinical trial.
  • Following treatment by a specialist, the patient has relapsed and needs to explore a new option of treatment or clinical trial.
  • The patient has enrolled in a clinical trial and does not have the financial means to travel to appointments. We recognize that clinical trial participation requires multiple visits and will consider each visit as a new application.

More information about the Travel Grant program can be obtained by contacting the Meso Foundation at (877)636-6376 ext. 3821 or by emailing Dana Purcell at dpurcell@curemeso.org.

Visit curemeso.org for more information about mesothelioma.

Update on Mesothelioma: A CancerCare Teleconference

CancerCare Update on MesotheliomaOn Monday, June 30 from 4:30-5:30PM Eastern Time, CancerCare is hosting a free mesothelioma teleconference workshop. The teleconference, titled Update on Mesothelioma, will feature a panel of experts to discuss numerous topics related to the disease. Registrants will be able to listen in on the phone or through a live stream online.

The Update on Mesothelioma teleconference will cover topics including mesothelioma treatment choices; the role of clinical trials; managing side effects, discomfort and pain; communicating with your health care team; quality of life and life style concerns; and physical activity and nutrition issues and tips. Questions for the panel of experts will also be accepted.

The panel of experts consists of four individuals: Richard J. Gralla, MD, FACP, Professor of Medicine, Albert Einstein College of Medicine; Lee M. Krug, MD, Director of the Mesothelioma Program, Associate Attending Physician, Division of Thoracic Oncology, Department of Medicine, Memorial Sloan-Kettering Cancer Center; Mary Hesdorffer, MS, APRN-BC, Nurse Practitioner, Executive Director, Mesothelioma Applied Research Foundation; and Winfield Boerckel, MSW, MBA, Director of Social Service – Long Island, Lung Cancer Program Coordinator, CancerCare.

Mary Hesdorffer, MS, APRN-BC, is an expert nurse practitioner with over 16 years of experience in mesothelioma treatment and dozens of published articles in a variety of scientific journals. She is the executive director of the Meso Foundation and the first line of help for patients and caregivers faced with a mesothelioma diagnosis.

Lee M. Krug, MD, is an Associate Attending Physician in the Division of Thoracic Oncology, Department of Medicine at Memorial Sloan-Kettering Cancer Center in New York, New York, where he completed a fellowship and chief fellowship in medical oncology. Dr. Krug is the Director of the Mesothelioma Program at Memorial Sloan-Kettering Cancer Center. He is also the chair of the board of directors of the Meso Foundation.

To register for the free Update on Mesothelioma teleconference workshop, visit CancerCare.org.

Looking for Inspiration

Running on treadmillby Mary Hesdorffer, NP, Executive Director of the Meso Foundation

I found myself on the treadmill looking for inspiration to go the extra mile. Two miles into it and I am running out of steam. I am not an ESPN fan, which means that I have to take inspiration from another source. Into my mind pops up the image of Joe Friedberg, MD.

Of course, I wonder, who else would channel Joe Friedberg while on a treadmill? Am I losing it?

As you know, Joe is a champion in the field of mesothelioma, toughing it out in the operating room with a grueling procedure, which has recently reported some promising results. I recalled a conversation with Joe when he suggested that to complete a pleurectomy decortication, one has to be totally committed to going the extra mile (as these operations last up to 8 hours) and one has to be willing to persevere through fatigue, and physical and mental challenges.

There has been much debate about surgery – extrapleural pneumonectomy (EPP) vs. pleurectomy decortication (PD) vs. those who believe that surgery should not be offered to patients with mesothelioma, and advocate for palliative care only.

I think about Joe in these debates, and his honesty and lack of bravado when he simply states that “we don’t know what is the best surgical option to offer patients and that all surgery in this disease is experimental.” Though the uncertainty is unsettling, the honesty is refreshing.

Recently, Dr. Friedberg and his team at UPENN have launched a new clinical trial that will randomize patients to either a pleurectomy decortication or a pleurectomy decortication coupled with photodynamic therapy. Joe has spent many years championing photodynamic therapy as an adjuvant therapy to his pleurectomy decortication surgery, making this clinical trial a one-of-a-kind move to get closer to the truth.

Doing 3 miles on a treadmill no longer seems daunting.

Here is why Joe’s courage is so important and why I hope others follow in his footsteps. It is well-known among researchers that most surgical studies have an inherent bias to them. In other words, a surgeon’s excellent numbers may be produced not only by their skill, but also by choosing to operate on patients who have the best chance to tolerate the surgery and do well after. The fact is, surgery often results in a surgical remission, but unfortunately, in mesothelioma, the cancer generally returns after a certain period of time. To extend the remission, surgeons use specific adjuvant therapies to lengthen the time to progression and, of course, create the best case scenario to prevent the return of disease. This is the crux of the discussion about what will kill the cells that are waiting like seeds in a garden ready to sprout into recurrent disease.

I am appalled to hear so many surgeons in this disease state quite frankly that their approach works and there is no need to do a randomized trial which will eliminate bias from their results. Worse yet are those surgeons who boast that their patients do better in their hands, with their procedure yet when I scour the literature there are no published reports in scientific journals. In academic medicine there is a phrase “If it isn’t published, it never happened.” In other words it is expected that you submit your results to a peer reviewed journal to demonstrate that your outcomes are accepted by your peers and your data has been analyzed by, and scrutinized by unbiased reviewers who are experts in the field of surgery. There is no room for arrogance when we are losing patients in these procedures. We need to know what is the true statistical difference. The gold standard is to compare a new hypothesis and test it against the standard to see if this really is a significant improvement.

Dr. Friedberg has reported some impressive results with his combination of pleurectomy decortication combined with photodynamic therapy, and now he’s willing to take a step further to understand if there is a difference between patients undergoing pleurectomy decortication alone from those getting both the surgery and the adjuvant therapy.

This is what the mesothelioma community needs – “proof of the pudding.” We truly do not know what is better so we need to strip back the notion of “my treatment works, and I don’t need to prove it.” Randomized clinical trials can help us find a gold standard of treatment for mesothelioma.

I guess, what that means is that I, too, should be going the extra mile on this treadmill. Mile 4, here I come.

Measles Virus Successfully Used to Treat Cancer

New study reports measles vaccine successfully eliminated cancer in one patient.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.

Listen to the “Meet the Mesothelioma Experts” Session with Dr. Evan Alley

Meet the Mesothelioma Experts: Dr. Evan Alley.The most recent installment of the Meso Foundation’s “Meet the Mesothelioma Experts” series is now available for listening on our website. The session was held on May 14 with Dr. Evan Alley of the University of Pennsylvania. During the call, Dr. Alley was interviewed by Mary Hesdorffer, the Meso Foundation’s executive director and experienced nurse practitioner. He discussed his new clinical trial for pleural mesothelioma patients, which is looking into an agent that would inhibit the PD-L1 protein.

PD-L1 is a protein believed to play a role in suppressing the immune system. Generally, it is associated with pregnancy and autoimmune diseases. In cancer, a high tumor expression of PD-L1 is linked with more aggressive disease and a poorer prognosis. Research into PD-L1 inhibitors has already shown much promise in melanoma, renal cell carcinoma and lung cancer, evidencing both tumor shrinkage and durable response, and prompting a number of mesothelioma centers to open trials testing similar agents.

Dr. Alley is part of the Penn Mesothelioma and Pleural Program team and the interim chief of the Division of Hematology and Medical Oncology at Penn Presbyterian Medical Center.

You can listen to the session with Dr. Alley, as well as past “Meet the Mesothelioma Experts” session here.