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.

GUEST BLOG: Sarah Lackner Attends the Charlie Cole Golf Classic

Lynn Cole and Sarah Lacknerby Sarah Lackner

I spent the third weekend in May in Asheville, North Carolina on behalf of the Meso Foundation at the 3rd Annual Charlie Cole Golf Classic hosted by Lynn Cole, along with her children, Matt and Katie, in memory of her husband, Charlie, who lost his battle with mesothelioma on March 31, 2010 after only 17 months.

I hadn’t met the Cole family prior to this weekend, but what occurred during that quick less-than-48-hour trip is exactly what the Foundation is about. The warmth and strength that the family displayed, their incredibly supportive and loving friends, as well as other local meso community members all contributed to making the day an absolute success.

Not only was I able to thank the Cole family for their commitment, their friends and family for their support, I was able to spend time truly connecting with each of them. Katie and I were the same age when we lost our parent and zipping around on the golf cart gave us a few hours to share our experiences, both of the loss and of life after the loss. Later that evening, Matt and I were able to also have those conversations that only occur with someone who has been through what we as a community go through. C.S. Lewis says that friendship is born that moment when one man says to another “What? You too? I thought that no one but myself…”

Charlie Cole Gold ClassicThis event was, for me, everything that the Foundation works for: supporting research, education, support, and advocacy programs through raising funds and awareness as well as bringing together those affected by mesothelioma. It takes what is often an isolating disease and provides a place where if you want to talk about it, everyone understands, and if you don’t want to talk about it, everyone understands.

Thank you, so much, Lynn, Matt and Katie for allowing me to share the weekend with you. And thank you for believing in and working towards a cure.

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.

Volunteers Needed: Meso Foundation’s Water Stop at NYC Marathon

nycmThis year, the Mesothelioma Applied Research Foundation has an opportunity to staff the water stop at Mile 19 of the New York City Marathon. This is an official water stop of the marathon and is a tremendous opportunity to raise awareness of our cause at such a world-famous event. This event features over 50,000 runners, and over 2 million spectators.

The marathon will take place on Sunday, November 2, and the volunteers are expected to be there between the hours of 7:30 AM – 3:30 PM.

Due to planning and security concerns, all interested volunteers must register online by July 31, 2014. No walk-ups are allowed.

If you are unable to volunteer, but still wish to participate in this event, you can give to the NYC Marathon water stop fundraising page curemeso.org/fundraising/nycmarathon.

The registration process outlined below requires several steps, so if you need help registering, please contact dpurcell@curemeso.org.

STEPS TO REGISTERING AS A VOLUNTEER FOR THE NYC MARATHON

If you are ready to VOLUNTEER for the 2014 TCS New York City Marathon, FOLLOW THE STEPS BELLOW:

1)    Follow the link https://mynyrr.nyrr.org/login and register with New York Road Runners (NYRR). 

If you need additional registration help, visit: http://www.nyrr.org/my-nyrr-getting-started

2)    Once you register, you will receive a confirmation email. Please follow the link in the email to finish setting up your account. (Can’t find the confirmation email? Check your spam folder!  Have Gmail?  Look in your promotions folder!

3)    Now, log in to your account and from the main page select VOLUNTEER, and select the area you’d like to volunteer in.

4)    Scroll to the volunteering event of your choice and select the radio dial to the left. Scroll down the page and click NEXT.

5)    Complete the missing information and click ACCEPT AND VOLUNTEER

Once you complete all the steps, you’ll receive a confirmation email from NYRR.

During the week leading up to the race, you’ll receive specific information about your assignment, and about what will happen on race day.

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.