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.

Calling Him Dad: What My Father Meant to Me

Jennifer Gelsick and fatherby Jennifer Gelsick

When I was asked to write about my Dad, I struggled with it. I wasn’t sure where I should start. My father, Donald Edward Smitley, was born on April 25, 1956. He was diagnosed with pleural mesothelioma on January 30, 2012 and fought as he lived, with faith, grace, and love, until he took his last breath on October 15, 2013 at the age of 57. Mesothelioma ultimately took his life, but it was a beautiful life, and he was so much more than just a disease.

Over these past few months, I’ve been reflecting on what it was like growing up with my Dad. I had told many people that I would have rather had 30 short years with him as my father than 100 with someone else. I mean that from the bottom of my heart. My Dad was the perfect father to me.

Growing up, there aren’t a lot of memories that don’t involve my Dad’s laughter. He had an unfailing knack to make the best of any situation and bring out the best in those around him. People were always drawn to him; he had a magnetic personality that just made people want to be close to him. I was blessed to have him all the time.

Dad was a handyman. He could literally fix anything. In my home, there was never a call to a plumber, contractor, or electrician. Mom and I just told Dad what was broken, and the next thing we knew, it was fixed.

Dad was a musician. He always said he just “played at” the guitar, but he had the most beautiful voice. I remember growing up and sitting with him while he played and sang. He would always sing “You are My Sunshine” to me, and “Rocky Top” became what he called his theme song. Later on, he worked up the courage to begin singing in Church and became a staple at community events; people loved to hear him sing. His love of God and neighbor always shone through. He also joined a bluegrass band called The Dunbar Boys (named after the town where he lived his whole life) and loved being on that stage performing for whomever happened to be around. It didn’t matter if there were 10 people or 300 people there; he always had the best time singing with his friends.

Gelsick as child with fatherDad was a special kind of dad. He was fun, goofy, and never afraid to look silly to make me smile. We were watching some home movies over Christmas where Dad and I were walking our dogs. Then, of course, I decided to walk Dad. I put the chain around his waist and dragged him all over the place. Some neighbors who were outside asked him what he was doing and he just laughed and said, “I’m getting walked!” He was constantly doing things like this. When he saw that I was happy, he was happy too.

Even though I danced my whole life, Dad wanted me to try out all different sports. Not necessarily by being on an official team, but with him. We spent hours outside playing baseball, kickball, and throwing a football around. I never exceled at any of these activities, but looking back, he was trying to help me become more well-rounded (or maybe to just be able to play games with the other kids). Plus, he liked chuckling at me when I would kick as hard as I could and miss the ball completely.

We were always going on adventures together. Whether it was taking a ride in the mountains or trying to bake cookies at home, he made even the most seemingly ordinary activity special. My Mom worked late one night a week; I was never in bed on time those nights. It became a game to see if I could get ready and be “asleep” under the covers by the time she got home. We never made it.

You would think that these things would have changed a bit as I got older, but they didn’t. Every Saturday morning was our time. Mom would be at work, and we’d be off. We would go out to breakfast, shopping, up to the mountains, for ice cream, do a project at home, and visit family… all in the same day. Those days are such precious memories for me.

Dad was more than just fun. We always had the kind of relationship where we could talk about anything. Dad gave the greatest advice of all time. No topic was off limits for us: school, work, faith – we discussed it all. He always knew exactly what to say. If he wasn’t sure, he would tell me to let him think about it and he would let me know what he came up with later. And he always did.

The day my Dad passed away, a piece of me went with him, but a piece of him stayed here with me. Even when he felt his worst, he wanted to work to help others battling mesothelioma. He believed that if he could help even one person, then what he was going through was worth it. His faith in God always carried him through.

I am honored to continue to work with the Mesothelioma Applied Research Foundation as a part of their Rising Leaders Council to help to eradicate this awful disease that causes so many families to be torn apart. I am also a part of MesoConnect, which allows me to remain in close contact with those in the meso community and do my best to help them heal, vent, and grieve. This organization does so much for so many, and my family and I will be forever grateful to them.

I could write a book, or 50, about Dad and his kindness, generosity, and genuine love for life, God, and his family. He was perhaps the single most powerful influence on my life. He didn’t just tell me how to live a good life, he showed me. This is a true testament of the life of the most amazing person I’ve ever known, and I was blessed to be able to call him “Dad.”

Meso Foundation Updates its Peer-Review for Research Grant Funding

ResearchAs the only non-government funder of peer-reviewed mesothelioma research, the Meso Foundation has announced an update to its peer-review process for evaluating research grant proposals, so as to once again match the process by the National Institutes of Health (NIH).

The Foundation has always modeled its peer-review process after the NIH, so when the NIH made changes in 2013, the Foundation followed suit.

The change involves streamlining the reviews by eliminating the two-step process and replacing it with one step only. Instead of sending a project through two separate rounds of review, which would usually result in a total of 3-4 number of reviewers looking at each project, now all 3-4 reviewers evaluate the project in the one and only round. This ensures a quicker review turnaround and a more efficient process.

To learn more about the Meso Foundation’s research grant program, visit curemeso.org.

The Meso Foundation Applauds the Newly Formed Deadliest Cancers Caucus

Capitol HillOn May 8, a Dear Colleague letter was sent out by the founding co-chairs of the newly established Congressional Caucus on the Deadliest Cancers to invite other Representatives to join the Caucus. The caucus, founded by Representative Leonard Lance (R-NJ), Anna Eshoo (D-CA), Dave Reichert (R-WA), and Henry Waxman (D-CA), described its purpose by stating that “because almost half of all cancer deaths in the U.S. are attributable to one of the deadliest cancers, it’s imperative that we monitor implementation and what, if any, additional steps Congress should take to address these most lethal cancers.”

The Meso Foundation applauds the formation of the Caucus. “We are so pleased to see the formation of the Deadliest Cancers Caucus in the House,” said Mary Hesdorffer, expert nurse practitioner and the executive director of the Meso Foundation. “Congress has recognized the need to do more for the most lethal cancers, and we are anxious to see progress. We will continue to dialogue with the Caucus and support them in any way we can.”

We would like to encourage you to request that your respective Congressional Representatives sign on to the letter. The request can be made by filling out a form at curemeso.org.