Review: Report on Mesothelioma

mapby Mary Hesdorffer, Nurse Practitioner
Executive Director, Mesothelioma Applied Research Foundation

Researchers from Creighton University School of Medicine accessed the National Cancer Database (NCD), and issued a report on their findings. They analyzed the years between 2000 and 2010. In the United States, 26,605 patients were diagnosed during this period of time. The NCD accumulates this data on approximately 70% of all cancers diagnosed in the states. If one were to add in the 30% not recorded it would take us close to the number of 3,458 cases per year that we use as a figure when we present on mesothelioma.  This supports that the numbers of diagnosed mesothelioma patients have remained fairly steady over these past years.

Not surprising were the reports that mesothelioma patients were 89% Caucasian, 78% male and 60% over the age of 70. We talk about the changing face of mesothelioma, but perhaps that perception is created because younger patients access the web, engage in social media and are able to draw more attention to their plight. Or perhaps one could argue that when 30% remain unaccounted for in this database the figures could be different in terms of age, race and gender.

Recently, I took the opportunity to speak with Dr. Karen Antman, Dean of Boston University School of Medicine, to discuss the earliest days of mesothelioma research. Dr. Antman, prior to writing one of the first clinical trials in mesothelioma, canvased the database of the Harvard system and told me that even then she was surprised by the number of young patients she found in the archives. So perhaps this phenomenon is not new.

What does not surprise me is that 36% of patients under the age of 50 underwent surgery, and 12% over the age of 80 also underwent a surgical procedure. It takes a good physicality to undergo this surgery and return to a quality of life that is sustainable and acceptable to the majority of patients.

In reading the report, what did not surprise but disgusted me, was that insurance weighed so heavily in the surgical arena. “Patients with private insurance received more surgical treatment (28%) than patients with Medicaid (22%), Medicare (18%), and VHA (12%)(p<0.009)” (J Clin Oncol 31, 2013 (suppl; abstr e18501). Our Veterans seem to be denied surgery when compared to those with private insurance.  21% of all patients in this database underwent surgery which explains why attempting to mount a robust surgical trial in mesothelioma will not be possible and we will continue to rely on case series and small powered trials to obtain surgical statistics in advising our patients.

Want to learn more about mesothelioma research? Ask one of our experts.

Facebook Exhaustion?

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There are days when all of us wonder what we are doing online so much of our day. Are you feeling vulnerable when reading stories of others who might not be doing well or fearfully comparing your stories to that of others? This is one of the drawbacks of joining an online community. You take the good with the bad and the ugly. So how can you protect yourself on Facebook?

If you are in feeling sad or anxious, perhaps choosing not to log in or only logging in to read your private message may be a good strategy. Or you might consider a Facebook break, and give the groups time to cool down and then jump back in when you are feeling stronger and wish to reconnect with others who are affected by mesothelioma.

There are many who feel the need to share, share and share again, and others who wish to maintain their privacy and participate on a limited basis. Some friend everyone in sight and then get bombarded with messages and feeds, while others judiciously join in and make friends slowly and carefully. Friends can be fleeting on Facebook. You do have the option to “unfriend” someone whose posts are particularly disturbing to you and perhaps send them a simple note as to why you might be unfriending them.

The Foundation is sensitive to the needs of those in the community and wishes to make the Facebook support group experience one that provides accurate information, support and the ability to connect with others.  We will never exploit those in our community and respect your privacy and emotional well-being.  Please contact any staff members with suggestions, comments, or even criticism. That is how we learn how best to care for our community.

Response to the Wall Street Journal Article “For One Asbestos Victim, Justice Is a Moving Target”

McQueensOn Monday, June 17, the Wall Street Journal Published the article “For One Asbestos Victim, Justice Is a Moving Target,” about Bill and Karen McQueen. Bill and Karen have been friends of the Foundation throughout Bill’s diagnosis and treatment, and we were deeply saddened by Bill’s recent passing.

What follows is the response submitted to the Wall Street Journal from the Meso Foundation’s executive director Mary Hesdorffer, Nurse Practitioner.

Words cannot express the suffering that a diagnosis of mesothelioma inflicts upon a family. The McQueen family contacted us early in their struggle and together we researched their best options and provided support and guidance during their journey. The litigation issue is complex, and certainly outside of my area of expertise but I would like to refocus your attention on the lack of effective treatments to stop this disease in its tracks. Mesothelioma is acquired through exposure to asbestos. There is no disputing this. What we do not know is how to prevent this disease, or how to pick it up in its earliest stages when it might be more amendable to treatment. The Mesothelioma Applied Research Foundation (curemeso.org) focuses its energies on funding peer-reviewed research (grants totaling over $8.2 million to date) projects which focus on prevention, early detection, and treatment, as well as basic science, as there is much we have yet to learn about the natural history of mesothelioma. 

The Meso Foundation looks forward to the day when a full ban on asbestos will be inacted by the United States government. However, the Foundation also understands that no law can remove all asbestos from the environment, including asbestos naturally present in the ground, or asbestos present in the attics of over 30 million homes in the United States. Given the long latency period between exposure and disease development, even if a complete ban were inacted today, thousands of Americans would still be at risk for mesothelioma. For all those who have been exposed in the past and will be exposed in the future, research to find better treatments and a cure for mesothelioma is the only way to ensure that asbestos becomes less dangerous and less deadly.”

If you are passionate about raising mesothelioma awareness, join our cause today. Help make a difference in mesothelioma research and treatment by showing your support. Join our cause now.

“Daddy’s Little Girl”

Erica_LanceThis Sunday is Father’s Day.  A day that is so hard for many of us. The date on the calendar stares back at me, as I recall fond memories of an amazing man- my father, Lance S. Ruble.

My father was diagnosed with pleural mesothelioma in August 2007. His life, our life as a family would be severely altered from that date forward. My dad embodied the meaning of “LIFE” and getting better for his family was now his only mission.

Facing the disease head on, he bravely chose to undergo all possible treatments available. He had chemotherapy, surgery, and radiation all in just 10 months. My dad was a fighter, like so many dads out there who have also courageously battled the disease. Sadly, one year later, my dad, my mentor, my hero, my friend, was gone. The man who I looked up to, the man I sought out advice from, the man who told me that everything would be all right, the man who was always there, was there no more.

I know many of you can relate to my words because you have lived them too. Though Father’s Day and really every day without my dad is difficult, I am often reminded how lucky I was, how fortunate I still am to have had this type of relationship and man in my life.

Even five years later, when I am making a major life decision, I am thinking “What would dad do?” When my son scores a goal at soccer, I can hear him say “Way to go!” When I am sad and missing him, I can see him putting his arms around me.

Very few people in our lives will make such a profound impact like our fathers have. So, as we remember and celebrate these incredible men be thankful that they have touched our lives in such a way that time will never alter.

Happy Father’s Day Dad.  Love, your little girl.

Erica Leigh Ruble is the fundraising coordinator at the Mesothelioma Applied Research Foundation. She is an estate planning lawyer from Fort Lauderdale, Florida. Erica, received her JD from Nova Southeastern University Law School and her MA and BA in Communication from the University of Central Florida.

Erica’s life was forever changed when her dad, Lance, was diagnosed with pleural mesothelioma on August 7, 2007. Lance owned a successful construction company, coached collegiate roller hockey, and gave back to the community. But the greatest talent he shared was making his family feel loved and safe. Determined to get well, he had chemotherapy, surgery, and radiation in 10 months. He passed away shortly after treatment, on August 16, 2008.

Watching her dad lose his life to such a painful disease ignited a fire inside of her to search for better treatments for mesothelioma patients. Though her dad was gone, he embodied the meaning of LIFE. It is his spirit that lives on in her to help others. Erica is committed to a life-long contribution to fighting mesothelioma. She and her family fund the Lance S. Ruble Memorial Grant which contributes donations yearly to mesothelioma research. By promoting advocacy, awareness, and research, Erica has found a way to channel her pain to help others. It is her life’s mission to eradicate the vicious effects of this orphan disease.

Janelle Bedel, a Meso Warrior, Brings Much-Needed Attention to Mesothelioma

MesoSym-0640A courageous meso warrior, Janelle Bedel, has been making huge strides in raising awareness of mesothelioma.

Last Thursday night, after announcing to her Facebook network that she was entering hospice care, hundreds, and at this point, thousands of Facebook users, changed their profile picture to the iconic symbol of Janelle’s fight against mesothelioma: the Wonder Woman logo. Janelle’s stoic attitude, despite several major surgeries and countless chemotherapy treatments, earned her the reputation of Wonder Woman among friends and family, and now even with strangers who read about her story online.

On June 3, Janelle, with her husband Andrew and 10 year-old son Carson by her side, was honored by the Mayor of Rushville, IN, where she lives, with a city medallion and proclamation declaring June 6 of every year as the “Janelle Bedel ‘Wonder Woman’ Day“.

Since then, she has also been featured in several news stories.

But that’s not all. With her friends and family, Janelle has already been a part of several fundraisers, and on June 19th, the Corner Restaurant in Rushville, IN will be donating 20% of its proceeds to benefit the Mesothelioma Applied Research Foundation.

Despite having been dealt such a difficult hand, Janelle has traveled across the United MesoSym-0528States, from Florida, to Washington, DC, to Las Vegas, NV, to New York City to fundraisers and awareness events. She has raised thousands in funding for research to honor her friend Larry Davis, who lost his battle against mesothelioma almost two years ago. Her recurring cancer has not stopped her from attending the Mesothelioma Applied Research Foundation’s conferences and meeting with Senators Coats and Donnelly and former Senator Lugar’s staffers, pleading for increased research funding for mesothelioma. She also played a key role in getting a resolution passed designating Sept. 26th as National Mesothelioma Awareness Day.

Does this story strike a chord with you? You can make a difference in the lives of mesothelioma warriors and mesothelioma survivors. Donate to mesothelioma research today.