Category: Uncategorized
Register for a Conference This Spring for Mesothelioma Support
Mesothelioma patients and their families often need support. Sometimes it is found in the small community of other mesothelioma patients, other times leaning on your own family and friends is all that is needed.
But this spring, mesothelioma patients and their families have two opportunities to learn, draw support, and empower each other at conferences from two of the leading organizations and brings breakthroughs and hope to the mesothelioma community. Both of these conferences are excellent ways to meet other people on the journey of mesothelioma, to increase your knowledge of the disease, and to listen to experts in the field.
2015 International Symposium on Malignant Mesothelioma
March 2-4 • Bethesda, MD
The Mesothelioma Applied Research Foundation and The National Cancer Institute
For more information and to register, visit curemeso.org.
11th Annual International Asbestos Awareness Conference
The Asbestos Disease Awareness Organization
April 17-19 • Washington, DC
“More than 30 renowned experts and asbestos victims from ten countries will present the latest advancements in disease prevention, global advocacy, and treatment for mesothelioma and other asbestos-caused diseases. Patients and families will also look back at our accomplishments over the past eleven years and ban together in hope for a future free from asbestos disease.”
For more information and to register, visit asbestosdiseaseawareness.org.
Wherever you might be in your journey with mesothelioma, it helps to have support and to know you are not alone. These learning opportunities offer all of us a chance to empower ourselves with the latest knowledge and to maybe think of our journey in a different way.
Funding is Crucial for Mesothelioma Research Projects
The way to unlock the mysteries of diagnosing and treating mesothelioma is through research. Research starts with an idea to be explored. While dedicated scientists have made inroads in the treatment of mesothelioma, with multi-centered clinical trials, funding continues to be an issue. In today’s competitive research environment it is not enough to have a promising idea- funding must be obtained.
Dr. Ritu Gill, of Brigham and Women’s Hospital, presented a poster session at the International Mesothelioma Interest Group Conference in Boston in September 2012. Her poster involved measuring the bulk of mesothelioma on CT scans, and the implications for treatment recommendations. She wanted to continue this valuable work, but she had no more funding available for the project.
At a discussion on where to go with these promising results, Mary Hesdorffer of the Mesothelioma Applied Research Foundation, approached Dr. Gill and said her foundation could help. In October 2014, at the International Mesothelioma Interest Group Conference in Cape Town South Africa, Dr. Gill again presented the findings of her research. Her and her collaborators’ findings are promising in the assessment of malignant pleural mesothelioma, volume of the disease at diagnosis, as measured by CT scans, and recommending the most promising treatments for the patient.
Without the Mesothelioma Applied Research Foundation’s support, this valuable research could not have taken place. The Meso Foundation provides seed money for mesothelioma research. The Meso Foundation has funded over $8.7 million in research projects across the globe.
As we look forward to the New Year, and reflect on the progress that has been made with diagnosing and treating mesothelioma, we urge you to check out the reports on the research that the Mesothelioma Applied Research Foundation has sponsored at www.curemeso.org. And, if you are looking for an organization to donate to in 2015, consider helping out the mesothelioma community.
Together we can work towards the cure in 2015.
If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].
Turn Gossip into an Opportunity to Advocate for Mesothelioma Patients
People talk. It’s what we do. We discuss the weather, current events, and even each other. That’s where things can start to get out of control. An innocent conversation can spiral into a story that is far from the truth. People feel that they have the right to share details that may have been told in confidence. But that information can be misinterpreted and gossip begins to run rampant.
Since my Dad’s battle with mesothelioma, I have found myself to be fiercely protective of the ins and outs of my life, only sharing details with close family members and friends. Since mesothelioma is such a rare disease, the details of this ailment lends itself to confusion; however, hearing things about yourself and your family that simply aren’t true is a painful experience, and one that should never happen.
Words have the power to build up and to tear down. They can mend relationships or break them apart. We need to be increasingly mindful of the power of words, especially in such sensitive situations as a medical diagnosis.
If you find yourself in a situation where information about you or your loved one has been misconstrued, do your best to see it as an opportunity to educate and advocate. Maybe this is a chance to share your true story that could eventually help someone else. This could be the eye-opener that causes someone to ponder the dangers of asbestos. Use this unfortunate event as a catalyst for change.
The Conversation Project May Help Start End-of-Life Discussion for Mesothelioma Patients
Everyone knows on some level they are going to die, yet we rarely tackle the subject head-on. But one organization has started a movement that hopes to open a dialogue on death.
The project, started by a group of media, clergy, and medical professionals, is dedicated to helping people talk about their wishes for end-of-life care. There are facts that support that what we say we want at the end is not what is happening. Most Americans die in the hospital – around 70% of deaths occur there. Is that what people really want?
There is a movement to make death not just a medical experience, but a human experience. The Conversation Project, a public awareness campaign that works with the Institute for Healthcare Improvement, aims to get people talking about their end-of life-choices. There are a lot of reasons to make this a priority- the benefits of giving patients and families comfort and peace at a stressful time, saving money, reforming health care. A Conversation Project survey conducted last year, found that while 90% of Americans think it’s important to talk with relatives about end-of life decisions, only 30% have had the conversation.
As a way to get the conversation started, The Conversation Project is offering a campaign entitled, “Death over Dinner.” The week of dinner parties, held from January 1-7, is to “encourage Americans to pick a date on which to fill their tables with comfort food, family, and friends and start talking about how they want to live the last days of their lives.” Kits are available online at TheConversationProject.
Anyone diagnosed with mesothelioma is confronted with their mortality. Examining what they want can be a gift that helps their loved ones and honors their wishes- and it can all be started with a conversation over dinner.
Changing how we as a culture view death, and how we treat it, starts with the reality that it will happen, so let’s talk and eat and make our individual wishes known!
If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].
(Photo credit: The Conversation Project)
Giving Thanks to the Researchers and All the Breakthroughs in Mesothelioma Research
Although Thanksgiving has just passed, we can still give thanks for the research advancements made for patients with mesothelioma. Here are three promising studies in the prevention, diagnosis, and treatment phases of mesothelioma.
The time between exposure to asbestos and the development of mesothelioma, it can be decades, has long presented challenges for the diagnosis and treatment of mesothelioma. In an October 22 article by Sandy Bauers in The Philadelphia Inquirer, she describes a four year study that involves researchers from genetics to chemistry who will study people exposed to asbestos. Why do some people get mesothelioma and others do not, can it be prevented? The study will take place in Ambler, Pennsylvania, a site of closed asbestos factories. The study is funded by a federal grant of $10 million to The University of Pennsylvania’s Center of Excellence in Environmental Toxicology.
Diagnosing mesothelioma and presenting the best treatment options for each patient has been the focus of many research projects. Does the volume of disease as measured on a Cat Scan help in the clinical staging of mesothelioma? View a presentation on YouTube by Dr. Ritu Gill from last month’s IMIG conference in South Africa to find out. In the short video, she describes a multi-center clinical trial and the promising results.
Another promising clinical trial reported at October’s IMIG conference is being led by Dr. Raphael Bueno, Chief of Thoracic Surgery, Brigham and Women’s Hospital, Boston. According to an Oct. 24 press release, from Verastem, “Results from a Window of Opportunity study in surgically-eligible patients demonstrate a reduction in pFAK, cancer stem cell markers, and tumor size following 12 days of treatment with VS-6063.”
For all the researchers and all the discoveries that help ease the suffering of the mesothelioma patients and their families, we give thanks!
If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].
Sources:
- The Philadelphia Inquirer
http://articles.philly.com/2014-10-20/news/55201486_1_asbestos-waste-ambler-superfund - (Oct. 24 press release, from) Verastem
http://phx.corporate-ir.net/phoenix.zhtml?c=250749&p=irol-newsArticle&ID=1981229 - (YouTube by) Dr. Ritu Gill
https://www.youtube.com/watch?v=whug_4C5UVA
Free Mesothelioma Patient & Treatment Guide
We’d like to offer you our in-depth guide, “A Patient’s Guide to Mesothelioma,” absolutely free of charge.
It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.
Download Now