Category: For Your Family
Mesothelioma Applied Research Foundation Announces Annual Symposium
The Mesothelioma Applied Research Foundation has announced plans for its 11th annual International Symposium on Malignant Mesothelioma. The Symposium, scheduled March 5-7 in Alexandria, VA, is an opportunity for the entire mesothelioma community, including patients, their families, caregivers and advocates, to come together to network and to learn the latest mesothelioma news.
For the first time, the Meso Foundation will sponsor a concurrent seminar for scientists and medical professionals only. The Mesothelioma Scientific Seminar is designed to “facilitate high level sharing of information, collaboration and learning” among mesothelioma specialists. These sessions will be for the scientific community only; however, many of these world-renowned mesothelioma physicians and researchers will be accessible to Symposium attendees.
The Symposium gives face-to-face time for people from so many backgrounds to discuss the reality of dealing with mesothelioma. Rare diseases, such as mesothelioma, are very isolating, and the symposium is an opportunity to get people together to let them know they are not alone in their journey. Attendees have the chance to network, meet with their government representatives, honor their loved ones and learn about what is going on in the field.
The list of speakers at the two-day event is the Who’s Who of mesothelioma experts from throughout the United States and Europe. Keynote speakers include Dean Fennell, PhD, University of Liecester; Michele Carbone, MD, PhD, University of Hawaii and Ira Pastan, MD, National Cancer Institute. Other speakers are Dr. Lee Krug, Memorial Sloan-Kettering Cancer Center, Dr. Robert Taub, Columbia Presbytarian, Anne Tsao, MD, MD Anderson Cancer Center and Hedy Lee Kindler, MD, University of Chicago. All of these speakers have dedicated their careers to improving the lives of mesothelioma patients.
During the event, the Meso Foundation will also present various awards to leaders in the field. Michele Carbone, MD, PhD, University of Hawaii, will be presented with the 2014 Pioneer Award which honors individuals “pioneering” scientific advances in the field of mesothelioma, with the goal of eradicating the life-ending and vicious effects of mesothelioma. Carbone, one of the world’s leading authority on mesothelioma, is credited with significant breakthroughs including determining that the BAP1 gene, which is involved in tumor suppression, might underlie mesothelioma in people with a strong family history of the disease.
“He [Carbone] has been a leader in the field of mesothelioma research, and every one of his many contributions brings us that many steps closer to life-saving treatments for mesothelioma patients,” said Mary Hesdorffer, NP, Meso Foundation’s executive director upon announcing the award.
http://blog.curemeso.org/meso-foundation-congratulates-representative-betty-mccollums-efforts-advance-mesothelioma-research/
The Meso Foundation will also present the winner of the June Breit and Jocelyn Farrar Outstanding Nurse Award.
Mesothelioma is a rare, incurable form of cancer primarily caused by exposure to airborne asbestos fibers that is diagnosed in close to 3,000 Americans each year. Although mesothelioma can be treated with varying degrees of success with surgery, chemotherapy and radiation, there is still no known cure for the disease. The prognosis for mesothelioma patients is an average survival time varying from 4 – 18 months after diagnosis.
The Meso Foundation is one of the leading organizations “dedicated to eradicating the life-ending and vicious effects of mesothelioma.” The Meso Foundation’s activities include funding mesothelioma research, providing education and support for patients and their families, and advocating for federal funding of mesothelioma research.
See the Meso Foundation’s website for more information and to register for the conference.
http://www.curemeso.org/site/c.duIWJfNQKiL8G/b.8578185/k.6D0E/Meso_Foundation_Symposium.htm
Tips to Mesothelioma Patients from Rare Disease Sufferer, Sam Berns
Dealing with a rare disease like mesothelioma is not easy. Treatments such as surgery, chemotherapy and radiation are constant reminders of the battle raging inside your body. Managing cancer and its side effects can be stressful and depressing, but finding a way to focus on the positive aspects of your life can make a difference in your physical well-being and in your quality of life.
Sam Berns, a 17-year-old who recently passed away from the rare disease progeria, which causes rapid aging, was faced daily with obstacles, health issues and pain, yet he lived a full and happy life. When asked in an NPR interview what was the most important thing people should know about him, Sam responded simply: “I have a happy life.”
During an inspiring speech hosted by TEDx just months before he passed away, Sam offered his three secrets to happiness:
- Focus on what you can do, not what you cannot do.
- Surround yourself with people you want to be around.
- Keep moving forward and continue to strive for something else.
“I try hard not to waste energy feeling badly for myself,” said Sam. He added that instead of ignoring the feelings, he “lets them in so that I can acknowledge them, and do what I need to do to move past it.”
Many long-term mesothelioma survivors are living testaments to Sam’s outlook. Mavis Nye has battled pleural mesothelioma for over four years, and she is probably one of the happiest people you’ll meet. Keeping mesothelioma in check is not easy, but Mavis believes that the key to her longevity can be attributed to her joy of life. And, Mavis spends time with those who bring her joy.
“Ray [her husband] and I enjoy doing so much together,” said Mavis. “We are laughing all the time and enjoy camping together in the motor home. That’s when we can really relax.”
Mavis’s attitude is echoed by another mesothelioma warrior, Lou Williams. Lou, who has battled mesothelioma for nearly ten years, raised a toast to herself and other mesothelioma patients on New Year’s Day, saying: “Here’s to being here in 12 months time and to living well in the meantime – doing what we love – travelling, spending time with family and friends and fitting as much into our lives as we do now!”
Jan Egerton also offered a New Year’s resolution to all mesothelioma patients, encouraging “everyone in the mesothelioma community, whether you are a patient or a caregiver, to keep a positive attitude and to remember that for every bad day there will be a good one.”
Just like Sam, mesothelioma patients are faced with an uncertain future. But even when Sam was at his lowest and in the hospital fighting another complication, he focused his thoughts on looking forward to when he would be better. He was buoyed by his fourth philosophy, “I never miss a party if I can help it!”
Americans Urged to Contact Congress to Forward Mesothelioma Research
President Obama kicked off 2013 by signing into law the Recalcitrant Cancer Research Act. The legislation establishes a research framework within the National Cancer Institute to guide research efforts for recalcitrant cancers, or those with high mortality rates. Now, it is time for the NCI to develop the frameworks, and the Mesothelioma Applied Research Foundation is asking Americans to rally around U.S. Congresswomen Betty McCollum (D-MN) and Chellie Pingree (D-ME) in urging all members of Congress to push the NCI to include mesothelioma in the frameworks.
McCollum and Pingree sent a “Dear Colleague” letter to the members of the U.S. House of Representatives asking them to join them in urging Dr. Harold Varmus, Director of NCI, to guide research efforts for the rare, asbestos-caused mesothelioma.
A recalcitrant cancer is a cancer with a five-year relative survival rate below 50 percent and one that has not seen “substantial progress in the diagnosis or treatment.” Mesothelioma meets the act’s definition for both of these requirements: the cancer has just a five to ten percent five-year survival rate, and there is only one FDA-approved treatment for the cancer. There is no cure for mesothelioma.
“Congresswomen McCollum and Pingree are leading a very important effort for everyone affected by mesothelioma by encouraging the National Cancer Institute to create a scientific framework to progress mesothelioma research,” said Meso Foundation’s executive director and nurse practitioner, Mary Hesdorffer in a press release applauding the Congresswomen’s action.
The Mesothelioma Applied Research Foundation, a national organization dedicated to eradicating mesothelioma and the suffering it causes by funding the highest quality mesothelioma research, has long advocated the U.S. government for increased focus on mesothelioma research.
Take action by urging your Congress member to progress mesothelioma research. Visit the Mesothelioma Applied Research Foundation’s web site for more information.
Sources :
- Mary Hesdorffer
http://blog.curemeso.org/meso-foundation-congratulates-representative-betty-mccollums-efforts-advance-mesothelioma-research - Recalcitrant Cancer Research Act
http://www.gop.gov/bill/h-r-733-recalcitrant-cancer-research-act-of-2012-as-amended
Planning for Thanksgiving Relieves Stress for Mesothelioma Patients
Thanksgiving is a time to reflect on all that we are grateful for, to enjoy festive times and to reconnect with our family and friends. However, for families dealing with mesothelioma, the holiday season can be a challenging and stressful time. Many patients may feel like forgetting the holidays while battling cancer, but planning for the days ahead can be healing for them and their family.
Patients and caregivers should communicate openly and honestly with each other about how they would like to handle the holidays. Although neither may be up to enjoying loud celebrations and large meals, they should still consider marking the special day. By talking out their feelings and needs, they will be better able to plan and communicate those plans with other family members and friends.
Consider lightening up around Thanksgiving and the holiday season by forgoing the extravagance of the season, and focusing on enriching relationships and relishing family time. Simpler, quiet times on Thanksgiving may be what is needed to eliminate the temptation to overdo it while still enjoying the holiday.
Realize that even though you may be surrounded by loved ones, you may still feel sad. Suzanne Phillips, Psy.D., ABPP, wrote in ‘Thankful But Not Happy,’ as you cope with your sickness or a loss over Thanksgiving, “Be gentle with yourself and leave room to embrace all of what you feel.”
“Holidays won’t end all pain and suffering but they can help us restore what we need- to look forward with hope,” Phillips added in ‘Finding the Healing Potential in Holidays.’
Know more about Mesothelioma and how you can deal with it.
Extended Stay America Offers Free Rooms to Mesothelioma Patients Undergoing Treatment
Many people diagnosed with mesothelioma choose to travel to larger cities where mesothelioma specialists are available to offer the latest treatments. The cost for this can be prohibitive, however, for some. Thanks to support from the American Cancer Society and Extended Stay America, patients and their families undergoing cancer treatment now have a place to stay for free.
In an Oct. 21 press release, the American Cancer Society announced that Extended Stay America will “provide 10,000 free nights and 10,000 discounted nights in its hotels to cancer patients who must travel to another city to receive treatment.” Beginning November 1, the rooms will be available in Atlanta, Boston, and Houston, and will be rolled out to other cities in early 2014. The 10,000 rooms at a discounted rate of $12 per night will be offered at 684 locations in the US.
“With cancer impacting everyone’s life in some way, we’re proud to partner with the American Cancer Society to provide the key to hope for patients battling cancer so they can focus on their fight,” said Jim Donald, chief executive officer at Extended Stay America.
Mesothelioma is a rare, incurable disease, not often seen by many oncologists. For optimal treatment, patients are encouraged to receive care from a mesothelioma specialist. A physician who specializes in treating mesothelioma patients has first-hand experience in treatment and diagnosis, as well as information on clinical trials and current studies in the field. More often than not, that specialist is in another city.
Boston and Houston both offer renowned mesothelioma centers. The University of Texas MD Anderson Cancer Center of Houston, which “cares for more patients with mesothelioma than almost any other center in the United States,” houses the Mesothelioma Program. The Program has over 30 experts representing the areas of thoracic surgery, thoracic medical oncology, radiation, pulmonary, and pathology – all with an expertise dedicated and focused on mesothelioma. Anne Tsao, M.D., associate professor in MD Anderson’s Department of Thoracic/Head and Neck Medical Oncology and director of its Mesothelioma Program is one of the leading authorities of mesothelioma in the United States.
Dr. David Sugarbaker, Chief, Division of Thoracic Surgery, founder and Director of the International Mesothelioma Program, Brigham and Women’s Hospital in Boston, is one of the world’s leading authorities on treating mesothelioma. Dr. Sugarbaker founded the International Mesothelioma Program at Brigham and has dedicated his career to treating malignant pleural mesothelioma and to improving mesothelioma patients’ survival rates.
The American Cancer Society already runs and manages the Hope Lodge that “offers cancer patients and their caregivers a free place to stay when their best hope for effective treatment may be in another city,” according to the ACS website. There are 31 Hope Lodge locations throughout the United States, including New York and 22 other states.
Jennifer Gelsickwrote a glowing review of the Hope Lodge in New York City where her father, Don Smitley, and her mother were able to stay during Smitley’s treatment for mesothelioma. Smitley traveled from Pennsylvania to NYC to receive treatment from Dr. Harvey Pass of NYU Langone Medical Center and Dr. Lee Krug of Memorial-Sloan Kettering Cancer Center.
“My family has benefitted greatly from the services offered by the Hope Lodge,” said Ms. Gelsick. “God bless all those involved in the Hope Lodge program, and thank you on behalf of all families and patients you’ve encountered!”
For more information about the Hope Lodge or Extended Stay America programs, call the American Cancer Society at 1-800-227-2345 or visit them on-line.
http://www.cancer.org/treatment/supportprogramsservices/hopelodge/index
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