Mesothelioma Help Cancer News
The CARE Act Supports Mesothelioma Caregivers
For many years we have had the privilege of accompanying patients and family members along their journey with mesothelioma. We have witnessed incredible courage and resilience by the patients and the caregivers during their unique journeys with this deadly cancer. Family caregivers are often a vital part of the team. Beginning with the mesothelioma diagnosis, the family caregiver often has to navigate the new and confusing world of medicine.
One of the most confusing times in a patient’s medical care is the transition from the hospital to home. Often the discharge instructions are confusing, and patients and families do not understand all that is involved in safely transitioning home. In the U.S., “informal caregivers” provide many hours of unpaid care for their loved ones.
Caregivers in the U.S. include family members who have no formal training in performing the tasks involved in a patient’s care. For patients with malignant mesothelioma, the journey cannot be done by the patient alone. Help is required. Family care giving can be an overwhelming task that can consume the patients’ caregivers, physically, financially, and emotionally.
The vital role that “informal caregivers” play in the health and well-being of all patients has recently been acknowledged. Organizations offering support and tips for caregivers include the American Association of Retired People- AARP (http://www.aarp.org/), and the Family Caregivers Alliance (http://www.caregiver.org/). Together, and with other organizations, they have supported and help passed The Care Act.
In November 2017, the Care Act was passed in Massachusetts. The Caregiver Advise, Record, Enable (CARE) Act supports family caregivers. When their family members go to the hospital and transition home the law requires that the patient will be able to designate a caregiver. The caregiver will have to be notified when your loved one is being discharged to home or to another facility. The tasks that are required to safely care for your loved one will need to be explained to the caregiver before transitioning home. Some of the examples of what will need to be explained and demonstrated are, medications, treatment of wounds, injections.
It is well known that the glue that holds a patient’s experience together is an unpaid family caregiver. They provide care for their loved ones in an attempt to keep them out of the hospital. Hopefully, The Care Act will help them and their loved ones make the journey a little less confusing.
The CARE Act has been signed into law in 36 states, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands. Find out more about the CARE Act at AARP.org.
Libby, Montana Mesothelioma Doctors Contribute Knowledge to Medical Journals
The doctors at Libby, Montana’s Center for Asbestos Related Disease (CARD) know a thing or two about mesothelioma. The town is home to a vermiculite mine blamed for widespread contamination from asbestos exposure and for hundreds of cases of mesothelioma, and CARD has been the hub for care and screening of many of the patients. Now, the medical team is sharing their knowledge of this deadly disease through collaboration on articles for scientific journals.
Dr. Brad Black and Dr. Gregory Loewen, both physicians at CARD, were among the authors in two separate studies published recently in the peer-reviewed journals Inhalation Toxicology and the Journal of Occupational and Environmental Medicine (JOEM), according to a Dec. 29 article in The Western News. The two provided their expertise into the studies looking at the pulmonary function of miners at Libby’s vermiculite mine.
In the study of 256 individuals who worked at the mine for a minimum of six months, the researchers concluded “eighty-seven percent of miners exposed to Libby Amphibole had pleural abnormalities on CT [computed tomography].” The study was published in JOEM.
“… most doctors probably don’t know about this unique type of asbestos related disease and wouldn’t be able to recognize it in their patients if they didn’t hear about it,” said Dr. Black on why the study is important.
The W.R. Grace vermiculite mine and mill located in Libby, closed since 1990, was found to have an asbestos deposit in the mine and is the site of significant asbestos exposure. According to reports, nearly 3,000 residents and former miners have been diagnosed with an asbestos-related disease, and over 400 have died from mesothelioma. Contamination from the site led the federal government to declare Libby a health emergency.
Asbestos is a known carcinogen and is proven to cause mesothelioma, a serious cancer caused by breathing in the asbestos fibers that then become lodged in the thin membrane that lines and encases the lungs.
The second study followed one individual who worked at the mine from 1969 to 1990 and had no other known exposure to asbestos. The person developed “asbestos-like” pathological features and eventually an adenocarcinoma. According to the authors, “This is to our knowledge the first time such an extensive evaluation has been conducted in a vermiculite miner from Libby, Montana.”
About CARD
CARD’s primary goal is to provide specialty healthcare and screening to those affected by Libby Amphibole Asbestos. CARD’s secondary goal is to stimulate research from around the country to gain further understanding of disease mechanisms, improve early disease and cancer detection and intervention, and develop effective health management strategies in hope of finding answers to improve health outcomes for individuals and communities.
Find out more about the Center for Asbestos Related Disease on its website.
Read the studies in the Dec. 1 issue of the Journal of Occupational and Environmental Medicine and in the Oct. 17 issue of Inhalation Toxicology.
Sources:
- Center for Asbestos Related Disease
http://www.libbyasbestos.org/ - Inhalation Toxicology
http://www.tandfonline.com/doi/abs/10.1080/08958378.2017.1372536 - Journal of Occupational and Environmental Medicine
http://journals.lww.com/joem/pages/default.aspx
- The Western News
http://www.thewesternnews.com/front_page_slider/20171229/libby_asbestos_clinic_contributes_research_to_two_journals
Make the Most of the New Year
During the holidays, “Happy New Year!” gets repeated countless times throughout the day. Whether it is from the barista at the local coffee shop or the staff at the medical center, this is not the message a mesothelioma patient or his or her family wants to hear. It is doubtful that anyone with mesothelioma is happy.
But today is the start of a new year, and mesothelioma patients and their families can make the most of every day. In 2018, consider looking at “happy” another way and change the way you look at the new year.
Help others in the mesothelioma community by offering them insights from your experiences.
Always stay positive.
Praise your caregivers and let them know they are appreciated and valued.
Take Pleasure in the little things and look forward to whatever the next day may bring.
Your medical team members are your partners and advocates. Insist on the best care from them, and make sure they know what you want.
Just like looking at “happy” one letter at a time may help you change your perspective, take 2018 one day at a time and make the most of the new year.
In the New Year: Moving On And Growing While Honoring Dad
This time of year is beautiful for so many reasons; the birth of Jesus being celebrated, time being spent with cherished family and friends, the snowy weather, I could go on and on about things I love about Christmastime. On the other hand, it’s a tough time when you are mourning the loss of a loved one. No matter how much time passes, it’s always a hard season for me without my Dad being here.
Just last night, I saw this picture of my father dressed as Santa. Every year for his Church Christmas party, he would emerge dressed as the big man in red. Even though he sometimes gave himself away (he would forget to change his boots and take off his watch almost every time!), you could see how happy he was listening to the children tell him about their year and how good they’ve been… even though sometimes, a child would be brutally honest with him, saying that they fell a bit short of the nice list.
When I saw that picture, I cried. I cried because this particular snapshot was from his last Christmas. I cried because I feel like my daughter has been cheated by not getting a chance to experience this tradition with him. I cried because no matter how old I get, I’ll always need my Dad. I cried because I don’t like change, and this change was one that I never could have seen coming.
Even though it is difficult, my family decides to carry on. Not just for my daughter, but for Dad. He loved Christmas and would want us to continue our traditions, as well as to make new ones together. Just because there are new things added, it doesn’t take away from the value of the old.
This is a great message for the New Year! Moving forward doesn’t have to mean leaving things behind. Growing doesn’t mean that you overlook the process that got you to where you are. Carrying on does not equal forgetting the past. It is a new year, a whole year of possibilities awaits you. So dive in, enjoy this time that God has given you, but don’t forget to reflect on years past, and smile at all of your treasured memories.
Top Mesothelioma Stories of 2017
Day after day, countless researchers from across the U.S. and the globe are driven to find an effective treatment, if not a cure, for mesothelioma. It is this dedication to research that brought some significant breakthroughs for mesothelioma care in 2017.
As 2017 comes to an end, Mesothelioma Help looks back at some of the biggest stories that brought excitement and hope to all of the mesothelioma community.
FDA Approvals
Anytime the U.S. Food and Drug Administration approves another anti-cancer therapy, the mesothelioma community takes notice. This year, two landmark approvals took the cancer world by storm: gene therapy and an approval based on a biomarker and not a tumor type.
FDA Commissioner Scott Gottlieb said in Dec. 7 remarks before the U.S. Senate Committee on Health, Education, Labor & Pensions Hearing:
https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm588046.htm
“We’ve seen two recent approvals of CAR-T therapies for cancer, where a patient’s own immune cells are re-engineered – using the tools of gene therapy – to target a patient’s individual cancer. This form of gene therapy represents a whole new paradigm in treating cancer. And the early results are changing the way we treat serious tumors.
Over the next several years, we’ll see this approach become a mainstay of treating, and probably curing, a lot of our most devastating and intractable illness. At FDA, we’re focused right now on establishing the right policy framework to capitalize on this scientific opening.”
Read about the first-ever gene therapy approval.
In another first, the FDA approved an anti-cancer drug based on a biomarker and not cancer type. The FDA granted accelerated approval to Keytruda as a treatment based solely on the genetic mutations of a cancer and not on the type of cancer.
The FDA’s Richard Pazdur, M.D. announced in a May 23 press release:
https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm560167.htm
“This is an important first for the cancer community. Until now, the FDA has approved cancer treatments based on where in the body the cancer started—for example, lung or breast cancers. We have now approved a drug based on a tumor’s biomarker without regard to the tumor’s original location.”
Keytruda is also approved in the U.S. for use in melanoma and lung cancer patients whose cancer continues to grow after a prior round of chemotherapy failed to stop the progression. The immunotherapy drug was wildly successful for Mavis Nye of England, who is now an eight-year mesothelioma survivor. She recently launched her Mavis Nye Foundation to give back to the community that supported her throughout her journey.
Read about the first-ever approval for an anti-cancer drug for a biomarker.
Clinical Trials
The National Cancer Institute promoted its nationwide clinical trial that is open to thousands of cancer patients for treatments based on the genetic makeup of their tumors. For patients suffering from cancer that continues to grow, despite previous treatment, the NCI-Molecular Analysis for Therapy Choice (NCI-MATCH) clinical trial offers hope. The trial was developed to determine whether treating patients with drugs that target the gene abnormalities believed to be driving their cancer will shrink their cancer regardless of the cancer type.
Read more about the NCI-MATCH trial.
To make the list of the top mesothelioma stories of 2017 doesn’t always mean it is good news. One of the big stories this year, unfortunately, is that the number of mesothelioma cases continue to rise. In its report “Malignant Mesothelioma Mortality — United States, 1999–2015,” published March 3, the U.S. Centers for Disease Control and Prevention reports that despite a decline in asbestos exposure due to regulatory actions and the decline in the use of asbestos, the number of mesothelioma deaths each year is still rising.
Read more about the report here.
http://www.asbestosdiseaseawareness.org
Asbestos Related News
None of the breakthrough drugs would be needed if people were not exposed to asbestos in the first place. Yet, exposure continues to be a real threat, and scientists, environmentalists and physicians continued their call for a ban on the toxic mineral.
At least one country recently took action to stop the spread. Brazil, the world’s third highest producer of asbestos, recently banned asbestos in the country.
Many in the U.S. mesothelioma community hope that this action opens the eyes of U.S. government officials and a U.S. ban won’t be far behind. Linda Reinstein, President/CEO and co-founder of the Asbestos Disease Awareness Organization, is doing her part and saw progress when the Senate passed the Alan Reinstein Ban Asbestos Now Act (ARBAN) of 2017.
Read more about what ARBAN could mean for Americans.
About Mesothelioma
Mesothelioma is a deadly cancer of the lungs, heart or abdomen, caused by past exposure to asbestos. Mesothelioma has a long latency period where those exposed to asbestos may not exhibit symptoms for decades after exposure. Mesothelioma can be treated with surgery, chemotherapy and radiation, however, the likelihood of recurrence of the cancer is high. There is no cure for mesothelioma.
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