myMeso.org | Mesothelioma Blog

Sunday, Sept. 7, is the fifth anniversary of Warren Zevon’s death. The Grammy award-winning composer and musican, who penned such popular tunes as “Werewolves of London,” passed away in 2003 from mesothelioma, at age 56.

The following videos are from Zevon’s last appearance on the David Letterman show in October 2002, where he was the only guest for the program, a tribute to his life and work. During the interview with Letterman, Zevon quipped that facing death had taught him to “enjoy every sandwich,” a reminder to savor each moment of life.

These videos provide a wonderful portrait of this talented musician. He is greatly missed.

Warren Zevon’s son, Jordan, also a talented musician, is an active advocate for mesothelioma and asbestos disease awareness, and spokesperson for the Asbestos Disease Awareness Organization.

A young woman believed to be Britain’s youngest mesothelioma patient, at age 28, passed away last week, just two years after her diagnosis, according to a story in the Daily Mail. Leigh Carlisle, who grew up in Manchester, had peritoneal mesothelioma, affecting the lining of the abdomen.

Because of its long latency period – from 20 up to 50 years – mesothelioma usually occurs in older people, age 50 and older. For that reason, Carlisle’s mesothelioma eluded diagnosis early on, with doctors mistaking her symptoms for ailments such as irritable bowel syndrome (IBS), pelvic infection and endometriosis. Doctors were stunned when they diagnosed peritoneal mesothelioma.

Because of her young age, researchers believe Carlisle may have come in contact with asbestos – the only known cause of mesothelioma – in her school, or possibly from a factory yard near her childhood home, which she used as a shortcut on her way to school each day. Asbestos sheets were cut at the yard.

According to the report, about 2,000 people in Britain die from mesothelioma each year, a figure that has doubled since 1992. The paper reports that 90,000 people in the UK will die from the disease, and another 90,000 from other asbestos-related lung diseases.

Additionally, the report says about 200 school workers have died or are suffering from illnesses related to asbestos exposure in schools in Britain, where it is estimated that about 13,000 schools still contain asbestos.

Following her diagnosis, Carlisle worked for mesothelioma and asbestos awareness. Her family requests that donations in her memory be made to the Oldham Cancer Support Centre in Failsworth:

Oldham Cancer Support Centre
Failsworth Primary Care Centre
Ashton Road West
Failsworth
M35 0AD
Tel: 0161 906 2940

An article published by the Daily Inter Lake, which serves Northwest Montana, reports on a new study by Dr. Alan Whitehouse, a pulmonologist affiliated with the Center For Asbestos Related Disease (CARD) in Libby, Montana. Dr. Whitehouse’s study, published in the American Journal of Industrial Medicine, predicts an epidemic of mesothelioma cases in Libby in the next 10-20 years.

Dr. Whitehouse, along with four other physicians including CARD’s Dr. Brad Black, studied 31 mesothelioma cases, including 11 cases not previously reported. The study focused specifically on non-occupational asbestos exposure, including exposure to contamination of the community, the surrounding forested area, and areas in proximity to the Kootenai river and the railroad tracks used to haul vermiculite.

It is estimated that more than 200 people in Libby have died from asbestos-related disease, and CARD is following 2,000 additional asbestos cases. CARD primarily serves Libby residents who were affected by the W.R. Grace-operated vermiculite mine, which was in operation for many years, and at high capacity from the 1940s to the 1970s.

Focus has recently shifted to include people suffering from asbestos disease and mesothelioma who never came into direct contact with the vermiculite mining operation. In June, the U.S. Department of Health and Human Services and the Environmental Protection Agency announced an $8 million grant to fund a five-year study of the effects of low-level asbestos exposure.

The Centers for Disease Control (CDC) recently announced a new program to provide $30 million in grant money for health screenings, assessments, monitoring and tracking, and improved access to health care services and treatments for those who may have been impacted by the World Trade Center collapse on Sept. 11. The grant will be available not only to first responders and other workers, but also to hundreds of thousands of Manhattan residents who live or lived near the Twin Towers.

The buildings’ collapse released thousands of pounds of hazardous material into the atmosphere, which may have included a combination of glass, asbestos, fiberglass, pulverized concrete, lead, mercury, cadmium, dioxins and PCBs. Construction of the World Trade Center buildings was begun before the use of asbestos was banned in the U.S., and some estimates say as much as 400 tons of asbestos fiber was in the buildings.

People near Ground Zero could experience a number of medical problems as a result of their exposure to this toxic dust, including respiratory problems and asbestos disease including mesothelioma.

In an official release from the CDC, Christine Branche, acting director of the CDC’s National Institute for Occupational Safety and Health (NIOSH), said, “These public health dollars extend the reach of our efforts so that they help support the provision of the health care services to residents, students, an others who were in the vicinity of the attacks of September 11, 2001.”

The release says the NIOSH-administered grants provide up to $10 million per year for three years, and the money can be used to help cover gaps when individuals’ public or private insurance is insufficient to fully cover the costs associated with care or treatment.

Funding will be provided to one to three organizations, with the deadline for proposal submission set for Aug. 25, 2008. For more information about how to apply for one of these grants, visit www.Grants.gov. The CDC encourages health and medical care facilities to apply.

The CDC says it already has invested at least $925 million in programs to support responders to the 9/11 emergency.

After years of ignoring the dangers of asbestos, and the resulting nationwide epidemic of asbestos disease, including mesothelioma, there is a renewed interest in studying this deadly material. This week, the Billings Gazette announced the federal government will fund an $8 million study to understand the health effects of low-level exposure to asbestos. The study will be based in Libby, Montana, where more than 200 people have died to date as a result of asbestos mining operations in the town, and hundreds more people suffer from asbestos related diseases.

The Libby program, dubbed the Libby Amphibole Health Risk Initiative, is funded by the Environmental Protection Agency and the Department of Health and Human Services’ Agency for Toxic Substances and Disease Registry. The study is expected to span 5 years with a goal of expanding knowledge about the potential and real health issues of asbestos exposure.

Libby already has proved a tragically rich source of knowledge about long-term exposure to high levels of asbestos, as the EPA’s initial examination and cleanup of the town focused on miners with direct exposure to the substance in their jobs, as well as people who handled asbestos mineral and were exposed to asbestos dust secondarily on a daily basis.

But, the Gazette reports, too little is know about exposure to lower levels of asbestos. EPA officials hope that results of the study will benefit not only the residents of Libby, but people throughout the country.

In April, the Minnesota state legislature approved $4.9 million for its own five-year study, to be conducted under the direction of the University of Minnesota, in connection with unusually high levels of mesothelioma affecting Iron Range mine workers. A large question in the area is whether dust from the taconite mined there - a fibrous mineral similar to asbestos - could also cause mesothelioma.

A key part of the Minnesota research will be an examination of previous asbestos exposure among mine workers, which will expand the base of knowledge about the affect of asbestos on health, in addition to the new studies about the effect of taconite.

According to the Billings Gazette, among tests to be included in the Libby study are a comparison of film and digital chest X-rays to determine which is best for assessing the lungs, a comparison of the health of people exposed to Libby asbestos in childhood versus people who weren’t, an expanded evaluation of Libby residents who were exposed to asbestos, an assessment of whether the health problems related to asbestos exposure extend beyond lung disease.

Researchers in Libby also hope to make improvements to public health tracking systems and patient health record databases, to better link exposure information to health conditions, the Gazette reports.

Gayla Benefield, perhaps one of the best-known residents of Libby for her early outcry about the health effects of asbestos on the people in her town, says she is happy to see an emphasis on research.

She was a charter member of the board of directors of the Center for Asbestos Related Disease (CARD), a not-for-profit clinic governed by a volunteer community board and devoted to healthcare, outreach, and research to benefit all people impacted by exposure to Libby amphibole asbestos. She only recently retired from her position with that organization.

“This is something I’ve wanted from the onset - more study and more research,” she says. “I’ve been especially interested in how much or how little of the (asbestos) fiber can cause meso, and I’ve been really concerned about the schools having been contaminated.”

The key, Benefield says, is to detect mesothelioma at its earliest stage, when there is still time for treatment to prolong life. When people around her in Libby began being diagnosed, she says, their mesothelioma was so advanced that many died within days of the diagnosis.

“We all - everyone in Libby - live under the threat of developing mesothelioma,” she says. “They’re never going to get all that (asbestos) fiber out of Libby, or anywhere for that matter, homes with asbestos insulation, so the research is the big thing. Any and all research having to do with mesothelioma is fantastic. A dream come true.”

A report in The Courier Mail, based in Queensland, Australia, says mesothelioma deaths could double in the coming years, as the disease begins to strike end users of asbestos products, like amateur home renovators.

According to the report, the “first wave” of mesothelioma victims were those who mined asbestos, and the second wave affected people who worked with asbestos in factories or manufacturing industries. The next wave, they say, is affecting people who work with asbestos materials, like construction workers.

In addition to mesothelioma, exposure to asbestos, which has been used in building materials in Australia for decades, also causes asbestosis and asbestos-related lung cancers.

Asbestos Diseases Foundation of Australia president Barry Robson is working with government officials for a national approach to education, treatment and compensation for asbestos-related diseases.

The Mesothelioma Applied Research Foundation (Meso Foundation) has issued an “action alert” urging its constituents to call on their House Representative this week to support prompt passage of The Bruce Vento Ban Asbestos and Prevent Mesothelioma Act of 2007 (H.R. 3339), sponsored by Rep. Betty McCollum (D-MN).

In October 2007, the Senate companion bill, sponsored by Sen. Patty Murray (D-WA), passed. The House bill toughened the legislation, under the direction of the Environment and Hazardous Material Subcommittee of the House’s Energy and Commerce Committee, eliminating an exception for asbestos present at 1 percent or less by weight, making the ban a matter of federal statute rather than EPA regulation, and adding enforcement provisions.

The Meso Foundation reports the critically needed medical research funding provisions from Sen. Murray’s and Congresswoman McCollum’s legislation have not yet been added to the Committee Print.

In a statement released yesterday in support of including the research funding, the Meso Foundation said, “for the sake of all those already exposed, those now sick, and those who will be exposed in the future to asbestos already in place, we call on the Health Subcommittee to follow Sen. Murray and Congresswoman McCollum in recognizing the necessity of a robust asbestos disease research program, and to adopt the research funding provisions included in their legislation.”

Read the full story about this important legislation at Yahoo! News.

Supporters are urged to contact their Representative in Washington, DC, to urge inclusion of the research funding and swift passage of the complete bill once the funding is in place.

In Alabama, House Representatives are Robert Aderholt (4th Congressional District), Jo Bonner (1st), Mike Rogers (3rd), Spencer Bachus (6th), Robert E. “Bud” Cramer (5th) and Terry Everett (2nd). If you are not sure which is your congressional district, to locate contact information for your representative or to locate the representative for your state, visit the United States House of Representatives online, and click on your state for a list of your representatives.

Please contact your Representative NOW to let them know you support this legislation and to ask for their support. Please email me if you’d like any help!

As part of my work to raise awareness about mesothelioma, other asbestos related diseases and lung cancer, I talk to a lot of people facing these diagnoses. I also read a lot of message boards and forums that deal with these issues and provide a sounding board for patients, families, caregivers and even medical professionals working in this field.

A couple of the best forums, in my opinion, are the Lung Cancer Alliance Survivors Support Community, and the many forums sponsored by the LUNGevity Foundation. Recently, both groups have been tackling a difficult topic - how to find joy in daily living when faced with a diagnosis that is often grim.

They ask, “what is the positive side of lung cancer? IS there a positive side?”

Many people credit the forums themselves as a positive, providing a network of new friends, and helping them to find a place where they can be uplifted by other people’s stories of success. They say forums like these help them find relief by sharing their own fears and finding answers to their questions, and by helping them learn they are not alone.

Many echo each other in their feeling that their experience with cancer has taught them to value each day, and not to wait for tomorrow to accomplish goals. That surely would be a blessing for all of us to learn, wouldn’t it?

Some lung cancer survivors handle their challenges with humor. Yesterday I mentioned Debbie, who lives in the UK, who started her own web site about her battle with mesothelioma, and who nicknamed her tumor “Theo,” and provides reports on his condition and sometimes addresses him personally in her blog.

A poster on the LUNGevity forum recently found the humor in a YouTube video, in which two teenage girls spoof a Justin Timberlake rap song, “My Love,” with their own version, “My Lung,” in which they express their affection for their lung health. It seems they made the video as part of a high school health project.

On a similar track, a friend who knows I write about lung cancer sent me a link to an odd little web site called “I Heart Guts,” which features, among other things, plush toys and t-shirts depicting happy, smiling internal organs, including a shirt bearing the slogan “I Lung You.”

What about you? If you have been diagnosed with mesothelioma or another asbestos disease or lung cancer, or if you are helping a family member or friend, how do you find peace and inspiration? What helps you?

One of the things I’d like for this site to do is to provide a resource for people struggling with meso, and a place to network and share ideas. Post your story to the Meso Map, or leave a comment to let me know what inspires you. Tell me if there’s another forum you like, or a web site with good information that I should add to my page’s blog roll.

This site is here for you.

Probably the most important mission of myMeso.org is to give you – people affected by mesothelioma, other asbestos-related diseases, and lung cancer – a place to tell your story. Whether you are personally struggling with the disease, or are helping a loved one or friend face this diagnosis, we want to provide a forum where you can share what you are going through.

To help you do this, and to help other visitors to myMeso.org find your story, we’ve added a new Meso Map feature. The Map is interactive, and will have markers showing where different people affected by mesothelioma, asbestos disease or lung cancer are located in the United States or around the world. Click on any marker on the map to read their personal story.

On the Map page, you can also access a form that makes it easy for you to submit your own story. You can share as little or as much personal information as is comfortable for you.

The Map can be easily found on the myMeso.org home page, at the top right - just look for the map with the words “Help Raise Awareness.” Or, visit this page directly by copying the link: http://www.mymeso.org/mesothelioma-stories-share-your-story and pasting it into your web browser.

Personal stories are SO important.

Telling your story may give you the outlet you need, to express the frustrations, joy, fear, successes, and anger - the whole range of emotions you experience.

Your story may provide guidance, comfort and a sense of community for people who are facing similar challenges. You may provide just the information about new clinical trials, about your experience with different treatment options, or an outstanding support group that is just what someone else is looking for.

Most of all, sharing your story will help us to put a human face on mesothelioma, which is critical to sparking action to fund research and find a cure.

Whatever you want to say, we’re ready to listen.

So please, visit our Meso Map page to read stories from mesothelioma and lung cancer survivors, and share your story!

A compromise has been reached in the Minnesota legislature over funding for a mesothelioma research study. MyMeso has been following the progress of a bill in the Minnesota House that would provide $4.9 million to fund a study of mesothelioma and asbestos disease in the state’s Iron Range miners. More than 58 taconite miners have died from mesothelioma or other asbestos disease.

There was some controversy over the source of the funding when the bill was introduced in the House. Gov. Tim Pawlenty objected to the proposed funding source, a special state worker’s compensation fund, fearing it would raise premium costs for businesses that use the fund. The governor had threatened to veto the bill unless an alternate funding source was established.

An amendment proposed by the Minnesota Senate yesterday afternoon would fund the bill from a Department of Commerce fund, which is an “assigned risk” worker’s compensation fund.

The money will fund a five-year research project headed up by the University of Minnesota, which will review the health of miners and spouses, study the health records and occupations of miners who died and analyze the air quality in and around the mining communities.

The Senate has indicated support of the revised bill, with a final vote expected early next week. It will then move back to the House, where it also is expected to be met favorably.

According to TwinCities.com, a Pawlenty spokesman said the governor supports the amended bill and “believes it’s very important that this study moves forward.”