I was also contacted by a woman in Texas, who hoped that I could put her in touch with another woman who had lost her husband to mesothelioma. Her anniversary was approaching, and she needed to reach out to someone who would understand. Of course Cheryl willingly contacted her to lend an ear.

Then, on Friday I posted a story about a photographer in Australia, Chris Ireland, who has created an exhibition of stunning images of mesothelioma widows, called Breathe. The fourteen portraits capture the sadness and strength of these suffering ladies, and also hope to capture a bit of the men they loved. Ireland spent two years on the project, becoming closely acquainted with each of the ladies he photographed. I contacted Chris and was delighted to learn that he does have plans to bring the exhibit to the UK and to the U.S. in the coming months, and I hope that myMeso can be a part of that. I will keep you posted.

Next, I came across a story in the Morgan County Herald, a community newspaper based in McConnelsville, Ohio, which featured the story of Karen Huffman, who recently donated $3,000 to her area Kiwanis-Jaycees for the construction of a new walking trail at the community park in Malta in honor of her late husband, Danny, who passed away from mesothelioma on July 31, 2006, just four months after his diagnosis.

According to the report in the Herald, Mrs. Huffman says her husband most enjoyed his daily walks, not just for exercise, but as his quiet time to commune with God. She said he walked two or three miles each day except Sunday. It was during one of these walks that he became breathless, and unable to make it back to his home. At that point, she says, he couldn’t deny something was terribly wrong.

“Danny would have been the first walker on that trail,” the Herald quotes Mrs. Huffman as saying about the new park.

I wonder, as I read this latest news, why it seems there are so many stories of this kind around me now. Have they always been there, but my work with mesothelioma has made them more visible to me? I hope that it means that there is more awareness in the United States, and around the world, of mesothelioma, and the dangers of the asbestos that causes it.

I hope, somehow, that this site can make connections or provide the news that will bring some sort of ease, or at least a sense of community, of not being alone. It is a terrible sisterhood these women share. But perhaps just knowing there is someone else who understands will bring a small measure of comfort.

SOURCE: myMeso › Meso widow donates $3000 for walking trail in memory of her husband

The exhibit debuted at the Australian Centre for Photography on July 17 (ended Aug. 22) and will next be featured at Latrobe Regional Gallery beginning Sept. 5 and running through October 4.

According to a World News Australia report about the project, Ireland was inspired with the idea for the exhibit after learning about mesothelioma in his mid-teens when a friend’s father passed away from the disease. He feels that the fact that mesothelioma is currently incurable adds to the poignancy of the loss, and says he hopes that by sharing these ladies’ stories, he can help raise awareness about the dangers of exposure to asbestos.

The World News quotes Ireland as saying, “…these ladies have gone through pain, they deserve to be heard and other people should avoid the same process.”

More information about the exhibit, including its striking images, can be found at Chris Ireland’s web site.

The Latrobe Regional Gallery is located at 138 Commercial Road, Morwell VIC. The exhibit will be open Monday-Friday from 10 a.m.-5 p.m. and Saturday and Sunday from 11 a.m.-4 p.m.

SOURCE: myMeso › Australian photographer captures emotions of meso widows in touching exhibit

The contest asked for reviews throughout the month of July, and was sponsored by GreatNonprofits, GuideStar and Planet Cancer. Awards were presented to organizations in various geographical areas, and also to some organizations based on their annual budget, so that organizations with smaller operating funds would not have to compete against those with major funding. The Meso Foundation, based in Santa Barbara, Calif., was named Best of West.

The Meso Foundation is a collaboration of patients, families, physicians, advocates and researchers working to find a cure for mesothelioma. They provide education for patients and families, raise awareness about mesothelioma and asbestos exposure, connect people into a supportive community, and raise funding for mesothelioma reserach.

According to a news release on the Meso Foundation web site, Perla Ni, CEO and Founder of GreatNonprofits is quoted as saying, “There are so many great nonprofits that don’t have an advertising budget and are not household names. Through this first-ever list of top-rated cancer nonprofits, you can see how some of these nonprofits literally have saved lives. Donors and volunteers who are interested in fighting cancer can now see which nonprofits are really making a difference.”

Visit the Mesothelioma Applied Research Foundation Great Nonprofits review page to read testimonials from people served by this great organization at http://greatnonprofits.org/reviews/mesothelioma-applied-research-foundation-inc.

A complete list of the 2009 GreatNonprofits Cancer Fighters Awards is available on the Cure Meso web site at www.curemeso.org.

SOURCE: myMeso › Meso Foundation named to list of top-rated cancer fighting nonprofits

This annual symposium is “for everybody” affected by mesothelioma. This includes patients, caregivers and family members, and those who have lost a loved one to mesothelioma, as well as advocates and scientific and medical experts. The event is designed to provide education about new research and treatment, to assist meso patients and their families and loved ones with coping skills and a network of support, and provide advocates with the tools to help make an impact in the effort to raise awareness about mesothelioma and the dangers of asbestos exposure, and to raise funds for research.

“I don’t think any community knows more about holding onto hope in the midst of difficult circumstances than mesothelioma patients and their families, ” said MARF executive director Chris Hahn. “But there is still a perception of mesothelioma as an orphan disease. It is overlooked, by the government, by the average person, despite the huge presence of asbestos in our society,” he said.

Mesothelioma is a deadly cancer that affects the lining of the chest wall or, more rarely, the abdomen, and, in very rare instances, the heart. It is caused by exposure to asbestos, and may have a latency period of up to 40 years or more from the time of exposure until symptoms manifest. It is difficult to diagnose, and often is misdiagnosed until too late for effective treatment. Even if diagnosed early, treatment is often difficult, and there is currently no known cure.

The Mesothelioma Applied Reserach Foundation is the largest independent program for mesothelioma reserach and support in the world. It operates a competitive grant program that awards up to 10 grants, or $10 million, each year to research projects most likely to lead to better treatment.

The Foundation is a non-profit organization whose main mission is dedicated to “eradicating the life-ending and vicious effects of mesothelioma.”

MARF needs funding. This is the only organization dedicated to the research and treatment of mesothelioma, but it is facing the same struggles that many other charitable foundations are facing in this tough economy – donations are down, funding is stretched thin. The foundation received 59 grant applications in 2008 – programs that WANT to explore and investigate mesothelioma in search of earlier diagnosis, better treatment methods and, ultimately a cure. But the Foundation was only able to fund five new programs in 2008.

It is estimated that 3,300 new cases of mesothelioma will be diagnosed each year.

Mesothelioma, once considered an industrial disease affecting primarily older men, is being diagnosed in younger and younger people. In 2008, a 3-year-old girl was diagnosed with mesothelioma. Mesothelioma is everybody’s problem. We cannot afford NOT to support mesothelioma research.

For more information about the Mesothelioma Applied Research Foundation and how to make a donation, visit them online.

The Foundation also needs volunteers. There are a number of ways you can help, from advocacy efforts to planning a fund-raising event, to simply helping put out the word about mesothelioma and the effects of asbestos exposure. You can find that information on their web site, too.

This was my first experience at the Symposium, and it was emotionally and intellectually exhausting, and inspiring, and motivating. I met some amazing people who, despite being personally devestated by mesothelioma, are determined to keep fighting. I’m amazed by this great group of folks.

I plan to add many more stories from information presented at the conference, and from the people I met there, in the next several days, so please check back! It’s too much to tell in one post!

SOURCE: myMeso › Mesothelioma community rallies to raise awareness, find a cure

The day began with a briefing from Chris Hahn, the executive director of the Mesothelioma Applied Research Foundation (MARF), with latest numbers about federal funding for meso research (WAY below every other cancer) and information about goals for new legislation. A bill to ban asbestos and fund meso research has been before the Senate for the past SEVEN YEARS. In 2008, S774, more commonly known as the Bruce Vento Ban Asbestos and Prevent Mesothelioma Act, passed the Senate, and in 2008 its companion, HR3339/6903, made it to committee in the House of Representatives, but never made it to the floor. It died in committee when the session ended and we now have to start all over.

Beginning at 11 a.m., I met with aides from Congressman Bobby Bright‘s office, as well as the offices of Senators Richard Shelby and Jeff Sessions. I was disappointed that I was unable to meet with any of the legislators personally, but two of the aides were particularly enthusiastic about our efforts, and the third was amenable, so I have high hopes. Now I will simply begin to pester people until we finally see some legislation! I left copies of our petition in support of these efforts with each of the Congressional offices, so I hope they will listen to our voices!

Tomorrow the sixth annual International Symposium on Malignant Mesothelioma will address the latest topics in mesothelioma research and treatment. 170 people attended the Advocacy Day today, and 230 people will attend the conference tomorrow and Saturday, the largest number yet.

Chris Hahn told us, “The way that we’re going to cure this disease is through community. On Advocacy Day, each person’s voice makes a real difference, and each of you speak for hundreds who could not be here.”

I hope our legislature is listening.

SOURCE: myMeso › Asking for support of mesothelioma funding, asbestos ban

The event is planned to be held at Riverwalk Amphitheater in Downtown Montgomery, Ala., on Saturday, April 4, from 2 p.m.-8 p.m. and will feature all the crawfish and sides you can eat, live music, and activities for children. Tickets are $20 in advance or $25 at the door, with proceeds benefitting the American Cancer Society. (Advance tickets can be purchased through etix.xom)

myMeso‘s sponsor, Beasley Allen Law Firm, is also a sponsor for this event, along with Alfa, Alfa Dental, Morgan Keegan, Jackson Thornton, Dr. Kynard Adams, Price Trailer Sales, Southeast IV, ServisFirst Bank, Harmon Dennis & Bradshaw, Cumulus Broadcastin, Seay Seay & Litchfield, AKD Printing, and AAF-Montgomery.

It is particularly fitting for myMeso to present information about mesothelioma and asbestos awareness during this event, as April 1-7 has been declared Asbestos Awareness Week both in the City of Montgomery and nationally, by U.S. Senate Resolution.

In case of inclement weather, the event will be held at the historic Train Shed, which is located adjacent to the Riverfront and Riverwalk. Come see us, rain or shine!

SOURCE: myMeso › Visit myMeso at American Cancer Society event this weekend

Today I talked to event organizer Bill Thomas, Sr., of Bill Thomas Racing. He said the event was born of necessity, when he discovered in August that he has mesothelioma. Already active with his son, Bill Jr., on the racing circuit, an event tied to the sport seemed a natural fit.

“Racing with my son is a big part of my life,” he said. “I had to retire as a result of having meso, and I felt like I really needed to do something and give back so I came up with this event.”

The Meet & Greet will feature a number of drivers from the Bridgeport Speedway, located in Bridgeport, New Jersey, which bills itself as “The Fastest Dirt Track in the East.” Ms. Motorsports 2009 also will attend the event. A silent auction will help raise money for mesothelioma research, with proceeds going to the Mesothelioma Applied Research Foundation.

The event is set for March 7 and 8 at the Granite Run Mall in Media, Penn.

More information about featured drivers and other events will be available in the next few weeks prior to the event. You can also follow the new Bill Thomas Racing Blog.

If you are interested in donating items for the silent auction, or volunteering in any other way, please contact Bill Thomas at 610-329-0239 or email him at billthomasracing@comcast.net.

SOURCE: myMeso › Racing to cure mesothelioma

The conference will feature prominent physicians, scientists, safety and health directors, as well as survivors, who will present current information about the status of asbestos in the U.S. and worldwide. Discussion will include facts on exposure, asbestos-related diseases and how to prevent them, and where to turn for help.

In addition to the main event on Saturday, there will be an evening reception on Friday, March 27, featuring musician Jordan Zevon, whose father, legendary singer-songwriter Warren Zevon, died of mesothelioma in 2003; and a Unity and Hope Remembrance Brunch on Sunday, March 29.

Five individuals will be honored for their outstanding work in raising awareness about asbestos exposure: U.S. Senator Barbara Boxer for her work to ban asbestos in the U.S.;  Margaret Seminario, AFL/CIO, for her efforts to unite, educate and empower asbestos victims and workers; Dr. Stephen Levin, MD, for his research into the social and medical impact of asbestos; and Pralhad Malvadkar and Raghunath Manwar for their work with victims of asbestos exposure in India and worldwide.

The conference is presented by ADAO, the Barbara Ann Karmanos Cancer Institute and the International Ban Asbestos Secretariat.

For more information or registration, visit ADAO online.

SOURCE: myMeso › Asbestos Awareness Conference set for March 28

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.

SOURCE: myMeso › Remembering Warren Zevon, 1947-2003

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

SOURCE: myMeso › UK’s youngest meso victim passes away

The bill is currently in committee, with the House Committee on Energy and Commerce. Even if your district’s representative is not on this committee, it is important to let him or her know that you support the bill so that they know how to vote. The more voices they hear from their constituency, the better chance they will pay attention when this finally comes to the House floor.

If your representative IS a member of this committee, it is even more important. Many bills “die” in committee, never making it to a vote of the full House or Senate. Please make sure your representative helps get this bill approved in committee and to the floor for its vote.

My representative, Terry Everett (2nd District, Alabama), acknowledged his receipt of my request with a letter, in which he said he will keep my thoughts in mind should the bill make it to the floor, although he is not a member of the Committee on Energy and Commerce.

According to information provided by Everett’s office, H.R. 3339 would require several actions to be taken by the federal government in addressing asbestos and its harmful effects. The Environmental Protection Agency (EPA) would establish a plan to increase awareness of the dangers posed by asbestos-containing materials in homes and workplaces and encourage participation in research and treatment endeavors of asbestos-related disease patients.

The bill also would require the disposal of asbestos-containing materials within two years and the prohibition on the importing, manufacturing, processing or distributing of asbestos-containing materials, except for specific exemptions sought by the Department of Defense and National Aeronautics and Space Administration.

If you are not sure of the representative for your Congressional District, visit the House of Representatives online. You can also find out here if your representative is a member of the House Committee on Energy and Commerce.

Please take the time to do this today. Your one voice is SO important. Let it join thousands of others to finally make a real difference.

SOURCE: myMeso › Asbestos, mesothelioma bill still in committee

Although Coady didn’t suffer from mesothelioma, he was very much aware of the risks posed by asbestos. His work during his time in the Navy very often put him in contact with the substance, he said, and seven of his friends died from mesothelioma since his retirement. In addition, for 10 years following his retirement, Coady worked as president of the Navy Mutual Aid Association, a non-profit veterans benefit group and life insurance service, where he said he saw what he thought was a disproportionate amount of lung cancer deaths.

When he began investigating lung cancer research efforts, Adm. Coady was shocked at the relatively few dollars spent by the Veterans Administration and the U.S. Department of Defense, considering the number of veterans affected by the disease. He also was disappointed at the overall lack of funding for lung cancer research in comparison to spending on other cancers, especially since lung cancer is the leading cancer killer.

He dedicated himself as Chairman of the Board for the Lung Cancer Alliance, fighting the battle for lung cancer awareness and funding under the organization’s motto “No More Excuses. No More Lung Cancer.” He led efforts in lobbying Congress to make lung cancer a national health priority.

Just last week, Coady saw some of the first fruits of his efforts, when Senators Dianne Feinstein (D-CA) and Chuck Hagel (R-NE) introduced legislation in the U.S. Senate creating and authorizing at least $75 million for lung cancer research. This is the first ever multi-agency, comprehensive program targeted at reducing lung cancer mortality.

Perhaps the best memoriam Adm. Coady could receive is for supporters of lung cancer awareness and research to contact their U.S. Senators NOW and ask them to add their support to S. 3187, the Lung Cancer Mortality Reduction Act. Remember him and take action for those to come after him! You can view his obituary here.

Blessings to Adm. Coady’s family at this time of loss.

SOURCE: myMeso › LCA Chairman Coady has died

When her grandfather passed away, 9-year-old Lexi, who lives just outside Allentown, Pennsylvania, channeled her grief into a letter-writing campaign, hoping to raise awareness of mesothelioma. According to an article in The Morning Call, a publication that serves Pennsylvania’s Lehigh Valley, Lexi wrote medical research organizations, political leaders including President George Bush, and even television celebrities like Oprah Winfrey, hoping to spread the word about asbestos danger and mesothelioma.

This year, the Meso Foundation invited Lexi to give the keynote address Friday, June 27, at its International Symposium. The Morning Call quotes Chris Hahn, the foundation’s executive director, as saying, ”We wanted to show the full spectrum of the disease’s effect on families. How inspiring it is that this young gal going into eighth grade has this concern for a much bigger national problem.”

SOURCE: myMeso › Girl honors grandpa at Mesothelioma symposium

Senators Feinstein and Hagel were instrumental in authoring a policy resolution in 2007 to designate lung cancer as a public health priority, which was passed unanimously. The resolution called for research, better treatments, and early detection, with a goal of reducing lung cancer mortality by 50 percent by 2015.

This new bill would establish that comprehensive program under law and authorize funding, according to a release from the Lung Cancer Alliance, which today issued a call to action for its support.

“We have seen great advancements in prostate and breast cancer survival rates and we must commit ourselves to making the same progress with lung cancer,” Sen. Hagel said, noting that lung cancer currently accounts for 28 percent of all cancer deaths in the United States.

Each year, lung cancer kills more people than breast, prostate, colon, kidney, melanoma and liver cancer, combined.

Senator Feinstein said, “It’s time for the federal government to step up its efforts and make fighting lung cancer a national priority.”

Contact your Senator TODAY!

SOURCE: myMeso › Senate introduces lung cancer legislation

I’ve posted about John several times on this site. He was selected by the readers of Golf Digest magazine to participate in this first-ever celebrity foursome event. Diagnosed with Stage IV lung cancer, John used the event as a chance to raise awareness about lung cancer and to inspire those with the diagnosis to keep meeting the challenges of everyday life, and taking advantage of life’s unique opportunities.

This morning, Matt Lauer interviewed John and his brother, Kevin, who caddied for his big brother on the last hole in an emotional show of support. Watch the video at MSNBC.com.

In addition to this video, the Lung Cancer Alliance has the first part of what will be a multi-part documentary about John’s battle against Lung Cancer up on its site. John is a spokesperson for the organization. Watch the first episode at the LCA web site.

John has made it his mission to raise awareness about lung cancer, with the hopes of increasing funding for research and treatment. His campaign gives hope to everyone who battles lung cancer in its many forms, including those fighting mesothelioma, which affects the lining of the lungs. Thank you, John, for your willingness to go that extra mile!

SOURCE: myMeso › Atkinson conquers U.S. Open course

He arrived in California yesterday for a practice round, and will tee off with the celebrities in front of 250 spectators, along with camera crews and journalists, tomorrow. His final round and his score will be televised on June 15 as part of the lead-in to the U.S. Open coverage. The special will feature clips from the 18 holes of golf. John vows to break 100 on the tough course, with a goal of shooting an 89.

You can still sign up to sponsor John as part of his U.S. Open adventure, with funds going to lung cancer research and awareness. He is encouraging people to agree to double their pledge if he makes his goal of breaking 100. Find a sponsor form at the Lung Cancer Alliance web site. GO JOHN!

SOURCE: myMeso › Quick update on Atkinson

Today there was a great article in the Detroit Free Press about Atkinson. The article states that Atkinson considers his “Achilles heel” in the competition to be the fact that he’s never played the tough Torrey Pines U.S. Open course, not that he has lung cancer. The avid golfer was on the links shortly after his diagnosis (he shot a 78) and walked the course after completing four rounds of chemotherapy. His goal for the celebrity tournament is to break 100.

You can also keep an eye out for Atkinson on NBC Nightly News tomorrow, June 5. He is scheduled to appear, barring any unexpected national events that bump him from the slot.

Atkinson will be teamed with celebrities Justin Timberlake, NBC Today Show anchor Matt Lauer, and Dallas Cowboy star Tony Romo in the tournment, which will be aired on NBC Sports at 2 p.m. ET June 15.

How wonderful that Atkinson has this chance in the spotlight to talk about lung cancer, and to promote efforts to increase funding for research and to raise awareness. He also is an official spokesman for the Lung Cancer Alliance.

SOURCE: myMeso › Atkinson in the news again

According to Rob Grayson, director of marketing for the Meso Foundation, the event actually started as a purely scientific event, geared toward researchers and scientists, with technical presentations. However, at the time, there were no informational or educational events like it, and they found that patients, families and caregivers wanted to attend.

“Initially, these people would come and sit in on these high-level presentations by scientists, with very technical presentations. We saw the interest and our meeting has now evolved into more of a patient meeting, the scientists speak in more layman’s terms, and we’ve added programs to reach out to people who are also interested in the community of support and the activism that takes place,” Grayson said.

The advocacy element is a new piece of the symposium, added last year when the meeting coincided with debate in the Senate on the Ban Asbestos in America Act, S. 742, sponsored by Senator Patty Murray (D-WA).

“The day we lobbied, they took an administrative vote, and it passed in the Senate. So we’re going back to Washington this year,” Grayson said.

Advocacy efforts this year will include a rallying cry to the House of Representatives to move quickly to pass the legislation in the House, which bans asbestos and provides research funding for mesothelioma. Last week, the Foundation issued an action alert in support of The Bruce Vento Ban Asbestos and Prevent Mesothelioma Act of 2007 (H.R. 3339), the companion to the Senate bill. The bill includes $10 million for mesothelioma research.

“Normally we’d hold the Symposium in a different city each year, but it’s almost the same timing as last year, with the bill pending, this time in the House, so we’re back to Washington,” Grayson explained.

Those attending the Symposium can register to participate in the advocacy efforts, and the Meso Foundation will arrange for them to meet personally with their congressional delegate, and will provide a training session to help advocates prepare for the meeting.

In addition to lobbying for passage of the House bill, Symposium advocates will request that the Senate’s Defense Appropriations Subcommittee maintain, for the second year, mesothelioma’s eligibility to compete for medical research funding from the Department of Defense. In 2007, the DoD appropriated $50 million and included mesothelioma as a research priority for its Peer Reviewed Medical Research Program, effective in the 2008 budget. The Meso Foundation is working for continuing and increasing funds for mesothelioma research in the 2009 defense appropriations bill.

“There currently is no ban on asbestos, so companies can use it however they see fit. We’ve pretty much stopped mining here, but asbestos is still used in about 3,000 products that you could go out and buy right now. Even if we banned asbestos tomorrow, it probably won’t change the rate of sickness for the next 50 years, due to the latency period of asbestos. That’s why the funding for research is so important,” Grayson says. “Advocacy and the call for a ban on asbestos raises awareness, and raises money for research, which is what we need to deal with the illness itself,” he said.

In addition to advocacy, the Symposium again will feature an educational program, with sessions covering topics including Peritoneal Mesothelioma, Pleural Meso Surgical Options, Emerging Therapies, Optimizing Patient Care, and Scientific Advances in Meso Research. Other educational programs will provide instruction on outreach topics including volunteerism, fundraising, peer support and advocacy, to help those who want to make a difference learn how to be most effective.

A Gala Dinner will honor those people living with meso, and recognize outstanding volunteers and advocates for their hard work and dedication to raising awareness. The dinner will feature a unique guest speaker – Seventh grader Lexi Miletto, the granddaughter of Joseph Miletto, who died in 2005 of peritoneal mesothelioma.

Scholarships for Symposium registration fees, as well as for transportation and accommodations, are still available for patients, family members and caregivers who would like to attend. Contact the Meso Foundation at www.curemeso.org or call 805-563-8400 for details.

The Mesothelioma Foundation was started in 1999, by attorney Roger Worthington. Unfortunately, Grayson says, there was an initial stigma because of his association, with people suspicious the Foundation was attempting to gather clients for his firm, so he removed himself from the Board of Directors and the Foundation was re-established as a non-profit, 501(c)3 organization. Today, with 8 staff members, the organization raises $2.5 million annually and funds more than $1 million in research projects.

“Currently, most of our funding goes to seed money to help researchers who have good ideas for treatment to validate their work, and take it to the NIH to get additional funding for the next step of the research,” Grayson explained. “We hope very soon that we’ll be able to fund clinical trials.”

SOURCE: myMeso › MARF announces Mesothelioma Symposium

John was diagnosed with stage IV lung cancer a little more than a year ago at age 38. He was selected from among 56,000 people who entered a contest sponsored by Golf Digest, the United States Golf Association and NBC Sports to play the U.S. Open Course as part of the celebrity team. You can read more of his inspiring story at Golf Digest online.

In addition to raising awareness, John and the Lung Cancer Alliance would like to use this event as an opportunity to raise funds for lung cancer research. They are encouraging people to make a donation or pledge to LCA in John’s honor. There’s even a great idea for a “game day” event, where lung cancer awareness supporters can collect pledges and host a pledge party with family and friends. John is urging donors to consider doubling their pledge amount if he breaks 100!

Visit the Lung Cancer Alliance U.S. Open pledge page for donation information, pledge party forms, and links for help and more information.

What a GREAT opportunity to raise the profile of lung cancer awareness, and communicate to America – and beyond – what an important issue this is for national health! Watch for John in the coming weeks, as he is scheduled to appear on national news programs like NBC Nightly News, The Today Show and The Tonight Show. I’ll try to update when his appearances are scheduled.

SOURCE: myMeso › Lung cancer advocate Atkinson U.S. Open pledge

My Dad, Bill [Hackett], was a master mechanic and boilermaker from the time he was 25 until he retired on disability at age 61. During this time he dismantled and rebuilt or built boilers to run some of the company’s largest factories and businesses. He started out at Maryland Ship Building and Dry Dock and then went on to become an independent contractor.

Over the years he was exposed to asbestos hundreds of times, not knowing back then that it would be what eventually claimed his life.

From the time he was retired due to this disability until his death in 2004, he suffered tremendously with breathing disorders from mesothelioma. He faced several surgeries and had to have fluid removed from his body numerous times. There were days he could hardly breathe at all, but he kept going. How I will never know.

Because he had been self employed, there was no insurance because he could not afford it. And social security did not pay very much on a monthly basis. Being a decorated WW II veteran, he was entitled to some treatment through the Veterans Administration.

My father was a very independent man and refused to give up or give in to anything that stopped him from doing what he wanted and going where he wanted. And he refused to be a burden on any one, especially his daughters. Until the week he died he continued to serve as Chaplain of the American Legion Post and made arrangements for former veterans’ funerals and assisted their families.

But he never told us about the cancer. He went to all of his chemo appointments and never told us anything. It wasn’t until after his death and the Death Certificate was issued did we know this is what took him. He died alone, 2 weeks before Christmas, in the house where we grew up.

My dad was truly a great man. I believe the reason he never told any of us was because we lost our Mom to cancer when she was 34 and he was 36 and he didn’t want us to have to face losing him to cancer, even though it was a different kind.

Almost 2 years after his death, I found out that I have stage IV lung cancer.

Cancer in any form is life threatening. The more people are aware of the signs and symptoms of cancer, the better off they will be. Annual checkups are vital. Don’t wait until it’s too late. Cancer caught early can be cured. The later the stage, the more intense the treatments and the less chance for remission.

I’d just like to thank Nancy for sharing her Dad’s personal story with us, and for helping to raise awareness and urge for early detection and research. God bless you.

SOURCE: myMeso › A daughter remembers Dad

Atkinson was selected from more than 56,000 entries, voted on by the magazine’s readers. Never a smoker, he was diagnosed with stage IV lung cancer a little more than a year ago at age 38. He hopes to use the golf event as an opportunity to raise awareness for lung cancer funding and research.

In a press release from the Lung Cancer Alliance, which urged its members and supporters to vote for Atkinson, he is quoted as saying, “The game of golf to me is living. I am going out there to enjoy the golf course, to play a great round and to give hope to those who are faced with life threatening illnesses. If I can beat America’s deadliest cancer, then I can definitely break 100 [at Torrey Pines]. It’s going to be a great day, an emotional day, and I can’t wait.”

Lung cancer is the nation’s leading cancer killer, taking more lives than breast, prostate and colon cancers combined.

To enter the contest, Atkinson submitted a 100-word essay describing why he could break 100 at Torrey Pines. Once being chosen as a finalist, he received more than 48,000 of the 117,000 votes cast in the first U.S. Open Contest, conducted by Golf Digest, the United States Golf Association, and NBC Sports. You can watch a video interview with Atkinson and read other features about the foursome at Golf Digest online.

SOURCE: myMeso › Lung cancer survivor to play on U.S. Open course

A couple of days ago I wrote about the closest topic I’ve seen along these lines, which still involved ways to find a silver lining in the struggle. Obviously, it’s a very necessary part of such a diagnosis. But it’s still about hope.

But today I came across an interesting essay, penned by Monica Sanford, a graduate student at the University of Nebraska-Lincoln, that is forcing me to look at another reality of mesothelioma. Its title, “Inevitability of death leads to freer living,” was immediately arresting. The author jumped right in with, “I thought I should write about death.” She went on to share that she has recently lost three people very close to her in fairly rapid succession – a paternal grandmother, a maternal great-grandmother, and her dear friend, Marilyn. Marilyn died of peritoneal mesothelioma at age 47.

As she ponders the very different lives and deaths of these people she loved, Monica wonders at a common thread – all knew they were nearing death, two as a result of illness, the other just sensing her time was nearing an end, even sharing with her great-granddaughter just a month before her death that she had walked with God, who showed her a waiting heaven.

That’s a truly unique aspect of this diagnosis. The knowledge, the clarity, the preparation for death. Everyone knows they will one day die, of course, but that day is always a long way off. Illness of this kind brings it into sharp relief.

In the post I wrote a couple days ago about silver linings, most people said the one thing they could credit their disease for was giving them a sense of the value of their time on earth. That knowing their illness was diagnosed as terminal gave them often times a will to fight harder and stay longer, because they saw with new eyes all the things they really wanted before they would be ready to go.

There’s a saying, “live each day as if it was your last.” But in the everyday hustle and bustle, it’s so hard to keep that in mind.

Monica’s essay reflects on faith, traditional Christian faith like that of her great grandmother, as well as her own, different, Buddhist perspective, and observes the different ways that her family members mourn, or celebrate, or deny at a loved one’s passing.

In the end, she finds that, for her, “The one thing I have that helps me cope with death in my life is not faith or family or hope. It is acceptance. Death is. Just like life is. Neither is good nor bad – they just are.”

But still, it hurts to let go.

SOURCE: myMeso › The inevitability of death

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.

SOURCE: myMeso › Is there a bright side of mesothelioma?

Like Charlene, who shared her story with us recently, Debbie is a young woman – only 49 years old. It is suspected that she contracted mesothelioma through contact with asbestos her father brought home on his clothing. She says he was a lagger with the Ministry of Defense and would often scrape asbestos from pipes.

Reading Debbie’s blog – she posts regular diary entries – is by turn heartbreaking and funny (she has named her tumor “Theo,” and tells him not to grow), and inspiring, and can make you really angry, along with her, as she rails against her illness and fights for awareness.

She mixes stories about her treatments with accounts of daily family life, vacations with her kids, changes at work, experiments with her diet, and her growing role as an advocate for mesothelioma in the UK.

Debbie’s site is a great way to learn about the real people behind mesothelioma. Visit and get to know her. I’m glad I did!

SOURCE: myMeso › Debbie in UK tackles Mesothelioma diagnosis

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!

SOURCE: myMeso › Meso Map puts a human face on mesothelioma

About six years after his death, Garmon revisits some of the cancer centers where Larry was treated, and talks to doctors, patients and family members of those suffering from a variety of cancers – pancreatic, lung, breast, prostate.

The documentary explores the complicated maze of cancer treatment, which is so widely varied partly due to the many variations cancer takes within the human body as it mutates genes. It also looks at how cancer affects people’s relationships, with the person battling cancer oftentimes also feeling the pressure to “beat it,” to “win” over cancer, a feeling of pressure that it’s somehow up to them to get well.

Garmon touches on the issue – why are people still dying of cancer? She shows news footage of President Richard Nixon declaring war on cancer. And here we are still fighting.

Larry D’Onofrio built his family’s home, and worked on other construction projects. It is suspected he contracted mesothelioma as a result of asbestos exposure in that work. Garmon wonders, “why him?” when others who worked alongside him are healthy today.

I write about mesothelioma every day because it’s my job. But I’m touched by the people I meet who share their stories. I’m amazed by the patients who agree to clinical trials even when they understand that there probably won’t be a miracle cure for them, but because they understand that by doing so they might help someone after them.

And I’m touched by the people affected by mesothelioma who work for awareness. To reach out from their place of pain to try to bring the issue to light – that’s strength almost unimaginable. Thank you, Linda, for having the strength to share your story, the story of you and Larry and the hardest battle you ever had to fight.

PBS will air the documentary several more times in the coming weeks. If you missed it last night, I urge you to check your local listings and make a point to see it. It’s powerful, and it’s a message more people need to hear.

SOURCE: myMeso › The Truth About Cancer

CBS licenses the toy, which is based on its popular CSI: Crime Scene Investigation ™ television program. Planet Toys is the manufacturer.

According to a Public Justice press release, the federal complaint, filed in U.S. District Court in Los Angeles, alleges that CBS and Planet Toys were negligent in their quality control measures and that they promoted the CSI toys although they contained a hazardous and potentially lethal carcinogen.

In November 2007, the Asbestos Disease Awareness Organization (ADAO) released results of a study of a number of products, including the CSI: Crime Scene Investigation ™ Fingerprint Examination Kit. It was found that the CSI toy’s fingerprinting powder contained asbestos. The fingerprinting powder containing asbestos also can be found in related CSI toy kits, the CSI: Crime Scene Investigation ™ Field Kit and the CSI: Crime Scene Investigation ™ Forensic Lab Kit.

The story was covered in the news media, including CNN, in December 2007. On Feb. 21 CNN did a follow-up report and noted that the Planet Toys had not yet issued a recall.

Public Justice reports that in a meeting including representatives from ADAO, CBS and Planet toys in December 2007, CBS and Planet Toys agreed to remove some of the toys from store shelves, and to work with Public Justice to further test the toys. However, Public Justice reports that months later, there has been no joint testing, Planet Toys continues to deny the products contain asbestos, and there has been no recall.

The Public Justice press release quotes Linda Reinstein, executive director of ADAO, who says, “Our pleas for the companies to do the right thing have fallen on deaf ears. It is unacceptable and unnecessary to have asbestos in toys, and especially in powder form, its most dangerous state. Most Americans falsely believe asbestos has been banned, but our recent product testing results prove asbestos remains a threat to public health.”

The federal complaint is a class action suit that asks the defendants to “provide refunds to consumers, pay for asbestos testing of toys that have been opened, and pay for appropriate medical treatment for consumers who have been exposed to asbestos,” according to the release. The state lawsuit “seeks civil penalties for violations of the law, in addition to injunctive relief.

Read the full text of the Public Justice press release here. This site also contains links to the federal and California state complaints.

Public Justice is a membership-supported law firm with more than 3,500 members, comprised of trial lawyers, other attorneys, and public interest advocates worldwide.

ADAO is a nonprofit organization dedicated to the mission of “asbestos awareness, education, advocacy, prevention, support and a cure.”

SOURCE: myMeso › Asbestos in CSI toy sparks lawsuits

While undergoing chemotherapy to treat her mesothelioma, Charlene Kaforey had time to explore her options. As a Stage III patient, she was worried about her chances for quality of life or even long-term survival if she underwent surgery.

During this time, she found information about the ITL Alternative Cancer Treatment Clinic, located in Freeport, Grand Bahama Island. After talking to patients who reported success, she decided to try this unusual route for her own treatment.

She made her first visit to the clinic January 7, 2008. Mesothelioma patients like Charlene initially complete an 8-week course of treatment, which includes daily blood tests, several injections daily of a serum designed to boost the body’s immune system so that it can fight the cancer, and intravenous vitamin C plus two shots of cancer vaccines, twice per week, she says.

The blood work is to monitor the body for responsiveness to the treatment in order to fine tune it to the patient and set up an ongoing course that is administered by the patients themselves after leaving the clinic, Charlene says. Treatment at ITL is a process that lasts for the rest of your life, she explains.

Now back home in New York, she administers her own shots eight to 12 times per day. She also is continuing the intravenous vitamin C at home, although she says that is optional. She also needed to complete 5 of the 12 weeks of the cancer vaccines at home. Patients return to the clinic every four months for two weeks at a time for re-evaluation and adjustments to their serum regimen. Charlene is scheduled to return in June.

“What they tell you at ITL is that it will not necessarily make the cancer you have go away, but will hopefully prevent it from spreading any further,” Charlene said. “So if they can do that, and give me six years, that would be wonderful. That would be six quality years instead of two miserable years.”

Patients considering ITL need to know that because the facility is considered alternative medicine, it is not accredited by the American Medical Association or other governing boards of that type, and some insurance companies will not cover the cost of treatments.

ITL requires payment at time of services, which, according to the clinic’s web site, for Immuno Augmentive Therapy (IAT) of the kind Charlene receives, run around $7,500 for the first four weeks and about $700 per week thereafter. That cost does not include the vitamin C IV’s or the vaccines. Patients also must cover the costs to travel to the facility, and for accommodations during their eight weeks of treatment.

“Everyone has had different experiences [with insurance],” Charlene said. “I submitted my bills to my insurance company and I’ll just see what they do. Some people get partial payment, some insurance pays nothing,” she says. “But what’s your life worth to you?”

In addition to the financial challenge, there also is the issue of travel and time away from family. Charlene was lucky; she had different family members with her throughout her 8-week stay. They became as much a part of daily clinic life as she did.

“Seeking treatment at the clinic definitely involves family decisions. The cost is a major consideration and so is the time away from home. While the cost is much less than the approximately $200,000 price tag involved with the surgery/chemo/radiation regime, insurance will pay for those debilitating treatments. Plus, knowing you may have limited time remaining, do you want to leave family and friends for 2 months,” Charlene said. “It is a really individual decision. You have to look realistically at what your own choices are and what you need to do for yourself and your family. We viewed this as an investment of time and financial resources for the long term. Two months away is worth it if I get 4-6 more years with my family.”

A big part of Charlene’s experience at ITL was meeting other mesothelioma patients, as well as people with other types of cancer, and sharing stories. Her last week at the clinic, she said there were seven mesothelioma patients there, all around the same age – mostly women in their 40s and 50s, with whom she felt a real connection.

“You talk to real-life people who are there, who are surviving and living quality lives after their doctors had told them there was no hope. The stories are so different and so amazing, and yet you share so much because you’re all going through this. It gives you hope to meet patients who have survived 28, 20 ,12 or even 4 years after being given a death sentence,” Charlene said.

That connection with other patients has led Charlene to explore forming an outreach and support group where she lives, in Rochester, New York, where she plans to work for fund raising for a cure and to raise awareness of mesothelioma.

Alternative medicine is controversial. Its results often do not have a long history of documentation. People who choose this route understand that they are stepping out into largely uncharted waters.

Charlene is happy to share her story with others who are facing mesothelioma in their own lives, either as a patient or as a family member of someone with meso.

If you would like to talk with Charlene, please email wendi@mymeso.org and I will be happy to forward your information to her.

SOURCE: myMeso › Living with Meso – Charlene’s story, Part 4

Perhaps one of the most interesting presentations at the recent Asbestos Awareness Day Conference in Detroit, at least to me, was that of Rebecca J. W. Cline, PhD, a senior scientist in Communication and Behavioral Oncology for the Karmanos Cancer Institute and Associate Professor of Family Medicine at Wayne State University.

Dr. Cline recently conducted a community-based focus group investigation in Libby, Montana, on psychosocial issues related to vermiculite/asbestos exposure. She also is currently leading a related population-based survey investigating that community.

She describes asbestos related disease as a “slow-motion technological disaster,” in which community and social responses have a great deal to do with how people fare, mentally and socially.

The basic definition of a technological disaster is a “catastrophic event caused by humans that results in the toxic contamination of the environment.” This includes asbestos contamination, as in Libby, resulting from decades of vermiculite mining, hence “slow moving,” as well as things like oil spills, which can devastate an area fairly quickly.

Libby is the epicenter of what Dr. Cline calls “the worst environmental disaster in the United States,” with multiple generations affected. She examined in particular how stigma associated with asbestos disease can have an impact on what people do.

Dr. Cline said there are two possible responses to technological disaster – the emergence of an altruistic community, or a community in conflict. The latter, she said, is common where there is human culpability, and it was the result in Libby.

The Libby study, conducted in 2006, included focus groups and some individual interviews with adults who lived and worked in the Libby area for at least the past five years. Interview subjects included people with connections to the mine, people with no connections to the mine, people affected by asbestos disease personally, people with family affected by the disease, and people with no disease in family or person.

She found that people fell into three categories – early believers, those who immediately understood the connection of vermiculite to what was happening to the town; late believers, those who initially resisted the idea that the mine made people sick; and those in denial or conflicted, who still did not or would not believe the mine was responsible.

Dr. Cline found that there was a great deal of stigma attached to asbestos-related disease, which created a barrier to social support. People with mesothelioma or other asbestos-related diseases were often afraid to talk about it, she said, even to close friends.

She said that the stigma came from a variety of sources. Conflicts included concerns about the economic disaster that the loss of the mine signified for the town, for which it was the main industry and source of jobs and security. People feared that if the mine were blamed for illness and deaths in the community there would be a decline in property values, loss of jobs, and a lost way of life.

As a part or a result of that, conflict also grew from a concern about what was the truth. There was a suspicion among neighbors that people claiming illnesses were phony, money-grubbing, greedy or opportunistic, making up illnesses to get a part of a financial settlement from the mining company.

People suffering from asbestos disease personally or within their family were afraid to talk about it out of fear that they would be ostracized and shunned by their neighbors and their community.

Dr. Cline told the story of two women, best friends for years, who bumped into each other in the Center for Asbestos Related Disease, which had been established in Libby to test, diagnose and treat patients. “What are you doing here?” one whispered. “I have the asbestos,” the other whispered back. “Me too,” came the whispered response. Best friends, but afraid at the core to admit to having asbestos disease.

On top of this, people who are ill or whose family members are ill fear the health and medical disaster itself, which was already upon them. They said they felt a lack of hope for survival, not just for themselves or their immediate family, but for generations.

Some of those in denial, or conflicted, still refuse to be tested for asbestos disease. They don’t want to know, Dr. Cline says, or they do not believe the mine could harm them.

There appears to be one universal in Libby.

“Across the groups, people felt like the community as a whole had been stigmatized, that everyone ‘knew about Libby’ and it had been given a bad reputation,” Dr. Cline said.

In addition to the physical toll, the mental toll of asbestos disease in Libby has been incalculable, she said.

SOURCE: myMeso › The mental toll of mesothelioma

News24.com reported, in a story compiled by the South African Press Association, that trade union Solidarity expressed its support for the ban, and called on the government to also amend its asbestos dumping requirements or find alternative options.

The union also said that South Africa “could have followed the example of the rest of the western world and enforced this prohibition years ago,” according to the news story.

A related story published by TransWorldNews on Monday, April 7, stated that “in newly published documents by the Department of Environmental Affairs and Tourism [in South Africa], specific regulations have been introduced upon the use, manufacturing, import, and export of asbestos and asbestos containing materials.”

The report says that while some asbestos containing products, such as existing concrete shingles and ceilings, will not be immediately eradicated, the regulations call for the “phasing out” of such materials.

While the move toward this asbestos ban in South Africa is a positive step, it may be too little too late, according to Robert Jones, an environmental researcher with Rhodes University, who recently completed a study of several areas closest to now-closed asbestos mining sites in South Africa. Jones was a speaker at the recent Asbestos Awareness Day Conference in Detroit, Mich.

“South Africa is blessed with mineral resources – gold, diamonds, platinum,” he said. “And also cursed with mineral resources – asbestos.”

Between 1893-2001, South Africa mined all three types of commercial asbestos and was among the world’s leaders in asbestos mining and use.

Jones surveyed several communities within 2-5 km of the country’s largest asbestos mining sites, encompassing an area of approximately 7,000 square kilometers at each site. Assessment teams were made up of local people in the affected communities, and they targeted areas most suspect for contamination. Teams physically sampled soil and building materials from the locations.

While acknowledging that samples all came from high-risk areas where contamination was expected, the results were still staggering.

75-85% of homes surveyed are contaminated.

47-59% of schools are contaminated

53% of roads are contaminated

In many cases, the soil is blue with visible asbestos dust and clumps of asbestos fibers and minerals. Sports fields and schools are built on contaminated ground, and people build homes with mud bricks made from asbestos-contaminated soil. Some of the population has 24/7 exposure to contaminated soil. The ground is dry, and homeowners sweep bare ground into clouds of dust.

Jones likens the potential future of some of these areas of South Africa to “Libby (Montana) times forty.”

SOURCE: myMeso › South Africa is ‘Libby x 40′

After being diagnosed with mesothelioma at age 48, and exploring traditional options and undergoing four rounds of chemotherapy, Charlene Kaforey was looking for alternatives. Her physicians had earlier recommended a pleurectomy or pneumonectomy, which would remove part or all of the affected lung. That option was still on the table following chemo.

But after doing extensive research, Charlene was concerned about quality of life after such a procedure. Diagnosed as Stage III, she knew that only 25 percent of patients at her status survive 20 months, with less than 10 percent surviving 5 years. Both surgeries involve significant mortality rates and require 6-9 months recovery time.

“Currently, I don’t have a lot of symptoms,” she says. “I thought, why, if I feel good, do I want to end that by having the surgery and possibly never feeling good again?

“When I was at the hospital, I looked around the waiting room and saw everyone in wheelchairs, or hooked up to oxygen. I actually started crying. People don’t look good. They don’t look healthy, and they’re struggling. I thought, is this what’s going to happen to me? I didn’t feel a lot of hope.”

During her chemotherapy, from October-December 2007, Charlene researched mesothelioma and its treatments relentlessly. That was when she discovered the ITL Alternative Cancer Treatment Clinic, located in Freeport, Grand Bahama Island.

According to its web site, ITL Cancer Clinic was founded in 2003 and is directed by Dr. John Clement. ITL Cancer Clinic is the operating company for the Immunology Research Centre Ltd., a not-for-profit corporation of the Commonweal of the Bahamas, licensed to treat patients diagnosed with cancer. The Immunology Research Centre was founded in 1977 by Dr. Lawrence Burton, the developer of Immuno-Augmentive Therapy (IAT). The clinic treats all kinds of cancer, including mesothelioma.

Charlene’s daughter, working on a college project about promoting mesothelioma awareness inspired by her mother’s illness, discovered a web site with a link to the clinic. Charlene contacted the organization on whose site she found the link, to find out if they knew anyone who had been treated there. Initially, the answer was no. But two weeks later, they called her back and put her in touch with an ITL patient.

“I talked to her and she’s 6 years out,” Charlene said, which means the patient has survived six years after diagnosis. “She has it in both lungs and here she is, traveling and living life.”

Encourged, Charlene contacted the ITL Clinic directly for more information. Staff reviewed her medical history to see if she would be a candidate for treatment at ITL, and put her in touch with other mesothelioma patients being treated there.

“I’m skeptical by nature,” Charlene says. “It’s so out of the ordinary, but when I was talking to people out 6 years and feeling good compared to others who did more traditional treatments, some of whom didn’t make it very long, or life was hard, and it seemed like a good option for me.”

Friends and family initially resisted the idea, feeling that she should take the more traditional path, including surgery.

“People thought I was crazy at first. They had read all the literature [from traditional treatment facilities] and felt that I needed to do the surgery,” Charlene says. “Do I know for certain this will work? No. But I just don’t think the statistics support my having a good quality of life or a good chance of survival with surgery and traditional methods. So I’m going to do it.”

Next: The ITL Experience

SOURCE: myMeso › Living with Meso – Charlene’s story, Part 3

The article starts from the viewpoint of economics, exploring the rising costs of asbestos insurance claims, but goes on to talk with several people who were featured speakers at the recent Asbestos Awareness Day Conference, held in Detroit, touching on the human issue and the projected cost in human life.

There is some valuable statistical information in this article.

Take a look – it’s worth reading!

It’s a real shame that the issue of asbestos awareness doesn’t seem to be getting much attention in the media outside of Michigan, where the conference was held. I’d like to see some national news outlets pick up on this!

SOURCE: myMeso › Excellent story on asbestos cost, impact

SOURCE: myMeso › Canada blocks asbestos ban

The conference was held at the Barbara Ann Karmanos Cancer Institute, which is the location of the National Center for Vermiculite and Asbestos-Related Cancers, co-directed by Dr. Michael Harbut and Dr. John Ruckdeschel, both of whom spoke at the ADAO conference.

While it might seem obvious, Dr. Harbut said, a key to diagnosing and treating asbestos disease is an emphasis on a medical approach.

Dr. Harbut explained that the Karmanos program “approaches asbestos disease from a purely medical standpoint, which includes taking into account any risk factors, employing state-of-the-art scanning equipment and a multidisciplinary, research-driven approach to early detection and treatment. This includes consideration of non-mailgnant or sub-clinical asbestos disease.

“Diseases that are ‘not hurting you yet,’” he said.

Focus areas at the National Center for Vermiculite and Asbestos-Related Cancers include the establishment of a schema for high resolution CT (HRCT) classification, measurement of pleural plaque volume, examination of psycho-social aspects of asbestos disease, testing new treatments including osteopontin and SMRP, and compiling a comprehensive database of disease, diagnosis and treatment.

The Center encourages anyone at risk from asbestos exposure to seek testing for early detection.

Dr. Ruckdeschel said barriers to successful asbestos disease treatment include a sense of nihilism in the medical community, the idea of giving up on the patient when mesothelioma is diagnosed due to its traditionally high mortality rate. There is a sense of providing only “quick fix” supportive care, he said.

Other challenges include a lack of treatment centers with a documented track record, lack of large standardized treatment trials, and a paucity of research investment, Dr. Ruckdeschel said.

The Center predicts an epidemic of vermiculite and asbestos-related cancers in the near future, as the latency period of asbestos disease exposure is reached, and as asbestos exposure spreads around the world, particularly in third-world countries.

“One life lost to asbestos disease is tragic. Hundreds of thousands of lives lost is unconscionable,” Dr. Ruckdeschel said.

For more information, visit the Karmanos Cancer Institute online or call 1-800-KARMANOS.

SOURCE: myMeso › Karmanos tackles looming asbestos epidemic

Today, on Asbestos Awareness Day, I came across this blog post written by a student at Oregon State, about the death of a beloved uncle. He died just a little over eight months after being diagnosed with mesothelioma. He was only 58 years old.

Take a moment to read this story, and heed the author’s plea to spread the word about the dangers of asbestos – Benjamin’s Musings.

SOURCE: myMeso › Meso breaks another heart

ADAO secured a senate resolution declaring April 1 as Asbestos Awareness Day, and April 1-7 as Abestos Awareness Week. You can visit the ADAO online.

Today also is Asbestos Awareness Day in Montgomery, Alabama, as designated by mayoral proclamation, signed by Montgomery Mayor Bobby Bright. The local effort strives to bring the message of asbestos awareness and education to the community and to bring attention to the national effort to ban asbestos.

Asbestos exposure can lead to asbestos-related disease including asbestosis, lung cancer and malignant mesothelioma. Many symptoms of mesothelioma and other asbestos diseases do not appear for 20 or more years, making it difficult to diagnose early. For this reason, the cancer is often diagnosed in late stages, making it too often deadly.

In the U.S. current statistics show 2,000-3,000 people are diagnosed with malignant pleural mesothelioma each year, and 10,000 Americans or more die each year from all asbestos-related disease.

SOURCE: myMeso › Today is Asbestos Awareness Day

Following is a story that appeared in the Detroit Free Press about the remembrance service, and the mission of asbestos awareness. I will post some stories and images from the conference this week, but I wanted to share this excellent report.

By Amber Hunt, Free Press Staff Writer

For Andrew Manuel, it began with back pain.

But the seemingly benign symptom turned out to be something far more sinister, and within two years, the married father of three shed 65 pounds, underwent surgery to have a lung removed and endured chemotherapy and radiation to no avail.

At 42, he was dead. The killer: mesothelioma, a cancer linked to asbestos.

“When I heard the diagnosis, I said, ‘Meso-what?’ ” said Manuel’s wife, Latanyta Manuel, 45, on Sunday. “All I heard was ‘lung cancer,’ and I said, ‘No, that’s not possible.’ My husband never smoked or drank, but they said this cancer is about asbestos.”

On Sunday, a group of people affected by the deadly disease, which they refer to as “meso” for simplicity’s sake, gathered at the Marriott in downtown Detroit’s Renaissance Center for a remembrance brunch.

The event was sponsored by California-based Asbestos Disease Awareness Organization and the Karmanos Cancer Institute in Michigan.

Some, such as Manuel, had lost loved ones. Others have been diagnosed with the deadly disease themselves.

They gather annually, they said, to support each other and to spread the word about asbestos-related diseases, including lung cancer and asbestosis.

Asbestos is a fiber that for decades was routinely used for fireproofing and insulation.

While the U.S. government has limited its use, asbestos still can be found in many products, including some stuccos, vinyl flooring and even theater curtains, according to the Asbestos Resource Center.

“Asbestos is still being imported. It’s still being put in products,” said Michelle Zigielbaum, whose husband, Paul, has been diagnosed with peritoneal mesothelioma.

By the time he was diagnosed, his stomach was so full of fluid and tumors that “I looked like a pregnant woman,” Paul Zigielbaum said.

The Asbestos Disease Awareness Organization recently conducted a study that tested 250 products off store shelves for asbestos content. A first lab found that 18 of the products contained asbestos.

A second lab confirmed that eight of the products had asbestos, while a third confirmed that five products — including a child’s toy — contained asbestos.

Those gathered Sunday said they and their loved ones got sick in different ways.

Andrew Manuel’s father worked in a pipeline, bringing asbestos back into the home. Paul Zigielbaum said he believes he was exposed secondhand, too, but said he also believes that contact with everyday products contributed.

All blamed aggressive asbestos lobbyists as the reason the United States hasn’t banned the substance altogether.

“It’s disturbing to see how companies and politicians try to cover it up,” said Dwayne Manuel, Andrew Manuel’s 26-year-old son. “This is a preventable disease.”

Latanyta Manuel said she just wants to honor her husband’s wishes and spread awareness about the disease.

“Once it erupts, it just kind of takes over,” she said. “People need to know.”

Contact AMBER HUNT at 586-826-7267 or alhunt@freepress.com.

SOURCE: myMeso › Conference educates about asbestos

It is hoped that the local proclamation will bring attention to national efforts to completely ban asbestos in the U.S. and raise awareness about the dangers that still exist.

In Montgomery, Asbestos Awareness Day strives to educate the public about the ongoing dangers of asbestos exposure, which can lead to asbestos-related disease such as asbestosis, lung cancer, and malignant mesothelioma.

Pictured is Wendi Lewis, Conversation Architect for Beasley Allen, receiving the proclamation from Mayor Bright.

SOURCE: myMeso › Mayor declares Asbestos Awareness Day

In addition to its lobbying efforts, the other main focus of the Lung Cancer Alliance is to provide care and counseling to patients diagnosed with lung cancer. A big part of this is to help patients find clinical trials for new medications.

“Right now, there are only about three, maybe four, drugs that are approved for treating lung cancer,” explains Rear Admiral Phil Coady, U.S. Navy (Ret.), chairman of the board for the LCA. “Once you get past that, you’re on your own and there’s nothing else.”

The next step can be participation in a clinical trial testing new cancer-fighting drugs. The LCA has a screening process to help patients find a trial that fits their situation.

“It’s bewildering trying to figure out what’s a good trial for you and what you’re eligible for,” Coady said. “We ask patients questions about their progression, what they are willing to do, where they live, lots of other questions, and then we can process that information against a database of ongoing clinical trials and match a patient to where they are a good fit. It gives them another avenue to try something else, to keep hoping.”

They also provide patient support services like the Phone Buddy program, a peer-to-peer support network for people with lung cancer and their family members and caregivers, as well as an online forum where lung cancer survivors and their families can network with other people who are struggling with the illness.

Finally, LCA strives simply to raise awareness about lung cancer, and to promote early screening.

“Our goal is to save lives. Simple as that,” Coady said.

For more information about LCA and its programs, visit www.lungcanceralliance.org or call the Lung Cancer Information Line at 800-298-2436. Tap into the LCA Survivors Community online at http://lungcancer.clinicahealth.com. Call the Phone Buddy program at 800-298-2436.

SOURCE: myMeso › LCA lobbies – Part 3 – Personal Assistance

Rear Admiral Phil Coady, U.S. Navy (Ret.), now serving as chairman of the board for the Lung Cancer Alliance, was never a smoker, and was surprised at the reactions of friends, family and co-workers when he told them he had lung cancer. They said he was brave for sharing the true nature of his illness.

“With lung cancer, there’s a real stigma attached to it. People don’t mention it in obituaries. There’s this perception that people with lung cancer brought it on themselves. I was never a smoker. Twenty percent of the women with lung cancer who are coming down with it every year have never been smokers.”

The stigma tends to inhibit discussion of lung cancer, Coady says, which impacts funding for research. If nobody is talking about it, the awareness just isn’t there, and it is treated as out of sight, out of mind. Meanwhile, lung cancer kills more people each year than breast, colon and prostate cancer combined. Ninety-two percent of people diagnosed with lung cancer die from the disease.

“I believe intently that the solution to lung cancer is making people aware that it is a public health problem and developing a public policy program. National priorities have not been adjusted to make this a national priority,” Coady says. “LCA’s first mission is to get before Congress to make this a national priority. Then, we go back to Congress and put some dollars behind it.

“The numbers we have all stated about the number of people who have died from lung cancer are compelling. It’s a half a million people every three years. There is no other cancer that comes close. But there’s almost no public funding.”

One current lobbying effort involves approaching state legislatures to gather support for an initiative that would donate 1 percent of tobacco tax revenue or tobacco liability settlements collected by state government for lung cancer research.

“Right now we’re using that money to build roads, schools, other infrastructure, but nothing to do with the cancer,” Coady said.

Next: Personal help for those with lung cancer

SOURCE: myMeso › LCA lobbies – Part 2 – the stigma of lung cancer

Chairman Coady’s story

Leading the charge for the organization is Rear Admiral Phil Coady, U.S. Navy (Ret.), who serves as chairman of the board of directors. A career Navy officer, Coady was diagnosed with non-small cell lung cancer in early 2005. He underwent surgery to remove the affected lobe and went through chemotherapy. In late 2005, the cancer recurred with metasteses to his bones. Chemotherapy has been successful in slowing the advance of the cancer for the past two years, and Coady is fighting for other lung cancer survivors.

Although Coady doesn’t suffer from mesothelioma, he is very much aware of the risks posed by asbestos. His work during his time in the Navy very often put him in contact with the substance, he said, and seven of his friends died from mesothelioma since his retirement.

In addition, for 10 years following his retirement, Coady worked as president of the Navy Mutual Aid Association, a non-profit veterans benefit group and life insurance service, where he saw what he thought was a disproportionate amount of lung cancer deaths.

He notes that shipboard service in the Navy, particularly during the years he served, routinely involved exposure to asbestos, second hand smoke and other possible carcinogens. Veterans also were at risk from exposure to chemicals such as Agent Orange, sulfur mustard gas, and other battlefield combustion products.

“I had heavy exposure to asbestos in the Navy,” he says. “I spent a lot of my time as an engineer on ships. In the 1960s there were no precautions about asbestos that I recall at all. We tore out asbestos with hand tools. A dust mask might have been our most aggressive protection.”

With a family history of pulmonary fibrosis, a chronic scarring of the lungs, Coady always had his asbestos exposure in the back of his mind in relation to his health, and had regular CT scans to check for the disease, which he did eventually develop as a result of his exposure. Then, in 2005, the scans also showed lung cancer.

“Ironically, it was really my concern about asbestos that probably saved my life,” Coady said, crediting his regular screenings with catching his cancer early.

Next: The stigma of lung cancer

SOURCE: myMeso › LCA lobbies for lung cancer funding, awareness

SOURCE: myMeso › Mission Statement

This was also reported by the Asbestos Disease Awareness Organization, in a report released Nov. 28, 2007, about the presence of asbestos in everyday products.

Watch the video, which also features a 35-year-old woman who has mesothelioma, which she contracted from breathing asbestos fibers brought home on her father’s work clothes.

SOURCE: myMeso › CSI: Asbestos

Think about it. How can we get more attention on the needs of people suffering from asbestos related disease, on a larger scale? What would you like to see? How can we get a grassroots campaign up and running? I think it’s really going to take one person interested and concerned talking to another. Literally spreading the word.Let’s get busy and tell America that asbestos is not a thing of the past, that it is a very real danger today and for their future!

SOURCE: myMeso › What do YOU want to tell America?

On October 6th, 2004, Senator Harry Reid introduced Senate Asbestos Awareness Day Resolution (S. Res. 448). This resolution, proposed by the Asbestos Disease Awareness Organization (ADAO), designates April 1st as National Asbestos Awareness Day. Then, in 2007, Senate Resolution 108 designated the first week of April as National Asbestos Awareness Week.

In conjunction with Asbestos Awareness Day, the ADAO is having a conference March 28-29, with a remembrance service on Sunday, March 30. These events will be held in Detroit, MI, with the main conference events on Saturday at the Karmanos Cancer Institute. I am planning to attend the conference and hope to put up a lot of posts about the events and speakers.

In addition to the main conference activities, Jordan Zevon, son of acclaimed singer-songwriter Warren Zevon, who passed away from Mesothelioma in 2003, will be at the conference for a meet-and-greet Friday night and will speak on Saturday. He is the National Spokesperson for ADAO. Also, ADAO will present a number of awards Saturday to honor the people who have made a difference in Asbestos Disease Awareness.

For more information, or to register to attend the conference (deadline is TOMORROW, Feb. 28!) visit ADAO online.

SOURCE: myMeso › Asbestos Awareness Day April 1

Ten thousand Americans die each year – a rate approaching 30 deaths per day – from diseases caused by asbestos, according to a detailed analysis of government mortality records and epidemiological studies by the EWG Action Fund. Asbestos kills thousands more people than skin cancer each year, and nearly the number that are slain in assults with firearms, they found.

Another scary statistic shows that mesothelioma was not tracked as a cause of death by federal health officials until 1999. Prior to that time, the National Center for Health Statistics (NCHS) and National Institute for Occupational Safety and Health (NIOSH) tried to estimate the number of deaths due to malignant mesothelioma by using surrogate measures with tumors related to mesotheliomas.

The report states that scientists now know that estimates of mesothelioma based on surrogate indicators dramatically underestimated the number of deaths due to mesothelioma. The EWG Action Fund found the first year that federal officials began tracking mesothelioma as a distinct cause of death, official mortality more than doubled! In 1998, the last year surrogate indicators were used, the estimated number of mesothelioma deaths was 935. One year later, when malignant mesothelioma was specifically coded as a cause of death, the number of deaths was 2,343.

The EWG also estimates that we may not see the peak in U.S. asbestos disease for another 10 years or more.There was widespread use of asbestos in the United States by the mid-1970s. The EWG estimates that more than 3,000 consumer and industrial products on the market at that time contained asbestos; asbestos product factories were polluting nearby neighborhoods; asbestos workers were heavily exposed on the job and were bringing home substantial amounts of asbestos dust to their wives and children; and asbestos was commonly used in public buildings and workplaces for soundproofing, fireproofing, and insulation.

Awareness of the dangers of asbestos to health didn’t develop until the beginning of the 1980s, and safety measures weren’t implemented across the board even then. Asbestos is still not totally banned today. The EWG points out that it remains heavily used in brake shoes and other products, and millions of people are exposed at home or in their workplace by the monumental quantities of asbestos that remain in the built environment — the attic insulation in 30 million American homes, for instance — following decades of heavy use.Asbestos diseases have a 20 to 50 year latency period, meaning that a substantial portion of individuals exposed in the 1960s and 1970s are just now showing up as disease or mortality statistics.

The magnitude of this public health crisis raises profound questions about the wisdom and fairness of doing anything to cut off any avenue that might provide assistance or protection to the tens of thousands of Americans who become sick and die from asbestos exposure.For more information, visit http://www.reports.ewg.org or http://www.ewg.org.

SOURCE: myMeso › Asbestos: A Looming Crisis in Public Health

1. Sign the petition. The ADAO (Asbestos Disease Awareness Organization) has created a petition asking Congress to totally ban asbestos in industrial materials, consumer products and toys. Visit this website to add your name to this petition: http://www.gopetition.com/petitions/totally-ban-asbestos.html
2. Contact your Representative. Visit http://www.house.gov/ to find your Representative and write him or her to ask for careful consideration of this issue in the hearing, and in support of the Ban Asbestos in America Act of 2007.

On March 1, 2007, Senator Patty Murray (D-WA) introduced S. 742: Ban Asbestos in America Act of 2007 to the 110^th Congress. This is an act to amend the Toxic Substances Control Act to reduce the health risks posed by asbestos-containing materials and products having asbestos-containing material, and for other purposes. The bill is an effort to ban all production and use of asbestos in America, launch public education campaigns to raise awareness about its dangers and expand research and treatment of diseases cause by asbestos.The bill passed in the Senate on Oct. 4, 2007 by Unanimous Consent. A record of each representative’s position was not kept.The bill now goes on to be voted on in the House.

SOURCE: myMeso › Asbestos Hearing set for Feb. 28

Searches, news alerts, links – they invariably take me to stories written by the British media and posted to UK web sites and publications. The Press Association, the BBC, WebWire – just TODAY they had three stories about asbestos-related disease.

Stories urged workers likely to come in contact with asbestos to use precautions, wear protective clothing including filtered breathing units. Britain is having Mesothelioma Awareness Day Feb. 27.

Where is our news? Where is our information? The only time anyone in America has ever heard of Mesothelioma is when a loved one is shocked by a diagnosis.

Oh, and there is another time people hear about it. On commercials for law firms, which can tend to generate skepticism, scoffing, a sense that someone is trying to gain from someone else’s misfortune. Is that the truth?

The web site Asbestos.com recently talked to a professor of ethics at Washington University School of Law, Peter Joy. He said that asbestos lawsuits have, in fact, sparked many criticisms of the legal profession, and questions about the ethics of soliciting for clients.

But, he said, those who have suffered because of asbestos exposure have a different view of the situation. For many, faced with mounting medical costs, the right to bring suit against the companies responsible for their illness is their only recourse.

But shouldn’t they have known the danger their job might be posing? some ask.

Joy says no. He points out that the asbestos industry and others who knew and understood the dangers of asbestos to their workers and to the public showed complete callous disregard for general safety.

The Mesothelioma Information and Resource Group estimates that the connection between asbestos exposure and lung cancer was noted as early as 1925, and confirmed over the next 70 years. But, Joy says, the industry buried information about the dangers and hazards in the interest of maintaining higher profits.

Remember that the incubation period of Mesothelioma and other asbestos-related cancers is a long one, remaining latent in those exposed for 30 to 40 years. By the time the dangers of asbestos were told to the public, it was too late for many people.

Even now, asbestos is still not even completely banned in the U.S.

Asbestos litigators, Joy points out, have actually been responsible for raising public awareness about asbestos and mesothelioma. The result is that people have more information, and they are alert to their risk level. They seek early screening, which may save their life.

We certainly don’t see these stories in our media. Maybe a blip here, or a brief story here, then it’s gone again. People in the U.S. assume asbestos is yesterday’s worry. Surely that was years ago, right? That was fixed, wasn’t it?

Who else is going to help asbestos disease sufferers beat this drum, when the still-real danger has been so effectively swept under the rug?

Joy summarizes that it’s hard to fault methods and measures that bring about awareness, and help people in desperate need find a little bit of justice, whatever cold comfort that might bring.

SOURCE: myMeso › Who Cares About Us?

Asbestos is Leading Risk Factor for Mesothelioma

The main risk factor for developing mesothelioma is exposure to asbestos. Asbestos refers to a family of fibrous minerals made of silicate. Asbestos was once used in many products such as insulation, floor tiles, door gaskets, soundproofing, roofing, patching compounds, fireproof gloves and ironing board covers, and even brake pads. As the link between asbestos and mesothelioma has become well known, the use of this material has almost stopped. Most use stopped after 1989, but it is still used in some products.

Experts have linked this drop in asbestos use to the fact that the rate of development of mesothelioma is no longer increasing [in the U.S.]. Still, up to 8 million Americans may already have been exposed to asbestos.

Exposure to asbestos particles suspended in air and building materials is much less hazardous except when they are being removed. Since asbestos is a naturally occurring mineral, it can also be found in dust and rocks in certain parts of the United States as well as the world. According to the U.S. Environmental Protection Agency, as many as 733,000 schools and public buildings in the country today contain asbestos insulation. As many as 10% to 15% of schools in the United States may contain asbestos insulation.

People who may be at risk for occupational asbestos exposure include some miners, factory workers, insulation manufacturers, railroad workers, ship builders, gas mask manufacturers, and construction workers, particularly those involved with installing insulation. Several studies have shown that family members of people exposed to asbestos at work have an increased risk of developing mesothelioma, because asbestos fibers are carried home on the clothes of the workers.

The incidence rate for mesothelioma in men is dropping, probably because they are no longer being exposed directly to asbestos in their work. But the incidence rate for mesothelioma in women is steady, which suggests that they are being exposed in a way that is not directly tied to work, but more to their environment either at home or work. One example would be asbestos in buildings where they work or live. A study from California also links mesothelioma to naturally occurring asbestos deposits in mountains.

Another important point about asbestos and mesothelioma is that the risk of mesothelioma does not drop with time after exposure to asbestos. The risk appears to be lifelong and undiminished. There are 2 main forms of asbestos — serpentine and amphiboles.

Serpentine fibers are curly and pliable. Chrysotile is the only type of serpentine fiber and it is the most widely used form of asbestos.

Amphiboles are thin, rod-like fibers. There are 5 main types — crocidolite, amosite, anthrophylite, tremolite, and actinolyte. Amphiboles (particularly crocidolite) are considered to be the most carcinogenic (cancer-causing). However, even the more commonly used chrysotile fibers are associated with malignant (cancerous) mesotheliomas and should be considered dangerous as well.

When asbestos fibers are inhaled, most are cleared in the nose, throat, trachea (windpipe), or bronchi (large breathing tubes of the lungs). Fibers are cleared by sticking to mucus inside the air passages and being coughed up or swallowed. The long, thin, fibers are less readily cleared, and they may reach the ends of the small airways and penetrate into the pleural lining of the lung and chest wall. These fibers may then directly injure mesothelial cells of the pleura, and eventually cause mesothelioma.

Asbestos fibers can also damage cells of the lung and result in asbestosis (formation of scar tissue in the lung), and/or lung cancer. The risk of lung cancer among people exposed to asbestos is increased by 7 times, compared with the general population. Indeed, asbestosis, mesothelioma, and lung cancer are the 3 most frequent causes of death and disease among people with heavy asbestos exposure.

Peritoneal mesothelioma, which forms in the abdomen, may result from coughing up and swallowing inhaled asbestos fibers. Cancers of the larynx, pancreas, esophagus, colon, and kidney may also come from asbestos exposure, but the increased risk is small. The risk of developing a mesothelioma is related to how much asbestos a person was exposed to and how long this exposure lasted. People exposed at an early age, for a long period of time, and at higher levels are most likely to develop this cancer.

Mesotheliomas take a long time to develop. The time between first exposure to asbestos and diagnosis of mesothelioma is usually between 20 and 50 years.

Asbestosis

asbestosis – Asbestosis is a breathing disorder caused by inhaling asbestos fibers. Prolonged accumulation of these fibers in your lungs can cause scarring of lung tissue and shortness of breath. Asbestosis symptoms can range from mild to severe, and usually don’t appear until years after exposure.

According to information provided by the Mayo Clinic, symptoms of asbestosis include shortness of breath, initially only with exertion but eventually even while resting; decreased tolerance for physical activity; coughing, chest pain, and even finger deformity (clubbing) in some cases.

Asbestosis may cause such a reduced flow of oxygen as to be disabling or even fatal. It can also lead to complications like high blood pressure in the lungs, heart problems, lung cancer, other lung damage including those affecting the lining of the lungs and chest cavity, the pleura. These include pleural thickening and hardening (pleural plaques), and abnormal accumulation of fluid between the layers (pleural effusion).

Asbestosis itself does not increase your risk of developing mesothelioma, but it indicates that you were exposed to asbestos and therefore are also at risk for developing malignant mesothelioma.

Adenocarcinoma

adenocarcinoma (A-den-oh-KAR-sih-NOH-muh) – Cancer that begins in cells that line certain internal organs and that have gland-like (secretory) properties.

Although commonly associated with lung cancer, adenocarcinoma is a type of cancer that develops in cells lining glandular types of internal organs, such as the lungs, breasts, colon, prostate, stomach, pancreas, and cervix. Another type of adenocarcinoma, mucinous adenocarcinoma, accounts for only 10-15% of all adenocarcinomas and is particular to aggressive carcinomas that are comprised of at least sixty percent mucus.

Non-small cell lung cancers make up over three quarters of all new lung cancer cases in the United States. While there is only one type of small cell lung cancer, there are three types of non-small cell lung cancer. The three types of non-small cell lung cancer are squamous carcinoma, large cell carcinoma, and adenocarcinoma. When adenocarcinoma develops in the lung’s air sacs, it is called bronchioalveolar adenocarcinoma. About forty percent of all lung cancer cases diagnosed today is adenocarcinoma.

Like other cancers, adenocarcinoma is the growth of abnormal cells. These cancerous cells multiply out of control and form a tumor. In the lung, as the tumor grows, it destroys parts of the lung. Eventually, the tumor’s abnormal cells can spread (metastasize) to other parts of the body, including the local lymph nodes in the chest and the central portion of the chest, called the mediastinum; the liver; the bones; the adrenal glands; and other organs, including the brain.

Adenocarcinoma is more likely than other types of lung cancer to be contained in one area of the body. If it is truly localized, it may also respond better than other lung cancers to treatment, especially surgical removal of the tumor and draining lymph nodes.

Adenocarcinoma is the most common form of lung cancer. Most of this type of cancer is found in smokers. However, it also is the most frequent type of lung cancer seen in nonsmokers. It is the most common form of lung cancer seen in women and people younger than 45.

As with other forms of lung cancer, you are more likely to get adenocarcinoma if you:

• Are exposed to asbestos. Asbestos is a fibrous mineral that is used in home insulation, fireproofing, tiles for floors and ceilings, automobile brake linings, and other products. It is believed that asbestos fibers can cause lung cancer. People at risk of lung cancer include workers who are exposed to asbestos on the job (miners, construction workers, shipyard workers and auto mechanics who work with brakes), and people who live or work in buildings in which building products that contain asbestos are deteriorating. In addition to the adenocarcinoma type of lung cancer, individuals who have been exposed to asbestos, and particular types of asbestos, are also at a significant greater risk of developing a specialized type of lung cancer called mesothelioma.

• Are exposed to other carcinogens in the workplace. These include uranium, arsenic, vinyl chloride, nickel chromates, coal products, mustard gas, chloromethyl ethers, gasoline, diesel exhaust and high levels of talc dust.

• Smoke cigarettes. Smokers have 13 times more risk of developing lung cancer than nonsmokers. Cigarette smoke is associated with most cases of adenocarcinoma. Smoking is by far the leading risk factor for lung cancer, substantially more significant than all the other risk factors combined.

• Breathe cigarette smoke. Nonsmokers who inhale the cigarette fumes of smokers have an increased risk of lung cancer.

• Are exposed to radon gas. Radon is a colorless, odorless radioactive gas that is formed in the ground. It seeps into the lower floors of homes and public buildings and can contaminate drinking water. Radon exposure is the second leading cause of lung cancer. It’s not clear whether elevated radon levels contribute to lung cancer in nonsmokers. However, research has shown that radon exposure contributes to increased rates of lung cancer in smokers and in people exposed to higher levels of radon, such as miners. You can test the levels of radon in your home and surrounding area by using commercially available radon testing kits.

Your doctor will ask you whether you smoke or whether you live with a smoker. If you smoke, your doctor will ask you how much you smoke and how long you have smoked. Your doctor also will ask whether you have worked in an industry where you may have been exposed to asbestos or other carcinogens.

Call your doctor promptly if you have any of the symptoms of lung cancer, especially if you are a smoker or you have worked in an industry with high exposure to asbestos.

The outlook depends on the stage of the cancer and the overall health of the patient. In general, the prognosis is poor, especially if the lung cancer has spread to areas outside of the chest wall or has involved the lymph nodes of the mediastinum. This cancer can only be cured when surgery or radiation therapy can completely remove the tumor. However, many lung cancers are diagnosed at a stage when this is not possible. About 17 percent of people with adenocarcinoma survive more than 5 years after diagnosis.

Asbestos exposure increases the risk of lung cancer by nine times. A combination of asbestos exposure and cigarette smoking raises the risk to as much as 50 times.

A person who has had lung cancer is more likely to develop a second lung cancer than the average person is to develop a first lung cancer.

Repeated respiratory infections, such as bronchitis or pneumonia, can be a sign of lung cancer.

Asbestos Information

Asbestos and asbestos containing materials are responsible for causing asbestos cancer and asbestos disease cases around the world. Two of the most dangerous forms of asbestos disease are mesothelioma and asbestosis. Asbestos has been used in thousands of products for more than a century because it is highly versatile, abundant, and relatively cheap. Since asbestos is a naturally occurring mineral, it requires no manufacturing. Instead, asbestos only has to be mined, crushed, and added into products during the manufacturing process. Since asbestos is basically a rock, it is highly impervious to heat. It also happens to be chemically inert. Since its basic mineral structure is shaped in long, thin fibers, it can be broken down into these fibers to add strength and flexibility to nearly any product. A characteristic of asbestos is what is known as tensile strength. It allows products to be flexible yet strong while not adding excessive weight. Asbestos is one of few minerals that can actually be woven. Asbestos was commonly woven into materials that made excellent insulators, but were too brittle to be used by alone because they would crumble. Asbestos made insulation products flexible and durable since it was not affected by heat. Asbestos is not a very effective insulator by itself. All these qualities add up to a very useful and inexpensive product but some of them also make asbestos toxic to those that inhale asbestos fibers. There are six forms of asbestos characterized by differences in structure and color. Asbestos is also divided into two categories: serpentine and amphibole asbestos. Serpentine asbestos is made of curly fibers and amphibole asbestos is made of long, straight fibers. Both types of asbestos are considered dangerous, though it is thought amphibole asbestos forms, including crocidolite and amosite, may be more dangerous to humans.

Asbestos Exposure

Unfortunately, there are many opportunities for asbestos exposure since asbestos was used so abundantly in both industrial and consumer products. Most people that develop asbestos cancer and other asbestos diseases, including mesothelioma and asbestosis, usually have a history of chronic exposure to asbestos. Mesothelioma is somewhat unique in this respect, as mesothelioma cases have developed in people with limited asbestos exposure. As a result, there is no established “safe” level of asbestos exposure. Workers are exposed to asbestos when the substance or products containing asbestos are cut, crushed, sanded, drilled or otherwise disturbed. When left undisturbed, asbestos-containing materials can be relatively safe. In cases where asbestos materials are mined, installed, removed, demolished, or serviced, exposure can be a risk unless strict asbestos abatement techniques are employed. When inhaled, microscopic asbestos fibers can make it past the body’s natural defenses and deep into the lungs causing asbestos disease. Once within the lungs, the fibers can irritate lung tissue leading to asbestos cancer. If asbestos fibers make their way to the alveoli or air sacs in the lungs where oxygen and carbon dioxide exchange takes place, they can cause irritation and scarring called asbestosis. Asbestos fibers that pass through the alveoli and into the pleural mesothelium, can eventually lead to asbestos cancer in the form of tumors and malignant mesothelioma.

Asbestos Products

The following is a list of products that commonly contain asbestos:Roofing shinglesFelt and tar joint compoundCement pipesWall boardCeiling tilesSiding gasketsLaboratory hoodsMastics and sealantsBrake liningsFire doorsInsulation on some wiringCooling towersPaintTaping compound (thermal)Flexible duct connectorsGreenhouse materialsAppliance insulationSheet vinyl floor coveringPlaster sprayed-on fireproofingRefractory cement chalk boardsInsulation on steam pipesHeat resistant gloves and suitsAsbestos blankets Cork Board

Asbestos History

Asbestos was first discovered to be dangerous at the beginning of last century. It has been known as a carcinogen since the 1960s and was subsequently banned in more than 30 countries under grounds that there is no safe level of asbestos exposure. Mining and manufacture of most asbestos products has been ceased in the U.S., yet we continue to import more than 30 million pounds of asbestos in foreign products each year. A new recommendation by an EPA-sponsored panel of asbestos industry members and other experts on the topic called for a ban of all importation, manufacture, and mining of asbestos and asbestos containing products in the U.S. Although this may be a good sign, it also means that new risks of asbestos exposure are still developing. Since asbestos cancer and asbestos diseases take years and even decades to develop, many more cases of asbestos disease will be diagnosed.

Asbestos Legislation

On March 1, 2007, Senator Patty Murray (D-WA) introduced S. 742: Ban Asbestos in America Act of 2007 to the 110th Congress. This is an act to amend the Toxic Substances Control Act to reduce the health risks posed by asbestos-containing materials and products having asbestos-containing material, and for other purposes. The bill is an effort to ban all production and use of asbestos in America , launch public education campaigns to raise awareness about its dangers and expand research and treatment of diseases cause by asbestos. Murray’s legislation, which was first introduced in the 107th Congress, will also authorize additional studies to determine which commercial products today still contain asbestos, increase funding for asbestos-related diseases, and call for a national mesothelioma registry to help public health professionals track this deadly asbestos-related disease. Studies estimate that during the next decade, 100,000 victims in the United States will die of an asbestos related disease – equaling 30 deaths per day. The bill passed in the Senate on Oct. 4, 2007 by Unanimous Consent.

Currently, the companion to this bill, H.R. 3339, the Bruce Vento Ban Asbestos and Prevent Mesothelioma Act of 2007, is in committee in the House of Representatives. 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 bill must pass committee to make it before the full House for a vote.

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

SOURCE: myMeso › Mesothelioma and Asbestos

Information in the petition states that “Congress is expected to hold hearings soon on whether to implement a total ban on asbestos-containing products. Right now, industry lobbyists are pressuring Congress to institutionalize the allowance of up to 1 percent of asbestos in our industrial materials, consumer products, toys, and other products on American store shelves. We say, ‘No!’ It’s time for a total ban on asbestos in American products.”

Studies show that asbestos exposure kills up to 10,000 Americans each year. Lend your voice to this fight. The U.S. House of Representatives will have a hearing on February 28, 2008, to discuss asbestos, so sign the petition TODAY.

To sign, visit http://www.gopetition.com/petitions/totally-ban-asbestos.html

SOURCE: myMeso › Sign the Petition – Ban Asbestos!

Click on the video below to watch a short video about ADAO, and visit them online.

SOURCE: myMeso › Join the fight against Asbestos Disease

This is a cancer that has a really long incubation period, with the time between first exposure to asbestos and the development of mesothelioma ranging from 20 and 50 years. Even scarier, the American Cancer Society (ACS ) says that the risk of mesothelioma DOES NOT DROP with time after exposure to asbestos. The risk appears to be lifelong and undiminished.

As a result, most patients diagnosed with mesothelioma are older. The ACS says about three-fourths of people diagnosed are over 65 years old. They may already be weak from symptoms of the disease, or unable to tolerate aggressive therapies.

Of course, it’s now known that exposure to asbestos is the main reason for the development of mesothelioma, and also asbestosis (formation of scar tissue in the lungs) and adenocarcinoma, another form of the asbestos-related cancer. The highest risk group seems to be people who were exposed to asbestos through their work. The ACS estimates that up to 8 million Americans may already have been exposed to asbestos.

As awareness of mesothelioma grows, it is hoped that more people who know they were exposed to asbestos will seek diagnosis early. It has been shown that a chest x-ray often isn’t very effective in diagnosing mesothelioma, so there has been interest in a blood test that measures the levels of certain proteins that is higher in people who have lung damage due to asbestos.

But even with early diagnosis, traditional cancer treatments, like chemotherapy, radiation and surgery, are not very effective against mesothelioma. One problem is that it does not grow as a single mass. Instead it tends to spread along surfaces, nerves, and blood vessels. This makes it hard for one or more types of treatment to get rid of all of the disease. Cancer treatments may ease symptoms, like shortness of breath, pain, bleeding or trouble swallowing, but they are unlikely to provide a longterm cure.

So how do people continue to hope? What keeps them fighting? I’d really like to know. Please share your story with me.

Also, a GREAT site to check out is the Lung Cancer Support Community. Their link is in the blogroll, or type in www.lchelp.org. They have message boards, chats, information and even a place to start your own blog.

SOURCE: myMeso › How to keep hoping?

There are links on this page to a number of web sites that provide medical information and information about asbestos, exposure to which is the leading cause of Mesothelioma. Check back regularly, as I will be adding to that list of links in addition to posting new information here.

Here is a good general definition, from the University of Alabama Birmingham (UAB) Medical Center, which has a Mesothelioma Clinic at its Comprehensive Cancer Center :

Q: What is mesothelioma and who is at risk?

A: Mesothelioma is an aggressive form of cancer in which cells of the mesothelium (the membrane that covers and protects most of the internal organs) become abnormal, form tumors, and grow without control or order. The disease usually affects the surface of the lung or less commonly the lining of the abdomen. It is relatively uncommon, with 2,500-3,000 new cases diagnosed in the United States each year. The major risk factor is working with asbestos, but the disease has been reported in some individuals without any known exposure to it. An experimental drug, Pemetrexed®, has shown promise in treating advanced mesothelioma. The UAB Mesothelioma Clinic and Comprehensive Cancer Center offer clinical trials for treating the disease. Early referral for the best treatment is important after diagnosis.

UAB is a research and teaching hospital, and is currently conducting a number of studies on the treatment of mesothelioma.

In 2005, UAB’s Spring/Summer magazine published information about ongoing studies being conducted by Katri Selander, M.D., Ph.D., a Cancer Center Associate Scientist, and Pierre Triozzi, M.D., about the effects of bisphosphonates on cancer cells.

Bisphosphonates are drugs that are commonly used to treat and prevent osteoporosis. They also are used to treat metastatic breast and prostate cancers.

The UAB article reported that Drs. Selander and Triozzi “have examined the effects of bisphosphonates on cancer cell cultures and in animal models, and have found that the drugs kill mesothelioma cells in both.”

Further results of these studies were reported in the May 1, 2006 issue of Clinical Cancer Research, Vol. 12, 2862-2868; and in the European Journal of Pharmacology, Volume 559, Issue 1, dated March 15, 2007.

Key points of the article in Clinical Cancer Research said that “the diagnositc use of radioactive bisphosphonates has revealed the accumlation of bisphosphonates in mesothelioma” and said that results of the studies “support further study of bisphosphonates in the management of mesothelioma.”

The European Journal of Pharmacology report states that “Pre-clinical studies indicate that bisphosphonates also ihibit the growth of various cancer cells in vitro” and “in … mouse AB-12 mesothelioma cells.”

For more information, visit UAB’s Comprehensive Cancer Center online at www3.ccc.uab.edu or click on the link in my list.

SOURCE: myMeso › Mesothelioma Research