UK Justice Secretary Jack Straw

Earlier this month, Chris Hahn, executive director of the Mesothelioma Applied Research Foundation (Meso Foundation) expressed his support for the recent announcement from the UK that it plans to not only endorse compensation for mesothelioma victims, but to promote research and treatment. In a news release, Hahn praised the U.K. for its recognition “that society’s obligation and moral responsibility to remedy the tragic legacy of decades of asbestos use requires funding research to develop effective medical treatments.” Then, he asked the all-important question: “Will the United States follow?”

Hahn’s praise and plea followed remarks by the U.K.’s Lord Chancellor and Secretary of State for Justice, Jack Straw, who has been outspoken about the government’s role in caring for workers harmed by asbestos on the job.  Straw issued a statement Feb. 25, 2010, in response to an ongoing debate over the government’s decision on the question of compensation for pleural plaques.

Although pleural plaques, which are small areas of fibrosis in the pleura of the lung caused by asbestos exposure, indicate that a person has been exposed to asbestos, they generally do not cause any significant change in lung function. As a result, the Law Lords on Oct. 17, 2007 determined that people who have pleural plaques, but no other asbestos-caused illness, are not eligible for any compensation for medical treatment or other financial claims. The debate over pleural plaques sparked a national debate about asbestos disease.

Although subsequent research did not provide enough evidence to overturn the Law Lords’ ruling, it has provided significant information about asbestos disease, including mesothelioma and lung cancer. The government also is establishing a number of policies to make it easier for those who are diagnosed with mesothelioma or serious asbestos disease to receive compensation more quickly. Additionally, the research has encouraged the UK government to take a stronger stand on mesothelioma research and treatment.

According to Straw’s statement, “The fact that the UK has one of the highest rates of death from mesothelioma in the world is a legacy of our industrial heritage and the part that asbestos played in it. Just as the UK was a global leader in the asbestos industry, we must now become a global leader in research into asbestos-related disease.”

The government of the UK is calling for the creation of a National Centre for Asbestos-Related Disease, which will be a “collaborative network of funded researchers whose core purpose would be to advance medical research into the prevention, cure and alleviation of asbestos-related disease – primarily mesothelioma,” according to Straw. He said the insurance industry has pledged £3 million toward this research effort.

Benefits of such a concentrated and cooperative research and treatment program would not only benefit mesothelioma patients, but also would significantly reduce the costs of litigation, death and disability benefits, and health care costs, Hahn points out.

“This is exactly what the Mesothelioma Applied Research Foundation has been urging in the United States the past ten years,” Hahn says. “Mesothelioma and other asbestos-related diseases are a fundamental problem of social justice. And a just solution to that problem requires medical research to develop effective treatments to end the suffering and save lives. It is encouraging to see that the U.K. is getting it; we hope the U.S. will catch up soon.”

Read Hahn’s statement.

For more information, visit the Meso Foundation online at www.curemeso.org.

SOURCE: myMeso › Meso Foundation commends U.K. efforts on mesothelioma, urges U.S. to follow suit

In the feature, Debbie talks about how she moved from what was presented to her as a death sentence to her new outlook of happiness, hope and survival. Debbie was diagnosed in November 2006, at which time she thought she might be seeing her last Christmas. Doctors estimated she had only six to nine months to live.

As most of you know, Debbie refused to accept the prognosis that she had only months to live, instead actively seeking alternative medical treatments that might take a fresh look at her cancer and provide her with new options. Primarily, she found Prof. Thomas Vogl at the University Clinic in Frankfurt, Germany, who administers a therapy called chemoembolization. In this therapy, chemotherapy drugs are introduced directly to the tumor area through a catheter into the lung.

Because the treatment is still in clinical trial stages, Debbie had to travel to Germany for each treatment, not available in the UK, and paid for travel expenses and medical care from her own pocket. However, results were amazing, and Debbie’s tumor shrunk by more than 80 percent, putting her in full remission.

Despite a recent setback, when a September check-up showed cancer in her lymph node had increased in size (the tumor in her lung remains stable), she is optimistic. She lobbies energetically for mesothelioma and asbestos awareness, and also to bring chemoembolization to the UK so that more people might try this new therapy that has shown so much success in her case.

The paper quotes Debbie as saying, “Christmas is the time of year I celebrate being here. ”

We love you, Debbie, and we are SO glad to celebrate another Christmas with you, and we look forward to spending 2010 with you!

Read the full article.

SOURCE: myMeso › UK meso survivor Debbie Brewer featured in Plymouth paper as story of hope

A champion for the rights of workers who have developed pleural plaques as a result of exposure to asbestos in the workplace is Jarrow MP Stephen Hepburn. In a meeting at the House of Commons on Nov. 27, he argued the issue of pleural plaques is “immensely important” to workers and pensioners, and insisted it is the duty of members of both sides of the House to overturn the “disgraceful and unjust decision by the Law Lords to bar this terrible illness from classification as a designated illness for compensation purposes,” according to a report in The Chronicle.

Hepburn also told the Commons that pleural plaques sufferers are 1,000 times more likely to develop a more serious form of asbestos-related cancer. Mesothelioma is a deadly form of cancer that affects the lining of the chest cavity and lungs (pleural) or the lining of the stomach (peritoneal). It may also rarely affect the lining of the heart (pericardial). There is no known cure for mesothelioma.

During the heated debate, The Daily Mirror reports that statistics were revealed that show mesothelioma rates in the UK have nearly doubled in 10 years. According to the news source, hospitals treated 7,349 cases of mesothelioma in the past year, compared to 3,773 cases during the timeframe of 1998-99. The Mirror calls mesothelioma an “asbestos timebomb,” citing the disease’s long latency period.

The Mirror quotes Hepburn as saying, “We’re seeing the legacy of workers exposed to asbestos in the 1960s.”

SOURCE: myMeso › Startling statistic revealed during UK pleural plaque debate

According to information on ClinicalTrials.gov, a service of the U.S. National Institutes of Health, this is a randomized phase III trial. Video-assisted surgery removes part of the tissue layer covering the inside of the chest cavity, which researchers think may be effective in treating pleural effusion and cause less damage to normal tissue. Talc pleurodesis may keep fluid from building up in the chest cavity. It is not known at this time which thereapy is more effective.

The primary objective of this study, as stated in the project outline, is to compare the effectiveness of these two modes of treatment in terms of 1-year survival, in patients with suspected or proven malignant mesothelioma.

Secondary goals of the study include comparing the control of pleural effusion, comparing procedure-related complications, comparing symptoms and quality of life of these patients at 3, 6 and 12 months after treatment, comparing the length of hospital stay, the exercise tolerance level of these patients at 3, 6 and 12 months after treatment, and to determine the cost to the health service, in terms of resources used for procedures, hospital bed usage and cost of primary and secondary care over 12 months.

Recruiting locations in the UK are Basildon University Hospital, Gelnfield Hospital (Leicester), Guy’s Hospital (London), Papworth Hospital (Cambridge) and Royal Hallamshire Hospital (Sheffield). Principal investigator for the study is Robert Winter, MD, Papworth Hospital.

This study is identified in the U.S. at clinicaltrials.gov by ID number NCT00821860.

For contact and recruiting information, visit the Clinical Trials information page at http://clinicaltrials.gov/ct2/show/study/NCT00821860.

SOURCE: myMeso › Mesothelioma clinical trial in UK recruiting participants

The findings were part of an article published in the July 19 edition of the Guardian, which says medical researchers now believe that the danger of asbestos exposure may have been “seriously underestimated.”

Asbestos disease – particularly mesothelioma – is a looming epidemic in the UK, expected to peak in the middle of the next decade, resulting in about 5,000 deaths each year, according to figures from the Health and Safety Executive (HSE). Many of these deaths will be a result of secondary exposure, in addition to more typical industrial type exposure, the agency says.

The Guardian article says “patterns of premature fatalities” among such professions as electricians, plumbers, garage mechanics, and even teachers and hairdressers” are now being reported.

Additionally, the government’s Industrial Injuries Advisory Council (IIAC) estimates that as many as 90,000 people each year may be developing pleural plaques – an early indicator of asbestos contamination in the chest cavity and lungs. There is a debate currently raging in the UK to determine whether or not people diagnosed with pleural plaques are eligible to sue for compensation for their injury. A 2007 House of Lords judgment barred these claimants, saying pleural plaques “do not alter the structure of the lungs or restrict their expansion.”

However, proponents for the rights of those with pleural plaques to sue point out that this early asbestos disease could develop into more serious diseases including asbestosis, a severe scarring of the lungs, and mesothelioma, a deadly cancer.

According to the Guardian, more than half of all work-related deaths from six major cancers in the UK are related to asbestos. Additionally, studies estimate that as many as 125 million people around the world work in asbestos-contaminated offices and factories, even if asbestos is not actively used in any manufacturing or other activity at that facility.

Now, the IARC study says “sufficient evidence is now available to show that asbestos also causes cancer of the larynx (throat) and of the ovary.”

SOURCE: myMeso › IARC study links abestos exposure to throat and ovarian cancers

This is truly wonderful and amazing news, particularly for a cancer like mesothelioma, which has no known cure. This sounds pretty darn close for Debbie, who is considered in remission with this amount of tumor gone.

Those who have been following Debbie’s story and have read the Q&A with Dr. Vogl we posted on this site know that chemoembolization is a procedure currently in clinical trials. The process involves introducing chemotherapy directly to the tumor, and basically trapping it there, concentrating it where it is most needed. Dr. Vogl is head of the Department of Diagnostic and Interventional Radiology at J.W. Goethe University Hospital at Frankfurt University.

The clinical trial is currently treating between 300 and 400 patients with primary and secondary lung cancer annually, and about 20 mesothelioma patients.

For more information, see the Q&A with Dr. Vogl.

Read more of Debbie’s story at her blog, Mesothelioma & Me.

SOURCE: myMeso › Theo loves Germany – Debbie’s tumor continues to shrink!

The study was conducted for the Health and Safety Executive, an organization whose mission is to prevent death, injury and ill health in Great Britain’s workplaces. The HSE says this is the largest global study of its kind, including more than 600 patients with mesothelioma and 1,400 healthy people, interviewed to examine the rates of mesothelioma among different occupations in the UK.

Statistics resulting from the study include the following:

• One in 17 British carpenters bornin the 1940s will die of mesothelioma
• Plumbers, electricians and decorators born in the 1940s who worked in their trade for more than 10 years before they were 30 have a risk of 1 in 50 of dying of mesothelioma
• The risk for other construction workers born in this generation is 1 in 125.
• For every case of mesothelioma, asbestos also causes about 1 case of lung cancer; the risk of asbestos-related lung cancer for carpenters in this age group is 1 in 10.
• In other industries, about two thirds of British men and one quarter of British women worked in jobs with potential asbestos exposure.
• Among the general UK population, even those who did not experience occupational exposure still have a 1 in 1,000 risk of mesothelioma, indicating unrecognized environmental asbestos exposure, due to its widespread use in the 1960s and 1970s.

The report estimates there are more than 2,100 people diagnosed with mesothelioma in the UK every year, with about 5 times as many cases in men as in women.

Read the full report.

SOURCE: myMeso › Study examines mesothelioma risk in Britain

The Mirror is spearheading what it calls the Asbestos Timebomb Campaign, to raise awareness of the danger of asbestos exposure and to call on the British government to take action in preventing it. The news agency has a list of five demands as part of the campaign:

1. Establishment of a £10 million National Centre for Asbestos Related Disease to find better treatment, alleviate suffering and work on cures.
2. Reinstate compensation for victims of “pleural plaques” – scars on lungs caused by asbestos – after it was abandoned two years ago.
3. Secure fair and equal compensation for asbestos disease sufferers who can’t trace the insurers of the bosses who exposed them, through a new Employers’ Liability Insurance Bureau paid for by the insurance industry.
4. Establish a public register of all asbestos surveys carried out on public buildings.
5. Provide the government’s Health and Safety Executive with the resources to meet the department’s own targets for inspecting asbestos removal work.

In a statement published by The Mirror, Barbara said, “I commend the Mirror for its watchdog efforts in leading the charge regarding asbestos exposure. My husband’s death was a long and painful ordeal, and I can readily identify with those who have been exposed to asbestos as well as their loved ones.”

She said that at the time Steve McQueen was diagnosed with mesothelioma, it was widely reported in the media simply as lung cancer. Many people are still unaware that the actor actually died as a result of asbestos exposure, she said.

Ironically, Barbara now lives in Montana, an hour’s drive from Libby, the site of the largest known asbestos contamination in U.S. history. The poisoning of Libby is linked to the vermiculite mine that operated there for years under the W.R. Grace & Company.

The company and some of its top officials are in the midst of a criminal trial to determine if it knowingly exposed mine workers and nearby residents to deadly asbestos.

SOURCE: myMeso › Steve McQueen’s widow speaks out about asbestos

Even better, Debbie reports on her blog, Mesothelioma & Me, that a doctor in London is interested in bringing Professor Vogl to the UK to present his technique! Currently, this therapy is only available in Germany, where Dr. Vogl is pioneering the procedure for the treatment of cancer including mesothelioma at the University Clinic, Frankfurt.

Those who have been following Debbie’s story know she began chemoembolization under Dr. Vogl’s care in May 2008, and now she is essentially in remission! As a result of her success, Debbie is a vocal campaigner to bring the procedure to more widespread availability.

Debbie was just featured in The Plymouth Herald, speaking out about her success with chemoembolization and her efforts to bring the treatment to the UK. Doctors originally told Debbie she had only six to nine months to live at her original diagnosis.

SOURCE: myMeso › Great news from Debbie’s visit with Dr. Vogl

To mark the establishment of the event in 2006 the British Lung Foundation delivered a Charter to the Prime Minister at Number 10 Downing Street, with more than 14,000 signatures. The Charter asks the government to support improved care and treatment of mesothelioma patients, better protection for employees, and more funding for resarch. You can sign the Charter!

In 2009, a goal of Action Mesothelioma Day is to ask the British government to establish an Asbestos Related Disease Research Centre. There is a list of Action Mesothelioma Day 2009 Events at the British Lung Foundation web site.

Of course our friend Debbie Brewer will be active in today’s events, including speaking about Alternative Treatment in Mesothelioma at an event presented by the Mick Knighton Mesothelioma Research Fund (MKMRF).

She also will join Jackie Lowe of the Roger Lowe Asbestos Mesothelioma Campaign to plant snowdrops in memory of those that have died of mesothelioma. The snowdrops will be planted at Saltram House, where last year Debbie and Jackie planted a tree to honor mesothelioma patients.

The MKMRF uses the snowdrop flower as its symbol, because it works through the depths of despair in the winter to push through the ground in spring to bloom. It represents hope and a promise for the future, and has come to be a symbol of mesothelioma awareness among groups in the UK.

SOURCE: myMeso › Today is Action Mesothelioma Day in the UK

The Hunmanby Parish Council is asking residents of the area to be on the lookout for illegal dumping to help them catch the guilty party or parties. Usually, the council is paid to remove and dispose of items left on roadsides.

The asbestos materials were left on Sheepdyke Lane and discovered by a local farmer, who suspected it was asbestos and called the authorities for safe removal of the material.

The Council requests residents report flytipping in the area by calling the Scarborough Council at (01723) 232323 or the Environment Agency’s 24-hour hotline at 0800 807060. Reports also can be sent to the Scarborough Council web site.

SOURCE: myMeso › Illegal dumping raises concerns about asbestos exposure

According to a report in the Sheilds Gazette, Dame Helena Shovelton, chief executive of the BLF, is particularly encouraging residents of South Tyneside to participate in the survey. She said the area has been identified as one of the “top 10 hot spots for mesothelioma in the UK.”

The reserach survey is supported by the Mick Knighton Mesothelioma Reserach Fund. Readers of this site are familiar with this organization, which seeks to raise awareness about mesothelioma as well as money for research. The Gazette quotes Anne Craig, an official with the Knighton fund whose husband, David, died of mesothelioma, as saying, “I would encourage people to complete the BLF survey as soon as they can.”

Visit the BLF web site to COMPLETE THE SURVEY. It should only take about 10 minutes to complete. Or, call the BLF helpline at 08458 50 50 20.

SOURCE: myMeso › UK residents affected by meso encouraged to complete online survey

Readers of myMeso have been following Debbie’s story for a while now, and know that the chemoembolization treatment has been successful, resulting in an overall 53 percent reduction in the size of her tumor, which she humorously nicknamed Theo. Her last visit to the clinic was Dec. 12, when she received the great news that she is now in partial remission as a result of the tumor shrinkage.

Chemoembolization is traditionally used to treat liver cancer. Debbie says the Frankfurt program sees a 60 percent success rate in the treatment of mesothelioma using the process, which introduces chemotherapy drugs directly into the tumor.

Diagnosed with mesothelioma in November 2006, Debbie was initially told she had only a few months to live. It is believed that Debbie contracted mesothelioma from contact with asbestos on her father’s clothes when he unwittingly brought the substance home from work. Determined to beat the odds, she began researching mesothelioma treatments. In addition to the chemoembolization, Debbie uses mistletoe therapy, injecting the extract twice a week.

Read more about Debbie at her blog, Mesothelioma and Me.

SOURCE: myMeso › Debbie’s treatment success featured on BBC News

Mistletoe is in fairly widespread use in Europe as a complementary therapy in cancer care. It is given in conjunction with traditional cancer treatments such as chemotherapy, to strengthen the body’s immune system and build its natural defenses. It is believed mistletoe therapy can help cancer patients cope with the side-effects of chemotherapy and radiation.

Mistletoe is considered an anthroposophical medicine, which takes into account a total view of the human body and the human being, including physical constitution, the life force, the consciousness and the ego or free will. Mistletoe is harvested from different trees, with different types of mistletoe having different uses. According to the American Cancer Society, the type of mistletoe used in this therapy grows on species of trees native to England, Europe and western Asia. It is NOT the type of mistletoe commonly seen in the U.S. Mistletoe therapy is only available in clinical trials in the United States.

The extract, which comes from the plant’s leaves and twigs but not its berries, is generally given as an injection and after an initial professional application patients can do the treatment themselves at home. Debbie began her mistletoe treatment at The Park Attwood Clinic, which still oversees the process, although she administers her own injections now.

Debbie says she learned about the treatments from a couple who visited her web site, Mesothelioma & Me. She began the mistletoe therapy at the same time as her chemoembolization treatment, which uses targeted chemotherapy applied directly to her tumor and contained with the tumor. For about two years, she also has been struggling with alopecia, which had caused her to lose large patches of her hair.

“Since I started the mistletoe and the chemoembolization, I have noticed within the last two months my hair has grown back and is its natural color,” she wrote to me in an email. “The mistletoe boosts the immune system and also is very good at quelling the side effects of the chemo, although the side effects with chemoembolization are not as bad as the normal chemo.” She said mistletoe is offered on the German health care system, but it is not recognized by the UK system.

Debbie gives herself the mistletoe injections twice a week.

“I would have to say that a lot of the benefits I have had over the last five treatments is down to the mistletoe,” she says. “It works very well alongside the chemo treatment.”

She left today to travel to Germany for the sixth round of her chemoembolization treatments, and will learn the results of the fifth round, which she received November 6. So far, she has experienced tumor shrinkage after each round of chemoembolization.

SOURCE: myMeso › Mistletoe treatment believed to provide relief for cancer patients

According to the news report, the High Court had to decide which insurance policy should cover mesothelioma and other asbestos related diseases – the one in effect at the time of exposure (a liability insurance held by companies to insure them against claims by employees injured on the job) or the one in effect when a worker becomes sick.

Part of the problem with asbestos-disease related claims is that there is usually a very long latency period for mesothelioma and other asbestos diseases. Sometimes symptoms do not develop for as many as 40 or more years after exposure. As a result, a person does not realize he or she has been injured in the workplace until many years later.

According to the BBC story, this ruling was especially important because many new insurance policies have exemptions against asbestos-related claims.

More than 2,000 people were diagnosed with mesothelioma in the UK last year, and those numbers are expected to grow.

BBC video: Mesothelioma victims’ solicitor Carolann Hepworth reacts to High Court Ruling.

SOURCE: myMeso › UK meso victims win round one in battle for compensation

Experts interviewed for the story say mesothelioma is the “biggest public health disaster the world has ever seen.”

Many people in the area of study were exposed to asbestos through their employment in industries including ship building and steel manufacturing.

Listen to the BBC Radio report.

SOURCE: myMeso › BBC Radio reports 100,000 could die of mesothelioma over 20 years

Bob became ill in May 2006 and was diagnosed with mesothelioma July 31, 2006. He passed away only two months later.

“We as a family had never heard of Mesothelioma, which is caused by exposure to asbestos,” Bob’s daughter Christine writes on the web site. “It took all this time for the disease to take its toll. Apparently asbestos takes the slowest route around the body, which is why sufferers have no symptoms for years or even decades after being exposed.”

They discovered Bob, a resident of Eastbourne, had worked with asbestos in his job doing gas conversions when natural gas was piped to homes in 1973-74.

On Sept. 29, 2007, the family held its first Charity Day, which featured a golf tournament, auction, raffle and disco, which raised £1,403 in Bob’s memory. On Sept. 20, 2008, the second Charity Day event raised £3,200! The money raised supports the Mick Knighton Mesothelioma Research Fund and The British Lung Foundation.

“By setting up this fund, we can remember a very special person, who was a loving husband, dad, granddad and friend,” Christine says. “He will never be forgotten. We want thoughts of him to raise a smile and a laugh. That is what he would have wanted and that is the sort of man he was.”

You can contact the Bob Tolley Mesothelioma Snowdrop Fund at 180 Ashford Road, Eastbourne, East Sussex, BN22 3UA; telephone 01323 649220 or email millietalula@supanet.com or Chris@nimaprint.co.uk.

SOURCE: myMeso › Family establishes mesothelioma fund in UK

The procedure, which is still in a trial stage, targets the tumor with localized chemotherapy. Debbie must travel to Frankfurt, Germany, for the procedure, under the direction of Dr. Thomas J. Vogl, Chairman, Department of Radiology, Department of Diagnostic and Interventional Radiology – University Hospital, Johann Wolfgang Goethe, University of Frankfurt am Main.

Debbie reports that her tumor (Theo, as she calls him) shrunk 18 percent with the first two procedures, and 15 percent after the third treatment. She also says Dr. Vogl is exploring the idea of bringing a mobile unit to the UK that would give people there access to the new therapy. Check out her blog for the latest updates!

SOURCE: myMeso › German meso treatment proving effective

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

A British record label, Candid Records, agreed to release the CD, and Keith recruited a number of musicians to fill in the gaps on the tracks to finally see the project through. The CD was called Free Time, a name initally selected because the original tracks recorded in 1973-74 were done during a recording studio’s down time, when a friend who worked there was able to lend Keith and Gary the space. But the liner notes, penned by Keith to tell the story of how the recording came together, tend to more solemn reflection.

“Then suddenly completion is in front of you and there is no free time anymore,” he writes, and it’s easy to see the dual implication of a completed project and a completed life.

Keith passed away just as the CD was pressed, and it is unlikely he saw it in its final form.

The special edition release of Free Time is available only through the Candid Records web site, and is shipped from the UK. Cost is £9.99 plus shipping, which totals around $24 U.S. once you figure in the exchange rate. But all proceeds from the sales will go to Bart’s Mesothelioma Research, an organization in Britain dedicated to the treatment of mesothelioma.

I received my CD yesterday. Full of free-spirited modern jazz tunes highlighting Keith on saxophone, the CD is joyful and jamming and sometimes poignant. It is perhaps hardest to comprehend when mesothelioma steals the breath of those who create music, before it steals their life.

SOURCE: myMeso › jazz CD a tribute to artist affected by meso

Shadwick, who passed away from mesothelioma on July 28, 2008, was a respected journalist and author whose background as a jazz and rock musician in the 1970s led to a career focus on music and musicians. His credits include books on noted jazz musician Bill Evans, as well as Jimi Hendrix and Led Zeppelin. He also authored The Jazz & Blues Encyclopedia, the Guinness Guide to Classical Composers, and edited The Gramophone Good CD Guide. Additionally, he was a regular contributor to publications including Jazzwise magazine, The Independent and The Daily Mail.

According to an article published on All About Jazz.com, during his early 20s, Shadwick was a jazz and jazz/rock musician, playing saxophone, flute and piano. He was a founding member of the Sydney, Australia-based group, Sun, which released one self-titled album in 1972 before splitting up. In 1973 and 1974, the story reports, Shadwick and fellow Sun member, drummer Gary Norwell, recorded some jazz tracks with fellow musicians Justin McCoy and Robert Luckey when local Point Five Studio offered them use of its facility during a free downtime.

As a nod to their luck in securing the studio, the musicians named the album Free Time, but it was not completed or released. Shadwick held onto the tapes, and revived work on the recording in 1984, with guitarist Billy Jenkins, and again in 2005, with guitarist Mike Wollenberg.

All About Jazz notes that Shadwick was motivated to finish the album in 2005, when he was diagnosed with mesothelioma, and completed the project in 2007, although it is unlikely that he lived long enough to see its official pressing, which was delivered to his home right around the time of his death. The album was produced and released by Candid Records in the UK.

The Special Edition of the Free Time CD is available in limited release through the Candid Records web site, with all proceeds benefitting Bart’s Mesothelioma Research. Cost is £9.99 plus shipping, which totals around $24 U.S.

SOURCE: myMeso › Shadwick CD benefits mesothelioma research

The blog, called the Cancerfighter’s Weblog, explores “alternative cancer therapies and ideas,” touching on a wide range of topics that also includes general health and wellness through alternative, holistic or natural medicines and practices. He encourages people like Charlene, who are trying non-traditional therapies, to share their stories and experiences with others, and provides a forum for people to ask questions.

John has another web site, Fighting Cancer: A Survival Guide, where he shares some personal stories of his and Bernadette’s life, and addresses topics including how to deal with a diagnosis of cancer, advice for caregivers, stories of good and bad experiences with alternative treatments, and good and bad stories about orthodox treatments.

An English teacher living in Hong Kong, John has authored textbooks for secondary school students, and also has written a number of other books on topics including Chinese folk religion, a profile of a famous Chinese gambler, and a touching biography about the life of his daughter, Stevie, who had Down Syndrome.

SOURCE: myMeso › Blog explores alternative cancer treatments

Some of you who are following Debbie on her journal have already heard the good news – on June 20, she learned that her tumor (which she wittily nicknamed Theo) has shrunk by 10 percent after the first of three scheduled chemoembolization treatments. She had her first treatment May 20, and the second June 20, when she learned Theo had gotten smaller.

According to www.radiologyinfo.org, chemoembolization is a combination of chemotherapy and a procedure called embolization to treat cancer, most often of the liver. According to the web site, catheter embolization is the deliberate introduction of foreign (”embolic”) material such as gelatin sponge or metal coils to stop bleeding or cut off blood flowing to a tumor or arteriovenous malformation.

Debbie traveled to Frankfurt, Germany, to have the procedure, which is still a trial, done by Dr. Thomas J. Vogl, Chairman, Department of Radiology, Department of Diagnostic and Interventional Radiology – University Hospital, Johann Wolfgang Goethe, University of Frankfurt am Main.

In this procedure, Dr. Vogl catheterizes the tumor and administers localized chemotherapy directly into the arteries feeding the tumor. Once the chemotherapy has been administered, other agents can be administered to block off the blood supply to the tumor.

Debbie’s description of the procedure is a little more colorful:

“A small incision will be made to expose the artery that feeds the tumour which is in the femour. A catheter is inserted and pushed up into the area affected. Embolization is a glue like substance which is put in to seal off the tumour and the chemo is then added and the whole area sealed off. The chemo is left to do its job. It is something like having a room with 2 doors, sealing off the back door and throwing in an explosive and sealing up the front door.”

One of the strangest things? The clinic where Debbie visits Dr. Vogl for these treatments is located on a street of the same name as her tumor’s nickname! Theodore Stern Kia 7. Visit Debbie’s blog to read all about her experiences with Dr. Vogl and this treatment. She even has photos of herself at the clinic.

Debbie points out that chemoembolization is not a cure for mesothelioma, but is thought to slow the growth of the tumor or reduce it, allowing the patient a longer life.

In conjunction with or following this treatment, Debbie will undergo a dendritic cell vaccine. According to the web site drugresearcher.com, dendritic cells – a part of the body’s immune system that detects foreign proteins in the body – can be used as vaccines by mixing them with genetic material from the patient’s tumour and infusing the treated cells back into the patient. The dendritic cells present the tumour antigens to the body’s white blood cells (T lymphocytes) for destruction.

SOURCE: myMeso › Debbie’s mesothelioma tumor shrinks!

This was the fourth time Jordan battled cancer. In the 1980s, he was diagnosed with leukemia lymphoma. About 10 years later, he was diagnosed with prostate cancer. He also had two battles with skin cancer. In 2000, Jordan wrote a book about his experience with cancer, titled “No Such Thing as a Bad Day,” which provided inspiration to cancer survivors.

He and his wife, Dorothy, founded Camp Sunshine, a nonprofit camp for children with cancer, and Camp Kudzu, a nonprofit camp for children with Type 1 diabetes. Jordan also founded the Georgia Cancer Coalition, a $1 billion organization funded by tobacco settlement money.

The Atlanta Journal-Constitution has published the following statement from Jordan’s family:

The Jordan Family greatly appreciates the overwhelming amount of love and support we have received from our friends during the many difficult years of Hamilton’s illness. We are saddened beyond words at his death, but we are also at peace knowing that he is finally comfortable after years of fighting an incurable disease. A truly unforgettable person, Hamilton will be remembered as a compassionate, brilliant, and selfless human being who touched so many lives with his limitless generosity.

In lieu of flowers the family asks that your donations be sent to any of the following charitable organizations:

The Hamilton Jordan Mesothelioma Research Fund at the University of Maryland-Baltimore Foundation, University of Maryland Greenebaum Cancer Center, 100 North Green Street, Suite 600, Baltimore MD 21201

Camp Sunshine, 1850 Clairmont Road, Decatur, GA 30033, enriching the lives of children with cancer through recreational, educational and support programs throughout the year

Camp Kudzu, 4279 Roswell Road, Suite 102, Box 254, Atlanta, GA 30342, providing education, recreation and peer-networking programs for children with diabetes

Community Advanced Practice Nurses, Inc., 173 Boulevard NE Atlanta GA 30312, offering free mental and physical healthcare to the homeless and medically underserved.

A memorial service for Hamilton Jordan, White House chief of staff during the Carter administration, will be held with family and close friends at 2 p.m. on Friday, May 23, at The Carter Center. Seating begins at 1 p.m. President Carter as well as other friends and colleagues over the years, will offer remarks and reminiscences. The event will not be open to press coverage.

SOURCE: myMeso › Hamilton Jordan, Pres. Carter’s chief of staff, dies of mesothelioma

The results are based on a study of 409 patients, mostly from the United Kingdom, which set out to assess the potential benefits of combining active symptom control, which usually involves steroid drugs and radiotherapy, with chemotherapy. Results showed no real benefit from adding the chemotherapy drugs compared with just treating the symptoms of the disease.

The BBC quotes one of the authors of the study, Dr Richard Stephens from the Medical Research Council Clinical Trials Unit, as saying, “While thousands are and will be affected by this deadly disease, our trial, which is one of the few large trials ever conducted in this disease, emphasizes how difficult mesothelioma is to treat. This is mainly because mesothelioma forms in the lining of the lung. This makes it hard to target.”

One chemotherapy drug, vinorelbine, was shown by the study to have some promise, but researchers do not think blanket chemotherapy treatment is a promising direction for treatment of mesothelioma, according to the Lancet report.

Researchers do not necessarily consider these findings to be bad news, as a study that defines what does not help can be beneficial to patient health because it helps reduce the chance that patients will undergo stressful treatments that are ineffective.

Results of a completely different chemotherapy study conducted by researchers at Duke Comprehensive Cancer Center were released May 18, revealing that chemotherapy given in conjunction with cancer vaccines may actually boost the immune system’s response to the vaccines, according to a report by ScienceDaily.

The Duke study focused on a drug used to treat lymphoma, but could have implications for clinical trials with vaccines being used to treat many cancers including lung cancer, brain tumors and colorectal cancer.

According to the FDA, it is the goal of cancer vaccine clinical trials not to prevent cancer, but to treat existing tumors. The idea is to train the person’s immune system to recognize the living cancer cells and attack them.

In July 2007, the American Association for Cancer Research examined the issue of cancer vaccines and, according to a report by Medical News Today, they found that “ongoing therapeutic cancer vaccine trials have yet to show evidence of vaccines spurring a patient’s immune system to shrink tumors – yet patients who receive these vaccines in trials tend to live longer and respond better to subsequent treatment.”

The full study, titled Cancer Vaccines: Moving Beyond Current Paradigms is available to read online at Clinical Cancer Research.

Full results of the Duke study will be presented May 31 at the American Society of Clinical Oncology meeting in Chicago, Ill.

SOURCE: myMeso › Mesothelioma and chemotherapy research

The American Lung Association explains that pulmonary fibrosis is also called interstitial pulmonary fibrosis or interstitial lung disease (ILD). These three terms are often used to describe the same condition.

ILD is not lung cancer; it is a chronic lung disorder. ILD involves a thickening of the lung tissue, which becomes stiff and makes breathing more difficult and demanding. ILD can take many forms, and may progress slowly or rapidly, depending on the individual and the nature of the ILD.

The Lung Association reports that the common link in ILD is that it begins with inflammation, which may affect different parts of the lung. Inflammation may lead to permanent scarring of the lung tissue, which is often called pulmonary fibrosis. The interstitum is the tissue between the lung’s air sacs. Scarring begins in this area, which lends the condition its formal name.

Known causes of pulmonary fibrosis include occupational and environmental exposures, including exposure to asbestos, which can damage the lungs and cause scarring (fibrosis).

Other possible causes include a disease called Sarcoidosis, side effects of medication, radiation, connective tissue or collagen diseases, or genetic predisposition, which is not as common. The familial form of the disease is often called familial idiopathic (of unknown origin) pulmonary fibrosis.

When I spoke with Admiral Coady, he mentioned that he did have a family history of pulmonary fibrosis. He knew that his family history, combined with his exposure to asbestos while serving in the Navy, put him at greater risk for the disease, and was vigilant about early screening. He did eventually develop the condition. Sadly, he also later developed lung cancer, although not mesothelioma.

Some ILD improves with medication if treated when inflammation occurs, and some people also need oxygen therapy as part of their treatment.

I hope this answers the questions and clears up any confusion. While pulmonary fibrosis is not related to mesothelioma, it could be considered an asbestos-related disease.

SOURCE: myMeso › Is pulmonary fibrosis linked to asbestos?

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

The Australian study, conducted by cancer research specialist Professor Julian Peto, was based on research into the lifetime occupations of 600 mesothelioma patients. Its findings were reported by the web site news.theage.com.au yesterday.

Peto predicts 30,000 Australians will die from mesothelioma between 2000 and 2050. He says the cause is exposure to both crocidolite asbestos (blue asbestos) and amosite (brown asbestos), which was used in building products in Australia and Britain until the 1980s.

According to the story on theage.com.au, Peto’s research reveals that Australia and the UK currently have the highest rates of mesothelioma in the world, with an estimated 600 cases per year in Australia and 2,000 in Britain, with numbers still rising.

Because I write this blog in the United States, I don’t talk as much about the looming global disaster asbestos poses. But it’s frightening, and it’s sickening, to see the effects of asbestos exposure just surfacing in communities around the world. I am afraid the coming suffering is unimaginable.

SOURCE: myMeso › Mesothelioma could kill 10% of Aussie carpenters

The House of Lords decision eliminated compensation for people diagnosed with pleural plaques after being negligently exposed to asbestos at work, the story reports. Pleural plaques are a scarring of the lungs causes by exposure to asbestos particles, and can be a precursor to asbestosis or mesothelioma.

In the past, workers received compensation for pleural plaques, and could also receive additional compensation if they later developed mesothelioma or asbestosis.

The story reports that several Members of Parliament (MPs), along with trade union groups, have called for Brown to review questions raised in the House of Commons earlier this year about this issue.

Brown is quoted as saying, “Asbestosis and mesothelioma are terrible diseases, and all of us who have seen the effects they cause know that we have to do more to help the victims of those diseases. On pleural plaques, we are looking at the matter at this very moment.”

Brown expects to publish a consultation document on the matter very soon, and will meet with delegations representing both sides of the issue.

SOURCE: myMeso › UK Prime Minister called to rule on pleural plaque

The study was based on the fact that because mesothelioma initially progresses on the surface of the pleura and peritoneum without forming masses, it has been difficult to diagnose at an early stage, so it would be useful to identify a tumor marker that would help in identifying it.

Researchers had previously identified N-ERC/mesothelin as a potential biomarker for mesothelioma. The recent study used a newly developed ELISA (enzyme-linked immunosorbent assay) system to gather data in clinical trials.

The report states that 102 healthy volunteers were recruited for the study, as well 39 patients diagnosed with mesothelioma, 53 patients diagnosed with diseases that should be distinguished from mesothelioma, and 201 subjects diagnosed with asbestos-related nonmalignant diseases.

The findings show that N-ERC/mesothelin is a “very promising tumor marker for mesothelioma, especially epithelioid mesothelioma.” Serum N-ERC/mesothelin levels showed that the median values from patients with mesothelioma were extremely high compared with levels from other patients.

Researchers participating in the study represented Juntendo University School of Medicine, National Organization Tokyo Hospital, Fukujuji Hospital, Hirano Kameido Himawari Clinic, Immuno-Biological Laboratories Co., Ltd., Hyogo Prefectural Tsukaguchi Hospital, Yokosuka Kyosai Hospital, St. Marianna University School of Medicine, and Tohoku University Hospital.

SOURCE: myMeso › Study may lead to early Meso diagnosis

SOURCE: myMeso › Today is Mesothelioma Day 2008 in the UK

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?