This is the second year the Meso Foundation has spearheaded the Today Show awareness effort. Festivities will kick off on Sunday, Sept. 25, at 6 p.m. with a gathering at Bill’s Bar and Burger Rockefeller Center. Meet the Meso Foundation staff and volunteers. Everyone who attends this event will receive an orange “curemeso.org” t-shirt to wear the next morning to attract attention of the TV crews.

Monday, Sept. 26, Meso Warriors will meet on Rockefeller Plaza at 5:30 a.m. ET. If you were not able to attend the meet and greet at Bill’s Bar and Burger on Sunday night, you can get your orange “curemeso.org” shirt from a Meso Foundation volunteer that morning. The foundation also will have a limited number of pre-made signs available. The show starts at 7 a.m. ET, but places on line in the Plaza cannot be held, so make sure to get there early to stand with the other Meso Warriors.

For more information, visit www.curemeso.org. You also can view a list of recommended Meso Awareness Day Hotels in New York City that are located close to Rockefeller plaza.

SOURCE: myMeso › Meso warriors will assemble on the Plaza for Mesothelioma Awareness Day

In addition to publishing the study, The Lancet prepared a podcast featuring an interview with Dr. Prezant. He said mong the priorities of this study was to ensure that it included every firefighter who was employed at the NYFD that was at 9/11, and also everyone who was employed as a firefighter at the NYFD. They examined data sets including what types of cancers the firefighters had, and where it was reported, and made sure that there were no duplications in the records to make sure no cancer was counted twice. They compared results among exposed firefighters, non-exposed firefighters and a similar general population, as well as the time period during which the screening was done to make sure screening methods were similar.

The study indicates an increased risk for the development of all cancers, combined, in firefighters exposed to the toxic dust, smoke and fumes at the Ground Zero site on 9/11, Dr. Prezant said. He said data shows a 19 percent increase for WTC-exposed firefighters, compared to non-exposed firefighters.

Listen to the podcast.

SOURCE: myMeso › Listen to an interview with lead author of NYFD cancer study

The legislation was signed into law in January, and and established a $2.8 billion federal fund that is supposed to provide health care and compensation for people who were sickened following the 9/11 attacks on the World Trade Center as a result of their exposure to dust and debris at and around the site. The legislation may cover first responders, as well as workers who helped clear the site in the days, weeks and months following the terrorist attack.

However, cancer was excluded as a covered condition. The exclusion was announced in July, following a review by the National Institute for Occupational Safety and Health (NIOSH), which said there was “too little scientific evidence linking cancer to time spent amid the dust and wreckage.”

This, despite research that indicated from the beginning that the dust resulting from the burning and collapse of the World Trade Center buildings contained such known carcinogens as dioxins and polycyclic aromatic hydrocarbons, as well as asbestos, which is linked to the development of mesothelioma.

With the release of new data gathered with the added perspective of time, there is a call for further review of the policies governing the compensation fund, to expand coverage for cancer. Many believe incidences of cancer linked to WTC site exposure will only increase as more time passes. Researchers note that “many cancers, including mesothelioma and other malignancies related to the known toxins found at Ground Zero, can take decades to develop,” according to a Huffington Post report.

Fred Blosser, a public affairs officer with NIOSH, told the Huffington Post the agency will review the new studies, and plans to conduct a second periodic review in early to mid-2012.

George Wong, a police officer who worked at the World Trade Center site during 9/11,  died recently after a 2-year battle with gastric cancer. On his death certificate, doctors  listed the cause of death as “9/11 toxins,” but the New York health department still maintains there is no conclusive link between illnesses and 9/11 toxins. His cause of death was questioned by the medical examiner, and the City took the officer’s body for further examination following his wake. Watch the video.

SOURCE: myMeso › People exposed to toxins at WTC site during 9/11 call for cancer coverage

According to The Lancet, “Respiratory illnesses and post-traumatic stress disorder are known to be increased in those who survived the World Trade Center disaster, but data reported in this issue show that 9 years after the attacks, rescue and recovery workers continue to have substantial physical and mental health problems.”

While it is too early yet to find evidence of increased mortality among these workers, the research indicates that “An excess of cancer cases is reported in firefighters who survived the disaster..” according to The Lancet.

The study, titled “Early assessment of cancer outcomes in New York City firefighters after the 9/11 attacks: an observational cohort study” was published in Volume 378, Issue 9794 of The Lancet. Researchers studied cancer incidence and its potential association to exposure of New York City firefighters to known and suspected carcinogens at Ground Zero. The study examined the effect of these possible carcinogens on FDNY first responders in the first 7 years after 9/11/01.

According to the report, the study included 9,853 men who were employed as firefighters on Jan. 1, 1996. Researchers determined that “on and after 9/11, person-time for 8,927 firefighters was classified as WTC-exposed; all person-time before 9/11, and person-time after 9/11 for 926 non-WTC-exposed firefighters, was classifed as non-WTC exposed.” Explaining their methods, researchers state in the report, “We estimated the ratio of incidence rates in WTC-exposed firefighters to non-exposed firefighters, adjusted for age, race and ethnic origin, and secular trends, with the US National Cancer Institute Surveillance Epidemiology and End Results (SEER) reference population.”

In its Findings summary, the report concluded that cancer incidence in firefighters exposed to toxins at the World Trade Center was about 1 in 10, while cancer incidence in the general male population in the U.S. was about 1 in 19. This incidence among the non-WTC-exposed firefighters also was about 1 in 19. This leads researchers to believe there is a “modest excess of cancer cases in the WTC-exposed” group.

However, researchers also caution that there has been a relatively short time period since the events of 9/11 and the exposures, while many cancers, such as mesothelioma, may have long developmental periods. They recommend continued follow-up including cancer screenings and prevention strategies.

Read the full FDNY post-9/11 cancer assessment.

The Lancet has a full report on the events of 9/11 in this special section.

SOURCE: myMeso › Studies continue to show increased cancer risk for 9/11 first responders

The study included 12,781 workers who were present at the WTC site between Sept. 11, 2001 and Sept. 24, 2001, which is 91.6 percent of the workers that were present. The report notes that the event exposed the workers – as well as those living and working in the surrounding area – to a dense cloud of pulverized building materials and chemical byproducts, including pulverized glass and cement, insulation fibers including asbestos, and toxic chemicals.

According to a report in The New York Times that summarizes the study findings, this is the first study to document long-term harm in a large group of firefighters and emergency medical workers who worked at Ground Zero. All of the subjects of the study had had previous lung function tests, providing a baseline for the study.

The study was authored by Dr. David J. Prezant, chief medical officer in the Office of Medical Affairs at the New York City Fire Department. The study was approved by the institutional review board at Montefiore Medical Center.

Results of the study revealed that firefighters, who had heavier exposure to dust by the nature of their work had greater first-year declines than EMS personnel, especially for firefighters who were present in the morning on 9/11, when the dust cloud was most intense after the buildings fell. However, researchers noted they were surprised to see “little or no recovery of average lung function during the 6-year follow-up period.” In fact, they noted continued decline in lung function among the study groups.

Normally, the study notes, “smoke inhalation during firefighting causes relatively mild and reversible respiratory impairment.” Additionally, according to the report, long-term effects of firefighting on pulmonary function also are normally mild.

The average loss of lung function for 9/11 rescue workers is about 10 percent. Most of the loss occurred within the first year after 9/11 exposure, with little or no subsequent recovery.

Thousands of workers injured at Ground Zero have been fighting for compensation from the City of New York. Last month about 10,000 plaintiffs reached a settlement agreement totaling $657.5 million, but a judge rejected the settlement shortly afterward, saying it did not provide enough compensation for the plaintiffs. The matter is now back in negotiations, and a new hearing is set for Monday, according to the Times.

SOURCE: myMeso › Study reveals persistent, significant reduction in lung function for 9/11 responders, workers

The settlement agreement has been in the works for about two years, taking place among a great deal of confusion and disagreement about the city’s responsibility for injured workers. The city had claimed it was immune because injuries occurred during a national emergency or civil defense situation. However, injured workers and their families argued they were employed by the city and entitled to compensation as they would be for any injury incurred on the job.

According to the Times report, 95 percent of the plaintiffs in this case must accept the terms of the settlement for it to take effect. Each plaintiff’s case will then be examined individually to determine how much compensation that person will receive, which lawyers estimate could run anywhere from a few thousand dollars to as much as $1 million. Individual compensation will depend on the severity of illness and level of exposure to contaminants at the World Trade Center site.

A variety of health screening and tracking programs were established in the days and months following the September 11 tragedy. Workers and others who simply lived and worked near the disaster site began complaining of a variety of illnesses, especially respiratory problems. There is an official World Trade Center Medical Monitoring and Treatment Program, as well as studies conducted by the New York Fire Department and other organizations.

Some health problems presented immediately following exposure to the site, such as respiratory distress, while others are only just showing up in those who worked at the site. It is now known that the Ground Zero site was contaminated with asbestos at levels at least two times higher than the Environmental Protection Agency’s “safe” level. Because of the long latency period between exposure to asbestos and the development of mesothelioma – an average of between 10 and 50 years – the true effect of asbestos exposure may not be known for years to come.

Some of the plaintiffs involved in the current settlement are not yet ill, but fear they will develop illnesses in the future as a result of their exposure to the toxins like asbestos. According to the Times, the settlement provides a $23.4 million insurance policy to cover possible future claims.

SOURCE: myMeso › 9/11 rescue, cleanup workers reach health care settlement with City

Debbie provided a link to a story published in November 2009 by ABC News that outlines the work of specialists at Austin Health Centre in Victoria. The treatment, spearheaded by Dr. Malcolm Feigen, a radiation oncologist at the Centre, uses high doses of radiotherapy, concentrated on specific areas of the lining of the lungs to target mesothelioma tumors.

According to the ABC report, 13 patients participated in a pilot program to test this new targeted radiotherapy treatment. Most had some surgery prior to the radiotherapy treatment, and some also had chemotherapy before or after the treatment, although Dr. Feigen believes the patients showed the most benefit primarily as a result of the radiotherapy regimen.

Participants in the U.S. clinical trial at the Mesothelioma Center receive a multi-modality therapy that incorporates surgery, chemotherapy and radiation therapy in combination.

Listen to the interview with Dr. Feigen about the Australian research, which was broadcast on ABC’s AM morning current affairs program.

SOURCE: myMeso › Australian doctor researching radiotherapy for treatment of pleural mesothelioma

According to the Times, the language is even more precise, calling for coverage for “individuals exposed to environmental health hazards recognized as a public health emergency in a declaration issued by the fedearl government on June 17.” This declaration and date, of course, coincides with the U.S. Environmental Protection Agency’s designation of Libby as a Public Health Emergency area.

The Times quotes Baucus as saying the language is not only intended for the people of Libby, but for anyone in the future whose town is affected by a similar tragedy that affects the health and well-being of its people. He said the legislation would provide a safety net to “help people when they need it most.”

Both the U.S. House of Representatives and the U.S. Senate passed their versions of the health care reform bill last year. It is now up to the 111th Congress as a whole to reconcile the two bills so that they may be presented to President Obama for his signature.

Congressional leaders say they hope to accomplish this by the end of January.

SOURCE: myMeso › Baucus inserts coverage in health care bill for those affected by Libby asbestos

A CBS News investigative report spoke with individuals and families coping with this second disaster, a disaster that robs them and their loved ones of health and quality of life. Rescue workers, very few wearing any type of special gear, toiled day after day in dusty clouds of toxins including asbestos, jet fuel, mercury, lead and pulverized cement and glass. According to the CBS News report, health officials say such multi-chemical exposure as these workers experienced is “unprecedented.”

A variety of health screening and tracking programs were established in the days and months following 9/11/2001, when workers and even people who simply lived and worked near the disaster site began complaining of a variety of illnesses, particularly respiratory distress. To date, according to the CBS report, about 43,000 people have been physically screened for 9/11-related health issues, 28,000 are participating in the official World Trade Center Medical Monitoring and Treatment Program, and an additional 18,000 people in a similar program operated by the New York Fire Department.

Many 9/11 responders are angry, saying they have to wade through mounds of regulations, restrictions and other roadblocks to fight for access to care and compensation. Many who die are not classified as technically having died “in the line of duty,” and their families are denied those benefits.

Physicians say it is difficult to definitively link health conditions to 9/11 exposures because of the wide variety of toxins present on the site, and the varying levels of exposure among workers to amounts and types of chemicals and other substances. Some trouble signs presented immediately, such as respiratory distress, while others, such as immune system cancer multiple myeloma, and colon cancer, are now showing up in responders age 45 and younger.

Some diseases could take even longer to develop. Mesothelioma, a deadly cancer that affects the lining of the lungs, abdomen and/or heart, is a result of asbestos exposure. It is now known that the 9/11 site was contaminated with asbestos at levels at least two times higher then the EPA’s “safe” level. The latency period for mesothelioma averages between 10 and 50 years, so the effect of this asbestos exposure may not be known for years to come.

How tragic that one of the most tragic days in recent American history should be borne the hardest by those who were bravest, those who dedicated their lives to caring for their fellow man, who rushed into the danger zone while others rushed away. My heart goes out to these brave souls, and I pray that they are not forgotten.

There is a link below to the comprehensive CBS News report about this. There is a wealth of information at this site, including video interviews with 9/11 responders, medical reports about 9/11 health issues, and links to resources and information about World Trade Center responder health programs and studies. I urge you to add a comment at the CBS web site voicing your support for more programs to help these brave folks.

Source: CBS News

SOURCE: myMeso › As we remember 9-11, the disaster’s first responders suffer from toxic exposure

Today I heard from two people who are looking for ways to help raise awareness of mesothelioma and funds for research. One lives in California and the other in New York. If you know of any events in these areas in the coming weeks, please email us at myMeso – you can just click that green “Contact Us!” button on the home page, or you can email me directly at wendi.lewis@beasleyallen.com.

Also, if you send us information about an event, please include information about where the proceeds will go (either to an individual or an organization) and let us know how people can donate even if they cannot attend the event. Many people in the meso community will still want to help, even if they aren’t able to travel to your area to participate.

I look forward to helping you get the word out about your mesothelioma awareness event!

SOURCE: myMeso › Please let us know about your mesothelioma events!

The ad references fire alarms, most likely referring to a Feb. 13, 1975 fire that broke out on the 11th floor of the North Tower. But it hits a little too close to home after the events that would take place a little over 25 years later.

On the anniversary of the 2001 tragedy last year, we discussed the ongoing studies being conducted by the New York City Department of Health and Mental Hygeine on the effects of exposure to the dust released in the catastrophe. The study included close to 5,000 samples of airborne asbestos collected by the EPA in lower Manhattan between Sept. 11, 2001 and Jan. 22, 2002, many of which exceeded “safety” standards.

It is ironic that the ad for asbestos prominently features the tag line “when life depends on it, you use asbestos.”

In 1981, the asbestos industry was already under scrutiny for the link between asbestos and mesothelioma, a deadly cancer that affects the lining of the lungs, and sometimes the stomach and/or heart. Most recent studies by the National Cancer Institute show that people with even brief exposure to asbestos are at risk. There is no “safe” level of asbestos exposure.

We recently have added a petition to this site urging the U.S. Congress to finally support a total ban of asbestos in the United States, and to provide funding for mesothelioma research. Please sign the petition, and add your voice to this fight.

The New York State Department of Health has been collecting information about deaths among World Trade Center responders, recovery workers and volunteers since shortly after the tragedy.

As of June 2008, the program had identified 382 people who worked at the WTC site who had passed away, and confirmed 204 causes of death, including 30 deaths resulting from respiratory and intrathoracic organ disease. In an updated report released in December 2008, the number of deaths of people who worked at the WTC had jumped to 713 people, with 548 confirmed causes of death. The number of deaths attributed to respiratory and intrathoracic organ disease is noted at 56, accounting for 14.1 percent of the deaths.

Of course, these numbers are general, and not specifically linked to asbestos inhalation, but the report does note that 30.2 percent of the confirmed causes of death of people who worked at the WTC are releated to “exposure to harmful substances or environments,” and 27.3 percent specifically related to “ingestion of substance.”

SOURCE: myMeso › Creepy ad touts benefits of asbestos, features photo of WTC

The 5k Walk for Hope was established in 2006 by Janice Malkotsis, who lost her father, Joseph Lombardo, to mesothelioma in 2005. Mr. Lombardo was diagnosed with peritoneal mesothelioma in 2004 and his family suffered with him as they watched him lose his fight to this deadly cancer, caused by exposure to asbestos.

Janice says she promised her father in his final weeks that she would work to educate people about mesothelioma, which is still largely unknown and unreported in the United States. Through MARF, Janice partnered with Erica Iacono, who also lost her father to mesothelioma, and the two created the 5k Walk for Hope. Together, they’ve raised nearly $50,000 for mesothelioma research through this event. They also are sponsored by Joe Fox of Belluck & Fox, LLP, who represented Mr. Lombardo before his death.

The 5k Walk for Hope will be held at Eisenhower Park in East Meadow, NY, with sign-in at 9 a.m. and the the walk beginning at 10 a.m. Registration is $15. Download the online registration form.

If you are unable to attend the walk, but would like to support this effort, you can send a donation that will go to MARF. The Mesothelioma Applied Research Foundation is the nonprofit collaboration of patients and families, physicians, advocates and researchers dedicated to eradicating the life-ending and vicious effects of mesothelioma.

You can send your donation to the following address:

5k Walk for Hope
c/o Janice Malkotsis
130 Taft Avenue
Merrick, NY 11566
(checks should be payable to 5k Walk for Hope)

SOURCE: myMeso › Walk for Hope this weekend!

Hundreds have died in Libby as a result of exposure to asbestos, suffering a number of serious asbestos related diseases including asbestosis, a serious scarring of the lungs, and mesothelioma, a deadly cancer that affects the lining of the lungs and/or the abdomen. In 1999 an investigation revealed widespread asbestos contamination in Libby, and the Environmental Protection Agency began an effort to clean up the town, which continues today.

The story is receiving coverage from a number of media sources. The New Yorker called this the “most significant environmental criminal trial in American history.”

Early on, Judge Donald Molloy sparked anger in Libby residents when he ruled that victim witnesses would not be allowed to sit in on the trial. Regular myMeso reader and contributor Mike Crill, a longtime resident of Libby who has lost several family members to asbestos disease and suffers from asbestosis himself, was quoted in the Montana Kaimin when he and other Libby residents staged protests outside the courthouse.

The Kaimin quotes Crill as saying, “So much for freedom of speech, huh? Especially when you’re the victims and you’re being told that you’re not the victims.”

There is a great blog site by writer Tristan Scott, who also is doing a comprehensive series on the trial for The Missoulian, that is detailing the goings on at the Grace criminal trial. The blog, Cops and Courts, which bills itself as a “criminal justice blog” even has transcripts from court proceedings.

The Missoulian also has a special site set up with lots of archival information about W.R. Grace and Libby, Montana, as well as facts about asbestos, vermiculite mining and more. The site includes videos and slideshows as well.

Photo courtesy of Cops and Courts blog.

SOURCE: myMeso › Update as Grace trial continues

Recorded with literally his last breaths, the video deposition names the Big Three automakers, along with specific brake manufacturers, accusing them of marketing “unreasonably dangerous” products and failing to warn people about the asbestos danger inherent in the products, the Herald reports. According to the paper, Ferrell worked on automobiles as a young man, and it is suspected he inhaled asbestos fibers while working on brakes.

Ferrell, who was listed among the country’s top 100 attorneys in 2006, began suffering what his wife described as “flu-like symptoms” about two years ago, the Herald reports. He was diagnosed with mesothelioma in Spring 2008 and had his left lung removed in May. But the cancer spread to his brain, stomach, hip and his right lung. He rejected pain medication on his deathbed in order to record his deposition, according to the Herald.

Among his achievements, he founded his own firm, Ferrell Law, with offices in Miami and New York. Active in Democratic politics, he was a major fundraiser for President Bill Clinton and served as John Kerry’s Florida finance chairman in 2004 during Kerry’s bid for the White House.

Funeral services are set for Friday, Nov. 21, at 11 a.m. at Trinity Episcopal Cathedral in Miami. The family requests in lieu of flowers that donations be made to the International Mesothelioma Program at Brigham and Women’s Hospital in Boston. Ferrell is survived by his wife Lori, son Morgan and daughter Whitney.

SOURCE: myMeso › Democratic powerhouse Ferrell lobbies against asbestos while dying of mesothelioma

The report is the result of collaborative research conducted at the Brander Cancer Research Institute and the Department of Pathology at New York Medical College, in conjunction with the drug manufacturer, Alfacell.

The new study provides further evidence of the impact ONCONASE has on the RNAi mechanism, said Alfacell CEO Kuslima Shogen in a company news release. Shogen said it also provides evidence as to why ONCONASE helps sensitize cells to other antitumor agents.

According to the release, “The study demonstrated that silencing the glyceraldehyde 3-phosphate dehydrogenase (GAPDH) gene (an abundant and ubiquitously expressed housekeeping gene) in human lung adenocarcinoma A549 cells by siRNA was effectively prevented by ONCONASE. While transfection of cells with GAPDH siRNA reduced expression of this protein by nearly 70 percent, the expression was restored in the cells exposed to ONCONASE for 48 or 72 hours. The data thus provide evidence that one of the targets of ONCONASE (ranpirnase) is siRNA.”

Results of ONCONASE Phase III clinical trials, “demonstrate significant efficacy in patients with malignant mesothelioma that failed prior chemotherapy,” according to Alfacell information. The drug utilizes a proprietary ribonuclease (RNase) technology that targets cancer cells while sparing normal cells.

SOURCE: myMeso › Report supports ONCONASE as effective treatment for mesothelioma, tumors

Charlene believes she developed mesothelioma as a result of exposure to asbestos in materials used in household renovations and repairs when she was a child.

In January 2008, in her first visit to the clinic, she underwent an 8-week treatment called Immuno-Augmentation Therapy (IAT). Upon returning home, she administers her own vaccines several times a day, and continued a twice-daily intravenous vitamin C program with the help of a nurse friend. She has since cut back to once a week for the IV treatment.

In June, just after her 49th birthday, Charlene had her first CT scan since beginning the alternative medicine therapy, at her regular doctor at her home in New York. The tumor had shrunk by half! Also, her pleural thickening was reduced and her pleural effusion was gone.

Charlene undergoes CT scans about every four months at her physician in New York state, to check on the progress of her treatment, and returns to the ITL Clinic about every four months for a “tune-up.” This process involves drawing blood to see how patients are responding to the vaccines, and adjusting the shots. Each tune-up visit lasts two weeks.

She returned to ITL after the first good report, and was thrilled when her next check-up in New York, which she had last week, showed continued progress. The scan showed more shrinkage of the primary tumor mass, while everything else remains stable.

Charlene is thrilled with her results, and her choice to pursue an alternative treatment that many people greeted with skepticism.

“There are people that do it traditionally, and others choose something different,” Charlene says. “They say the psychological part is more than 50 percent of the battle. Everyone is different. You have to make a choice for you, to do what you believe in for yourself. Of course, sometimes the cancer is too strong. But when you believe in your decision, it makes it a lot easier to face the challenge.”

SOURCE: myMeso › Another good report for Charlene!

According to the New York City Department of Health and Mental Hygeine, the EPA collected and analyzed close to 5,000 samples for airborne asbestos in lower Manhattan between Sept. 11, 2001 and Jan. 22, 2002. Thirty-one of the samples collected prior to Sept. 30, 2001 indicated asbestos in excess of the Asbestos Hazard Emergency Response Act (AHERA) standard, as did four other samples collected on four other dates during the testing period.

At the time, the health department assured the public that they did not expect brief exposures to low levels of airborne asbestos to create long-term health effects.

However, the National Cancer Institute states that people with only brief exposure to asbestos are at risk for the development of asbestos diseases including asbestosis and mesothelioma. They cite a study titled Environmental Health Perspectives, published in 2006, that examined results of a five-year assessment of the health of workers. Results of the program, called the World Trade Center Worker and Volunteer Medical Screening Program, noted that nearly 70 percent of World Trade Center rescue and recovery workers suffered new or worsened respiratory systems while performing work at the WTC site.

In 2002, the Center for Disease Control’s Agency for Toxic Substances and Disease Registry and the New York City Health Department established the World Trade Center (WTC) Health Registry, hoping to monitor the health of those exposed to the WTC disaster. The program plans to follow up with enrollees for the next 20 years, and will examine both physical and mental health.

The Registry includes 71,437 participants, including rescue and recovery workers, Lower Manhattan residents, area workers, commuters and passerby. The voluntary program was open to anyone who lived, worked or went to school in the area of the WTC disaster, or were involved in rescue and recovery efforts. It is the largest public health registry in U.S. history, but registered particpants still only comprise about 17.4 percent of the people who would have been eligible to participate, program officials estimate.

According to the report, released yesterday, half the registrants reported being in the dust cloud from the collapsing towers; 70 percent witnessed a traumatic sight; and 13 percent sustained an injury that day. The reports says 3 percent of all adults in the program reported they have developed new asthma, 16 percent had post-traumatic stress disorder, and 8 percent have severe psychological distress.

The report finds that first responders – rescue and recovery workers who worked on the debris pile – have the highest rate of new asthma, at 6 percent.

Additionally, examining the health of participants two to three years after the event revealed 3 percent of Lower Manhattan adult residents and workers had developed asthma – twice what is believed to be the baseline rate of development of asthma over that period.

The Health Department has issued a follow-up survey that examined program participants’ health issues five to six years after the 9/11 attack, and expect to release those findings in the next few months.

Additionally, since the attacks of Sept. 11, the New York State Department of Health has been collecting information about the deaths among World Trade Center responders, recovery workers and volunteers – no matter how or why the death occurred – through its World Trade Center (WTC) Responder Fatality Investigation. It is hoped the data will help track and identify all fatalities and allow the department to analyze the root causes.

As of June 2008, the program has identified 382 people who worked a the WTC site and have since passed away, and has confirmed 204 causes of death. The report states that 30 of those people have died of respiratory and intrathoracic organ disease, making up 19.4 percent of the overall confirmed deaths. Twenty-six of the deaths, or 16.8 percent, were specifically related to lung disease.

SOURCE: myMeso › Mesothelioma lingering concern at Ground Zero

It is hoped the new treatment will replace or delay the need for the standard treatment in these cases, a pleural pneumonectomy, which involves removal of the lung and which can be extremely debilitating to patients.

According to a press release from the medical center, Dr. Robert Taub, the study’s principal investigator, director of the Mesothelioma Center at NewYork-Presbyterian/Columbia and professor of clinical medicine at Columbia University College of Physicians and Surgeons, says, “Current surgical and chemotherapy treatments of patients with malignant pleural mesothelioma are unsatisfactory, and have not been shown to significantly prolong survival. In this study, we will investigate whether a combination of chemotherapy and radiation targeted directly at the lung’s lining can improve outcomes while avoiding surgery. In addition, this approach has shown to have minimal toxic side effects compared to systemic chemotherapy.”

The Mesothelioma Center is the only one nationwide that is offering this experimental therapy to treat pleural mesothelioma.

The study is being conducted at the Mesothelioma Center within the Herbert Irving Comprehensive Cancer Center at NewYork-Presbyterian Hospital and Columbia University Medical Center. According to the release, participating patients will receive several rounds of targeted chemotherapy using the drugs cisplatin and doxorubicin via surgically implanted catheters. Some patients will be randomly selected to receive additional systemic (intravenous) chemotherapy using the drugs cisplatin and pemetrexed. All patients will receive targeted radiotherapy using the P-32 radioisotope.

Patients may elect to receive additional surgical treatment, including removal of the affected lung lining or lung. Subsequently, patients will be offered outpatient systemic chemotherapy with cisplatin and pemetrexed.

For more information, visit www.hiccc.columbia.edu.

SOURCE: myMeso › Clinical trial for mesothelioma at NY hospital

The author points out that celebrities like Patrick Swayze, who has pancreatic cancer, and Sen. Ted Kennedy, who has a brain tumor, are shown smiling, waving, even sailing off into the sunset – quite literally in Kennedy’s case – as they assure the public that they’re going to “beat” cancer.

This constant emphasis on maintaining a positive outlook is meant to encourage other cancer patients, to inspire them, to give them hope for the future. But sometimes it can have just the opposite effect, Hoffman says in the article, putting pressure on them to hide their fear, anger, resentment and exhaustion. They feel guilty, like they are letting people down when they show their true feelings.

The author talks to cancer survivors, doctors, social workers and psychologists about this culture of enforced hope. Read the full article, titled “When Thumbs Up Is No Comfort,” and let me know what you think. Has this happened to you? Do you struggle with this issue? When does encouragement cross the line and push you in the opposite direction, leaving you feeling bitter?

SOURCE: myMeso › The pressure to be positive

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

NEW YORK VOLUNTEER CHAPTER OF MESO FOUNDATION HOSTS THIRD ANNUAL5K WALK FOR HOPE

MERRICK, NY: The New York Volunteer Chapter of the Mesothelioma Applied Research Foundation (Meso Foundation) will hold the third annual “5K Walk for Hope” on April 13, 2008 at 10am in Eisenhower Park, located in East Meadow, NY. Over the past two years, the event has raised more than $30K and the volunteer team hopes to build on that success. All proceeds will go to the Meso Foundation, a 501 (c) (3) organization that has awarded more than $5 million in grants for mesothelioma research since 2000.

Mesothelioma is an extremely rare cancer caused by exposure to asbestos and most often affects the lungs, although it can also invade the stomach and groin areas. In the United States, 2,500 to 4,000 patients are diagnosed with mesothelioma annually, yet the disease has yet to find the national spotlight for research and funding.

The 9/11 tragedy in New York City demonstrates the continued, long-term threat of mesothelioma. Estimates of the amount of asbestos destroyed in the terrorist attack in Manhattan range as high as 1,000 tons. The impact pulverized this asbestos into tiny, microscopic fibers to which the firefighters, rescue workers, and other heroes of 9/11 were exposed, as well as workers, residents, and school children who returned to the area in the weeks and months following.

After mesothelioma’s long latency period, which is 15-50 years, the risk of cancer among those most heavily exposed could reach as high as one in ten. This year alone has seen the number of reported cases of illness and death of Ground Zero workers increase and unfortunately that number will only continue to rise, which is why more research is needed.

Registration for “5K Walk for Hope” is $15. Those who are interested in participating should contact Janice Malkotsis at (917) 751-2776. For more information about The Meso Foundation, please visit www.curemeso.org.

SOURCE: myMeso › Meso Foundation NY chapter Walk for Hope

When Charlene Kaforey, 48, was diagnosed with pleural mesothelioma in July 2007, she immediately began seeking out information and treatment options.

The prognosis for mesothelioma is still bleak. There is no cure, and most studies estimate survival time between 4-12 months, depending on the stage of presentation. Charlene’s mesothelioma was diagnosed relatively early, so she was hopeful.

She visited mesothelioma specialist Dr. David J. Sugarbaker at Brigham & Women’s Hospital in Boston, Mass., Dr. Valerie W. Rusch at Memorial Sloan Kettering Cancer Center in New York, and Dr. Harvey Pass at the NYU Cancer Institute.

Immediately, doctors talked about extrapleural pneumonectomy, a surgery to remove the entire lung, entire diaphragm, and the lining of the chest cavity and the heart. Surgery would be followed by 6 weeks of radiation, and possibly chemotherapy. One doctor even talked about performing a heated chemotherapy wash of the chest cavity while on the operating table. At that time, they believed Charlene was a stage I, and such surgeries could give her a 40 percent chance of a 5 year survival. One doctor mentioned getting her as much as 10 years.

One of the doctors talked about limiting the surgery to a pleurectomy/decortication, a technique to remove the parietal pleura from the lung. The median survival after pleurectomy for malignant mesothelioma ranges from 6-21 months, and 9-40 percent of patients survive up to 2 years. However in later stages, the survival rates are almost identical between the two surgeries.

Research is still unclear as to whether extra-pleural pneumonectomy provides significantly greater benefits than pleurectomy, and if either is significantly more effective than non-surgical options.

Charlene didn’t have a lot of tumor bulk, so she was sent for a mediastinoscopy, a biopsy surgery that allows doctors to view the middle of the chest cavity and to remove lymph nodes from between the lungs to test them for cancer or infection. They found that Charlene did have lymph node involvement.

“I went from a Stage I to Stage III overnight,” she says. “It was shocking.”

Because of the lymph node involvement, doctors recommended she postpone considering pleurectomy or pneumonectomy and undergo chemotherapy. Survival rates from either surgery for a Stage III patient is much less, and only 25 percent survive 20 months, with less than 10 percent surviving 5 years. Both surgeries involve significant mortality rates and require 6-9 months recovery time.

“Looking at it now, I feel in some ways that having the lymph node involvement was a godsend for me,” Charlene says. “I mean, my condition was more serious, but because I was doing the chemotherapy, it gave me time to look for more information and to really think more about my options. Otherwise, I would have rushed into a very serious surgery with a long, difficult recovery and I’d probably be without a lung and diaphragm right now.”

Charlene offers one word of caution to meso patients.

“While you may feel time is of the essence, don’t rush into a procedure until you really understand what is involved, and what benefits you can expect to receive, what the risks and complications are, how long and difficult the recovery will be,”she said.

She talked to other meso patients and read everything she could get her hands on. Quality of remaining life is a big issue to consider.

“I realized that I might have only 18 to 30 months maximum to live, and that I would spend at least 9 months in a brutal recovery. I was feeling good with little to no symptoms. I couldn’t justify giving up my good health to surgery, knowing I may never feel good again, and might have only another 9 months of poor quality life after recovering from the surgery,” Charlene says.

Next: Charlene explores alternative medicine

SOURCE: myMeso › Living with Meso – Charlene’s story, Part 2

The Newsday.com article mentions that Reeve worked at a morgue in the toxic dust of Ground Zero following 9-11.

While her death has not been officially linked to exposure to materials released from the collapsing buildings, there is a great deal of study about the link between the disaster and mesothelioma and other asbestos-related diseases, which affect many of the immediate responders and those who worked on the site in the many days and months afterward.

Today, the official New York City Fire Department web site has the story:

EMS officers, paramedics and EMTs attended the plaque dedication for Paramedic Deborah Reeve on March 11 at EMS Station 20 in the Bronx. Paramedic Reeve died of mesothelioma (lung cancer) on March 15, 2006. “This loss was a great blow to the members of this EMS station, the Department and the City of New York,” said Fire Commissioner Nicholas Scoppetta. “But we hope this ceremony will serve as a reminder to her family that we understand your pain has not diminished and your loss has not been forgotten.” Paramedic Reeve served with the EMS Command for 17 years before her death. She was remembered as smart, hard working and an outstanding paramedic. “She was the strongest person I ever met,” said Reeve’s husband, Paramedic David Reeve, also of Station 20. He recalled how they met at the EMS Training Academy, when she sat behind him in class and made fun of his southern accent. He was joined at the ceremony by their children, Elizabeth, 12, and Mark, 8. “All new members should try to model themselves after Debbie – the commitment and dedication she showed every day,” said Chief of Department Salvatore Cassano. Chief of EMS John Peruggia read the poem “She is Gone” in Paramedic Reeve’s memory, saying it emphasized “the importance of remembering Debbie, who gave so much to this city.” The plaque was unveiled to cheers and tears from her family, friends and fellow EMS personnel. It will be hung at EMS Station 20, located at Jacobi Medical Center in the Morris Park/Pelham Parkway section of the Bronx. “She was an excellent, outstanding paramedic … she really knew her stuff,” said Captain Felipe Periu of Station 20.

SOURCE: myMeso › FDNY honors Paramedic Deborah Reeve