I’ve posted about several mesothelioma fund-raising and awareness events during the past month, happening in places like Texas, New York, Florida and Pennsylvania. Activities have ranged from bike rides to walks and even a bowl-a-thon. Proceeds from these events have gone toward mesothelioma research, through the Mesothelioma Applied Research Foundation (MARF), or will benefit an individual, like Shanna Kurtz, in her personal battle against mesothelioma.

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!

A friend recently forwarded me a link to a web site that features an ad touting the wonders of asbestos for fire protection, highlighted by a photo of the World Trade Center’s twin towers. The ad was produced in 1981, so it’s not a matter of bad taste, just creepy in light of the September 11 disaster, and ironic because the presence of asbestos in the towers has been a source of health problems for the disaster’s first responders, among the many dangerous toxins released when the buildings collapsed.

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.”

If you live in the area of East Meadow, New York, on Long Island in Nassau County, there is still time to register for the Fourth Annual 5k Walk for Hope, which is set for this Sunday, April 19. The event will raise funds for the Mesothelioma Applied Research Foundation (MARF) and raise awareness of mesothelioma and the dangers of asbestos.

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)

The criminal trial against W.R. Grace & Co. is continuing this week at the Russell Smith federal courthouse in Missoula, Montana. The company, along with former company officials, are charged with conspiracy, obstruction of justice and knwoing endangerment of the Clean Air Act. The government says Grace knew its vermiculite mine in Libby, Montana, produced dangerous asbestos that put the health of its workers and the nearby townspeople at risk.

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.

As he lay dying of mesothelioma in a Miami area intensive care unit, successful attorney, Democratic Party activist and philanthropist Milton M. Ferrell, Jr., recorded a video deposition against asbestos manufacturers, according to a report in the Miami Herald. Ferrell passed away just a little over 15 hours later, on Saturday, Nov. 15.

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.

A report recently published in Cell Cycle supports the preferential effectiveness of ONCONASE toward tumor cells, and underlines the effectiveness of the drug in treating malignant mesothelioma. Cell Cycle is a scientific journal that focuses on molecular aspects of cancer research, and which is dedicated to research on the cell cycle and cancer.

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.

I was excited to hear from Charlene Kaforey last week that she had another good result in her latest scan. Those who have been following Charlene’s story will remember that she was diagnosed with mesothelioma in June 2007, and made the decision to try an alternative therapy at the ITL Alternative Cancer Treatment Clinic in Freeport, Bahamas.

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.”

As the nation reflects on the tragic attacks at the World Trade Center and the Pentagon on September 11, 2001, there is lingering and growing concern about the dangers of asbestos exposure at the World Trade Center “Ground Zero.” First responders and people who live nearby were exposed to tons of asbestos when the twin towers collapsed, along with smoke, chemicals and other debris.

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.

A New York medical center specializing in the treatment of mesothelioma has announced a new clinical trial accepting patients. The Mesothelioma Center within the Herbert Irving Comprehensive Cancer Center at NewYork-Presbyterian Hospital and Columbia University Medical Center is launching a program of targeted radiation and chemotherapy protocol for pleural mesothelioma, a cancer of the lung’s lining that is almost always caused by previous exposure to asbestos.

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.

There was an absolutely excellent article published in the New York Times over the weekend, written by Jan Hoffman, exploring the notion that people struggling with terminal illness, particularly cancer, like mesothelioma, should always present a brave face, a “fighting spirit.”

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?