Yesterday at the 2009 International Symposium on Malignant Mesothelioma, the theme was all about hope. The day focused on patients, caregivers, and those who had lost loved ones to mesothelioma. The symposium is presented annually by the Mesothelioma Applied Research Foundation, which is a national non-profit organization dedicated to ending the sufferng caused by mesothelioma by funding mesothelioma reserach, educating patients, and advocating for funding for mesothelioma reserach.

The highlight of the events yesterday happened early in the day, but its effect reverberated for the rest of the day and into the evening’s banquet. The Tribute of Hope Ceremony was held yesterday morning. Those who had lost someone they love to this horrible asbestos-related cancer brought a photograph of their loved one and added it to a photo collage. The names of all those who had lost their battle were listed on panels lining the walls - too many panels - and grieving folks filled the space around them, lighting candles in memory of someone dear who didn’t have to die.

Although the rest of the day was filled with informative seminars about reserach, treatment, nutrition, wellness and coping, the weight of that wall could not be forgotten. Candles glowed and you couldn’t help looking over, reading the list, hating mesothelioma and wondering just WHY nobody seems to know about this lurking killer.

This is why we need more awareness.

The day ended with a Gala Celebration of Hope. Awards were presented to those who have done outstanding work in the fight against mesothelioma. From MARF, here is a list of those honored this year:

• The Pioneer Award emphasizes the contributions of Dr. Robert Taub, MD PhD, whose treatment protocols and vision have shown remarkable results and have been the basis of hope for many mesothelioma patients.
• The Bruce Vento Hope Builder Award, named for the late Minnesota Congressman who died from mesothelioma in 2000, acknowledges the support and initiatives of Terry Lynch, International Vice President, Political & Legislative Director and Health Hazard Administrator of the International Association of Heat and Frost Insulators and Allied Workers.
• The Volunteer of the Year Award honors Craig and Shelly Kozicki for being an inspiration to the mesothelioma community through their continued dedication in raising research funds and providing support and hope to others faced with mesothelioma. Craig, who had been diagnosed with mesothelioma in 1998, died in May of this year.

At the close of the awards presentation, a microphone was passed around the room to allow mesothelioma patients in attendance to share their stories. There were stories of victory and remission, tears and fears, laughter, and anger. A cry began to ring out as each fighter took the microphone. Turning, they would point at the looming Tribute Wall and declare, “I am not going on that wall!!!”

A former Minnesota state legislator dubbed “Mr. Positive” by those who knew him because of his can-do attitude has passed away due to mesothelioma. Dennis Newinski served in the Minnesota House of Representatives. He made a bid for U.S. Congress in 1994, but was defeated, ironically, by Bruce Vento, who also passed away due to mesothelioma, in 2000.

Remembered as a man of strong faith, Newinski spent the past two years, while battling mesothelioma, speaking about his faith and explaining how it brought him peace in the face of such a dire diagnosis, according to a story in the Minneapolis-St. Paul Star Tribune.

Despite three missed attempts at a U.S. House of Representatives spot, the Republican was well-respected nationally, and was invited to give the invocation at the State Republican Convention in 2008, as well as serving as an alternate delegate for the 2008 Republican National Convention in St. Paul, Minn.

Newinski died last Tuesday, Feb. 10, at age 64. He made his home in Maplewood, Minn., and is survived by his wife, Sharie, two sons, Greg and Mark, two daughters, Julie Keenan and Cindy Nybakke, as well as five brothers and nine grandchildren.

Researchers studying an unusually high incidence of mesothelioma among Iron Range miners and their families reported they are “making progress” as five-year program gets underway, according to the Star Tribune, which serves Minneapolis and St. Paul. The $4.9 million research program was funded by the Minnesota state legislature in April.

The program is being directed by the University of Minnesota. Researchers held an open meeting yesterday evening to share initial results. The program, which involves health screenings for residents of the Iron Range, particularly mine workers and their families, began in Summer 2007, but got a boost when the legislature approved the funding to expand the study significantly. The funding established the Minnesota Taconite Workers Lung Health Partnership task force.

The Star Tribune reports that the program will expand in 2009 to include a respiratory health assessment of 1,200 active and retired miners, as well as 800 spouses or partners. Participants will be selected at random. Physical testing will be handled by the Virginia Regional Medical Center, and testing is exected to run for a period of about 6-9 months.

While mesothelioma is almost exclusively associated with asbestos, researchers are investigating whether or not there is a link between taconite dust - which is produced in the Iron Range mining process - and mesothelioma. To date 58 mesothelioma deaths have been linked to the Iron Range.

According to the Star Tribune report, there are four ongoing health studies associated with this project: a mortality study under the direction of the Minnesota Department of Health related to miner deaths; a cancer rate incidence study; a respiratory health assessment for miners or former miners; and an occupational exposure study. In addition, the paper reports two environmental studies are part of the process as well, under the direction of the Natural Resources and Research Institute the University of Minnesota Duluth. These will examine sediments in lake bottoms as well as airborne particle measurements.

Researchers who have begun a five-year, $4.9 million study into an alarming number of mesothelioma cases in Minnesota will present a progress report tonight at the Mountain Iron Community Center. The study, which is operating under the direction of the University of Minnesota School of Public Health, focuses in particular on Iron Range miners. The Minnesota legislature approved funds for the research project in April.

The study is the result of concern about a high rate of mesothelioma among Iron Range workers, with 59 identified cases to date. According to a report in the Duluth News Tribune, initial data indicates 17 miners who developed mesothelioma between 1988 and 1996. Then, in 2007, it was revealed that the Minnesota Department of Health had additional information about 35 more cases of mesothelioma among the mine workers.

Mesothelioma is thought to be caused exclusively by exposure to asbestos, but the Minnesota study is examining the possibility of a link between exposure to the taconite dust released in the Iron Range mines, and mesothelioma. According to the News Tribune, researchers are conducting health screenings for miners and their spouses. They hope to screen about 2,000 people within six to nine months.

Tonight’s program will share initial findings and inform the public about the progress of health screenings, and opportunities for involvement in the screenings. It also will feature a presentation about the geological aspects of the Iron Range mine area.

If you’d like to attend, the meeting will be held at 6:30 p.m. at the Mountain Iron Community Center, at 8586 Enterprise Drive. The presentation should last about an hour.

In the news this week, two reports of deaths resulting from mesothelioma.

The Philadelphia Inquirer reported the death of Thomas S. McGuire, 47, of Broomall, who died Monday. Mr. McGuire was an employee of United Parcel Service (UPS) in West Chester, for more than 26 years. He was diagnosed with mesothelioma in July 2007. He is survived by his wife, Marjorie Duddy McGuire, sons Michael and Thomas Jr., daughter Kelly and two brothers and a sister. Donations in his memory may be made to the McGuire Children Education Fund, TD Bank, 120 W. Eagle Rd., Havertown, Pa., 19083.

The Hastings Star-Gazette, in Hastings, Minn., reports the death of Kenneth B. Kjos, 88. He passed away Dec. 9 after battling mesothelioma. Mr. Kjos served his country in the U.S. Air Force from 1942-1945. He worked at the Koch Refinery from 1955-1988. He is survived by his wife, Jean Highet Kjos, sons Bruce, Thomas and Robert, daughters Karen, Kristine and Betty, as well as 15 grandchildren, 8 great-grandchildren, a sister and other relatives and friends.

Blessings to these families.

It has been three years since Heather Von St. James chose a radical surgical treatment following her mesothelioma diagnosis. Just 36 years old at the time of the diagnosis, Heather is an anomaly in many ways in the world of meso – she’s female, and she is very young. The average meso patient is older, usually around age 60 or older, and male.

Heather also is unusual in that she is a survivor. Mesothelioma is a deadly disease, very often killing its victims within two years of diagnosis. This is partly because meso can be hard to diagnose, and is often mistaken for pneumonia or other minor ailments, until it is caught late, at an advanced stage, too late to treat effectively. There is no known cure.

A persistent fever, fatigue, and a heaviness in her chest prompted Heather to visit the doctor two months after the birth of her daughter, Lily, in August 2005. She knew her symptoms were not related to the usual exhaustion of new motherhood. By Nov. 21 Heather was diagnosed with mesothelioma, and less than a month after her diagnosis Heather was in Boston at the International Mesothelioma Program (IMP). Two months later she completed surgery to remove her tumor and her left lung.

She believes that God had a hand in the quick diagnosis and treatment, allowing her to battle her mesothelioma before it was able to advance.

“I am not the norm,” she acknowledges. “Too many people die from this disease – young, old, everything in between. But more people are surviving it now. We are out there. And I think that needs to be out there more.”

Heather understands that when she tells people she is cured – a diagnosis her doctor, Dr. David J. Sugarbaker, who pioneered the mesothelioma program at IMP, cannot officially confirm – it makes some people angry. But, she says, she has to make her own choices, and part of her recovery is believing that the meso is gone for good.

“Life is a death sentence, and we all get so caught up in the death part of it. [Having meso], it’s like you sort of know your chariot home. It was sort of an eye-opener for me,” she says. “But it also made me really want to stay. I have a baby daughter. I am not ready to stop being a Mom to her. I am not anywhere near ready to go. What got me through a lot of dark times was my relationship with the Lord, and my positive attitude.”

She is eager to share her story, as much to give hope to other mesothelioma patients as to raise awareness and support for a cure.

“There is the 80 percent that don’t make it, but there is the 20 percent that does. That statistic is there for a reason, because it’s true,” she says.

Heather regularly attends new patient orientation at IMP when she returns to Boston for her check-ups, looking for the opportunity to meet other mesothelioma patients and their families. She hopes she can answer their questions, help calm fears, and provide a sense of hope.

“I’m the face of ‘after.’ That’s still rare. I want to talk to patients, to give them hope.”

A full-time social worker and two chaplains work at IMP, and there are regular support groups each week for families and patients, both while they are at IMP for surgery, and when they return for follow-up visits. Heather also attends these meetings when she is in Boston.

Additionally, last October Heather was a special guest speaker at an annual symposium hosted by Dr. Sugarbaker for IMP supporters, physicians and researchers.

“Researchers never see the real people that all these cells they’re working on are attached to. Dr. Sugarbaker wanted to give a face to all these cells,” Heather said.

Heather and her family also hold their own annual celebration on Feb. 2, the date of her surgery, dubbed Lung Leavin’ Day by her sister, Danna.

On the first anniversary of her surgery, she and her husband Cameron built a huge bonfire. Cameron collected two plates and a Sharpie marker, and they wrote their fears on the plates, then smashed them into the fire. Danna and her husband, Wayne, had their own Lung Leavin’ Day celebration at their home in Portland at the same time, in solidarity.

Last year, on the second Lung Leavin’ Day, more than 40 friends and relatives gathered to celebrate Heather’s health.

“It’s a celebration of life,” she says. “That’s the day when my life started over. My cancer was gone.”

Heather is exploring volunteer and outreach opportunities in Minnesota, where mesothelioma is literally an epidemic, responsible for the deaths of nearly 60 taconite miners in its Iron Range, and affecting dozens more. In April, the Minnesota State Legislature approved nearly $5 million for a study of the Iron Range and mesothelioma.

In another tie to her home state, the current bill before the House of Representatives that would finally call for a complete ban of asbestos in the United States is named after late Minnesota Congressman Bruce Vento, who died of mesothelioma in 2000. The Bruce Vento Ban Asbestos and Prevent Mesothelioma Act of 2008 is currently before the House Committee on Energy and Commerce.

As a result of these two issues, people in Minnesota are perhaps more aware of mesothelioma than most other places in the U.S. Heather hopes to do what she can to continue to expand the message, with the hope of saving more lives through awareness, outreach and fund raising for a cure.

“I know I’m here for a reason,” she says. “[Other cancers] get so much attention and funding. Why can’t we have a 3-day walk for mesothelioma? It needs to be out there. We’re just going to see more and more of this disease.”

In the meantime, Heather concentrates on staying healthy for her daughter, Lily, whom she calls a “fourth generation flower.” Heather’s grandmother was Rose, and her mom is Violet. So she claims cured, and counts her miracles, and keeps the fear at bay while she builds that garden.

You can contact Heather Von St. James through email at red7ro7r@hotmail.com or call her at 651-330-3614. She welcomes calls from mesothelioma patients and families.

Heather Von St. James knew having a baby was a physically taxing experience, but the weeks of exhaustion, night sweats, and constant fever following the birth of her daughter, Lily Rose, in August 2005, just didn’t seem right. She was only 36; she ought to bounce back faster than this, she thought.

Within two weeks, the Roseville, Minn., resident visited nearby St. Paul for a checkup. Because of the fever, combined with a feeling of pressure in her chest that made breathing labored, doctors suspected a virus affecting Heather’s heart.

They ordered a chest x-ray, which showed fluid around the lung, so they sent her to the hospital for a thoracentesis to drain the fluid. During that procedure, they found a liter of fluid around her lung. Concerned, they sent Heather for a CT scan to find out where the fluid was coming from and what was causing it. The test revealed a tumor on the pleura. When they tested cells and fluid from around the lung, they were stunned by the diagnosis of mesothelioma.

Not quite believing this disease could affect such a young woman, they sent the samples to the Mayo Clinic for a second opinion. On Nov. 21, 2005, Heather got confirmation – she had mesothelioma. Even the Mayo Clinic physicians had only heard of one other woman Heather’s age with meso.

Mesothelioma has traditionally been seen in older men, usually with a background of working in a factory, shipyard, mine or other environment with heavy asbestos exposure. Today, however, more and more cases of secondary exposure are being diagnosed. Family members who receive only relatively minimal exposure through contact with clothing or other items dusted with asbestos are developing meso.

Heather’s dad worked around asbestos, as a fireman, and also in construction work, where he did remodeling and renovations. A self-proclaimed “Daddy’s Girl,” Heather figures she was exposed to asbestos in the dust on his clothing.

“That’s what ticks me off,” she says. “(Manufacturers) knew what [asbestos] did, (they) knew what it was. But they didn’t tell anyone.”

Heather, with her husband Cameron at her side, was given three choices for dealing with her diagnosis – do nothing, with an expectation of living about 15 months; pursue traditional chemotherapy and radiation treatments, with a life expectancy of about 5 years; or take a risk on a bold groundbreaking surgery at the International Mesothelioma Program (IMP) in Boston.

They decided to take the risk, and were in Boston by Dec. 12 to meet with Dr. David J. Sugarbaker, who has pioneered the treatment of mesothelioma at the Brigham & Women’s Hospital.

At IMP, Heather and Cameron attended a new-patient orientation, and met two other families facing the diagnosis of mesothelioma. Both of the other patients were men, aged 72 and 80.

“It was really hard to be there. It was so surreal, having just had a baby four months earlier, and now I’m in Boston talking about going through this major, major surgery, talking to these men who worked around asbestos,” Heather says.

As part of the initial visit and evaluation, Heather underwent surgical biopsies on the tumor and on her esophagus, so that doctors could check for lymph node involvement.

Heather and Cameron returned home to spend a worried Christmas with their new baby while they waited for the results of the biopsies. The tests reconfirmed the mesothelioma diagnosis and revealed that the tumor was localized on the left part of her lung, on the pleura. Thankfully, the lymph nodes were clear.

Surgery was scheduled for Feb. 2 – Groundhog Day. Heather promptly nicknamed her tumor Punxsutawney Phil, after the famous weather-predicting groundhog, and joked with her surgeons that if her tumor saw its shadow would she have six more weeks of recovery? Her sister renamed the holiday Lung Leavin’ Day.

Shoring up her courage with humor, Heather set her mind on a positive outcome. She was not ready to leave this world.

Next: Part II - Surgery & Recovery

A Minnesota woman is “claiming cured” after battling mesothelioma. Diagnosed in November 2005, Heather Von St. James, now 39, underwent surgery under the care of Dr. David Sugarbaker, who heads the acclaimed International Mesothelioma Program at Brigham & Women’s Hospital in Boston. Now nearly two years later, all traces of her cancer are gone, according to a story today in the Minneapolis Star-Tribune.

Heather’s treatment included radical surgery to remove her left lung, the lining around her heart, half her diaphragm, her sixth rib, and a few lymph nodes, followed by a chemotherapy regimen every three weeks for 12 weeks.  She now calls herself the “poster child for hope after meso.”

According to the Star-Tribune article, Dr. Sugarbaker is more guarded, although optimistic. The paper quotes him as saying, “right now in this present moment she is disease-free.”

Dr. Sugarbaker is arguably the leading mesothelioma physician in the U.S., and is largely credited with developing the surgical technique for mesothelioma resection and for recognizing the importance of a multimodality approach to treatment that combines surgery with chemotherapy and radiation therapy.

The National Cancer Institute estimates about 2,000 cases of mesothelioma are diagnosed in the U.S. each year. The disease has a long latency period of between 20 and 50 years, and it is unusual to find it in someone so young. Mesothelioma is linked only to asbestos exposure, so its victims are traditionally people who work in asbestos mining or come into contact with asbestos through other occupational exposure.

In Heather’s case, her mesothelioma is most likely due to secondhand exposure, from asbestos on her father’s work clothes. The Star-Tribune reports that Heather’s dad, Rollie Rosedahl, was a construction laborer who often worked with asbestos-containing products. Heather says she often wore her father’s jacket and boots when he’d come in from work.

The National Cancer Institute says that asbestos related disease like mesothelioma and asbestosis can occur in people with only brief exposures, and that there is evidence that family members of workers exposed to asbestos face an increased risk of developing mesothelioma.

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

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

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

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

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

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

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

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

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

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

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

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

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

The Minnesota Department of Health reported this week that a 59th case of mesothelioma was identified in an Iron Range mine worker. This is the latest bad news in an ongoing examination of unusually high rates of mesothelioma among the miners. The state government recently approved $4.9 million to study the situation.

According to the Duluth News Tribune, the news of the latest mesothelioma diagnosis was discovered as the result of a comparison study done by the Minnesota Department of Health, comparing 72,000 Iron Range miners against the Minnesota Cancer Surveillance System, which is the state’s cancer registry. The paper reports Health Department spokesperson Buddy Ferguson was unable to provide details about the 59th miner diagnosed, including whether or not this case of mesothelioma had resulted in an additional death.

A focus of the five-year study, which is under the direction of the University of Minnesota’s School of Public Health, is to determine if there is a relationship between mesothelioma and the dust from taconite mining that is a central part of the Iron Range mine operation. Currently, mesothelioma is known only to be linked to asbestos. Because of the long latency period of the disease, usually between 20 and 50 years, it is uncertain whether the mesothelioma cases could be caused by previous asbestos exposure on the part of affected individuals, or taconite dust, or both.

Minnesota Public Radio reported in June 2007 that the Department of Health had conducted a study in 2003 when it found 17 cases of mesothelioma among Iron Range workers, and determined that 14 of the 17 cases had previous exposure to asbestos as well as taconite dust. Between 2003 and 2007, an additional 35 miners were diagnosed with mesothelioma.

According to WDIO-DT and WIRT-DT, ABC affiliates channels 10 and 13 serving the Northland area, approximately 1,200 current and former Iron Range miners will undergo random respiratory and health screenings, beginning next summer, as part of the study. The station reports that this summer researchers will begin analyzing old health studies, and doctors will examine current asbestos exposure controls.

The research study group has been named the Taconite Workers Lung Health Partnership. Read more about the project at its web site.