This week the Mesothelioma Applied Research Foundation (Meso Foundation) alerted me through a link on their web site to an update in the ongoing mesothelioma study in Minnesota. We have been following this study, which is investigating the high incidence of mesothelioma among Iron Range miners in that state. According to a report in the Duluth News Tribune, the study has identified four new cases of mesothelioma.

The five-year study is being directed by the University of Minnesota and the Minnesota Department of Health, and funded by a $4.9 million grant from the Minnestoa state legislature. The new cases bring the total number of former miners diagnosed with mesothelioma to 63.

Mesothelioma has traditionally been linked exclusively to asbestos. However, an investigation into the link between taconite mining – which takes place in what is known as Minnesota’s Iron Range, – began when state health officials noted an unusually high incidence of mesothelioma occurring in taconite mine workers. Mesothelioma occurs at twice the expected rate in the Iron Range.

As part of the study, researchers are screening workers and their immediate families. To date, they have interviewed about 1,000 people, and would like to double that number.

Taconite is an iron-bearing, flint-like rock. Processed taconite pellets are used in the steel making industry.  To process taconite, the ore is ground into a fine powder, the iron is separated from the waste rock using strong magnets and the powdered iron concentrate is combined with bentonite clay and limestone and rolled into pellets. The Mesabi Iron Range region of Minnesota is a major taconite production area.

More information is available at the project’s official web site for Minnesota Taconite Workers Health Study.

Pictured above are processed taconite pellets. Source: Wikipedia

A recent report on WDIO-DT and WIRT-DT ABC stations 10 and 13 says approximately 1,000 Iron Range miners and their families have been screened as part of an ongoing study into the link between taconite mining and mesothelioma. The study is being directed by the University of Minnesota and the Minnesota Department of Health, and funded by the Minnesota State Legislature, which allocated $4.9 million to the project in April 2008.

An investigation into the link between taconite mining – which takes place in what is known as Minnesota’s Iron Range – began when state health officials noted an unusually high incidence of mesothelioma occurring in taconite mine workers. Mesothelioma is traditionally linked only to asbestos exposure. There is a theory that the taconite mineral may contain similar fibers to asbestos mineral.

Researchers began screening workers and their immediate family members in July. According to the news report, researchers say the study is on track. They would like to see about another 1,000 people, however. Analysis of the respiratory is estimated to take another 18 months.

This screening is one part of the comprehensive five-year study. There are four health studies associated with the project, including a mortality study under the direction of the Minnesota Department of Health and related to miner deaths; a cancer rate incidence study; a respiratory health assessment for miners or former miners (and expanded to include spouses or other close family that may have had secondary exposure to taconite dust), and an occupational exposure study.

University of Minnesota researchers made a call in mid-September for more participants in its study of a possible link between Iron Range taconite mines and mesothelioma. The five-year reserach program received $4.9 million in funding from the Minnesota state legislature in April 2008, and is being directed by the university in partnership with the Minnesota Department of Health.

The study was conceived as a result of an unusually high incidence of mesothelioma in taconite mine workers. Mesothelioma is currently linked exclusively to asbestos exposure. To day, more than 58 Iron Range mine workers have been diagnosed with mesothelioma.

In July, researchers began health screenings of former taconite workers and their families. To date, a little more than 100 people have participated in the screenings, although reserachers hope to examine around 1,200 people during the course of the study.

The call for more participants apparently raised some concerns among area residents about the program’s success. However, a report by KQDS Fox 21 News assures the public that the study is progressing as planned, and that the call for more participants is a natural part of the process.

The news report quotes Nancy Tekautz, who is a field supervisor for the taconite workers respiratory health study, as saying her clinic is nearly booked. “We believe the response has been very good and we just want to encourage it to continue,” she told KQDS.

KXMB News reports study director Dr. Jeffrey Mandel has sent about 300 letters to a random sampling of current and former Iron Range taconite workers, asking them to participate in the study. Participants will provide a medical and occupational history and submit to simple medical tests.

Researchers assure miners and their families that all study participants and individual medical information will remain confidential. For more information, visit the Minnesota Taconite Workers Health Study web site, or call the University of Minnesota toll free at 1-888-840-7590.

It was Cheryl Cotton’s third time attending the Mesothelioma Applied Research Foundation’s annual International Symposium on Malignant Mesothelioma when I met her this past June. We were both seated in the hotel lobby, waiting for a bus to take us to Capitol Hill, where we would ask our legislators to support a complete ban of asbestos and for funding for mesothelioma research.

I think it was Cheryl who introduced herself first, and I was delighted to hear she was from my home state, Alabama, about two and a half hours north of Montgomery, in Anniston. When I told her I was from Montgomery, she was ecstatic to finally find someone with a meso connection in her home state.

Cheryl lost her husband, Virgil, to mesothelioma on May 31, 2005, just two days after their 40th wedding anniversary. She began attending the Meso Foundation conference almost immediately, urgently needing to connect with others who might understand what she was going through, and to make sense of a disease that took her best friend and love of her life before either of them fully realized what was happening.

Virgil first began to notice something was wrong in late March 2004, when he had a severe pain in his side. His hobby was restoring vintage automobiles, and he had been working on a friend’s car, so he thought he had possibly just bruised a muscle while working. But shortly after that he developed a terrible cough.

“It was a whole-body cough,” Cheryl recalls. “Like from head to toe.”

Virgil went to see his doctor, who thought the cough might be related to a drug he was taking following a heart catheterization, which he’d had earlier that year.

“The doctor said it would take 60 days or so to get the drug out of his system, so basically for two months we did nothing,” Cheryl says. “The pain in his side persisted, and the cough got worse. Right up until this time, after his heart problems, he had been dedicated to cardiovascular exercise and eating right. He was probably in the best shape he’d been in for years. He would actually get onto to me about exercising more and eating right,” she recalls with a laugh before turning sober again. “So this was just odd. He kept feeling sicker and sicker.”

He went back to the doctor, thinking maybe there was something wrong with his heart. Tests showed his heart was fine, and doctors sent him home and told him to just continue to exercise and eat right.

But Virgil began having trouble breathing. It was September by now. He visited the doctor again, and was referred to a pulmonary specialist for a thoracentesis. They found fluid in his lungs, but tests came back negative for cancer or any type of infection. But the fluid came back almost immediately.

Cheryl was getting really worried.

“He was used to being active, but now he could hardly get around. He had no energy,” she remembers. “We had requested referrals to see some doctors in Birmingham, because he was dying in front of me. I knew there was something more going on, and I couldn’t understand why nobody could tell us. We had two more thoracenteses and still no diagnosis. The local doctors said they didn’t know what was wrong with him.”

At this point, Cheryl decided to call Birmingham, and talked to a nurse at UAB Medical Center. She got a referral for a pulmonary specialist, and made an appointment for Virgil the following week. But when they got to see the doctor, he said Virgil actually should see a thoracic surgeon, and gave them another referral. They gathered all Virgil’s test results and visited the thoracic surgeon on December 14. An initial theory was that Virgil might have a collapsed lung and scar tissue.

“Virgil had really gone downhill,” Cheryl said. “He was aging. Things had fallen apart in nine months, since the first symptoms.”

Doctors decided to do a thoractomy, but because it was Christmastime, they decided to wait until January, telling Virgil and Cheryl to go home and enjoy the holidays with their family. He finally had the surgery Jan. 4, and they first heard the word mesothelioma. But the diagnosis still wasn’t definite until about 10 days later.

“At that point it was stage 2+ or 3-. It was already advanced. We were referred to a doctor for chemotherapy, but still nobody was really telling us much about what this diagnosis meant. We had no idea.”

Virgil underwent a series of chemotherapy treatments, and then on April 20 began receiving radiation at a cancer center in Birmingham.

“By then, his breathing had deteriorated and they’d put him on oxygen,” Cheryl said. “He’d really not been able to lie flat since September. He had to prop up in a recliner or on a pallet on the floor.”

On May 19, a Thursday morning, Virgil woke Cheryl and told her something was wrong and that he felt he needed to go to the hospital. They went to UAB. On May 21, the doctor came in and told them Virgil was not improving, and that he didn’t have long to live. She estimated two and half to three months, and advised them to get their affairs in order.

“This was the first time anyone really talked to us about dying. Everyone was telling us he had time, that there was all this time.”

They called in Hospice care, and their daughter, Pam, came to visit, bringing their grandson and making a video of Virgil and the boy. On May 30, Virgil began doing worse, and passed away the next day. This was just nine days after they’d first been told that Virgil’s condition was terminal, and about 15 months since his first symptoms.

Cheryl was in shock. “He was 60 years old and had been in prime health,” she says. “When he died, he looked like he was 90. I didn’t even realize how bad he looked because I guess I saw him every day. Months later, I watched the video Pam had made just before he died, and then I really saw it.”

Virgil’s illness had been such a whirlwind; Cheryl wasn’t quite sure what to do after his death. She still couldn’t quite believe it had even happened. She was angry, that Virgil went so long with no diagnosis and no treatment. She felt guilty, like she ought to have somehow known more, or done more. And she felt alone.

Some time after Virgil was diagnosed with mesothelioma, Cheryl found the Mesothelioma Applied Research Foundation, a non-profit organization dedicated to the elimination of mesothelioma through outreach, education and funding research efforts to find a cure. She also connected with Sue Vento, the widow of Sen. Bruce Vento of Minnesota, after whom the pending “Bruce Vento Ban Asbestos and Prevent Mesothelioma” legislation before the U.S. Congress was named.

“She emailed me and I think called me, too,” Cheryl says. “She sent me a book on meso as well. She was the calm in the middle of my storm, and has kept in touch with me during this time via emails.”

Following Virgil’s death, Cheryl decided to attend the Meso Foundation’s annual International Symposium on Malignant Mesothelioma, and packed her bags for the trip to Washington, D.C. Many of her friends couldn’t understand it, but she says it was something she had to do.

“I somehow found MARF and the main reason I went to the conference that first year was to have someone to share this pain, and try to come to some conclusions,” she said. “You feel like you didn’t do something you should have. We had never heard of the word until they told us the diagnosis.

“I really felt like … when you lose your husband, who had been my friend, before he was my sweetheart – we’d known each other since we were 12. I felt if there was some way I could reach out to someone else it would help me as much as maybe I could help them. I felt there was that need in my heart, to find out as much as I could about the disease,” Cheryl says. “It was wonderful to know that people were surviving. But it makes me angry that Virgil didn’t have a chance.”

She had a chance to meet her “rock,” Sue Vento, at that first conference as well. Since that time, Cheryl has attended the Symposium for three years in a row, where she is active, joining others in visiting Capitol Hill to ask Congress to ban asbestos, and to fund mesothelioma research. She is also active in her community, talking to people about the dangers of asbestos exposure and about mesothelioma. She takes brochures about mesothelioma to doctors’ offices, hoping to increase knowledge among the medical community, hoping that someone else may be diagnosed early enough for treatment.

“Now I have contact with more people who are battling mesothelioma, and I learn that most people also have never heard of it. At the time, you just have to hang in there, and you can fall apart later. So I try to connect and just try to help someone, to let them know that someone is there who understands what they are going through. And it helps me too,” she says.

“I share my story every chance I get. I wear an awareness pin. People need to know asbestos is out there and it’s killing people.”

Outreach is hard. Every time she shares Virgil’s story, the pain is fresh again. But Cheryl is determined, and she’s willing.

“Mesothelioma patients and their families are victims,” Cheryl says. “They are victims of asbestos. And all of this COULD and SHOULD have been avoided!”

Our friend Heather Von St. James, who lives in Minnesota and who recently celebrated her third anniversary of being cancer free after undergoing a pleural pneumonectomy to treat her mesothelioma, recently lost a friend to this disease. On Sept. 2, she posted the following beautiful essay on her Facebook page, dedicated to the memory of her friend Lonna. She gave me permission to share this here, and I thought it appropriate for the week leading up to Mesothelioma Awareness Day.

“So as I sit here today… another senseless death due to this horrible disease has happened, and another is near… two beautiful, bright and amazing women succumbing to a disease they got because of exposure to a substance that kills… and has not been banned. There is no more innocent victim than a mesothelioma victim….Someone told me that one time.. and the more people I know that are dying from this.. the more I believe it. Because someone hugged someone who worked with asbestos and had it on their clothes, they are now paying the ultimate price… their life.

I’ve said it before… Cancer is a weird thing… a true double edged sword… I know my life would not be what it is today had I not gotten sick with mesothelioma… I know that the people that have come into my life in the last 4 years would not have been a part of my life had I not gotten sick… On one hand… I have to deal daily with the fear that “IT” might come back… I don’t dwell on that fear, but it is an underlying current to every ache, pain and uncomfortable feeling I have that I can’t explain… My last stint in the hospital proved just that… My mind immediately went there… what if “IT” is back? On the other hand.. I would not be home to raise my daughter, and I would not have gotten to know so many of the amazing people in my life that I have… nor would I appreciate the small things. I do a lot of praying.. and even more during those times. My doc out in Boston told me after my 1st post surgery check up to go home.. and LIVE LIFE… just go on and live.. don’t let the diagnosis get in the way of living your life. Maybe he knows something I don’t… Having to face this illness every day with as many people as he does.. So I have done just that… despite the aches and pains that are with me every day.. I live my life.

When I know that others are suffering from this disease after fighting it so hard ,for so long, it just breaks my heart… Today, in honor of Lonna.. I am buying daisies…her favorite flower, I am going to have bouquets of them around my home and in them I will see her smile.. hear her gentle voice.. and in their simple beauty I will once again remember to live my life.

The circle of life continues on…. one passes, another is born… Kristi is going to have her baby any minute now. That simple joy of a baby doesn’t bring anyone back, but it brings hope… hope of a new, bright life. Despite the tragedy of losing so many friends and loved ones to this disease, I continue my hope that there will be a cure. Not just for this type of cancer, but for all cancers…. This month is Childhood cancer awareness month… Sept 26th is Mesothelioma Awareness Day… October is breast cancer awareness month… There are too many cancers, not enough months or days to be aware of them all… i just know what I am able to do in my little part of the world..and that is bring hope and joy to those around me… and live my life to the fullest… To remember my vow to be positive, and NOT live in the fear of “it” coming back…. I have my whole long life ahead of me to enjoy and I intend to do that.. and today I reaffirm that vow… Thank you God for every day that I have, for every day truly IS a blessing, and don’t for one minute take it for granted.. it can all change in a blink of an eye…

God bless you Lonna on the next step in your journey,I am blessed to have known you…”

Last year, we reported on the establishment of a mesothelioma research project in Minnesota, which is examining the possible link between taconite mining and mesothelioma. The five-year research program received $4.9 million in funding from the Minnesota state legislature in April 2008, and is being directed by the University of Minnesota in partnership with the Minnesota Department of Health.

This week, university researchers announced they are ready to begin recruiting current and former taconite workers on Minnesota’s Iron Range, and their spouses, to participate in a screening program.

Preliminary research actually began in Summer 2007, but got a boost from the legislature’s funding, allowing the study to expand significantly. The funding established the Minnesota Taconite Workers Lung Health Partnership task force.

There are four health studies associated with the project:

• a motality 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
• an occupational exposure study

According to an update in the Star Tribune, which serves the Twin Cities, Minneapolis and St. Paul, “since last year, researchers have been collecting data they need to determine why Iron Range miners die from mesothelioma at higher rates than others.”

Researchers hope to recruit around 1,200 current and retired workers for the new screenings, plus about 800 of their spouses.

Mesothelioma has been linked exclusively to asbestos exposure, so this study seeks to determine what similarities may exist in the taconite mining industry and the taconite mineral that produce high incidences of mesothelioma among its workers.

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!!!”

I promised an update on Lung Leavin Day 2009, and here it is! Not really a story as much as some photos to share, courtesy of the day’s creator herself, Heather Von St. James (and her sister, Danna, who devised the name).

As you all know, Heather is a mesothelioma survivor. Diagnosed just over three years ago, she decided to undergo surgery at the International Mesothelioma Program at Brigham & Women’s Hospital. The surgery involved removal of Heather’s tumor, pleura, part of her diaphragm, and her left lung.

The date of the surgery fell coincidentally on Groundhog Day, prompting an instant slew of jokes from the patient herself – she asked her doctor if her tumor saw its shadow would she have six more weeks of recovery? – and her sister, who renamed the day Lung Leavin Day, which stuck.

February 7 was set for the Third Annual Lung Leavin Day celebration, as family and friends gathered at Heather’s home in Minnesota to celebrate life and let go of their fears. They wrote their worries on plates and smashed them into the fire, and took a moment to cherish friends and family.

Hooray for Heather!!

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.

Regular readers of this site will no doubt remember the incredible story of Heather Von St. James that we shared not long ago. Heather was diagnosed with mesothelima just over three years ago, at the young age of 36, shortly after having a baby, daughter Lily Rose.

Stunned by the diagnosis and it’s bleak prognosis, Heather decided to undergo a radical surgery pioneered by Dr. David J. Sugarbaker at the International Mesothelioma Program at Brigham & Women’s Hospital in Boston, Mass. The procedure involved removing the tumor, pleura, part of her diaphragm, and her left lung.

The surgery was scheduled for Feb. 2, Groundhog Day, but Heather’s sister Danna promply dubbed the day “Lung Leavin’ Day.”

Heather’s surgery was a success, and she holds fast to the belief that she is cured. On the first anniversary of the surgery, she decided to have a party to celebrate life and hope. And the Lung Leavin’ Day annual celebration was born!

Heather, along with family and friends, commemorates the day with a huge bonfire. They write their fears on plates with a Sharpie marker and smash the plates into the fire in a symbolic releasing of those concerns.

The event has grown from a few close family members to include more than 40 people this year, on Saturday, Feb. 7, date of the Third Annual Lung Leavin’ Day.

Even if you can’t travel to Heather’s home in Minnesota to join the party, she encourages families battling meso and fellow survivors to use the day as an opportunity to celebrate life and to face the future with courage and optimism.

“I would love it if people all over celebrated with us,” she says. “They can do something as simple as raising a toast to health or dancing around a fire and plate breaking! Whatever you want to put in!”

The official celebration begins at 6 p.m. Central Time. I’m planning to definitely raise a glass and think of everyone I’ve met here through this web site, and all those I haven’t yet but who are struggling in their own fight against mesothelioma. There is so much hope, there are so many wonderful stories of success in this fight.

I know that together we can beat this cancer!

Lung Leavin’ Day! WOOT!