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!!!”

In researching for my upcoming visit to Washington, D.C., to attend the International Symposium on Malignant Mesothelioma, I was encouraged to find some news from the office of Congressman Dennis Kucinich (D-OH). He has recently gone on the record with strong objections to the continued use of asbestos in America and around the world. Asbestos, of course, is linked to mesothelioma as its only proven cause.

In a news release from his office on Capitol Hill, Kucinich says, “Asbestos is a highly toxic material that has no place in construction projects here or anywhere else, especially when viable alternatives are available.” In the past, asbestos was used for fire protection, but there are other modern materials available now that preclude the necessity for using asbestos. Still, it is included in many construction materials today, including roofing shingles.

The statement was spurred by a letter of inquiry that Kucinich spearheaded, to urge The World Bank to finalize a construction guidance that would drastically reduce the use of asbestos in new construction projects. The report was commissioned in 2006, and completed in 2008, but its release has been stalled. Kucinich, joined by four other members of Congress, urged World Bank to release the guidance immediately.

The World Bank is not a bank in the usual sense, but  is a source of financial and technical assistance to developing countries worldwide. It is made up of two development institutions owned by 185 member countries. The World Bank carries out projects and provides a wide variety of analytical and advisory services to help meet the development needs of individual countries and the international community.

Regarding asbestos, the 2009 Guidance says, “Health hazards from breathing asbestos dust include asbestosis, a lung scarring disease, and various forms of cancer … Mesothelioma, a signal tumor for asbestos exposure, occurs among workers’ family members from dust on the workers’ clothes and among neighbors of asbestos air pollution point sources. Some experimental animal studies show that high inhalation exposures to all forms of asbestos for only hours can cause cancer.”

Kucinich says, “Global asbestos use is on the rise at the very time it should be eliminated.”

Read the full text of the 17-page Guidance on Asbestos.

I reported last week that Debbie Brewer, our friend in the UK, had another amazing report from Germany, where she has been undergoing chemoembolization to treat her mesothelioma. Her tumor has now shrunk a total of 83 percent! Debbie is sharing her experience with media in Britain, hoping to gain more widespread acceptance of chemoembolization as a treatment for meso, and to raise awareness that the therapy, currently in clinical trials, exists.

Debbie was diagnosed with mesothelioma in November 2006, at which time her doctor gave her only a few months to live. That was when Debbie began looking for new treatments. She began chemoembolization in May 2008.

Chemoembolization, which is being pioneered by Dr. Thomas J. Vogl at J.W. Goethe University Hospital at Frankfurt University, introduces chemotherapy directly into a tumor, where it is basically sealed off so that it is concentrated in the area of need. The clinical trial started three years ago, and will continue for about two more years. The treatment is only available at the clinic in Germany.

Recently, BBC News featured Debbie and her efforts to bring chemoembolization to the UK, and beyond.

Watch the video.

Today I heard from Debbie Brewer, our friend in the UK. She is just returned from another visit to Dr. Thomas Vogl in Germany, where she had wonderful success with the clinical trial for chemoembolization. She first visited Vogl for the treatment in May 2008. In March 2009, she found that her tumor had shrunk an amazing 73 percent since her first treatment. This week, she reports that even Dr. Vogl was surprised to see that Theo - as she nicknamed the tumor - had shrunk an additional 10 percent! That’s a total reduction of 83 PERCENT for those of you keeping score!

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

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

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

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

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

Last week I shared the story of Shanna Kurtz, a 30-year-old woman in Texas who was diagnosed with peritoneal mesothelioma in 1999. She is battling the disease, and recently underwent a surgery to remove some tumors from her abdomen and her liver. She was in the hospital in Washington, DC, for more than a month before finally returning home on May 7.

Shortly after her return, abdominal pain sent her back to the hospital. She was good enough to email me to let me know she had suffered from a condition called illeus, which is when the intestines become paralyzed. She stayed in the hospital in Texas for a few days until finally coming home again on May 13. She said she’s focusing on getting stronger and gaining weight, but is frustrated by the  setback after all her hard work to recover from her surgery.

You can check in on Shanna’s progress by reading her journal on the CaringBridge web site and email her some encouraging words at goddesslorraine@aol.com. I know she’d really appreciate hearing from some folks in the meso community!

There was a fundraiser in her honor last weekend, and there’s an ongoing effort in Texas called “Cooking for the Cure” to help raise money for Shanna’s treatments.  Cheri Travis, who is one of the organizers of Cooking for the Cure, reports Shanna is scheduled for another surgery in August, so fund raising efforts continue.

Cooking for a Cure was started by Cheri and two other friends who like cooking, and wanted to use their interests and talents in the kitchen to raise money for Shanna. They gather at one person’s house and prepare food, which they distribute in exchange for donations.

“It’s really spread by word of mouth of people who buy our food,” Cheri explained in an email to me. “Plus, we have fun doing it and helping raise funds for our friend.”

The group is based near Victoria, Texas, so if you live in that area, check out this unique project!

Cheri said there also is another fund raising benefit in Shanna’s honor planned for September 18 in Victoria. I’ll let you know the details when I have them.

In the meantime, if you live near Victoria and would like to purchase food from Cooking for the Cure, you can email Cheri at cetfrog@gmail.com.

Or, if you would still like to make a donation to help with Shanna’s treatment, you can send it to:

Cooking for the Cure
17114 Eagle Hollow Drive
San Antonio, TX 78248

There is a campaign going on RIGHT NOW to bring the topic of lung cancer to the attention of Oprah Winfrey, in hopes the immensely popular talk show host will help bring awareness to the issue. The Bonnie J. Addario Lung Cancer Foundation is sending a gigantic letter - 6 feet tall - to the Oprah Winfrey Show to catch the attention of producers and ask Oprah to dedicate a show to the topic of lung cancer.

The Foundation was established to bring awareness to the issue of lung cancer, and to eradicate the disease through research, education, early detection, prevention and treatment.

Lung cancer awareness groups are joining in this effort, and asking everyone who supports the issue of lung cancer awareness to SEND AN E-MAIL to the Oprah Winfrey Show voicing your support for this topic.

Although mesothelioma is not generally addressed when people talk about more traditional “lung cancer,” it most often affects the lining of the lungs, and research into the causes and treatments of lung cancer can also raise awareness of mesothelioma and help lead to treatments for meso as well, so I’m hoping the members of the meso community will support these efforts.

Please log on to the Oprah.com Plug Form right now to let the show’s producers know why you think lung cancer should be discussed on the show. Please mention the Bonnie J. Addario Foundation’s “big letter” and encourage them to read it, and to add YOUR voice to this call.

Lung cancer is the number one cancer killer of both men and women, and yet it is funded at much lower rates than other types of cancer. There is an overwhelming 85 percent mortality rate as a result of lung cancer.

Today I came across the story of a courageous young woman in Texas who is battling peritoneal mesothelioma, an extremely rare form of the cancer that affects the lining of the abdomen. More common is pleural mesothelioma, which affects the lining of the lungs.

Shanna Kurtz was diagnosed in 1999, at age 20, after suffering from several years of unexplained abdominal pain. Doctors who originally suspected a fibrosis tumor discovered a grapefruit-sized tumor in her abdomen, which was diagnosed as peritoneal mesothelioma.

Shanna’s journal on CaringBridge.org documents her experiences through the last several years as she has fought to keep this cancer at bay. It is heartbreaking to read about someone so young who has to face this experience. In one journal entry from October 2008, she reflects on how it feels when people tell her how strong she is, when she doesn’t have any other choice. She states frankly that she is jealous of people who have the option to choose what they will do with their lives, and reflects on so many doors that are closed to her.

Despite the inevitable depression, Shanna is remarkable. Upon her diagnosis told her only about 20 percent of patients survive beyond a couple of years. Determined to be in that 20 percent, she is beating the odds.

Most recently, Shanna’s journal chronicles a surgery on March 26 in Washington, DC, at the Center for Surgical Oncology at the Washington Cancer Institute, Washington Hospital Center.  Dr. Paul Sugarbaker removed a number of tumors, including one that had covered part of her liver. Following the surgery, the doctor filled her abdomen with chemotherapy medication in a process called postoperative intraperitoneal chemotherapy. The solution comes into contact with areas the tumor has touched, in an effort to erradicate those cells and prevent recurrance.

Shanna was in the hospital for a little over a month, finally returning home to Cuero, Texas, on May 7.

This weekend, there will be a benefit in her honor, to help offset the medical expenses of the surgery. The event will feature a bike ride and barbecue. The bike ride will leave from Grace Lutheran Church in Victoria, Texas, on Saturday, May 16, at 2 p.m., and will be followed by an evening of dancing, an auction, food and music, which will start around 4 p.m. at Lindenau Dance Hall, which is about 33 miles from Victoria. Cost to participate is $30.

If you are in the area, please attend this event!

In addition to the weekend event, there is an ongoing project called “Cooking for the Cure,” in which three friends prepare food in exchange for a donation to help Shanna. In its first month, the project raised more than $1,100.

For more information about Cooking for the Cure or the Shanna Kurtz Benefit Barbecue, or to make a donation to help Shanna, contact Cheri Travis at cetfrog@gmail.com.

When Linda van Amerongen remembers her father, Lloyd Harloff, certainly there is sadness, and anger, at the mesothelioma that took his life. But what shines through beyond and above all that is joy, and appreciation, and celebration of a life well lived and well loved. She and her family will gather this Saturday, April 25, to celebrate Lloyd’s life on the first anniversary of his death, just four days after what would have been his 80th birthday.

“It’s a family event,” Linda explains. “We’re just going to get together and play cards, play his favorite music, just remember him. You hear a lot of times that after someone dies, their funeral should celebrate their life, and I used to think that was sort of just something people said. But with my dad, we really did. And that’s what this weekend is about. We’re going to re-celebrate him Saturday.”

In December 2007, her dad was plagued by a bad cough and cold that he couldn’t seem to shake, Linda remembers. He had suffered a few bouts of pneumonia in previous months, and had several chest x-rays during that time. When he visited the doctor in December, he had another chest x-ray, and doctors were concerned about some notable differences. They ordered further tests, and after a pleural effusion they confirmed a diagnosis of mesothelioma in January 2008.

“Even now when I talk to people, nine out of 10 people have no idea what it is,” Linda says. “I probably didn’t know before my dad was diagnosed, but afterward I felt like the airwaves were inundated with ‘mesothelioma.’ It was on TV, on the backs of busses. Still, every little bit people can do to raise awareness helps.”

Despite his advanced age, her dad never thought of giving up, despite mesothelioma’s bleak prognosis, Linda says. He consulted with his oncologist and immediately began the first round of chemotherapy. His family and his love of his favorite sport, golf, motivated him to fight, Linda said.

“My dad loved golf,” she says. “He played 18 holes regularly, and he actually got a hole-in-one the year before his death. Golf was always something he used to motivate himself. He had a stroke a few years ago, and golf was a big motivator for his recovery, to get through rehab and get back out on the course. So this time, he said he wanted to do the chemo and be well enough come spring to be back on the golf course with his buddies. It was something he could use as a goal.”

Unfortunately, the first round of chemotherapy proved ineffective. Despite dwindling hopes for a positive outcome, he decided to do a second round with a different drug. But his body was weakening.

“He began to really not feel well. Between January and April – he really wasn’t feeling good a lot of that time. And yet he persevered,” Linda says.

There was a series of family events in April – she calls it the “month of Sundays” because each special activity was on a Sunday – of which her dad was determined to be a part. The first Sunday, the family had a big card party at her house, then the next week a surprise 50th birthday party for Linda’s sister and Lloyd’s middle daughter, Pam.

“He was on oxygen at this point, but he was there,” Linda remembers. “Family was so important to him, and he wanted to do everything that we had planned.”

The following Sunday, the family visited their parents, Lloyd and Maryann, for Lloyd’s 79th birthday party. Linda had noticed her dad had not been eating much for a while, and that he seemed weaker at his birthday party.

“He was in a fair amount of pain, and I don’t think we even really knew how much,” she says.

As she left her parents’ house, Linda says her mom asked her to keep her phone nearby, as she thought they might have to go to the hospital soon. That night, Lloyd was taken by ambulance to the hospital. He passed away four days later, on April 25, 2008.

“This is a sucky disease,” Linda says, a bit of her anger peeking through. “It robs you, sort of unsuspectingly. And the fact that they can’t make it better at this point, for the most part … well, I know there are more and more stories of people who do survive, and I’d have loved for him to be one of those.”

Her father’s funeral truly was a celebration of his life, she says. Her dad was dressed in his favorite Chicago Cubs t-shirt, with his golf shoes on his feet. Her brother, Keith, wrote a speech about time, which he read at the event.

“He wrote this piece about how you always think you have time,” Linda says. “My dad made time for everything – to go to a kid’s ballgame, to help you paint your house. He led by example, which I think is something we’ve all discovered since he died. He was a quiet man who loved to be around his family and friends, and we’ve all learned in the past year what a big part of our lives he was.”

The family also will host a memorial mass and brunch in honor of their father on Sunday, April 26.

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)

An interview published Sunday, April 5, by the Boston Globe featured an interview with popular country music singer Billy Ray Cyrus, and his daughter Miley Cyrus, who is probably more famous now than her father was in his heyday. Billy Ray is known to a generation of 1980s country music fans for his hit single “Achy Breaky Heart” but is probably better known among a younger generation of teens and ‘tweens simply as the father of their idol, Disney superstar Miley Cyrus, of the network’s “Hannah Montana” series.

Discussing the atmosphere of celebrity in which Miley grew up, as the daughter of a performer, the interview veers off to mention Billy Ray’s roots as the son of a steelworker father, Ron Cyrus, who went on to serve 21 years in the Kentucky House of Representatives. Almost offhandedly, the story mentions that Ron Cyrus passed away of mesothelioma, which he almost certainly contracted through his exposure to asbestos in the mills.

Perhaps the paper felt this tidbit was relevant to its Boston audience because the elder Mr. Cyrus visited Boston for treatment of his mesothelioma, and son Billy Ray wrote a colorful country tune, “I Want My Mullet Back,” in honor of a former Red Sox baseball player. In his day, Billy Ray was famous for his own long mullet haircut, a style cropped short on top and sides but long in the back (“business in the front, party in the back”).

The mention of mesothelioma seems random, but there’s more to the story.

Ron Cyrus passed away on February 28, 2006. He had served in the Kentucky House of Representatives for Kentucky’s 98th Legislative District, beginning in 1975, and was elected to 11 consecutive terms before retiring in 1996. He was 70 years old when he passed away, and old reports from that time list his cause of death simply as “lung cancer.”

In March 2006, at the end of its regular session, both houses of the Kentucky State Legislature observed a moment of silence in honor of Ron Cyrus’s passing.

But now, in its 2009 session, the Kentucky legislature is once again recognizing the issue of mesothelioma and asbestos awareness, and, along with it, Ron Cyrus.

First, on Feb. 6, Representative Ancel Smith and Rep. Sannie Overly introduced HR95, a resolution to recognize September 26 as National Mesothelioma Awareness Day, as designated by the Mesothelioma Applied Research Foundation (MARF) and supported by U.S. Congressional resolution.

HR95 was established in Kentucky to honor “those who have fallen victim to this disease in the Commonwealth” and names “former legislator Ron Cyrus; Todd Hall, a bright, young University of Kentucky graduate who had started a successful business; [and] Allen Conley, a naval architect and marine engineer exposed to asbestos in the Yorktown, Virginia Naval shipbuilding yards…”

The resolution was adopted in the House by voice vote on Feb. 9.

Then, on Feb. 23, HB519 was introduced in the Kentucky House of Representatives, sponsored by Representatives Ancel Smith, Keith Hall,  Tom Burch, Leslie Combs, Ted Edmonds, Jeff Greer and Brent Housman. The Act would designate Sept. 26 of each year as Mesothelioma Awareness Day in the Commonwealth of Kentucky and would be known as “The Ron Cyrus and Todd Hall Mesothelioma Awareness Act of 2009.”

The bill passed the house by a vote of 97-0 on March 10, with 3 not voting.

The bill was introduced in the Senate designated as SB58, sponsored by Johnny Ray Turner, where it passed unanimously by a vote of 36-0 on March 3.

Read SB58.

Read HB519.

Read House Resolution 95.