One of the many mesothelioma community members on Facebook posted a question today about a clinical trial being conducted at the Mesothelioma Center, located at New York-Presbyterian Hospital. MyMeso discussed this clinical trial in a July post. The clinical trial is a program of targeted radiation and chemotherapy protocol for pleural mesothelioma, which is a cancer of the lung’s lining almost always caused by asbestos. In response to the Facebook thread, meso survivor and awareness advocate (read: warrior) Debbie Brewer, who many of you know from her story and updates here (thanks Debbie!), mentioned a similar study currently ongoing in Australia.

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

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

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

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

The Sydney Morning Herald has reported that biotechnology company Bionomics is set to begin a Phase II clinical trial of its anti-cancer drug, BNC105, at up to 12 cancer treatment centers across Australia. The company plans to include 60 mesothelioma patients in the drug trial.

According to the Herald report, this Phase II study comes on the heels of a successful Phase I clinical trial of Bionomics’ BNC105, which was administered to patients with advanced cancers at Peter MacCallum Cancer Centre, the Western Hospital, Austin Health and the Royal Melbourne Hospital.

Bionomics has contacted the Australasian Lung Cancer Trials Group (ALTG) and the NHMRC Clinical Trials Centre (CTC) to conduct the clinical trial. No date has yet been set for the trial start.

BNC105 is described as “a novel anti-cancer agent which is both a vascular disrupting agent (VDA) and an inhibitor of cancer cell proliferation.”

For more information about the Phase II clinical trial of BNC105 for mesothelioma patients in Australia, email clinicaltrials@bionomics.com.au. You can also find out more information about ongoing clinical trials in Australia and New Zealand by visiting the Australian New Zealand Clinical Trials Registry (ANZCTR) at www.anzctr.org.au.

Mesothelioma Awareness Day will always hold a special significance for Mary Elo. On August 15, 2009, her father passed away as a result of mesothelioma. That alone would mark the day for her, but even more significant, her Dad, George Elo, was just short of his 77th birthday – which is Sept. 26, the same day designated as Mesothelioma Awareness Day.

Her father first started getting sick a couple of years ago, Mary recalls. He had a constant cough, and began losing weight and experiencing shortness of breath. He went to see his primary care physician, and was diagnosed with pneumonia. This happened several times, and always the story was the same. He even had fluid on his lungs, and he would have a short hospital stay, and even though the fluid was tested, there was no diagnosis and he would return home, Mary says.

“We had not heard of mesothelioma before he got his diagnosis,” Mary says. “The doctors didn’t seem to have any sense of urgency to find out what was going on. I began looking on the internet, and he had seven of the nine symptoms for mesothelioma.”

At that point, Mary insisted her father receive a biopsy to find out what was going on with the recurring fluid in his lungs. On June 2, 2009, they received the diagnosis – epithelioid pleural mesothelioma. By the time he was diagnosed, he was already in stage 4. Despite trying chemotherapy, he passed away by August 15.

“The system failed my father,” Mary says. “There was just no sense of urgency.”

A Navy veteran, her Dad was being treated at the VA medical center for an atrial fibrillation, and had been on coumadin for a few years. When he began having his bouts of pneumonia, the doctors at the VA called for an MRI / PET scan, and his May 12 test records indicated a suspicion for mesothelioma. But her parents couldn’t read the paperwork, and the primary care physicians somehow missed the notation, Mary says. He had several thoracenteses, yet never had a diagnosis for mesothelioma until Mary insisted on a biopsy nearly a month later after reading about meso online.

“I was the internet MD at this point,” she says. “It drove my father crazy,” she recalls. By the time he was diagnosed, her Dad, who was 6’1”, weighed only 132 pounds.

Despite the advanced state of his mesothelioma and the toll it had already taken on his body, Mary says her dad immediately began talking to the doctors about treatment options. “He went through this whole process wanting to fight it,” she says. “He did not give up until the very end, and was willing to do anything necessary. He was definitely a warrior.”

Even while his illness sapped his strength and breath, and his chemotherapy caused him physical pain, he barely let it show, Mary says. He was still the rock of the family, looking after his wife of 55 years, Betty, along with his five kids, Mary and her sisters Lisa, Linda and Midge, and their brother Billy; as well as 8 grandchildren and one great-grandchild, all of whom live in Texas, spread out in San Antonio, Austin and Dallas.

“He put a strong face on it, even though he was struggling to breathe every day,” Mary says.

Now, the family is working to raise awareness, hoping to help other families make the diagnosis earlier, and to prevent exposure to asbestos in the first place.

“It seems like after we found out about my Dad’s diagnosis, we heard more about mesothelioma. I was watching the news after my father’s diagnosis and they were talking about Libby, Montana. Speaking to two of my friends, I found that their fathers had died from meso, and one girl’s grandmother died of mesothelioma. A contractor right here in our building, his mother is living with meso and his father passed away as a result of meso. It seems like it’s all around me.”

Mary and her family are working on awareness efforts in their cities. Mary got Austin Mayor Lee Leffingwell to sign a petition declaring Mesothelioma Awareness Day in the city, and she is working with Texas State Senator Mario Gallegos, Jr., whose father also died of mesothelioma, to create a proclamation in her father’s honor. Her goal is to get a permanent designation for Mesothelioma Awareness Day in the state of Texas.

Additionally, Mary is working with her local running clubs to establish a “Miles for Meso” event similar to the one that is taking place in Alton, Illinois, on Sept. 26 this year. She hopes to have that established and hold the inaugural race in time to celebrate Meso Awareness Day – and her Dad’s birthday – in 2010.

More than 230 people gathered in Washington, D.C., last week to attend the 6th Annual International Symposium on Malignant Mesothelioma, presented by the Mesothelioma Applied Research Foundation. This was the largest attendance to date for the event, and 170 of that number also participated in Advocacy Day events, visiting their Congressional delegates on Capitol Hill.

This annual symposium is “for everybody” affected by mesothelioma. This includes patients, caregivers and family members, and those who have lost a loved one to mesothelioma, as well as advocates and scientific and medical experts. The event is designed to provide education about new research and treatment, to assist meso patients and their families and loved ones with coping skills and a network of support, and provide advocates with the tools to help make an impact in the effort to raise awareness about mesothelioma and the dangers of asbestos exposure, and to raise funds for research.

“I don’t think any community knows more about holding onto hope in the midst of difficult circumstances than mesothelioma patients and their families, ” said MARF executive director Chris Hahn. “But there is still a perception of mesothelioma as an orphan disease. It is overlooked, by the government, by the average person, despite the huge presence of asbestos in our society,” he said.

Mesothelioma is a deadly cancer that affects the lining of the chest wall or, more rarely, the abdomen, and, in very rare instances, the heart. It is caused by exposure to asbestos, and may have a latency period of up to 40 years or more from the time of exposure until symptoms manifest. It is difficult to diagnose, and often is misdiagnosed until too late for effective treatment. Even if diagnosed early, treatment is often difficult, and there is currently no known cure.

The Mesothelioma Applied Reserach Foundation is the largest independent program for mesothelioma reserach and support in the world. It operates a competitive grant program that awards up to 10 grants, or $10 million, each year to research projects most likely to lead to better treatment.

The Foundation is a non-profit organization whose main mission is dedicated to “eradicating the life-ending and vicious effects of mesothelioma.”

MARF needs funding. This is the only organization dedicated to the research and treatment of mesothelioma, but it is facing the same struggles that many other charitable foundations are facing in this tough economy – donations are down, funding is stretched thin. The foundation received 59 grant applications in 2008 – programs that WANT to explore and investigate mesothelioma in search of earlier diagnosis, better treatment methods and, ultimately a cure. But the Foundation was only able to fund five new programs in 2008.

It is estimated that 3,300 new cases of mesothelioma will be diagnosed each year.

Mesothelioma, once considered an industrial disease affecting primarily older men, is being diagnosed in younger and younger people. In 2008, a 3-year-old girl was diagnosed with mesothelioma. Mesothelioma is everybody’s problem. We cannot afford NOT to support mesothelioma research.

For more information about the Mesothelioma Applied Research Foundation and how to make a donation, visit them online.

The Foundation also needs volunteers. There are a number of ways you can help, from advocacy efforts to planning a fund-raising event, to simply helping put out the word about mesothelioma and the effects of asbestos exposure. You can find that information on their web site, too.

This was my first experience at the Symposium, and it was emotionally and intellectually exhausting, and inspiring, and motivating. I met some amazing people who, despite being personally devestated by mesothelioma, are determined to keep fighting. I’m amazed by this great group of folks.

I plan to add many more stories from information presented at the conference, and from the people I met there, in the next several days, so please check back! It’s too much to tell in one post!