The Blog

By Brian Deagon
PMC Board Member

Personal stories at symposium by family members of cancer victims exposed to asbestos reveal frustration, emotional pain endured managing the consequences of this incurable disease

Physicians, scientists and mesothelioma experts gathered at the Sheraton Delfina on Saturday, May 12^th for the 2^nd International Symposium on lung-sparing therapies for malignant pleural mesothelioma.

Dr. Robert Cameron, Director of the UCLA Mesothelioma Comprehensive Research Program and Chief of Thoracic Surgery at the West Los Angeles VA Medical Center led the symposium. Dr. Cameron has been a leading proponent of lung-sparing pleurectomy/decortication surgical procedures for over 20 years and has been an advocate for sparing the lung and treating the patient as though they have a chronic disease, similar to high blood pressure or diabetes.

The distinguished faculty at this meeting included Dr. Anne Tsao from M.D. Anderson, who presented exciting information about targeted and chemo-therapy; Dr. Raja Flores from Mt. Sinai Medical Center described his personal journey from extra pleural pneumonectomy to pleurectomy/decortication; Dr. Courtney Broaddus from the University of California, San Francisco, presented truly innovative basic biology findings, and Dr. Jim teWaterNaude from the University of Cape Town, gave a stirring account of the asbestos situation in South Africa.

Like other presenters at the conference, Dr. Flores, professor and chief thoracic surgeon at Mount Sinai School of Medicine, said more work needs to be one on discovering which procedures work best when treating patients and finding a cure. “The treatment for this disease is still evolving,” he said. “We have to educate our colleagues about what they can do to help patients find out more information.”

Dr. Warren Grundfest, Professor of Bioengineering at UCLA shared his research on fluorescent imaging spectroscopy, which will be used for the identification of tumor cells during surgery. Once the cells are identified with the special camera, the surgeon can then remove those cells with cryoblation. He explained that if this procedure is successful, it will eliminate the need for radiation following surgery.

Dr. Anne Tsao, associate professor and director of the mesothelioma program at the University of Texas is involved with studies to identify genetic mutation and molecular markers to determine the best treatment options. “With the treatment of mesothelioma, everything is changing,” she said. For years the attitude toward treatment has been one of extreme skepticism. That’s changing. “There was a lot of nihilism before,” she said. “We see it turning from it being fatal to a chronic illness and, hopefully, to a cure.”

The origins of mesothelioma come from the earth. Once seen as a miracle silicate mineral it was mined by about 25 countries. Because of its resistance to fire, heat, and electrical and chemical damage, it was widely used in fire retardant coating, pipe insulation, gaskets, and concrete, ceiling insulation and brake pads and numerous other applications. Thousands of tons of asbestos were used in World War II to wrap the pipes, line the boilers, and cover engine parts.

As a result of global efforts, its use has been sharply curtailed, removed or banned, replaced by other materials. But the dangers still lurk. The destruction and collapse of the Twin Towers on 9/11 exposed thousands of police officers firefighters, construction workers and more to asbestos.

Because asbestos-related mesothelioma can take many years to emerge and be properly diagnosed, it’s not clear year the result of exposer to those 9/11 first responders will be, said Dr. Raja Flores.

Also presenting was Linda Reinstein, co-founder and president of the Asbestos Disease Awareness Organization. In 2003 her husband, Alan, was diagnosed with mesothelioma. He died in May 2006, after multiple surgeries and chemotherapy. Like others, she endured multiple visits to doctors before someone properly diagnosed Alan.

“At the time I had never heard of mesothelioma, and I thought asbestos had been banned,” she said. “I couldn’t spell it or pronounce it. I was grief stricken and angry. He was my soul mate and my daughter’s father”.

Reinstein since then has devoted her time and efforts with ADAO so that others don’t have the same experiences. Each life lost from an asbestos-caused disease leaves behind a shattered family,” she said.

“It’s overwhelming as to how families are affected” said Clare Cameron, executive director of the Pacific Meso Center at the Pacific Heart, Lung and Blood Institute in Los Angeles. “One of the services that PMC provides is to connect those affected by mesothelioma to other patients who have already been on the journey they are about to embark on”. PMC is a 501©(3) non-profit research institute focused on finding better treatments that will provide better quality of life for those suffering with malignant pleural mesothelioma.

Mesothelioma victims and their family often endure frustrating episodes of diagnoses and treatment options. Among them is Laura Evens, who attended the conference.

Last year her father Randy was experiencing shortness of breath and other ailments. The family went from doctor to doctor seeking diagnosis until last September a biopsy was finally performed by an oncologist. Randy Evans had tested positive for malignant pleural mesothelioma. They were told nothing could be done and he had perhaps 12 months to live.

“It felt like a kick in the stomach,” Laura said. “It was as though he was being treated like a sick animal.

Randy Evens was a carpenter by trade and later founded Randy Evens General Contractor, in Carson City, Nevada, remodeling and building homes, where his exposure to asbestos likely occurred. Randy, 66, married with three children, had expectations of working well into his twilight years, a dream that ended with his diagnosis.

“Now he can’t work or hugs his kids. He’s lost weight and is short of breath,” said Laura.

They knew nothing of the disease when it was first revealed. Laura and her sister did their own research to learn more. Along the way they discovered Dr. Cameron, who last October performed his pleurectomy/decortication procedure, which took almost 14 hours. That has been followed by chemo and radiation therapy.

Evens, a detective for the Los Angeles Police Department, spends her off-time caring for her father.

“I keep a journal and chronicle all of this,” she said. “I’ve become a total advocate to learning all I can.”

The symposium included a passionate yet lighthearted talk by Patricia Crawford, a 73 year old widow from Fontana, California and a mesothelioma survivor. When she was diagnosed with pleural mesothelioma five years ago, the doctor said there was nothing he could do and she had perhaps one year to live. Crawford spoke of what she did then, in a tone that elicited some laughter.

“I did not renew my magazine subscriptions or buy anymore clothes,” she said. Her searches for referrals were unsatisfactory. Doctors tried to steer her into having the lung amputated. About ready to give up hope, her children began researching the topic and discovered Dr. Cameron.

“He was an absolute blessing who gave me a lot of hope,” she said. Cameron provided her the lung-sparing P/D treatment. That was followed by radiation therapy and cryoablation, a minimally invasive procedure that uses controlled freezing to dissipate small cancer tumors.

Currently, more than 3,000 families a year learn that their loved one has been diagnosed with mesothelioma. Dr. Cameron continues his work to find a cure.

A DVD of the symposium will be available shortly.

The 3^rd International Symposium will be held on Saturday, May 18^th, 2013.