By Kate E. Salute
In April of 2000, just six weeks after her father was diagnosed with a form of cancer called pleural mesothelioma, Malverne native Erica Iacono, along with her mother and two sisters, buried him. Anthony Iacono was 51. He had been a teacher at New Utrecht High School in Brooklyn for more than 25 years, and had a side job installing alarm systems.
Erica said that when she typed ³mesothelioma² into Google that year, the search result read ³always fatal disease.² Mesothelioma, or meso, according to Dr. Harvey Pass, chief of the division of Thoracic Surgery and Thoracic Oncology at NYU¹s School of Medicine and Comprehensive Cancer Center, ³is a cancer of the lining of the lung or the lining of the belly caused by the fiber asbestos. When the fiber [asbestos] gets into the tissue, with time it can turn the tissue into cancer.²
The Environmental Working Group cites a 20- to 50-year latency period for meso, and attributes 43,000 deaths between 1979 and 2001 to meso and the often fatal non-cancer asbestosis. ³Asbestosis is a disease of the lung without cancer,² Pass explained. ³Asbestos can also cause lung disease and destroy your lungs without causing cancer.²
Pass is also the chairman of the Scientific Advisory Board for the Mesothelioma Applied Research Foundation (MARF), a not-for-profit organization he co-founded in 1999 to find a way to detect meso earlier and, ideally, to find a cure. The organization also aims to help educate not just patients and their families, but a public that is largely ³apathetic,² Pass said, when it comes to this kind of cancer. Pass has treated more than 500 meso patients and operated on more than 300. ³Which is a lot,² he said, ³because there¹s only 2,000 to 3,000 cases per year.²
After her father¹s death, Iacono recalled, she felt compelled to do something to help raise awareness of the disease. ³The only coverage that meso gets is advertisements for lawyers who sue for asbestos exposure to get money,² she said. ³But this isn¹t about money, it¹s about people. That¹s not the exposure that I want for this.² She found MARF in 2000, and started writing letters to the organization and to senators to bring more attention to meso. ³There¹s not a community for meso like there is for breast cancer and heart disease, and MARF isn¹t a huge organization,² Iacono said.
Meso in Merrick
Last year, after Merrick resident Janice Malkotsis¹s father, Joseph Lombardo, died of peritonial meso, MARF put her in touch with Iacono. Lombardo died just over a year ago, at age 69. Before he died, Malkotsis promised her father that she would do whatever she could to raise public awareness about the disease that caused his slow, painful death.
Peritonial meso, Pass explained, is a rare form of the cancer that begins in the stomach. Describing its symptoms, Pass said, ³The belly gets big because of fluid in it, and you get the feeling of getting full easily, shortness of breath.²
Malkotsis said that doctors didn¹t know how to treat her father, since his form of the disease was so rare. Lombardo¹s first symptom in 1999 was swelling of his testicles. Doctors said it was a ³hydroseal,² and that once he had them drained, he would be OK. ³He wasn¹t OK,² said Malkotsis. ³It took about a good year before he was properly diagnosed.²
When he was, in 2002, Lombardo refused experimental drug treatment and opted to take the homeopathic route, which meant a complete overhaul of his diet. ³He went on vitamins, he ate organic ‹ no meat, nothing white,² Malkotsis recalled, ³and for about a year, nothing really progressed.² Lombardo spent four months at the Burzynski Clinic in Houston, and underwent gene therapy.
Then things took a turn for the worse. ³Tumors grew inside his stomach and were coming outside of it ‹ bursting through his skin,² Malkotsis said. The oozing pus and blood left Lombardo in agony whenever he had so much as a sheet over his midsection.
He contracted the disease during a 30-year career as a contractor who dealt with the asbestos in sheetrock, unaware of the hazard. ³When my father was still alive, he was very angry that there was all this information that wasn¹t given to the public about the dangers of asbestos,² said Malkotsis. ³He would have worn a mask.² It was Lombardo¹s fury at the dearth of information about the disease and the danger of asbestos fibers that led Malkotsis to attempt to put together a publicity campaign that at first, she said, was less than well received.
³This disease is something that is going to become worse and worse as the years go on in lieu of Sept. 11,² Malkotsis said. ³... The buildings were constructed with asbestos and no one wanted to cover it, and I don¹t know why ‹ it¹s a huge story.²
A walk in their memory
In the year since Malkotsis¹s father died, she and Iacono decided to hold an event to draw attention to meso. MARF, which is based in California, suggested some ideas that had been successful there. Malkotsis thought of organizing a walk, and Iacono jumped on board with the idea. The first annual 5-K Walk for Hope is scheduled for April 23 at Eisenhower Park in East Meadow, at 10 a.m.
³We¹re five years out from 9/11, and I would hate for this to be an epidemic 20 years from now,² said Iacono. ³I don¹t want it to be a death sentence every time someone is diagnosed. ... There are tons of people who are going to be affected by this. People who live on Long Island and work in the city who are firefighters and paramedics and policemen and women, rescue workers who were there on Sept. 11.²
Pass said there is no way to know if the events of Sept. 11 will ultimately create a meso epidemic, which is why money is needed to do more research to find a cure. ³Not everyone who works with asbestos gets meso,² he said. And, he noted, rescue workers who spent time in the ruins of the World Trade Center are monitored carefully.
Malkotsis called the walk a small gesture. ³We¹re taking baby steps towards the big goal,² said Iacono. ³Hopefully [the walk] will eventually garner a lot of attention, and make meso more mainstream. That¹s the ultimate goal.²
First annual 5K Walk for Hope
Date: April 23
Time: 10 a.m.
Place: Eisenhower Park, East Meadow
All proceeds will benefit the Mesothelioma Applied Research Foundation, a not-for-profit organization. Registration is $15. Those interested in taking part can contact Janice Malkotsis at (917) 751-2776 or by e-mailing her at jmalkotsis@aol.com. More information about MARF can be found at www.marf.org.
