By Jo Ciavaglia,
Staff writer, Posted: Sunday, July 3, 2011:
At this point in his life, Sam Ceccola has been told he has cancer so many times the news barely fazes him.
“I’ve had enough,” he said. “Anytime they tell me something is wrong, I laugh.”
Ceccola, 67, has been diagnosed with cancer — or a cancer reoccurrence — at least 12 times since 1992, he estimates. His most recent diagnosis was last year.
Now, Ceccola believes scientists may have an explanation why, and it could also be the reason behind his wife’s health problems, too. But the diagnosis puts the Warminster resident in the middle of a major growing controversy within the medical research community.
Last year, Ceccola tested positive for XMRV, a little known retrovirus. Most people have never heard of XMRV or retroviruses, which isn’t surprising since only two other infectious human retroviruses have been identified, the most well known one being HIV, the precursor to AIDS. Retroviruses are known to infect immune cells, causing inflammatory diseases, neurological disease, immune deficiency and cancer. The viruses are transmitted through body fluids such as blood, semen and breast milk.
XMRV stands for xenotropic murine leukemia virus-related virus, part of a class of retroviruses known to cause cancers and other diseases in some mice. XMRV was first identified in samples of some human prostate cancer tumor samples in 2006.
Three years later, researchers at the Whittemore Peterson Institute for Neuro-Immune Disease in Nevada first reported a link between XMRV and patients with chronic fatigue syndrome, a disorder affecting an estimated 1 million to 4 million U.S. adults. Scientists there found XMRV in the blood of 67 percent of people with the disorder, compared with 4 percent of people without the condition. That raised concerns that a new retrovirus associated with human disease was circulating, creating a potential public health threat.
The National Institutes of Health and Centers for Disease Control and Prevention launched further studies into the presence of XMRV. In December, the American Red Cross announced it would no longer accept blood donors diagnosed with chronic fatigue syndrome, citing concerns over XMRV and patient safety.
Since the original 2009 study, though, at least 11 other scientific research groups have tried, and most have failed, to find the retrovirus present in patients with chronic fatigue, prostate cancer and healthy people used as control groups.
Most recently, a National Cancer Institute research team, in collaboration with other U.S. scientists, concluded a retrovirus found in blood samples of some patients likely appeared as a result of lab contamination. A second NCI study also found no presence of XMRV in the blood samples from 61 patients (including 43 in the original study published in 2009) who were all told they tested positive for XMRV.
The Whittemore Institute has called the latest study findings premature. Other scientists have suggested other explanations, including false-negatives in some people.
A large, multi-site National Institutes of Health-sponsored trial is under way to see if the XMRV virus can be detected in patients with chronic fatigue syndrome and healthy patients.
Ceccola is part of another smaller NIH study also examining XMRV presence in people who have previously tested positive for the retrovirus and in healthy people, said Dr. Frank Maldarelli, who’s leading the study for the NIH’s National Cancer Institute. The results could be used to formulate a new screening testing standard.
“There are people who say they can find it, and people who say they can’t find it,” said Maldarelli, who is also part of the center’s HIV drug resistance program. “I wonder if one of the reasons it’s so controversial is because it’s not present in large quantities of individuals, if it’s present at all.”
While most XMRV research has focused on chronic fatigue syndrome, its connection with prostate cancer is what most interests Ceccola.
After reading about Ceccola’s cancer battles in an in-flight magazine, a woman contacted Judy Mikovits, the research director at the Whittemore Peterson Institute. Mikovits was a lead author of Whittemore’s groundbreaking 2009 XMRV study.
Ceccola said Mikovits contacted him in December and asked if he would be willing to be tested for XMRV. Ceccola had never heard of XMRV, but he agreed, and the test was positive.
Earlier this year, the National Institutes of Health invited Ceccola to participate in an institute study involving XMRV and people with chronic fatigue syndrome, though he doesn’t have that disorder. His XMRV status is the reason he was picked, Maldarelli said.
Ceccola agreed to be in the study, in part, hoping it might also bring some answers for his wife, Joan. She hasn’t been tested for XMRV, but she has been diagnosed with fibromyalgia, a chronic disorder that shares many similarities with chronic fatigue syndrome. The main difference is that fibromyalgia is characterized by widespread musculoskeletal pain while the primary symptom of chronic fatigue syndrome is extreme fatigue that doesn’t improve with rest. Some scientists theorize the disorders could be related.