XMRV & Cancers part of National Study

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Courier Times|The Intelligencer|

Burlington Country Times

Warminster

Local man with multiple

cancers is part of national study

Sun Jul 3, 2011.

By Jo Ciavaglia

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

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. 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.”

CANCER MYSTERY

While most XMRV research has focused on chronic

fatigue syndrome, its connection with prostate cancer

is what most interests Ceccola.

Statistically, national data suggest the lifetime odds

of developing cancer are one in two for men and one

in three for women. Cancer survivors face an

increased lifetime risk of developing subsequent

cancers.

But Ceccola is among fewer than 10 percent of U.S.

cancer survivors who’ve been diagnosed with multiple

unrelated cancers, according to national statistics. A

2007 National Cancer Institute study estimated that

of 9.6 million cancer survivors diagnosed between

1975 and 2001, about 8 percent were diagnosed with

more than one primary tumor and most had two or

more cancers of different primary sites.

Ceccola was diagnosed with mantel cell lymphoma, a

rare, aggressive and often deadly form of

non-Hodgkin’s blood cancer at age 48. The diagnosis

was followed by ones for prostate cancer (1994), lung

cancer (1997) and brain cancer (2007), and melanoma

(2009). In between the other cancers, he also had

five recurrences of his original lymphoma between

1999 and 2002, which progressed to stage four.

Ceccola, a former pack-a-day cigarette smoker, has

no strong family history of cancer. His dad is 94 years

old and he lives independently, and an aunt recently

died at age 101. “I hope those genes are in me,”

Ceccola laughed.

Scientists have various theories about why people

develop more than one type of cancer.

Some cancers are genetically related, meaning if you

get one, you have a higher risk of developing a

separate, new cancer. Some believe multiple cancers

are related to a genetic defect. And chemotherapy

and radiation, common cancer treatments, can induce

cancers.

Retroviruses also can cause cancer by stimulating

tumor growth. In humans, the HTLV-1 and HTLV-2

retrovirus is associated with a type of T-cell leukemia

and lymphoma, and people with HIV carry a higher risk

for Kaposi sarcoma, non-Hodgkin lymphoma and

cervical cancer, than uninfected people.

Ceccola has had chemotherapy for each cancer,

repeated radiation and a stem cell transplant. He has

other serious health problems, which some doctors

say are related to his near two decades of cancer

treatments.

In 2008, doctors told him he had early-stage

myelodysplastic syndrome (called MDS), considered

pre-leukemia. The condition is a result of damaged

blood-forming cells in the bone marrow, which could

be related to chemotherapy, according to the

American Cancer Society. About one-third of patients

with MDS develop acute myelogenous leukemia. So

far, Ceccola hasn’t.

But he had a recurrence of melanoma on his back last

year, which was removed. Then a routine colonoscopy

last December found inverted polyps that typically are

cancerous.

But testing that would confirm the diagnosis —

potentially his sixth cancer — had to wait. An

endoscopy performed the same day revealed that his

mantal cell cancer had reappeared, this time in his

stomach.

Then came the phone call that thrust him into the

growing XMRV controversy.

SEEKING GOLD

After reading about Ceccola’s cancer battles in an

in-flight magazine, a woman contacted Judy Mikovits,

the research director at the Whittemore

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.

At the end of March, Ceccola drove to NCI

headquarters in Bethesda, Md., where researchers

took 30 blood samples, followed by a 3½-hour review

of his and his family’s medical and health history.

The study will take blood samples from 60 people,

divided equally between people who previously tested

XMRV-positive and healthy individuals, Maldarelli said.

The data will be used to help formulate a “gold

standard” for determining positive and negative

results.

With the other two human retroviruses, there are

separate screening and confirmatory tests, Maldarelli

explained. For most people, the initial screening

results are accurate, but false-positives do happen

and the second test catches them, he said.

One possible explanation for the conflicting XMRV

research outcomes could be that a person with a

small amount of virus could register as undetectable

using some current screening methods, Maldarelli said,

which is why finding a single standard to judge

positive and negative results is critical.

The study findings should be released later this year,

Maldarelli said.

Meanwhile, Ceccola is scheduled for another

colonoscopy in late July to see if the ingrown polyps

can be removed. He’s also awaiting the biopsy results

of two “suspicious” moles on his back, which could

signal his third recurrence of melanoma.

On the positive side, Ceccola finished chemotherapy

for his mantal cell cancer recurrence in May, and he

appears to be in remission, said his long-time medical

oncologist, Dr. Maxwell, who practiced in

Jenkintown and Willow Grove until he retired at the

end of June. “He’s in pretty good shape for now,”

added the 77-year-old Maxwell.

After all these years, Maxwell says he’s still amazed at

Ceccola’s continued resilience.

“It is the most striking thing about him. That attitude

is remarkable,” he said. “Some people might curl up

into a ball and say, life is so tough for me I’m not

going to do anything, but he has a very different

approach.”

In the meantime, Ceccola keeps living one day at a

time.

Earlier this year, he was contacted by another local

man with multiple cancers. After a couple phone

conversations, they arranged a lunch meeting. But

the lunch was canceled at the last minute when

Ceccola landed in the hospital.

While recovering, Ceccola noticed a newspaper

obituary of a guy with the same name and address as

the one he planned to meet for lunch. The man never

called Ceccola back to reschedule, so he believes the

man died.

“I do feel very lucky,” he added. “All odds say I should

have been dead a long time ago.”