The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Interesting research into multiple cancers and XMRV by the NIH

Discussion in 'XMRV Research and Replication Studies' started by Countrygirl, Jul 3, 2011.

  1. Countrygirl

    Countrygirl Senior Member

    This is a fascinating article on a man with multiple cancers, who is XMRV positive and part of the research conducted by the NIH on the potential association between the retrovirus and cancer. His wife has fibromyalgia.


    Local man with multiple cancers is part of national study

    Matt Stanley/Staff Photographer
    Sam Ceccola, who has survived at least 15 separate bouts of cancer, sits in the living room of his Warminster home Monday. The National Institutes of Health has contacted Ceccola to participate in a clinical study involving people who have tested positive for a new and controversial retrovirus called XMRV.

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    Posted: Sunday, July 3, 2011 12:00 am | Updated: 1:52 am, Sun Jul 3, 2011.

    By Jo Ciavaglia
    Staff writer | 0 comments
    ?At this point in his life, Sam Ceccola has been told he has cancer so many times the news barely fazes him.
    Ive 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 wifes 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 isnt 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, whos leading the study for the NIHs 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 cant find it, said Maldarelli, who is also part of the centers HIV drug resistance program. I wonder if one of the reasons its so controversial is because its not present in large quantities of individuals, if its present at all.
    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 whove 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-Hodgkins 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 hasnt.
    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.
    After reading about Ceccolas 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 Whittemores 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 doesnt 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 hasnt 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 doesnt 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 3-hour review of his and his familys 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. Hes 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. Robert Maxwell, who practiced in Jenkintown and Willow Grove until he retired at the end of June. Hes in pretty good shape for now, added the 77-year-old Maxwell.
    After all these years, Maxwell says hes still amazed at Ceccolas 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 Im 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.
  2. Jemal

    Jemal Senior Member

    Thanks Countrygirl, that was an interesting read!
  3. Enid

    Enid Senior Member

    Many thanks for posting Countrygirl - this is a stunning read in all ways.
  4. Daffodil

    Daffodil Senior Member

    poor man. i cant believe we have this disease. bravo to him for being so strong

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