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Rapides Ostomy Support Group Bulletin Board

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Association News

I did a hospital visitation recently with a man who had just acquired a colostomy. He was in great spirits and was truly interested in his new 'mate'. I thoroughly enjoyed visiting with him and promised to get more information to him as soon as possible.

My work took me out of town for a couple of days and upon my return he had been discharged from the hospital and I could not re-establish contact with him. I called his place of employment, and spoke with a very unfriendly personnel person who quizzed me quite rudely as to what kind of organization I was with and "what is an ostomy?". After going through a very unpleasant explanation, that I really don't think that she even paid attention to, she informed me that because of privacy concerns she would call him and tell him that I was trying to get hold of him.

I heard nothing from him and could not get through the dreaded answering machine to ask the 'human resources' person if she had called him. Three days later I read his obituary in the newspaper.

  1. My point of this story is threefold:
  2. To make sure that this does not happen to anyone else who does visitations, I urge you to get the contact info when you hit the door.
  3. To those who are in positions such as 'human resources', give your arrogance a break. Not everyone who calls is begging for a job and even if they are, they need to be treated as 'human' beings. I understand privacy concerns, what I don't understand is not doing your job.
  4. If you are at work or at home and your phone rings and you are not doing major brain surgery, answer the phone!

   ***New Treatments Improve Outlook for Colorectal Cancer ***

A new study published in the Journal of Clinical Oncology (Vol. 22, No. 1: 23-30) suggests the recently approved drug oxaliplatin can improve survival and should become standard first-line treatment for patients with advanced colorectal cancer. Experts say the research illustrates just how quickly new drugs - and new ways of administering older drugs - are revolutionizing the treatment of this deadly disease.

"Today, fewer stage III colorectal cancer patients relapse and more and more stage IV patients are alive at 2 or 3 years? likely as a result of using these new regimens," said Alberto Sobrero, of the Osepedale San Martino in Genoa, Italy, who wrote an editorial accompanying the study.

Colorectal cancer is the second leading cause of cancer related deaths in the United States. The American Cancer Society (news - web sites) estimates that 147,000 Americans will be diagnosed with colorectal cancer in 2004, and 56,730 people will die from it.

Early detection of this disease can prevent many of these deaths, but screening rates are low and many people aren't diagnosed until the cancer is advanced and liable to spread throughout the body. People with advanced disease are less likely to survive than people whose colon cancer is found at an early stage.

Standard Treatment is Evolving

For years the standard treatment to try to prevent this spread, and also to treat the cancer if it had already spread, was chemotherapy with 2 drugs, 5-Fluorouracil (5-FU) and leucovorin. Usually the drugs were given together as an intravenous injection over a few minutes. Although this regimen helped some patients, many did not benefit.

Things began to change in the late 1990s when French doctors led by Aimery de Gramont, MD, devised a more effective and less toxic way of giving these drugs. Instead of giving the drugs all at once, they gave the 5-FU by continuous intravenous infusion over 2 days every 2 weeks along with injections of the leucovorin. More than twice as many patients on that regimen experienced major tumor shrinkage with fewer side effects (Journal of Clinical Oncology Vol. 15, No. 2: 808-817). This treatment regimen is now commonly called the de Gramont regimen.

At the same time, a new drug called irinotecan, given alone, was helping patients with widespread colorectal cancer who were no longer responding to 5-FU and leucovorin. The drug was even more effective when given along with 5-FU and leucovorin. Researchers led by Leonard Saltz, MD, found that patients given all 3 drugs were more likely to have tumor shrinkage and live more than 2 months longer than patients who only received 5FU and leucovorin (New England Journal of Medicine (news - web sites) Vol. 343, No. 13: 905-914). This treatment is now known as the Saltz regimen.

Oxaliplatin Even More Effective

Oxaliplatin, which was approved by the US Food and Drug Administration (news - web sites) in August, 2002, has shown even more promise when given along with 5-FU and leucovorin. Results presented at an oncology meeting last year suggested that this drug combination could better prevent cancer recurrence in people with large tumors or tumors that had spread to the lymph nodes.

In the new study, doctors at the University of North Carolina, Chapel Hill, and other institutions, found that patients who received this drug combination lived longer than patients receiving 5-FU/leucovorin combinations containing irinotecan.

The study enrolled 795 patients who had widespread colorectal cancer. They were divided into 3 groups. One group received oxaliplatin and 5-FU and leucovorin, with the 5-FU given by infusion over 2 days. A second group received irinotecan and 5-FU and leucovorin. This time, the 5-FU and leucovorin were given by injection over a few minutes. The third group was given irinotecan and oxaliplatin together, with no 5-FU or leucovorin.

The oxaliplatin, 5-FU/leucovorin combination held the tumor in check the longest and appeared to help patients live longer. It also caused the fewest side effects. The only major problem for patients on this treatment was numbness and tingling that eventually went away in most cases. The other regimens were far more toxic, causing more nausea and vomiting and also severe diarrhea.

New Treatments on the Horizon

Because the oxaliplatin treatment is more effective and less toxic, the study authors conclude that it should become standard therapy. Editorialist Sobrero agreed, but noted that because there has been such a substantial improvement in treating colorectal cancer recently, other drug combinations now being tested may prove just as useful.

The drug bevacizumab (Avastin), for instance, appears to help patients with advanced colorectal cancer respond better to treatment and live longer, when it is given in combination with 5-FU and leucovorin. Avastin is an anti-angiogenesis drug. It prevents blood vessel growth and is thought to kill tumors by preventing them from being nourished. Avastin is on a fast track at the FDA and may receive approval this year.

Another new therapy now in trials is capecitabine, a form of 5-FU administered as a pill. Replacing the cumbersome 5-FU infusion with a pill would be a great benefit to patients if it also proved to be effective.

*** Groups criticize patient privacy ***

WASHINGTON (AP) - A group of 39 health industry organizations is asking the federal government to postpone patient privacy rules written by the Clinton administration, arguing they will hinder those who need medicine quickly. The new regulations, which will take effect two years after they become policy on Feb. 26, are meant to keep patient information from being distributed without consent. But in a letter sent to Health and Human Services Secretary Tommy Thompson on Monday, the health groups called the rules disruptive and suggested the health care industry would be severely slowed. The letter asks Thompson to delay the rules beyond Feb. 26. Among the groups that signed the letter were the American Pharmaceutical Organization, the Association of American Medical Colleges and the Blue Cross and Blue Shield Association. Under the regulations, which were passed during President Clinton's final days in office, patients could sign a one-time consent form on their first visit to a doctor allowing disclosures for routine matters like billing and treatment. But they would have to explicitly authorize most other uses of their records. And employers will be barred from perusing medical information about their workers unless it's directly related to providing health care. The health care groups signing the letter argue the rules will prevent doctors from getting refills for their patients in a timely manner because they will have to go through the extra step of filing consent forms with their pharmacies.

*** Patients' rights debate advances ***

WASHINGTON (AP) - Backers of patients' rights are set to push for legislation yet again as President Bush signaled he would sign a bill giving patients new power to sue their insurance companies. Bush was sending a letter to congressional leaders as early as Tuesday urging swift passage of the legislation that has been stalled on Capitol Hill for more than three years, an administration official said Monday. The letter will include the president's principles for legislation, including the right to sue and a "commitment to pass meaningful tort reform" that would put limits on lawsuits, the official said. It was unclear whether Bush would make signing the legislation contingent on the tort reform, the official said. The legislation being introduced attempts a middle ground on the right to sue, the most contentious issue in the patients' rights debate. It would direct many legal claims to state courts, where plaintiffs frequently win substantial damage awards. But it forces others into federal courts, where damages are typically more modest. While federal court does not allow for punitive damages of any kind, the legislation would allow a judge or jury to award a "civil assessment," essentially the same as punitive damages, of up to $5 million. Under the legislation, federal court would deal with questions about how to interpret a contract, such as whether a particular benefit is covered under the health plan. State court would get medical questions, such as whether a particular test was medically necessary, or whether a treatment was experimental. Less controversially, the legislation would force health insurance companies to give patients information about how the plan is run, to pay for many out-of-network emergency room treatments, to allow easier access to specialists and to take disputes about care to independent appeals panels.

*** *** Hormone helps Crohn disease patients***

(AP) - Human growth hormone combined with a high-protein diet significantly eased the symptoms of Crohn's disease in three-quarters of patients with moderate to severe cases, a study found. Crohn's affects the digestive tract, causing persistent diarrhea, abdominal pain, bleeding and breakdown of the intestinal wall. About half of all Crohn's patients require surgery at some point to remove intestinal obstructions or repair holes in the bowel. There is no known cure, though drugs can ease symptoms in some patients. The study in Thursday's New England Journal of Medicine found that 11 of 19 adults treated with growth hormone while on a high-protein diet went into remission. Three others saw significant improvement. Eighteen patients taking a dummy drug while on a high-protein diet saw no significant improvement. The study was supported by grants from Eli Lilly and the Genentech Foundation for Growth and Development, a nonprofit that gets funding from Genentech Inc. Both pharmaceutical companies make growth hormone. See full story at

*** *** New drug may stop cancer growth

NEW ORLEANS (AP) - A new drug that targets one of the basic genetic flaws in cancer shows promise in early tests on humans, halting the growth of tumors and making them more vulnerable to chemotherapy. The medicine is one of many in development that attempt to shift cancer treatment away from a broad attack on all rapidly dividing cells. Instead, the new drugs focus on the precise genetic mutations that make tumors different from healthy tissue. Many of these new drugs attempt to interfere with tumors' use of epidermal growth factor, one of the chemical signals that plays a crucial role in their survival. On Sunday, researchers presented data on experimental use of one of these drugs, code-named IMC-C225. See full story at

*** Diet's anti-cancer benefits doubted

(AP) - Two large studies cast doubt on the widely held belief that eating low-fat, high-fiber food will lower the risk of colon cancer. Such a diet is recommended by health groups for many reasons, but evidence of the anti-cancer benefit has been unclear. To help resolve doubts, researchers conducted two large experiments, putting people on different diets and counting potentially cancerous growths in their colons and rectums for up to four years. The researchers were disappointed to find no apparent effect from the low-fat, high-fiber diet or high-fiber supplements. The two new studies were published Thursday in The New England Journal of Medicine. Similar results were reported in a study published in the journal in January 1999. See full story at

*** FDA OKs colorectal cancer treatment

WASHINGTON (AP) - For the first time in years, the government has approved a new first-line treatment for patients whose colorectal cancer has spread, saying the newer therapy could prolong survival. The Pharmacia Corp.'s Camptosar won Food and Drug Administration approval Thursday. It can be used, in combination with two standard cancer drugs, as soon as colorectal cancer has metastasized. Camptosar has been sold as a follow-up cancer treatment since 1996. The new approval "will likely change the way patients with metastatic colorectal cancer are treated," said Dr. Robert Justice, FDA's deputy director of cancer drugs. About 130,000 Americans will be diagnosed with colorectal cancer this year. About half of the patients treated with surgery, See full story at

*** Genetic approach to cancer promising

SAN FRANCISCO (AP) - For the first time, scientists have reported success against cancer using an intriguing technique called antisense technology, which zeros in on a cancer gene to halt malignancy at its roots. Researchers have been experimenting with this approach for more than a decade, but they described the first cases Tuesday in which the technique actually seemed to slow a deadly malignancy. Testing is still early, and doctors do not know whether the treatment will pan out. But a large international study is starting to settle this. "We've all been waiting for something like this. It's very exciting," commented Peter Jones, director of the USC/Norris Comprehensive Cancer Center and Hospital in Los Angeles. See full story at

*** Committee recommends cancer drug

WASHINGTON (AP) - A Food and Drug Administration advisory panel is recommending approval of a drug to be added to first-line treatment for widespread colorectal cancer. The Oncologic Drug Advisory Committee on Thursday recommended approval for Camptosar injection, made by Pharmacia & Upjohn, in combination with other drugs as a first treatment for patients with colon and rectal cancer. The FDA is not bound by advisory committee recommendations but usually follows them. Camptosar won FDA approval as a follow-up cancer treatment in 1996. The committee unanimously recommended the earlier use following reports from clinical trials in which patients who received the drug showed delayed tumor progression and lived longer than those without it. See full story at

*** Report urges cancer-care overhaul

WASHINGTON (AP) - Eight million Americans require some form of cancer care each year, but too many are not getting the best treatment, says a report issued Tuesday that suggests creation of a national system to assess the quality of cancer care. "We were all shocked at how little information is available on that topic," said Dr. Joseph Simone of the University of Utah, co-author of the National Cancer Policy Board report. Until there is a system to help patients assess whether they're getting optimal care, the report offered some general advice, such as seeking out hospitals that are well-experienced with cancer-related issues. See full story at InfoBeat.Com

*** Enzyme found that may feed tumors

WASHINGTON (AP) - In a dramatic advance in the understanding of cancer, researchers have found an enzyme that helps build the blood vessels that feed the growth of tumors, a major step toward finding new drugs to attack the disease. Researchers at Duke University in Durham, N.C., report they found on the surface of cells inside blood vessels a type of enzyme, called ATP synthase. The enzyme apparently provides the energy for the growth of blood vessels, said Dr. Salvatore V. Pizzo, a member of the Duke team and co-author of a study appearing Tuesday in the Proceedings of the National Academy of Sciences. Without such energy, he said, tumors can never grow beyond the size of a pin head.

*** On the Home page and the Links page are some 'clickable' links to "Web Rings". A web ring is a compilation of web sites that are specifically oriented towards certain interests. They are managed by a 'ring master' who scrutinizes the sites to ascertain whether they actually do relate to the theme of the web ring. If they don't he/she rejects their inclusion in the ring. It is a neat idea and we are participating in three different rings at this time because they all relate to conditions specific to this group. If you know of any other rings that should be included on our site, e-mail me below and I will check into it.

*** I have a 'links' page up. Take a look at it and tell me what you think. E-mail your favorite Ostomy/health related site addresses and I will put them on the page. s/Mike

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