Judy Foreman

Nationally Sindicated Fitness, Health, and Medicine Columnist

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Lyme disease vaccine is only part of answer

April 26, 1999 by Judy Foreman

With summer — and tick season — fast approaching, there’s a new weapon available to reduce your chances of catching Lyme disease: a vaccine called LYMErix, approved by the Food and Drug Administration late last year.

Now, the bad news. The vaccine isn’t approved for kids under 15 or people over 70. It protects about 80 percent of the people who get it, and that’s if you get three shots, which, according to current FDA licensing, must be taken over 12 months. If you get only two shots, a month apart, there’s only a 50 percent chance you’ll be protected. And no one knows how long the protection will last.

Moreover, even if the vaccine were 100 percent effective, you’d still have to take the usual precautions — wearing long sleeves and pants and using tick repellents and removing attached ticks — if you live, work or play in woodsy or marshy areas. That’s because ticks that carry Lyme can also infect you with babesiosis and erlichiosis, other tick-borne infections for which there are no vaccines.

But there’s a promising new wrinkle in all this. Last fall, the vaccine manufacturer, SmithKline Beecham, reported that it’s possible to compress the timetable for the three immunizations into six months or even two and still get the same degree of protection as with the year-long schedule.

The company is not pushing this timetable — yet — because it’s still in the process of seeking FDA approval for it. But since there’s justification for accelerating the shots, it’s worth talking to your doctor about it if you’re at high risk.

Lyme disease is a nasty, though rarely fatal, illness that is both often-missed and overreported. It strikes about 12,000 to 16,000 Americans a year, mostly in the Northeast, but also in the upper Midwest, Pacific Northwest and elsewhere.

It starts with a bite from the deer tick, Ixodes scapularis. If you get the ticks off your skin within 36 to 48 hours, you’re probably safe because it takes this long for the disease to be transmitted, says David Weld, executive director of the American Lyme Disease Foundation in Somers, N.Y.

The bite causes a rash that often looks like a “bull’s eye” and flu-like symptoms — fever, chills, headache and fatigue — as well as occasional facial weakness and heart disturbances. Some people may have chronic arthritis or neurologic problems even months or years later.

In fact, scientists from Boston reported this month at an international conference that they have found a neurotoxin made by the Lyme bacterium.

The toxin “may explain memory problems and why nerves get stimulated so that they fire off and you get pain, numbness or tingling,” says Dr. Sam Donta, the lead researcher and a Lyme disease specialist at Boston Medical Center and the Boston VA Medical Center.

‘The evidence is accumulating,” he says, “that this is a subtle, chronic infection, but we have a long way to go.”

If you catch Lyme disease quickly — while you still have the rash — antibiotics often work. But not always. New evidence also presented at the conference showed that even after receiving antibiotics, some dogs with Lyme disease still harbored the bacteria that causes it, Borrelia burdorferi.

Complicating the decision about whether to get vaccinated this year (other vaccines are in the pipeline for future seasons) is the fact that scientists are unsure as to whether this tick season will be worse than usual. Some say it will be, but much of this is guesswork is based on the complicated life cycle of ticks.

Adult ticks mate in the fall on the bodies of large mammals, chiefly deer.

No disease is transmitted at this point, but after feeding on deer blood, pregnant female ticks drop off and bury themselves in leaves. Each female lays about 3,000 eggs, which then hatch — as larvae — the following summer.

The larvae are harmless at first. But they feed on mice or other rodents, and if those animals carry the Lyme bacteria, the larvae become infected, too. After feeding on mice, the larvae huddle in the ground for the winter, then emerge the following spring as nymphs that can potentially infect humans.

But a number of things can affect how many ticks there are in any given area in any year. A mild winter and a wet spring, for instance, can boost the tick population — and may this year.

So can a bumper crop of acorns two years before the ticks appear, says Rick Ostfeld, an ecologist at the Institute of Ecosystem Studies, a private nonprofit research organization in Millbrook, N.Y.

“There are two pathways by which acorns have an effect,” he says. Deer love acorns, so when there’s a bumper crop of acorns, it lures deer deep into oak forests. Mice love acorns, too.

So lots of acorns means lots of mice survive the winter, which means that “two summers after a good acorn fall you have lots of infected nymphs,” he says. Since there were bumper acorn crops in 1997 and in 1998, Ostfeld predicts “a pretty bad summer for Lyme disease in 1999 and worse in 2000.”

Dr. Ned Hayes, an epidemiologist at the Centers for Disease Control and Prevention who specializes in bacterial diseases transmitted from animals to humans, is less convinced about this year’s forecast: “I wouldn’t make any predictions.”

But he and other Lyme specialists, among them, Dr. Bela Matyas, medical director of epidemiology at the Massachusetts Department of Public Health, say that if you’re at risk for Lyme disease, you should talk to your doctor soon about getting the vaccine.

The vaccine works by stimulating the immune system to make antibodies to a protein called OspA, which is found on the surface of the bacteria in the tick’s gut. The vaccine does not attack the tick itself. But when the tick sips a person’s blood, it sucks in the antibodies, which then kill the bacteria.

This process is not foolproof, however. If bacteria enter the body despite vaccination, they quickly stick a different protein called OspC on the surface. The vaccine doesn’t work against this protein, which means that if the first line of defense fails, you may still get infected.

Next month, the Advisory Committee on Immunization Practices, a group of experts that advises the CDC on vaccine issues, is expected to recommend that anyone at high risk of Lyme disease because of frequent or prolonged exposure to tick-infested habitats should consider being vaccinated.

For people with less frequent or less prolonged exposure, it’s unclear how much added benefit a vaccine provides over standard anti-tick precautions.

People with minimal exposure to tick-infested areas need not get the vaccine.

People who have uncomplicated arthritis from a prior Lyme disease infection and are at high risk should consider getting the vaccine, the committee is expected to say. But those who have Lyme disease that has not responded to treatment should not, because the vaccine could make things worse. In healthy people, however, initial data indicate that there are no serious side effects.

The bottom line is to discuss vaccination with your doctor and remember that it takes a while for the vaccine to kick in, it doesn’t work for everyone, and even when it does, it doesn’t protect against other tick-borne illnesses. This means you still have to take precautions to avoid ticks — forever.

  • Look for the deer tick on your skin or clothing after walking in fields or woods. The tick – a dark speck the size of a poppy seed – is most likely to bite in the nymph stage.
  • If you can’t avoid areas where ticks thrive – woods, marshy areas, high grass and bush – wear long-sleeved shirts, long pants tucked into socks, and closed-toe shoes. Light colors make it easier to spot ticks on your clothes.
  • Use insect repellants. Permethrin kills ticks on contact, but it can be irritating, so spray it on your clothes, not your skin. You can use DEET (diethyltoluamide) on your skin and clothes. State guidelines vary, but in Massachusetts and some other states, health officials say you should not use DEET on infants, and don’t use products with more than 15 percent DEET on children. Adults should use products with no more than 30 to 35 percent DEET. High concentrations of DEET may cause severe allergic reactions and seizures.
  • When you get home from a tick-infested area, shower or bathe and remove any ticks with tweezers within 24-48 hours.
  • If pets have been in tick-infested areas, check them, too, as well as areas where they sit or lie.
  • If you become infected – you should notice a rash and flu-like symptoms – call your doctor; antibiotics are often effective if given early, but not always.

For more information, contact:

  • The Lyme Disease Foundation, 1-800-886-LYME (or 1-800-886-5963) or on the Web, www.lyme.org.
  • American Lyme Disease Foundation, 914-277-6970 or on the Web, www.aldf.com.

Lyme disease in Massachusetts

The original column in the Boston Globe contained a photo and a chart. The Photo Caption read:

  • With summer — and tick season — fast approaching, there’s a new weapon available to reduce your chances of catching Lyme disease: a vaccine called LYMErix, approved by the Food and Drug Administration late last year. Now, the bad news. The vaccine isn’t approved for kids under 15 or people over 70. It protects about 80 percent of the people who get it, and that’s if you get three shots, which, according to current FDA licensing, must be taken over 12 months. If you get only two shots, a month apart, there’s only a 50 percent chance you’ll be protected. And no one knows how long the protection will last.

The chart data is available at the Boston Globe on Microfilm.

Skin ailment leaves people red-faced

April 19, 1999 by Judy Foreman

What Allison Taylor hates most about rosacea, the skin problem that turns faces red and makes people look like they’ve had a few too many, is the chronic embarrassment.

“I wear a lot of makeup because I’m so self-conscious,” says Taylor, 35, who manages a medical practice in Boston. “I always look sunburned. People ask me if I don’t feel well.”

For others, like a 44-year old Cape Cod psychologist who asked that her name not be used, it’s the complications of rosacea, like eye irritation, that are unattractive and make wearing contact lenses impossible. “It’s not like I won’t go out of my house,” she says. But it’s a “major pain in the neck.”

Rosacea is an unglamorous problem. It won’t kill you. It won’t even really make you sick. But emotionally, it can make life miserable for the 13 million Americans who have it. Some hate to go to work; others, like Taylor, dread parties because some foods and alcohol make you “get redder and redder.”

Rosacea is a chronic condition that first strikes in one’s 30s and 40s, though many people suffer for years before they’re properly diagnosed. Famous faces with rosacea have included Rembrandt, W.C. Fields, and Princess Diana. President Clinton also suffers from the ailment.

Initially, rosacea is just excessive flushing and blushing caused by dilation of blood vessels on the cheeks, nose, chin or forehead, says Dr. Arthur Sober, associate chief of dermatology at Massachusetts General Hospital.

Nobody is sure why this happens, but it may be an abnormal response to temperature changes. In fact, researchers have shown it’s the heat in hot coffee or tea, not the caffeine, that triggers flushes. Other triggers include stress – notably anger and embarrassment – sun, wind, hot showers, coughing, spices, chocolate, tomatoes, and even exercise.

When a healthy person exercises hard, he may get red, “but this usually calms down in about 15 minutes,” says Dr. Mark V. Dahl, chairman of dermatology at the University of Minnesota Medical School. When someone with rosacea exercises, his face may stay red for an hour or two.

Chronic flushing leads to the appearance of broken blood vessels, or telangiectasia. “If you have a constantly increased blood flow to the skin, it creates new blood vessels. They may look broken but they’re not,” says Dr. Steven J. Ugent, a dermatologist at Boston Medical Center. But these vessels are treatable with lasers – “perhaps the most gratifying cosmetic procedure one can perform because it works so well and there’s so little risk,” says Dr. Robert Stern, a Beth Israel Deaconess Medical Center dermatologist.

In many people, though, rosacea doesn’t end with flushing and blushing but progresses to inflammation, in which the face breaks out with papules (little red bumps) and pustules (pus-filled pimples) that may look like acne.

Some think this may be caused by skin mites called Demodex folliculorum, though it’s unclear which comes first, the mites or the rosacea. The mites may trigger inflammation, but they may also flock to sites of rosacea and take up residence.

Others blame Helicobacter pylori, the bacteria that causes stomach ulcers. One recent study of more than 200 people, however, found that the prevalence of H. pylori is no higher in people with rosacea than in those without it, says Dr. Kenneth Arndt, chief of dermatology at Beth Israel Deaconess. And treatment of H. pylori doesn’t seem to get rid of rosacea.

What does work for inflammatory rosacea is the antibiotic metronidazole (Flagyl), applied as a cream or gel, with or without tetracycline, another antibiotic taken in pill form.

“Antibiotics work tremendously well,” says Dahl of Minnesota, though researchers still aren’t sure whether it’s because the drugs – often taken for months or longer, at low doses – actually kill microbes or simply quell inflammation.

In some cases, rosacea progresses to a third phase, called rhinophyma – or W.C. Fields nose – in which the nose becomes bulbous as oil glands become enlarged and the layer of skin called the dermis becomes thicker.

“This is women’s greatest fear,” says Dr. Joseph Bikowski, clinical associate professor of dermatology at the University of Pittsburgh. In reality, women “rarely, if ever” get rhinophyma, he adds, though men often do.

If the nose gets so big it interferes with vision, surgery is necessary to resculpt tissues. In cases where rhinophyma is caught early, a drug called Accutane may work, though it can’t be taken by women who are pregnant or who might become pregnant because it causes birth defects.

In some people, like the Cape Cod psychologist, rosacea can attack the eyes. She’s been taking low dose antibiotics for years, which helps, though she still can’t wear eye makeup.

But for most people with rosacea, it’s the embarrassment, not the medical problems, that hurts most, especially the assumption that rosy faces are a sign of alcoholism.

“People assume that people with rosacea are drinkers, when that is not the case,” says Ugent of Boston Medical Center. “You can have rosacea and never touch alcohol.”

“People tend to trivialize it because it’s a skin disease,” adds Dahl of Minnesota. But “for some people, it’s life-destroying.”

Triggers of rosacea

A number of foods, drinks, skin care products and other factors can cause flare-ups of rosacea, including these:

Foods:

  • Certain cheeses, chocolate, soy sauce, vinegar, citrus fruits, spicy and thermally hot foods.
  • Beverages: Alcohol, especially red wine, beer, bourbon, gin, vodka or champagne. Any thermally hot drink.
  • Emotional factors:
  • Stress, anxiety, embarassment, anger.
  • Skin Care Products and Medications:
  • Cosmetics and hair sprays, especially those containing alcohol, acetone, witch hazel or fragrances.
  • Topical steroid creams.
  • Any product that causes redness or stinging.
  • Vasodilators (used to lower blood pressure).

Thermal factors: 

  • Saunas, hot baths, excessively warm environments.

Weather:

  • Sun, strong wind, cold, humidity.

Exercise:

  • Any workout that raises body temperature and increases blood flow to the face, such as aerobic exercise.

Medical conditions and behavioral factors:

  • Menopause, chronic cough, caffeine withdrawal, smoking.

For more information, contact the National Rosacea Society on the web at www.rosacea.org/ or by telephone, 1-888-NO-BLUSH.

Alcohol’s insidious grip

April 5, 1999 by Judy Foreman

Barbara Raymond, now in her mid-50’s, started drinking hard as a 15-year-old in Abington. At the time, she had no idea why, though she later linked it to depression.

She made her first suicide attempt at 16. At 18, in the throes of alcoholic amnesia, she married a man she’d known for two weeks. He turned out to be an alcoholic and a batterer who broke her arm and gave her “a bunch of bruises” over the years. She rarely sought care, she says: “I was too ashamed.”

By 24, she’d had six kids and several more suicide attempts. After the last, she ended up “dead on arrival” at a local hospital, where doctors revived her and someone suggested Al-Anon, a program for people affected by other people’s drinking.

Nobody asked whether she had a problem herself. But she knew she did. “I detoxed at AA [Alcoholics Anonymous]. I had the DTs (delerium tremens, severe withdrawal symptoms). No one treated me. I did it by myself, at home . . .At the time I got sober, there was not as much help as there is today.”

Today, there are new medications, better understanding of male-female differences in alcohol metabolism, and research into genes that may trigger alcoholism. Most important, there’s the recognition that, as Raymond says, “you don’t have to hit bottom like I did. If you’re worried about drinking, get help. Sooner rather than later.”

This Thursday, you can get free alcohol screening at any of 2,000 sites nationwide, including 450 colleges. You just show up, fill out an anonymous questionnaire, then meet confidentially with a clinician for 10 minutes. If he or she thinks you have a problem, you’ll get a referral for help.

Modelled on the 9-year-old depression screening day (held each October), the alcohol screening is run by Dr. Shelly Greenfield, medical director of the alcohol and drug abuse outpatient program at McLean Hospital. It is sponsored by the National Institute on Alcohol Abuse and Alcoholism, a government agency, and dozens of professional organizations.

Depression screening has proved that offering a chance to drop in and talk privately with a counsellor turns up a “big, undiagnosed, untreated population who can be helped,” Greenfield says. It is hoped the same will hold for people with alcohol problems, she says. And there are many of them.

By government estimates, nearly 14 million Americans have an alcohol use disorder, which includes abuse (impairment but not physical dependence) and dependence (alcoholism), which is characterized by uncontrolled drinking, tolerance for high doses and withdrawal symptoms when drinking stops, among other things.

Granted, moderate alcohol use — one drink a day for women, two for men (with a “drink” defined as 5 ounces of wine, 1.5 oz. of spirits or 12 oz. of beer) — lowers the risk of heart disease.

This is because alcohol raises HDL, or “good cholesterol,” and lowers LDL, or “bad cholesterol.” It also makes it harder for platelets to form clots that can block arteries. And some alcohol, notably red wine, contains anti-oxidants that keep LDL from oxidizing; in oxidized form, LDL leads to arterial plaques.

Heavy drinking, on the other hand, can adversely affect not just the drinker — raising the risk for hypertension, stroke, heart disease, some cancers, violence and suicide — but family and friends as well. And half of all US adults have or have had a close relative with a drinking problem, government data show.

But researchers are getting an increasingly good grip on how alcohol problems develop and how best to treat them.

The drug Antabuse, for instance, has long been known to help people quit by making them sick if they drink, says Dr. Enoch Gordis, director of the National Institute on Alcohol Abuse and Alcoholism. But the drinker has to be motivated to take it.

A newer approach, using naltrexone (marketed as Revia or Trexan) may help more. In 1992 studies at the University of Pennsylvania and Yale, researchers found it reduced craving and increased abstinence. The drug is now FDA-approved for this use.

Yet another drug, acamprosate, also helps, perhaps by reducing craving.

In addition, anti-depressant drugs such as Zoloft have been shown to reduce drinking in people who have both depression and alcohol problems, though not in those who aren’t depressed.

Non-drug treatments work, too. The most famous is the 12-step AA model. But an NIAAA study of 1,726 alcoholics in 1997 found that several types of group therapy are also effective ways to quit and stay abstinent.

For true alcoholics, abstinence is still the only longterm solution. For alcohol abusers, cutting back may work.

Ultimately, scientists hope to find a genetic trigger — or several — for alcoholism. The idea that genes play a role is supported by indications that alcoholism, often, though not always, runs in families. If either parent is an alcoholic, you have three to five times the normal risk of becoming one yourself.

More support for the genetic hypothesis comes from the fact that half of Asians who drink experience unpleasant side effects such as flushing, almost “as if they had Antabuse built in” to their genes, says Gordis. Just like the drug, this genetic factor seems to protect against alcohol abuse.

But so far, scientists haven’t found a single gene related to any alcohol-related behavior, even in animals.

What is clear is that alcohol affects men and women differently. In men and women of equal size who consume equal amounts of alcohol, blood levels of alcohol are higher in women, because women’s bodies have less water and more fat, which means alcohol is not diluted as much as it in men. Women also produce lower amounts of a stomach enzyme called alcohol dehydrogenase, which helps digest alcohol.

Women’s livers also are more vulnerable to alcohol. Some data suggest it takes five drinks a day to cause cirrhosis, or scarring, in men, but only a glass and a half or so in women.

Breast cancer is another worry for women who drink. A study published last year of pooled data on more than 322,000 women found that the risk of invasive breast cancer is 41 percent higher for women who have two to five drinks a day than for nondrinkers. This is considered a modest increase in risk.

Women are also less likely to seek treatment for alcohol problems and more likely to say their drinking is related to depression or family problems, which means the drinking itself may not get addressed.

Whether you’re male or female, if you’re worried about your drinking, get screened and get help. Take it from Barbara Raymond, who now counsels alcoholics at McLean.

She’s been happily remarried for 12 years. She’s earned her bachelor’s degree from Bridgewater State and is about to get a master’s in social work. And she’s been sober — for 27 years.

SIDEBAR 1:

Some questions you might be asked in alcohol screening

  • How often do you have a drink containing alcohol?
  • How many alcoholic drinks do you have on a typical day when you are drinking?
  • How often do you have four or more drinks on one occasion?
  • How often during the last year have you found that you were not able to stop drinking once you started?
  • How often during the last year have you failed to do what was normally expected from you because of drinking?
  • How often during the last year have you needed a first drink in the morning after a heavy drinking session?
  • How often during the last year have you had a feeling of guilt or remorse after drinking?
  • How often during the last year have you been unable to remember what happened the night before because you had been drinking?
  • Have you or someone else been injured as a result of your drinking?
  • Has a relative or friend or doctor or other health worker been concerned about your drinking or suggested you cut down?
  • SIDEBAR 2:

    Bottom line on bottoms up, who has an Alcohol Problem?

    • Nearly 14 million Americans meet diagnostic criteria for alcohol use disorders.
    • Half of US adults have or have had a close relative with a drinking problem.
    • About 74 percent of male drinkers and 71 percent of female drinkers exceed moderate drinking guidelines at least once a year.

    Harmful Effects of Alcohol

    • Heavy drinking raises the risk for high blood pressure, stroke, heart disease, certain cancers, accidents, violence, suicides, birth defects and overall mortality.
    • Economic costs to society are $167 billion annually.
    • Harmful drinking is involved in one-third of child abuse cases and many unintentional deaths from falls, burns, and drownings.

    Drinking Among Teens and College Students

    • Young persons who begin drinking before age 15 are four times more likely to develop alcohol dependence and twice as likely to develop alcohol abuse as those who begin drinking at age 21.
    • More than one-third of high school seniors perceive no great risk in consuming four to five drinks a day.
    • Alcohol is a factor in about one-half of fatal traffic crashes among persons 18-24 years of age. Among fraternity and sorority residents, 81% report binge-drinking.
    • Two to three times as many teenagers and young adults die in alcohol-related crashes as die from illegal drug use.

    SOURCE: National Institute on Alcohol Abuse and Alcoholism and Dr. Shelly Greenfield.

    Hopes dim for controversial breast cancer treatment

    March 29, 1999 by Judy Foreman

    Convinced by doctors that bone marrow transplantation offered the best chance at survival, thousands of women with breast cancer have agreed to the controversial procedure — despite the lack of proof that it could save, or even prolong, their lives more than standard therapy.

    Indeed, so many women — about 5,000 women a year — now undergo the treatment, arguably the most devastating procedure in modern medicine, that breast cancer has become the most common reason for transplants, edging out leukemia and lymphoma, for which there is considerably more evidence of efficacy.

    Now, it appears that this faith in transplants for breast cancer — and advocates’ demand that insurers pay for it — may have been misplaced, or at least premature.

    Pressured by patients and doctors, researchers have agreed to take the unusual step of posting abstracts of two US and three foreign studies on transplants and breast cancer on the Internet next month. They will give more details in May at the American Society of Clinical Oncology meeting in Atlanta.

    That decision stems from a meeting of researchers and patient advocates in February at the National Cancer Institute, which sponsored the two American studies.

    Susan Braun, a patient advocate and president of the Susan G. Komen Breast Cancer Foundation in Dallas who was at that meeting, says the group was concerned about not releasing findings before the data were fully analyzed, but didn’t want to “hold on [to the findings] waiting for the meeting in May.

    Until they’ve fully analyzed their data, the lead researchers aren’t talking, even to collaborators, including some in Massachusetts, where insurance companies have been forced to pay for the transplant treatment.

    That silence is fueling speculation that at least one study found no benefit for transplant in women with Stage IV (metastatic) cancer and another is inconclusive for women with Stage II or III cancer and 10 or more lymph nodes containing cancer.

    Concern is also growing that insurers may stop paying for the $50,000 to $100,000 procedure, though Karen Ignagni, president of the American Association of Health Plans, a managed care group, denies it. “It would be wrong to suggest a conclusion that would make patients concerned about access to these procedures until we know what the research says,” she says.

    But patients are nevertheless bracing for bad news. Amid the confusion, two things seem clear. One is that, in general, when studies show an obvious benefit of one treatment over another, they are stopped early, as happened when the drug tamoxifen was found to reduce the risk of breast cancer in high risk women.

    These studies are “clearly not a homerun . . . or they would have met the stopping criteria,” says Dr. Steven Come, director of hematology/oncology at Beth Israel Deaconess Medical Center and a contributor to one of the American studies.

    The other is that the studies have not gone on long enough to be truly informative. The American study called CALGB followed 874 patients for an average of 37 months; one called ECOG followed 553 patients for an average of 31 months. Usually, longterm survival is given after five years, not three or less.

    Furthermore, even if the studies show no clear benefit for transplantation — in which patients are given near-lethal doses of chemotherapy, then “rescued” by infusion of stored immune cells — subgroups of women might still benefit, says Dr. John Durant, executive vice president of the oncology society.

    “It’s a horrible situation for women,” says Fran Visco, president of the National Breast Cancer Coalition, an advocacy group. “If the studies are ambiguous, women should not have a transplant, except in a clinical trial. If more women had been told by their doctors to do that, we’d have better answers by now. Insurers should also be compelled to fund the trials like these that can provide better answers.”

    But “in the absence of data, it’s mutual self-deception,” for women and their doctors to assume a transplant is better than standard therapy, says medical ethicist George Annas, professor of health law at the Boston University School of Medicine. Transplants are “heroic.” To put women through them without more evidence is mere “faith healing.”

    Indeed, Memorial Sloan-Kettering Cancer Center in New York does not offer the procedure for breast cancer patients and in the past, only offered it in research settings.

    If the findings do turn out to be ambiguous, says Braun of Dallas, it “will leave women very much where we are now. We would like to have seen more people in the clinical trials.”

    “No kidding,” says Dr. Mary Horowitz, scientific director of the International Bone Marrow Transplant Registry and the Autologous Blood and Marrow Transplant Registry in Milwaukee.

    Recruiting was a nightmare, she says, “because everyone thought they knew the answers,” and because mortality from the transplant procedure itself has dropped from about 15 percent to 3 to 5 percent for women with Stage II or III breast cancer. “I can see why women decided to take the chance.”

    But what is “particularly wrenching is there was such a lot of hype around this procedure for women with breast cancer when it first came out,” in the early 1990s, says Grace Powers Monaco, a lawyer and head of the Bethesda, Md.-based Medical Care Ombudsman Program, which evaluates recommendations for transplants for HMOs and patients.

    Some of those early studies found that as many as 20 to 30 percent of women with advanced breast cancer survived at least a few years after transplant, says Come of Beth Israel.

    But that, as Monaco sees it, prompted women to feel, “ `I should get this treatment and I will not be randomized.’ Because of that, the data was delayed many years because people did not fill up the clinical trials.”

    Indeed, faced with mounting pressure, including lawsuits, many insurers agreed to pay for the procedure, and some states, including Massachusetts, now even mandate coverage by law.

    The bottom line, sadly, is that there will be no bottom line in the near future, although four other randomized studies on transplants for breast cancer are underway through the National Cancer Institute.

    For the moment, though, the expected results from the current studies are simply “not sufficiently mature to analyze,” says Dr. Thomas Spitzer, director of the bone marrow transplant program at Massachusetts General Hospital and a contributor to the American study called ECOG, run by the Eastern Cooperative Oncology Group.

    Come of Beth Israel, who participated in the CALGB trial, agrees. “While awaiting further analysis and follow up from these trials, women contemplating a transplant owe it to themselves to seek a variety of perspectives before making a final decision.”

    “Personally, I can’t make up my mind” about the data, muses ASCO vice president Durant, who lost his wife to breast cancer. But he’s guardedly optimistic. Because these studies were so short-term, there’s “lots of time for benefits to appear.”

    SIDEBAR:

    How to learn more

    To read more about the emerging data from studies of bone marrow transplantation for breast cancer, you can visit the website of Cancer Letter, www.cancerletter.com. The letter is privately published by journalists Paul and Kirsten Boyd Goldberg.

    For the National Cancer Institute’s position on the issue, visit http://cancertrials.nci.nih.gov. Beginning April 15, you can read preliminary results of the studies and suggested interpretations of them at www.asco.org, the site of the American Society of Clinical Oncology.

    Chronic pain often goes untreated because some doctors don’t believe their patients

    March 22, 1999 by Judy Foreman

    James Murphy is only 26, but some days, he can hardly get out of bed.

    Three years ago, Murphy, a North Easton man who used to fix power tools for a living, damaged a disc in his back lifting a steel workbench. The injury allowed the jelly-like material that cushions vertebrae to ooze out and press on a nerve. Pain raged through his lower back and shot down his right leg.

    Despite surgery, cortisone injections, pills and numerous visits to a major Boston pain clinic, where, he says, he was told it was all in his head, Murphy’s pain is worse.

    Murphy became so disgusted at what he feels is the medical establishment’s disregard of chronic pain that a year ago he started a web site (http://come.to/painsupport). It now gets 400 hits a week from people, some suicidal, whose lives are ruined by pain.

    Chronic pain, defined as pain lasting more than three months, affects 35 to 40 million Americans, says Dr. Russell Portenoy, head of the American Pain Society and of pain medicine and palliative care at Beth Israel Medical Center in New York.

    And researchers now know that, far from being all in one’s head, it is an all-too-real physiological phenomenon, though the specifics vary depending on whether it’s caused by damage to nerves, as in shingles or diabetes; by inflammation, as in arthritis; or by other things, like spreading cancer.

    With a nerve injury, for instance, chronic pain may be the body’s way of learning to avoid future injuries. When you injure nerves in your finger, nerves in the spinal cord “reorganize to amplify pain and remember it,” says Dr. Daniel Carr, a professor of anesthesia at New England Medical Center. This reaction is so ancient — it’s been in the genetic structure of animals for 600 million years — it must be crucial to survival.

    But despite this new understanding and an explosion of treatments — including non-drug remedies — millions suffer “because doctors don’t believe patients’ reports,” says Dr. Kathleen Foley, a cancer pain specialist at Memorial Sloan-Kettering Cancer Center in New York.

    Chronic pain is also undertreated because of the fear that patients — even those who are dying — might become addicted to high doses of powerful painkillers like morphine. And doctors fear running afoul of drug enforcement officials.

    In reality, such abuse is rare. One study of 12,000 patients showed only four became addicted. Another found that not one of 10,000 burn patients became addicted. In yet another study of 2,000 patients, only three became addicted.

    What does happen is that people don’t get enough medication. A major 1995 by the Robert Wood Johnson Foundation showed that 50 percent of dying patients had pain in the last three days of life.

    Another found that only 12 percent of cancer patients in nursing homes got basic pain care recommended by the World Health Organization. And a New England Journal of Medicine study of 1,000 cancer doctors showed half their patients had bad pain — and the doctors didn’t know what to do about it.

    And it’s not just dying patients whose pain is inadequately addressed, it’s people without terminal illnesses as well.

    In a recent Roper survey of 805 people without cancer and with moderate to severe chronic pain, 40 percent said their pain was out of control. The survey, which was sponsored by a drug company that develops pain relief medication, found that half of the respondents had switched doctors at least once, and half had been in pain for more than five years.

    Much of that suffering can be avoided, and the first step is to get an evaluation to see exactly what type of pain you have.

    If it’s arthritis pain, for instance, traditional NSAIDS (nonsteroidal anti-inflammatory drugs) and newer ones called COX-2 inhibitors may help. If your pain is from spreading cancer, opioids such as morphine, hydromorphone, oxycodone, codeine, methadone or fentanyl often help. These drugs all work through a special type of opioid receptor in the brain called mu.

    On the other hand, if you have nerve pain, opioids may not be the answer. But other drugs that work through a different receptor, called NMDA, may be, including dextromethorphan and ketamine. Another drug, d-methadone, also shows promise.

    Chronic pain also makes many people depressed and anti-depressants often help. But these medications actually do more than simply elevate mood — they fight pain directly.

    Older anti-depressants like Elavil work through brain chemicals such as norepinephrine both to reduce transmission of pain signals up the spinal cord and to rev up transmission of pain-killing signals down it. Newer antidepressants like Paxil work by boosting another neurotransmitter, serotonin, which helps control pain just as it elevates mood.

    Other drugs besides anti-depressants have this dual use. Anti-convulsants such as Neurontin are now known to block the firing of nerves that have grown new sprouts in response to injury. Anti-anxiety medications such as Valium, Ativan and Klonopin also block transmission of signals along pain nerves.

    Researchers are also finding better ways to deliver painkillers in patients who can’t swallow or don’t want injections. Fentanyl, for instance, comes in patches that deliver a steady dose over several days. Some patches now come with buttons that a patient pushes when relief is needed. There’s even a lozenge of fentanyl on a stick, so the drug can be absorbed directly through mucus membranes in the mouth.

    If pain is intractable, doctors can implant pumps in the spinal cord to supply morphine or even “snail slime” (a substance called SNX-111 that mimics a chemical put out by ocean snails).

    At a few clinics, including the Advanced Pain Management Center in Stoneham, doctors are trying to shrink damaged spinal discs with heat. A wire is inserted into the disc through a tube and then heated to 194 degrees Fahrenheit. This seems to shrink collagen in the disc and reduce pain, says Dr. Anil Kumar, who has performed the procedure on a dozen patients so far.

    In other patients with back pain, steroids injected near the spinal cord sometimes work, as can injections of local anesthetics into nerve ganglia in the neck or lower back.

    In some cases, doctors put electrical devices in the brain or spinal cord to activate the descending pain pathways that block pain. They can also destroy pain nerves surgically or chemically. For tic douloureux, for instance, the trigeminal nerve in the face can be cut by radiofrequency waves; a similar technique is used in the neck in cancer patients.

    But nerve destruction is usually done only if patients have a short life expectancy because new pain nerves can sprout, notes Dr. Douglas Merrill, chairman of the committee on pain management for the American Society of Anesthesiologists.

    The bottom line is that there is help available. But, as James Murphy have discovered, you may have to fight to get your doctor to take you seriously or to get your insurer to pay.

    You may also have to fight your own tendency to let pain become “a way of life,” says Merrill. You may not want to hear that you should get off the couch and onto the treadmill. But the ultimate solution may be to “find something to do with your life other than watch TV and wait for six hours to go around to take your pills again.”

    SIDEBAR

    Other treatments for chronic pain

    Whether you treat chronic pain with mainstream medications, nondrug therapies, or alternative remedies like acupuncture, it pays to match the type of pain to the remedy.

    Cognitive behavioral therapy, for instance, in which you learn ways to control your response to pain is effective for many people, For others, the answer may be biofeedback, relaxation, meditation or plain, old distraction.

    For many people, exercise helps with the deconditioning that accompanies chronic pain. Acupuncture, the ancient Chinese technique of inserting needles through specific sites on the skin, may help, too, says the National Institutes of Health.

    Some researchers, among them Dr. Paul White, an anesthesiologist at the University of Texas Southwest Medical Center at Dallas, use acupuncture needles plus electrical stimulation (a technique called PENS, for percutaneous electrical nerve stimulation) to treat back pain. A similar technique called TENS sends electrical signals through skin without needles.

    Some also swear by magnet therapy. In one small study at Baylor College of Medicine in Houston, researchers found that attaching a magnet to muscles or joints provided relief to some post-polio patients. Other data suggest magnet therapy may help people with nerve damage from diabetes.

    Overall, however, there’s “little scientific evidence that magnet therapy works,” says Jim Livingston, an MIT physicist who studies magnets.

    Whatever your particular type of chronic pain, the real key, pain specialists say, is to be assertive: Don’t allow your primary physician to focus solely on the underlying disease. Insist on addressing the pain, too.

    If your regular physician can’t help, see a pain specialist, which is often an anesthesiologist, neurologist or psychologist. Or go to a special pain clinic, which many hospitals now have.

    And don’t avoid psychological treatments. If something like cognitive-behavioral therapy helps, it doesn’t mean your pain was all in your head — it means you’ve learn how to cope with the pain better.

    For more information on chronic pain on the Web:

    American Pain Society (www.ampainsoc.org)

    American Academy of Pain Medicine (www.painmed.org)

    American Academy of Pain Management (aapainmanage.org)

    American Society of Anesthesiologists (www.asahq.org)

    International Association for the Study of Pain www.halcyon.com/iasp)

    Chronic Pain Forum (come.to/painsupport).

    American Chronic Pain Association (theacpa.org)

    National Foundation for the Treatment of Pain (www.paincare.org)

    After April 1, you may also try: American Pain Foundation (www.painfoundation.org)

    Anxiety over antidepressants

    March 15, 1999 by Judy Foreman

    Modern anti-depressants, for which Americans spent more than $5.6 billion last year, have been a huge boon, partly because they have few disastrous side effects, even in overdose.

    With older, “tricyclic” anti-depressants like Elavil, for instance, “a 10-day supply could kill you,” says Dr. Michael Jenike, associate chief of psychiatry at Massachusetts General Hospital. The newer drugs, called SSRIs, or selective serotonin reuptake inhibitors, are rarely fatal.

    The leading SSRIs — Prozac, Zoloft and Paxil — also sidestep a hazard of older anti-depressants: MAO inhibitors like Nardil and Parnate can cause a fatal rise in blood pressure when taken with red wine, aged cheese and other foods.

    But for all their magic against both depression and anxiety, the SSRIs do have drawbacks. Like the older drugs, they can take weeks to kick in. They can also cause sexual dysfunction (lack of orgasm) and, initially, agitation. (A fourth SSRI, Luvox, which combats depression but is approved for obessessive compulsive disorder, may be somewhat less likely to cause sexual dysfunction.)

    Worse yet, the SSRIs don’t work for nearly a third of the people who try them.

    This is frustrating for the 18 million Americans who are depressed and 23 million more who are anxious, but it’s strong motivation for drug companies racing to find better drugs.

    And they are, including new classes of anti-depressants designed to act through entirely different pathways in the brain — drugs that block a brain chemical called substance P and others that block CRH, corticotropin releasing hormone.

    Spurring this effort is an explosion of basic knowledge about the brain, some of which will be presented this week in Washington by the Dana Alliance for Brain Initiatives, a nonprofit organization involving more than 185 neuroscientists.

    “For four decades, we have been increasingly perfecting anti-depressant drugs,” says Dr. Steven Hyman, director of the National Institute of Mental Health. “Now, for the first time. . .we are beginning to see the possibility of real alternatives.”

    Much of the excitement comes from the growing recognition that an almond-sized brain structure called the amygdala plays a central role in the processing of fear and almost certainly in depression and chronic anxiety as well.

    The amygdala is rich in receptors for substance P, a brain chemical originally thought to transmit pain signals but now believed to be more important for depression and anxiety. The amygdala is also rich in receptors for CRH, the stress hormone.

    At the same time that drug makers are scrambling to find drugs to block CRH and substance P, they are scurrying to improve the current SSRIs, which combat depression and anxiety by increasing levels of a brain chemical called serotonin in the synapse, or space, between nerve cells.

    Scientists have never proven that depression is caused by a deficiency of serotonin, but they have found low serotonin levels in studies of people who are aggressive or suicidal, says Dr. Peter Whybrow, director of the neuropsychiatric institute at UCLA. Increasing serotonin, he adds, is a “fulcrum where one can intervene,” but there may be even deeper root causes of depression yet to be found.

    In recent years, scientists have discovered that there are at least 15 subtypes of serotonin receptors on brain cells, as well as subtypes for two other neurotranmitters, norepinephrine and dopamine, that are also involved in depression.

    This is crucial information: It means scientists should be able to tailor a drug so it acts on some receptors and not others, keeping anti-depressant activity high while minimizing side effects like time lag to efficacy and sexual dysfunction.

    Here’s how it works: An electrical signal travels down one brain cell, telling it to release serotonin into the synapse. The serotonin lands on “post-synaptic” receptors across the synapse in the next cell, triggering new signals in that cell.

    Serotonin then floats back toward the first, or presynaptic, cell, which sucks some of it in through a “re-uptake pump” to be recycled for further use. It is this re-uptake system that the current SSRI drugs block.

    But brain cells also have “autoreceptors” that interact with serotonin in another way — by telling the cell when there’s enough serotonin in the synapse that no more needs to be made, in essence, a negative feedback loop.

    Scientists now think that one reason it takes so long for SSRIs to kick in is that it takes weeks for the cell to learn to “ignore” this feedback and start making more serotonin, says Dr. Scott Ewing, director of the depression and anxiety service at McLean Hospital in Belmont. By tinkering with drugs aimed at these autoreceptors, he says, it should be possible to make drugs that work faster, though none are available yet.

    Similarly, better knowledge of receptors has led to drugs like Serzone and Remeron, which have fewer sexual side effects because they block certain post-synaptic serotonin receptors.

    A new SSRI, Celexa, approved last fall, avoids still other pitfalls than standard SSRIs by triggering fewer interactions with other drugs.

    Researchers are also discovering other ways to help people who don’t respond to standard drugs. For instance, some data suggest that taking a blood pressure drug called pindolol with an SSRI makes the SSRI act sooner by acting on the presynaptic autoreceptors to stop the negative feedback loop.

    SSRIs can also be made more effective by taking them with other drugs like lithium (normally used for manic-depression), a synthetic thyroid hormone called T3, an anti-anxiety medication called Buspar or tricyclic anti-depressants, says Ewing.

    Sometimes, combining two “atypical” anti-depressants like Wellbutrin, Effexor, Serzone or Remeron, also helps people who have not responded to other drugs.

    The bottom line is that “if you’re doing well on your current anti-depressant and can stand the side effects, stay on it,” says Ewing. After all, anything you switch to may bring new side effects. “It’s a mistake to go off a drug you’re responding to.”

    But if you’re not responding well, don’t give up. Psychotherapy, the talking treatment, can be very effective, even without medications, for many people. The herbal antidepressant St. John’s Wort seems to help many people, too.

    And if you do want to switch to a different prescription anti-depressant, talk to you doctor. If he or she can’t provide an answer, see a psychiatrist or psychopharmacologist. Remember: Depression and anxiety are highly treatable problems.

    SIDEBAR

    Some of the new anti-depressants in the pipeline

    Substance P blockers: In terms of published data, Merck Research Laboratories is the leader. Six months ago, it reported in Science that its drug MK-869, worked as well as Paxil in depressed people. Since then, the company says it has finished an unpublished study with less clear results and is now pursuing an unnamed substance P blocker it feels is more potent.

    A number of other companies, including Pfizer Inc. and Eli Lilly & Co. are also working on substance P blockers.

    Corticotropin releasing hormone (CRH) blockers: Published data are scanty, but informal reports “look promising,” says Dr. Steven Hyman, director of the National Institute of Mental Health. A 1998 study in Munich showed that mice missing a receptor for CRH exhibited reduced anxiety and stress, suggesting that CRH blockers might be effective in humans.

    Improvements to SSRIs, or selective serotonin reuptake inhibitors. Many companies are working on this. Lilly and Sepracor are working on R-fluoxetine, a Prozac variant with fewer side effects. Celexa, already on the market by Forest Laboratories, Inc., causes less agitation than standard SSRIs.

    Other serotonin-based drugs. Solvay Pharmaceuticals is working on flesinoxan, which boosts serotonin by increasing the activity of a particular receptor called 5-HT1A.

    Norepinephrine reuptake inhibitors. This is a new class of drugs that would boost a different neurotransmitter, norepinephrine. So far, Pharmacia & Upjohn’s drug, reboxetine, appears closest to getting approval for marketing.

    RIMAS, or reversible inhibitors of monoamine oxidase. The idea is to tinker with MAO inhibitors so a patient doesn’t have to follow a special diet. A drug called moclobemide is already on the market in Great Britain, Canada and Europe to do this. It’s not clear whether any company will bring it to market in the US.

    Glutamate drugs. Some scientists think this important neurotransmitter may play a role in depression, as it does in Alzheimer’s disease and schizophrenia. Lilly is exploring this.

    Herbal antidepressants. The leader is St. John’s Wort, already shown to be effective in European studies. McLean Hospital is studying a sustained release form of the drug. There’s another study at 12 centers nationwide. If you want to participate, call 617 855 2862 for the first study, or 919 668 8991 for the second. (On the web, you can find out more about the second study at http://hypericum.rti.org.)

    New drugs fight sores from cancer treatment

    March 8, 1999 by Judy Foreman

    The worst part of Colleen Combes’ breast cancer treatment three years ago, besides losing her hair, was the awful mouth sores caused by chemotherapy.

    These ulcers “were like canker sores that had broken open, only much worse. They were everywhere – on my tongue, the inside of my lips, my cheeks. It was very painful. I couldn’t eat. It was difficult to talk,” says Combes, a 41-year old Rockland woman currently on leave from her job in a law firm.But in January, when Combes’ cancer had spread and she needed a stem cell transplant (a major procedure akin to a bone marrow transplant), things were different. She had no mouth sores despite the even higher doses required in the second round of chemotherapy.

    Just before the transplant, Combes agreed to participate in a test of a new drug to prevent mouth sores. She still doesn’t know for sure whether she got the drug or a placebo, but she had “no mouth sores, nothing. I was ecstatic.” Perhaps because of this, she says, she also went home sooner than most patients.

    Until recently, the main reason doctors had to limit or stop chemotherapy in many patients was damage to the bone marrow or immune system – the body’s infection-fighting equipment.

    Now, that problem has become more manageable, thanks to drugs that protect the marrow, and mouth sores and other oral complications are becoming the number-one treatment-limiting issue, says Dr. Stephen Sonis, chief of oral medicine, oral maxillofacial surgery and dentistry at Brigham and Women’s Hospital in Boston.

    “It’s a major, major problem,” agrees Dr. Jerome Groopman, chief of experimental medicine at Beth Israel Deaconess Medical Center.

    This year alone, 1.2 million new cases of cancer will be diagnosed among Americans. About 400,000 patients will develop oral complications from their treatment, many to the point where they’ll need morphine or will have to stop treatment altogether, which can affect survival.

    Those like Combes who have stem cell or bone marrow transplants, which involve high-dose chemotherapy, are at special risk: 75 to 80 percent get severe oral complications, says Dr. Philip Fox, former clinical director of the National Institute of Dental and Craniofacial Research at NIH and now research and development director at Amarillo Biosciences Inc. in Amarillo, Tex.

    Indeed, oral complications from cancer treatment are emerging as such a major problem that the National Institutes of Health recently launched a public education campaign to raise consciousness of the issue among patients, doctors and dentists.

    Like cancer cells, cells that constitute the mucosal lining of the mouth have a quick turnover rate. This means that, like cancer cells, they are easily killed by chemotherapeutic agents.

    As cells in the mouth die, they release molecules called cytokines, which cause inflammation that further damages mouth tissue. The resulting breaks and ulcers then make it easy for germs from the mouth to enter the bloodstream and cause systemic infection, particularly since the immune defenses are also hurt by chemotherapy.

    In other words, once the lining of the mouth is damaged, patients lose a key “physical barrier” to infection, says Groopman. On top of that, patients often have so much pain from mouth sores that they can’t eat or absorb much-needed nutrients.

    With head and neck cancers, which will be diagnosed in about 30,000 Americans this year, the main problem is the radiation that patients get after surgery. Radiation can destroy saliva glands, as well as blood vessels and bones in the mouth and jaw.

    Saliva is essential, not just because it lubricates the mouth but because it contains proteins that fight viruses, yeast and bacteria. Without saliva, patients have difficulty swallowing, chewing, speaking and fighting infection, which means tooth decay can become rampant.

    In addition, radiation can damage blood vessels and the jawbone to such a degree that if a person later needs a tooth extracted, the bone may never heal. Taken together, this means that patients with head and neck cancer should get major dental work done before radiation.

    But it’s chemotherapy, because it affects more people, that’s an even larger concern, specialists say, and some drugs, especially fluorouracil (5-FU), cytarabine, methotrexate, and some combinations of drugs, are particularly damaging.

    On the plus side, scientists have “learned more about mucositis, or mouth sores, in the last two years than in the prior 50,” notes Sonis. As a result, a number of new drugs to prevent or treat mucositis are now in testing.

    At the University of Connecticut Health Center in Farmington, Dr. Douglas Peterson, head of oral diagnosis, has completed a study in stem cell transplant patients of a drug called misoprostol, already on the market for stomach ulcers. Taken in mouthwash form within two hours of the start of chemotherapy, he says, the drug may reduce oral tissue injury. Other data, however, suggests that in tablet form, the drug can make mucositis worse.

    At the Fred Hutchinson Cancer Research Center in Seattle, Dr. Mark Schubert, director of oral medicine, along with Sonis and others, is testing a new antimicrobial drug, IB367. The idea, says Schubert, is to see if by killing oral bacteria and yeast, the drug can reduce the severity of mucositis. This is the drug Colleen Combes, the breast cancer patient, thinks she had.

    Elsewhere, researchers are testing growth factors called KGF-1 and KGF-2, designed to stimulate oral mucosal cells called keratinocytes. Others are testing TGF-beta3, a drug that stops cells from dividing and hence might help cells in the mouth escape the damage from chemotherapy drugs.

    Still others are testing an amino acid called glutamine that, when swished in the mouth, might help mucosal tissue to regrow. Also under study is benzydamine, a drug that may block inflammation of mouth tissue, and Il-11, a drug that may block mucositis in multiple ways.

    For patients like Combes, these and other drugs in the works hold the promise not only of increasing quality of life during and after cancer treatment but, because they may enable more people to complete treatment, may boost the chances of survival.

    It’s not easy to get yourself to the dentist when you’ve just been told you have a life-threatening disease. “People with cancer have a gazillion things to think about,” says Sonis of the Brigham. “It’s like sitting under a dump truck and getting unloaded on. But to the extent that they can be proactive and get to the dentist, it’s a huge help.”

    Treat the mouth before therapy

    If you’re facing chemotherapy for any kind of cancer or radiation for head and neck cancer, it’s important to get major dental work done before you start treatment, according to the National Institutes of Health.

    With radiation in particular, treatment can damage oral tissues so severely that dental work later, including tooth extractions and gum surgery, may be difficult or impossible.

    During cancer treatment, mouth care is also crucial, which means you should:

    • Brush teeth gently with an extra-soft toothbrush or foam sponges. Brush after every meal and at bedtime.

    • Floss once a day to remove plaque, unless your oncologist says your blood platelet levels are so low that the risk of bleeding is too great.

    • Rinse your mouth often with water or salt water and ask your oncologist or dentist if you should use a fluoride gel or rinse as well.

    • Don’t use mouthwashes that contain alcohol, as most commercial mouthwashes do.

    • Use a saliva substitute such as Biotene to help keep your mouth moist.

    • Eat soft, easy-to-chew foods.

    • Don’t eat spicy, sour or crunchy foods.

    • Eat foods that are warm but not too hot or cold.

    • Avoid alcoholic drinks.

    • If you smoke or chew tobacco, quit and ask your oncology team for help if you need it.

    Sugar’s ’empty’ calories pile up

    March 1, 1999 by Judy Foreman

    Here’s the so-called problem: The kids in the Colorado Springs schools just aren’t drinking enough Coke, or so says John Bushey, an area superintendent for 13 schools who signs his correspondence, “The Coke Dude.”

    It seems the Colorado district had been hard up for money for extras like band competitions and debates. So in 1997, it signed a 10-year contract by which it would get $8-$11 million from Coca-Cola in return for giving the soft drink giant exclusive rights to peddle Coke, juices, teas, other sugary drinks and fancy water in school vending machines.

    Coke has similar “partnerships” with schools around the country, including the Burlington, Mass. system and dozens of individual schools in the Boston area, says Bob Lanz, Coke’s vice president for public affairs for New York and New England.

    With sugar consumption by teenagers already in the stratosphere, this scheme is not exactly popular with nutritionists. Surprisingly, it doesn’t seem all that popular with kids in Colorado Springs, either, because they haven’t held up their end of this sugar-coated deal.

    Sales of Coke products have been so sluggish that Bushey wrote to school officials in September: “We all need to work together to get next year’s volume up to 70,000 cases.”

    He wasn’t kidding, as he made plain in an interview. In fact, his solution is to let kids buy drinks “throughout the day except for the half hour before and after lunch” and to place machines “where they are accessible all day.”

    Let’s say, for argument’s sake, that bombarding kids with soda pop and other sugary drinks makes economic sense for cash-starved schools. But nutritional sense? Forget it.

    Sugar consumption, especially among teens, is “off the charts,” says Michael F. Jacobson, executive director of the Center for Science in the Public Interest, a health advocacy group in Washington, D.C. The group lays much of the blame on the soft drinks, or “liquid candy,” that teens are guzzling.

    (Sugar-free drinks aren’t much better, he adds. Artificial sweeteners “are used almost exclusively in worthless foods. If you’re consuming much of them, you ought to worry about your overall diet. They aren’t making good foods better, they’re making bad foods less bad.”

    Twenty years ago, his group says, teens drank almost twice as much milk as soda. Now they drink twice as much soda as milk. Girls get only 60 percent of the calcium they need to build bones to prevent osteoporosis in later life. Some data suggest drinking soda instead of milk may also contribute to breaking bones while they’re still teenagers.

    The US Department of Agriculture is worried, too, noting that Americans consume twice as much sugar as desirable. Indeed, many of us now get 16 percent of our calories from sugar, including table sugar and products like corn syrup that are added to processed foods.

    It’s not that sugar is a toxin, as some health faddists argue. In and of itself, it’s not bad for you. It isn’t even a major risk for diabetes.

    But too much sugar can make for health problems, including obesity, heart disease and tooth decay, said a panel of 21 nutritionists in December. They called for a National Academy of Sciences study of the health consequences of sugar consumption.

    Metabolically, sugar is a refined carbohydrate, like white bread or potatoes. And, like them, it can trigger a rapid rise in blood glucose, which sets off an outpouring of insulin, the hormone that escorts sugar molecules into cells.

    Over time, too much of this cycle can raise blood levels of fatty substances called triglycerides and lower levels of HDL (good cholesterol), increasing the risk of heart disease. There’s also some evidence that this carbohydrate-insulin cycle can exhaust the insulin-producing cells in the pancreas, says Dr. Walter Willett, chairman of nutrition at the Harvard School of Public Health.

    But the main problem with sugar, aside from the calories it packs, is that “it squeezes out the good things” like fruits, vegetables and milk from the diet, says Dr. George Blackburn, medical director of the Center for the Study of Nutrition and Medicine at Beth Israel Deaconess Medical Center. Sugar is just “empty calories,” agrees Willett, adding that an eight-ounce serving of Coke contains about eight teaspoons of sugar.

    “If people thought of spooning down eight teaspoons of sugar, they’d be grossed out,” he says. “But drinking makes it virtually invisible, which means you can take in a lot more calories than you realize.”

    And too many calories, regardless of where you get them, leads to weight gain, unless you exercise off what you take in.

    Sugar is also seductive. “It’s not only in things that are sweet, which we know have sugar, but it’s also in processed foods that don’t taste particularly sweet,” says Larry Lindner, executive editor of the Tufts University Health & Nutrition Letter. That includes ketchup, canned beans, barbeque sauce, spaghetti sauce, even cereals that don’t appear to be sweet.

    But to focus solely on sugar – and not on refined carbohydrates in general – is to miss the point, nutritionists say, because in some ways, pure sugar may be less of a problem.

    “People have been given the idea they can load up on potatoes and bagels but not sugar,” says Willett. In fact, table sugar (sucrose) is made up of both fructose and glucose. Because fructose does not trigger an insulin response like glucose, in some ways, ironically, you may be better off eating pure sugar than starch, in terms of metabolic effects on the body, he says.

    “No matter how you take carbohydrates in, enzymes in the pancreas turn it all to sugar,” adds Blackburn. “What the body sees is sugar. It never sees a starch.”

    What, then, is a body to do?

    Remember the basics – calories do count, and sugar, especially in liquid candy form, can be an insidious wrecker of healthy diets. Weight control, no matter what the fad diet books say, still boils down to a matter of “calories in, calories out,” says Karen Chalmers, director of nutrition services at the Joslin Diabetes Center in Boston.

    The bottom line is that you should eat a diet that’s roughly half carbohydrate, including sugar. Within that category, you should try to eat less of the refined stuff, which has had much of the fiber and many of the nutrients removed, and more of the whole grain products like brown rice or whole oats.

    And soft drinks? Forget it. If you’re thirsty, drink water. (Juices are okay in small quantities, but they have lots of calories.) If you’re hungry, eat real food.

    1: Substitutes can be risky

    If you spend time on line, chances are you’ve stumbled upon e-scares about artificial sweeteners, especially aspartame, or NutraSweet, which is alleged to cause methanol toxicity, headaches, brain cancer, lupus, and multiple sclerosis.

    In truth, methanol toxicity (which can cause blindness) from aspartame is not a serious concern, says Timothy Maher, director of pharmaceutical sciences at the Massachusetts College of Pharmacy. In fact, there’s more methanol in a can of tomato juice than a soda sweetened with aspartame, which was approved by the US Food and Drug Administration for use in some food products in the early 1970s and for soft drinks in 1983.

    “There is some evidence that aspartame may be linked to migraine headaches,” he says, but there’s no credible evidence of any link between aspartame and brain tumors, MS, or lupus, although that’s largely because these haven’t been studied.

    There is a danger that anti-aspartame crusaders often don’t talk about, however, the fact that some people can’t metabolize one of the two amino acids (phenylalanine) in aspartame.

    Those are people born with a condition called PKU (phenylketonuria). Since children with PKU cannot metabolize phenylalanine, they must eat a special diet to avoid proteins that contain the amino acid, or they run the risk of becoming mentally retarded and dying young. If these children consumed aspartame, “it would really do them in,” adds Maher.

    Thanks to genetic screening at birth, however, most people with PKU know it. But this test doesn’t pick up people – a few percent of the population – who inherit just one defective gene for PKU, not two. This means you could be at risk for an adverse reaction from aspartame and not know it.

    In addition, some data suggests that schizophrenics who react adversely to antipsychotic drugs such as Haldol also may not be able to metabolize aspartame normally. If they consume it, their reaction to the medications, including involuntary muscle movements, may get worse, says Maher.

    In other words, if you’re worried about aspartame, don’t touch it. There are other sweeteners on the market, including Acesulfame K and saccharine, though they’re controversial, too, according to the Center for Science in the Public Interest.

    On the other hand, the health advocacy group says, the newest sweetener, Sucralose, approved by the FDA in July, does appear safe.

    Even so, the take-home message, as Maher puts it, is “I’d use sugar.” In moderation, of course.

    By the spoonful

    There is plenty of sugar in many common processed foods. A single teaspoon of sugar weighs about five grams.

    Sugar in grams

    Sources of sugar Serving size

    Grams

    Pepsi 12 fl. oz. 

    41

    Coke Classic 12 fl. oz. 

    39

    Hershey’s milk chocolate bar 1.6 oz.

    22

    Kellogg’s Fruit Loops 1 cup 

    15

    Nabisco Double Stuf Oreos 2 cookies 

    13

    Dannon French Vanilla Lowfat Yogurt 1 cup with Raspberries

    51

    Dannon Premium Plain Lowfat Yogurt 1 cup 

    16

    Ocean Spray Jellied Cranberry Sauce 1/4 cup 

    26

    Mott’s Apple Sauce 1/2 cup 

    23

    Mott’s Natural (unsweetened) Apple Sauce 1/2 cup 

    12

    HI-C Orange Drink 8 fl. oz. 

    31

    Tropicana Pure Premium Orange Juice 8 fl. oz. 

    22

    Whole orange 5 oz. 

    12

    General Mills Almond Oatmeal Crisp 1 cup 

    16

    Kellogg’s Corn Flakes 1 cup 

    02

    Prego Pasta Sauce (Traditional) 1/2 cup 

    15

    Campbell’s Old Fashioned Beans 1/2 cup 

    14

    Campbell’s Home Cookin’ Tomato Garden Soup 1cup 

    12

    SOURCE: Tufts University Health and Nutrition Letter.

    Sizable risks call for caution on Liposuction

    February 22, 1999 by Judy Foreman

    She’s 37, and, at 5-feet-7 and 160 pounds, not as thin as she’d like. So when her new boyfriend suggested liposuction and agreed to foot the $6,500 bill, she agreed.

    “I was slightly insulted,” says the woman, a graphic artist from Roxbury. But her boyfriend had had the same surgery and she wanted to be able to tuck in her blouses again.

    Besides, she figured, this was a gift she’d have forever, “as long I don’t die through this surgery, which is not likely.”

    She’s right. In the vast majority of cases, liposuction, in which fatty tissue is literally sucked out of the body through hollow tubes under anesthesia, isn’t lethal.

    But the procedure — the fastest growing, most popular form of cosmetic surgery, now performed on 177,000 people a year — isn’t as benign as many people think, either.

    It’s especially risky if it’s done in a doctor’s office, if the doctor is not properly trained and certified, if he removes too much fat, or if he pumps in too much “tumescent fluid” to control bleeding and then fails to control for potentially fatal fluid overload.

    Consider:

    • On March 17, 1997, a 47-year-old California woman died at the Irvine Medical Center after a massive procedure: 10 1/2 hours of liposuction on her legs, hips, thighs, buttocks, knees, and arms, plus a face lift. Her plastic surgeon gave her too much tumescent fluid, an administrative law judge ruled.
    • On June 22, 1996, a 43-year-old California woman went in for “lunchtime lipo” in Los Angeles and was “dead soon after dinner,” as one magazine put it. Her operation was done in an office by an obstetrician-gynecologist who hadn’t even completed a two-weekend course, said the Medical Board of California.
    • On Jan. 13, 1998, a 51-year-old Florida man died after a 10-hour office procedure that included liposuction and penile enlargement. Afterward, he was left in the care of a night nurse. He died of valvular heart disease due to diet drugs and “complications of plastic surgery,” the autopsy found.

    These cases, while rare given how common liposuction is, are undoubtedly the tip of an iceberg, though how big an iceberg is tough to determine because death certificates may mention surgery or cardiac arrest, but usually not liposuction per se.

    But concern is growing, both among doctors, who are in fierce competition for patients, and among consumers.

    Dr. Mark Gorney, executive vice president for The Doctors Company in Napa, Calif., a large doctor-owned malpractice carrier, asked plastic surgeons across the country to report fatal outcomes following liposuction to him. Over an 18-month period in 1997 and 1998, 69 were reported, and he says others think the true figure may be closer to 100.

    Dr. Jack Bruner, a California plastic surgeon, thinks those numbers are too high. He believes liposuction caused 60 to 100 fatalities over five years, not 18 months. Still, the California cases were “pretty spectacular deaths, so we decided we’d better take a look,” acknowledges Bruner, who is head of a liposuction task force organized by the American Society of Plastic and Reconstructive Surgeons in 1997.

    The issue galvanized California Assemblyman Martin Gallegos, who filed a bill this month to require reporting of liposuction deaths and tighter controls on office procedures.

    In Florida, too, the medical board is considering rule changes that would limit office-based liposuction to four hours or less and the amount of fat removed to 2 liters (about two quarts) or less per procedure.

    Even in states like Massachusetts, where there have been no reported complaints, Alexander Fleming, executive director of the Board of Registration in Medicine, says there is growing concern as economic pressures nudge more doctors, some with minimal training, to do liposuction.

    In the right hands, the procedure is straightforward. The doctor inserts a tube called a cannula through a tiny slit in the skin. He then moves the tube around, causing fat cells to “explode and loosen up,” says Dr. Leonard Miller, a Brookline plastic surgeon. Increasingly, doctors use ultrasound as well to break up the fat before it is suctioned out. Typically, doctors make several tiny incisions in the areas of the body to be liposuctioned.

    Though the procedure is “blind,” Miller says, “you can feel where you are.” And as long as the cannula is kept away from major organs (including the intestines, which may be punctured if the patient has an undiagnosed hernia), it works.

    To maintain the benefits, though, you have to watch your diet and exercise. You’re unlikely to re-gain pounds in the areas that were liposuctioned because there are fewer fat cells there to store fat. But if you overeat, you will gain weight in areas of the body that were not liposuctioned.

    In some ways, it’s safer than it was a decade ago, thanks to refinement by dermatologists of the “tumescent fluid” or “super-wet” technique, which involves injecting liters of fluid into the area from which fat is to be removed.

    The fluid contains salt water plus epinephrine (adrenalin), which constricts blood vessels and reduces bleeding. It also contains lidocaine, an anesthetic, which produces enough pain control that a patient may not need general anesthesia.

    Adding fluid has enabled doctors to increase the amount of fat they remove because there’s less bleeding and the fat is more liquified. Some doctors now remove as much as 20 pounds of fat and fluid at a time.

    But there are serious drawbacks, too. “If you keep putting in liters and liters of lidocaine and epinephrine,” says Miller, “the drugs can cause toxic reactions, including respiratory arrest, cardiac arrhythmias, and convulsions.”

    And while some fluid is suctioned back out with the fat, most is absorbed into blood vessels. The result, especially if patients are given intravenous fluids as well, can be congestive heart failure and pulmonary edema (fluid in the lungs), both of which can be fatal.

    Last fall, Dr. Rod J. Rohrich, chairman of plastic surgery at Southwestern Medical Center in Dallas, told a national plastic surgery meeting that “careful management of fluids is essential to avoid complications in liposuction.”

    “This is real surgery,” he says. “That’s why it’s dangerous when doctors who aren’t trained in large-volume fluid management do this procedure. That’s also why patients should be healthy to start with.”

    In general, the plastic surgeons’ society says, patients “should be aware that lipoplasty to remove more than five liters [about 11 pounds] of fat and fluid requires a high level of surgical skill and a provision for prolonged monitoring after the procedure.”

    Translated, this means “you probably shouldn’t have more than five liters of fat and fluid removed unless you will be monitored by nurses post-operatively for 24 hours in an accredited health care facility or hospital,” says Rohrich. It’s probably also wise not to have more than 20 to 25 pounds of fat and fluid removed even in a hospital, he adds.

    Dr. George Hruza, a dermatologist who runs the cutaneous surgery center at Barnes Jewish Hospital in St. Louis, agrees, especially for liposuction in a doctor’s office. He suggests not removing more than nine pounds of fat and fluids in procedures done in an office or outpatient surgery center.

    The Roxbury woman, who had her three-hour operation under general anesthesia at New England Baptist Hospital, had 5 1/2 liters of fat and fluid removed from her abdomen, inner and outer thighs, hips, love-handles, and back.

    Three weeks later, she was feeling great. She misses the “softness” of her old belly, she says. But she’s thrilled to be ready to wear a slinky dress.

    Sidebar: To obntain more information on cosmetic surgery:

    If you’re in the market for liposuction, it pays to do your homework. The competition among doctors for your business is intense, and insurance doesn’t pay for this cosmetic surgery.

    Legally, anyone with an MD can do liposuction. It’s usually done by plastic surgeons or dermatologists, though sometimes by gynecologists and ear-nose-and-throat surgeons.

    What counts more than the doctor’s specialty, though, is his or her training and certification — and these vary widely.

    Ask if your doctor is board certified, and if so, by which board. There are 24 boards recognized by the American Board of Medical Specialties, and only one (the American Board of Plastic Surgery) certifies doctors in plastic surgery. If your doctor isn’t certified by one of these boards, though, it doesn’t automatically mean he or she is poorly trained, but it’s a reason to ask more questions. Even if you do use a plastic surgeon, it pays to ask about specific training because they do not all specialize in liposuction.

    If your doctor is not a plastic surgeon, you should ask how much post-graduate training he or she has had in liposuction, and be wary of anyone who’s only been trained at weekend workshops.

    In general, ask your doctor how many liposuction procedures he or she has done, what the possible complications are, what kind of anesthesia you’ll get, and where the surgery will be done. You probably shouldn’t have more than five liters of fat and fluid removed unless you will be monitored by nurses post-operatively for 24 hours in an accredited health care facility or hospital. If you do have surgery outside a hosptial, ask what the procedures are if there’s an emergency.

    You should also call the board that licenses doctors in your state and ask if there have been any complaints or disciplinary actions against the doctor.

    For more information:

    There are several ways to verify your doctor’s credentials and training.

    Nationwide, you may telephone the American Board of Medical Specialties; 1-800-776-2378. You may also call your state doctor licensing board.

    In Massachusetts, the Board of Registration in Medicine can be reached at 617-727-0773.

    On the Web, you can visit: www.docboard.org  or www.certifieddoctor.org

    No one’s watching on-line druggists

    February 15, 1999 by Judy Foreman

    It sounds promising: You boot up your computer, go to one of the new prescription drug Web sites, type in your name, health insurer, credit card number and address, and ask your doctor to call or fax in your prescription.

    Presto! Within a day or so, your medication arrives on your doorstep by mail, UPS or Fedex. No driving to the drugstore. No parking. No standing in line while harried druggists fill your order.

    A month ago, the first major Internet pharmacy, Soma.com, went on line with a prescription service, which has already filled thousands of orders through a distribution center in Ohio. By the end of the first quarter, PlanetRx.com and Drugstore.com, with distribution centers in Tennessee and Texas respectively, promise to be up and running, too.

    The American Association of Retired Persons (AARP), a longtime mail order prescription giant, recently added on-line ordering for its members, at www.rpspharmacy.com. So has Merck-Medco, which provides prescription drug benefits to health plans and employer groups, though it handles only refills, not new prescriptions, on line (www.merck-medco.com).

    With prescription drug sales a booming $88-billion-a-year business, virtual pharmacies were probably inevitable. But it’s too soon to tell how well they’ll work and how different they’ll be from mail order services.

    The hope is that Internet pharmacies will make drug shopping even easier than by mail order, says Andy Stergachis, director of pharmacy services at Drugstore.com. You’ll be able to order nonprescription items like vitamins and shampoo along with your antibiotics, for instance, and you can ask your virtual pharmacist questions as well. You will also get e-mail reminders when prescriptions need to be refilled, he says.

    True, you have to send personal information into cyberspace, but there are at least some assurances of confidentiality. At PlanetRx.com, privacy will be assured with “the highest level” of encryption, says Stephanie Schear,a founder and vice president of business development.

    And if all goes according to plan, on-line pharmacies will fill prescriptions as ethically as your local drug store.

    At Soma.com, your doctor must call or fax in the prescription. The pharmacists are required to call the doctor to verify that he or she is legit and the prescription is correct. They’re also supposed to make sure your new drugs won’t conflict with what you’re already taking.

    In theory, the virtual pharmacies will also be duly licensed in the states from which they distribute drugs and will be licensed or registered in every state where they have customers as well.

    In reality, though, cyber pharmacies, which are expected to be fiercely competitive, are springing up in a regulatory limbo. Is there anyone minding the virtual store?

    “There’s not, in my opinion,” says Dr. James Winn, executive vice president of the Federation of State Medical Boards.

    The Federal Trade Commission is concerned mostly with deceptive practices, not violations of standards of care, he notes. The Food and Drug Administration’s job is to oversee drug quality, not the practice of medicine by doctors and pharmacists, who, like pharmacies, are licensed state by state.

    And therein lies the rub.

    In some states, including Massachusetts, the state has no jurisdiction over out-of-state pharmacies, including the mail order firms that have been around a while, because it has no law requiring they be registered, says Chuck Young, director of the state’s Board of Registration in Pharmacy. If there were such a law, the state could initiate legal action if a Massachusetts resident were harmed by prescription drugs shipped from out of state.

    “This whole issue is just exploding right now,” says Young. “We’re doing the best we can. But electronic changes are occurring at a faster rate than regulatory boards can keep up, given the resources they’re provided. I would want to be convinced these drugs are being packaged in conformity with federal and state law.”

    Another problem is that it may be difficult for consumers to distinguish between on-line pharmacies that are legitimate and those that aren’t, says Carmen Catizone, executive director of the National Association of Boards of Pharmacy.

    Some Web sites have already been criticized for having doctors write prescriptions, most notably for the potency pill Viagra, for patients they have never even seen, a medical practice widely viewed as unethical.

    “We’re trying to come up with some system for consumers to differentiate between legitimate on-line pharmacies and the not-so-legitimate,” Catizone adds. “In the meantime, consumers should not order any medications over the Internet from sites that don’t assure you that your doctor has been contacted.” (You can also check with your doctor.)

    It also may be risky to get some prescription drugs on the Web and others at your local drugstore. “So if you’re switching to an on-line pharmacy, that pharmacy needs to know what else” you’re taking because of potential drug interactions, says Susan Winckler, director of policy and legislation for the American Pharmaceutical Association.

    To guard against this danger, new customers at Drugstore.com must fill out a form indicating what other medications they’re taking and what allergies and medical conditions they have. All prescriptions are checked against this information.

    Another issue is how Internet pharmacies will deal with controlled substances, says Dr. Helga Rippen, director of the Health Information Technology Institute at Mitretek Systems, Inc., a nonprofit technology think tank in McLean, Va.

    Drugstore.com won’t fill prescriptions for narcotics such as Percodan and Demerol, though this type of prescription can be filled at neighborhood drugstores, says pharmacist Stergachis. Drugstore.com will fill prescriptions for some painkillers and sleeping pills, however, after checking with your doctor.

    In general, Stergachis says, the on-line service plans to call the patient’s physician “if there is any reason to suspect any type of a problem or if clarification is needed,” just as pharmacists are supposed to do already in local drugstores. (With the on-line service, just as in the current system, there’s no automatic way to tell if this consultation does occur.)

    Despite such concerns, ordering prescription drugs on line may not turn out to be all that revolutionary. After all, says Schear, PlanetRx’s founder, “We’re not changing anything about the existing system. You go to a doctor. You say you want your prescription filled from PlanetRx. They fax or call us just as they do today.”

    “We plan to verify prescriptions,” she adds, precisely how she won’t say, for competitive reasons, until the site is launched.

    Stergachis agrees that in many ways, on-line pharmacy services will be “similar to mail order services,” which account for about 13 percent of the prescription drug business.

    In fact, if there’s a downside to all this, that may be it.

    Even with the net, there will “still have to be contact between the pharmacist and the physician,” says Ed Spearbeck, senior vice president of corporate and pharmacy affairs for the AARP. “That is time-consuming. I’m not sure people are prepared to understand that fully.”

    Using an on-line pharmacy

     – Check to see whether the on-line service is willing to contact your doctor to verify prescriptions, especially for controlled substances such as painkillers and sleeping pills.

    • If you have any doubts about whether your personal medical information will be kept confidential, don’t use that site.
    • Call the board that licenses pharmacies in your state and ask if they have received any complaints about the site you want to use; also ask whether your state has a law giving it jurisdiction over out-of-state pharmacies.
    • If there’s anything that doesn’t look right when you get the medication, don’t take it. If your current medication is green and you get red pills, for instance, don’t take them.
    • If the package looks like it’s been opened or tampered with, don’t take the medication.
    • If you order some medications on line and others from your regular pharmacy, tell both pharmacists what other medications, vitamins, herbal supplements and the like you are taking, to minimize the danger of adverse interactions.

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