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Cancer patients using nontraditional medicine get false hope

Tuesday, June 9, 2009 | 12:01 a.m. CDT; updated 9:57 a.m. CDT, Tuesday, June 9, 2009
In this 2008 still image taken from video, Donna Flasch is seen holding a photo of her sister Leslee Flasch during an interview with the Associated Press. Leslee Flasch died of rectal cancer after rejecting surgery and turning to a special diet and supplements.

TAMPA, Fla. — With much of her lower body consumed by cancer, Leslee Flasch finally faced the truth: The herbal supplements and special diet were not working.

"I want this thing cut out from me," she told her family. "I want it out."

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But it was too late. Her rectal cancer — potentially curable earlier on — had invaded bones, tissue, muscle, skin. The 53-year-old Florida woman could barely sit and constantly bled and soiled herself.

"It was terrible," one doctor said. "The pain must have been excruciating."

Flasch had sought a natural cure. Instead, a deadly disease ran its natural course. And the herb peddlers who sold her hope in a bottle?

"Whatever money she had left in life, they got most of it," said a sister, Sharon Flasch. "They prey on the sick public with the belief that this stuff can help them, whether they can or can't."

Some people who try unproven remedies risk only money. But people with cancer can lose their only chance of beating the disease by skipping conventional treatment or by mixing in other therapies. Even harmless-sounding vitamins and "natural" supplements can interfere with cancer medicines or affect hormones that help cancer grow.

Yet they are extremely popular with cancer patients, who crave control over their disease and want to do everything they can to be healthy. These emotional needs make them vulnerable to clever marketing and deceptive claims. Studies estimate that 60 percent of cancer patients try unconventional remedies and about 40 percent take vitamin or dietary supplements, which do not have to be proven safe or effective and are not approved by the Food and Drug Administration.

None has turned out to be a cure, though some show promise for easing symptoms. Touch therapies, mind-body approaches and acupuncture might reduce stress and relieve pain, nausea, dry mouth and possibly hot flashes, and are recommended by many top cancer experts. A recent study found that ginger capsules eased nausea if started days before chemotherapy.

Many hospitals offer aromatherapy, massage, meditation, yoga and acupuncture because patients want them and there is little risk of physical harm. They call this complementary or integrative medicine because it is in addition to — not in place of — conventional treatments.

At the other end of the spectrum are quacks selling fringe therapies and supplements through testimonials, not proof. Laetrile, "detoxifying" coffee enemas, shark cartilage — the miracle cures change but the bogus claims remain the same.

"What I am noticing in the last year or two is a resurgence of these things. It's coming back," said Barrie Cassileth, integrative medicine chief at Memorial Sloan-Kettering Cancer Center in New York and a longtime adviser to the American Cancer Society.

The Internet fuels this trend by letting people buy direct and bypass doctors who could help them see through scams and misleading claims of scientific proof. Sadly, some Web sites are run by quacks — a "doctor" title doesn't mean the remedy is safe or effective.

"A lot of these doctors prey on people's insecurities and need for hope," said Roy Herbst, lung cancer chief at the University of Texas M.D. Anderson Cancer Center in Houston.

About 7 percent of cancer patients go straight to an alternative approach, sometimes traveling to Mexico, the Bahamas or a "spa" in Europe for treatments not allowed in the United States, Cassileth's research found. Most cancers spread slowly, so people can be temporarily fooled into thinking herbs or special diets are keeping it at bay.

"After they've been there some months they'll realize things are not working," she said. "But with cancer, you get one chance. By the time they get back to a reasonable hospital, they're dead. Nothing can be done for them."

Ways that supplements and fringe therapies can harm:

  • Financially. Pills that seem cheap actually cost a lot if they are worthless or are bought in place of real medicine, fresh fruits and vegetables, or other things known to boost health. They also can hook people into spending more for multipill "protocols" that make broad claims like "boosting the immune system." One Florida man worked his way up to several hundred dollars a month for pills whose contents he didn't know, pushed by a California chiropractor.
  • Medically. Trying an alternative remedy can delay the time until a patient receives an effective treatment, allowing the cancer to spread. A potentially curable cancer might become untreatable — as Leslee Flasch found out when she belatedly sought the surgery that had been recommended. Having such an advanced cancer without standard medical care must have caused excruciating pain, said one of her physicians, Lodovico Balducci at Moffitt Cancer Center in Tampa.
  • Physically. Supplements, even those said to be natural, have biological effects and can interact dangerously with a wide array of medicines. People often do not realize this and fail to tell doctors everything they are taking, potentially compromising their care. Some vitamins and herbs can lower the effectiveness of chemotherapy, radiation and hormonal treatments for cancer.
  • Psychologically. Futile treatment raises false hope and deprives people of the chance to prepare for the end of life and die in dignity and comfort.

Mary Nedlouf paid that price. She traveled from Orlando, Fla., to a Connecticut doctor who offered to treat a breast cancer that others called incurable. Her husband, Said Nedlouf, said the doctor asked about traumatic events in her childhood to "get to the roots" of her disease. The doctor also passed a wand over her and said he detected a problem with her liver. His treatments were as strange as his diagnostic methods, Nedlouf said.

"Mary would scream sometimes because those electrical things, those zappers that he put on her, would hurt," Nedlouf said. "What do you do? We're thinking she's getting something, some treatment that's a cure. She wanted to believe, and I wanted to believe for her."

After three months of lost wages and $40,000 to the doctor, Nedlouf said he spent another $13,000 for an air ambulance to take his wife home. She died three weeks later at age 42.

"She suffered. And we lost all this money," said Nedlouf, who filed a complaint in 2007 against the doctor with the Connecticut Department of Public Health. The complaint is still pending.

A more common situation is people loading up on vitamins and supplements in a misguided effort to do all they can to beat cancer or to try to make up for poor health habits in the past.

Leslee Flasch believed that dietary supplements would make her stronger and help fight the cancer — a belief her other surviving sister, Donna Flasch, still shares despite Leslee's death.

But getting nutrients from pills is different than getting them from a balanced diet, nutrition experts say.

"So many people think, 'Well, if a little bit is good, then more is better,' and that's definitely not true with most dietary supplements," said Kathy Allen, a Moffitt Cancer Center dietitian.

Examples of potential harm:

  • Vitamin E can prolong bleeding time and has forced cancellation or delay of cancer surgeries; some studies suggest it might raise the risk of certain cancers.
  • Beta carotene, a precursor of vitamin A, might raise smokers' risk of developing lung cancer.
  • Folic acid supplements might raise the risk for precancerous growths in the colon.
  • Vitamin C in large doses might help cancer cells resist chemo and radiation.

In January, doctors reported that a selenium supplement containing kelp — which is loaded with iodine — was interfering with the low-iodine care recommended for a man with thyroid cancer.

Herbal and dietary supplements can undermine cancer treatments in ways that patients can't feel and doctors can't measure. When a treatment fails, it's impossible to say whether it was due to the person's cancer or because a supplement subtly interfered.

"We know that there's some harm going on," said Jeffrey White, the National Cancer Institute's complementary and alternative medicine chief. "We just don't know the magnitude of it."

Studies show that as many as two-thirds of cancer patients who use unproven remedies do not tell their doctors. Sometimes it is because they fear doctors will disapprove, but often it is because they do not realize it can harm their care.

"I didn't think they were medications," said Vince Palella, a Bradenton, Fla., prostate cancer patient. "They're not prescription, they're not drugs. This is all natural substances, made from natural products."

During a nutrition counseling session, a Moffitt dietitian, Diane Riccardi, discovered that Palella was taking dozens of pills a day, including a saw palmetto extract. That supplement might have interfered with his hormonal cancer treatments or the monitoring to see if those treatments were working.

"There's absolutely no way of knowing" if it did, Riccardi said. "The products he was taking were not highly purified — they were a mishmash," including some labeled "raw herbal extracts," she said. Companies often claim their formulations are trade secrets and do not disclose all ingredients or amounts.

"It's as difficult as finding out what the recipe is for Coca-Cola" to try to decipher what's in them and whether they pose a risk, she said.

Another supplement that can pose a risk for prostate cancer patients is DHEA, which can affect testosterone levels, said Phyllis Matthews, a urology nurse practitioner at a group of Veterans Affairs clinics in the Denver area.

Cancer doctors also worry about isoflavones and other soy-related supplements; some research suggests they might stimulate breast tissue. Breast cancer patients on tamoxifen or aromatase inhibitors such as Femara or Arimidex should not use red clover, dong quai or licorice because of estrogen-stimulating components, say guidelines from the Society for Integrative Oncology, a group of cancer experts that Cassileth heads.

Cancer survivors must be careful, too. Using a 2005 nationwide survey, Richard Lee of the University of Chicago found half of survivors using supplements were at risk of problems because of other medicines they were taking.

He documented 116 potential interactions, including 9 percent that were major or possibly life-threatening. They included bleeding risks from combining ginkgo and aspirin, and heart rhythm, high blood pressure and serious muscle problems from taking St. John's wort and Prozac or similar antidepressants.

Supplements also can be dangerous by themselves. Balducci, the cancer specialist at Moffitt, had a leukemia patient who was taking red yeast rice extract, which has been linked to a number of health concerns.

"It caused terrible damage to her liver" and prevented her from receiving chemotherapy for her cancer, which got worse and killed her, he said. Ironically, she was taking the supplement to boost her immune system — a deceptive claim that has ensnared many cancer patients, including Palella, the prostate cancer patient.

"There are no herbal or vitamin supplements that we know of that will specifically boost the immune system," said Allen, the Moffitt dietitian.

White, at the National Cancer Institute, is angered by ads that tout test-tube results or that make scientific claims like "stimulates T-cells" without any evidence that the same substance taken in pill form, or that the T-cell effect described, makes any difference in patients' survival.

"These kinds of leaps are just not acceptable," he said. "The purpose of that is to mislead people."

Here, the government does have some authority. In June, the FDA sent 25 warning letters to sellers of teas, pills and other products sold on the Internet that falsely claim to cure, treat or prevent cancer.

The substances included bloodroot, shark cartilage, coral calcium, cesium, ellagic acid, cat's claw, Essiac tea and various mushrooms.

In September, the Federal Trade Commission charged five companies with making false and misleading claims for cancer cures and reached settlements with six others. The agency also started a bogus cures Web site to help consumers. A statement explained its reasoning:

"When you're battling cancer, the last thing you need is a scam."


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Comments

Mark Foecking June 9, 2009 | 7:22 p.m.

Another website to read for information on this is http://www.quackwatch.com , however, it isn't maintained or updated very often.

Exercise supposedly can help cancer patients, also. Staying fit can make cancer easier to take, and may prolong life.

DK

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