Cancer patients battle fatigue
By: Judy Foreman
07/12/1999 

By this time Dr. Candace Jennings, 50, an orthopedic surgeon from Ipswich, figured she'd be back to work and blessed again with plenty of energy for her husband and sons, 7 and 13.

But even though it's been a year since she finished chemotherapy and radiation for breast cancer, she's only got half the energy she used to have. She tried to go back to work but had to give it up - "the energy demand was too much," she says. And her doctors, while sympathetic, haven't offered much hope. "Somebody's got to solve cancer fatigue," she says passionately. "It really affects your self-esteem," especially if you're used to being productive. "When you can barely get out of bed to go to the bathroom, it's very hurtful."

In recent years, cancer specialists have made huge strides in combatting the nausea, vomiting, and pain that often accompany cancer and its therapy, but treatment for the fatigue that can last long after treatment lags far behind. In fact, it's a huge, under-recognized, problem for many of the 8 million Americans who've had cancer.

Two years ago, an organization called the Fatigue Coalition - a group of doctors, nurses, and advocates funded by Ortho Biotech to study cancer fatigue - surveyed 419 patients and found that fatigue, not pain, was the most common complaint, although half had completed treatment more than a year earlier.

In May, the group presented its latest data at a cancer conference in Atlanta. Again, fatigue was the big complaint, even two years after treatment; 76 percent of the 379 patients queried had debilitating fatigue at least once a week.

That's "absolutely staggering," says Dr. Russell Portenoy, head of pain medicine and palliative care at Beth Israel Medical Center in New York and chairman of the coalition.

It's "inexcusable," he adds, that so many cancer patients think they must simply accept feeling wiped out, and that doctors don't take their complaints more seriously.

 But this is beginning to change. The M.D. Anderson Cancer Center in Houston recently opened a special facility to treat cancer fatigue. Memorial Sloan-Kettering Cancer Center in New York is planning one, too, and so is New York's Beth Israel.

And though the research is preliminary, there are signs that better treatments will become available as scientists begin to untangle the many causes of cancer-related fatigue.

In some cancer patients, perhaps 15 percent, depression and anxiety are likely causes of fatigue, says Dr. William Breitbart, a psychiatrist and internist at Sloan-Kettering. But for many more, it's the other way around - they get depressed because of their lack of physical energy.

Sometimes, fatigue is caused by the cancer itself as tumors compete with healthy tissue for nutrients. In other cases, it's the treatments that cause fatigue - chemotherapy and radiation, or even relatively nontoxic immune-boosting drugs.

In fact, the fatigue caused by immune-modifying drugs like the interferons, the interleukins, and tumor necrosis factor is so common and so profound that researchers suspect the natural forms of these substances, called cytokines, which are made as the body tries to fight cancer, are also triggers of fatigue.

In one small study, Dr. Donna Greenberg, a Massachusetts General Hospital psychiatrist, found that a cytokine called IL-1 rose in prostate cancer patients several weeks after radiation, just as fatigue increased, though she cautions that the connection between the two events is still unclear.

Other studies on cytokines and fatigue have had ambiguous results, says Barbara Piper, an associate professor of nursing at the University of Nebraska Medical Center who works with the Oncology Nursing Society to study cancer fatigue. Despite the embryonic understanding of the physiology of fatigue, researchers are finding ways to fight it.

At Sloan-Kettering, Breitbart has just completed a study showing that the psychostimulant drugs, Ritalin and Cylert, when used alone, improved fatigue significantly over a placebo in people with AIDS, which like cancer, can cause exhaustion.

The once-banned drug thalidomide may help, too, he says, perhaps by combatting the fatigue-inducing effects of tumor necrosis factor.

Anecdotal evidence suggests that steroid drugs like dexamethasone or prednisone may also temporarily boost energy in cancer patients, says Beth Israel's Portenoy. A drug called amantadine, already used to treat fatigue in people with multiple sclerosis, may help, too.

At M.D. Anderson, Dr. Tejpal Grover will study yet another drug, Provigil, recently approved by the US Food and Drug Administration for narcolepsy, a disorder in which patients suffer sudden sleep attacks. No one knows quite how it works, he says, but it seems to have stimulating effects like Ritalin.

When fatigue is due to anemia, which can be caused by the cancer itself or cancer therapy, iron supplements, blood transfusions, or drugs that boost red blood cells such as Procrit, made by Ortho Biotech, often help considerably.

Fatigue has also been linked to low white blood cell counts, which occur when chemotherapy damages the bone marrow. There are drugs that stimulate white-cell growth, but they are usually used to protect against infection, not to boost energy.

In some patients, fatigue lifts when infections and chronic pain are treated. And addressing fairly common problems like an underactive thyroid gland, which could be overlooked in a person with a larger problem like cancer, also helps.

The bottom line, says Dr. Wendy S. Harpham, a doctor in Dallas who, like Candace Jennings, had to give up her practice when cancer struck, is that fatigue is one of the toughest adaptations that many patients have to make.

In some ways, she says, "the adjustment to my energy limitations has been harder than managing many of the other challenges of survivorship."

Jennings echoes that. Giving up her practice was difficult, she says, though she's found deep satisfaction as a part-time volunteer high school biology teacher. Exercise helps, too. And so do friends, who boost energy by helping keep her morale up.

A year ago, as she was finishing chemo, her friends took cuttings from their own yards and planted a "recovery garden" in hers. Recently, they got together to celebrate the flourishing garden and Jennings' courage. Not only could their energy prove contagious, the garden's may, too. It's doing so well, she says, "it's as if it's imbued with some kind of magic."

Drug-free ways to fight weariness

In addition to new drug strategies to combat cancer fatigue, researchers are exploring non-drug approaches.

A number of studies have shown that exercise - even gentle walking several times a week - seems to boost energy, says Paula Rieger, a nurse practitioner at the University of Texas MD Anderson Cancer Center and president-elect of the Oncology Nursing Society.

Using energy wisely - saving it for the things you really care about - also helps, says Dr. Donna Greenberg, a Massachusetts General Hospital psychiatrist. "Be thrifty with energy," she says. Delegate jobs - like grocery shopping - that someone else could do. Go to one social event, not two. If you're freshest in the morning, do the important things then, and then rest.

And try to avoid self-criticism for feeling tired. "People are harsh on themselves for not being able to fulfill obligations and for needing help," Greenberg says. "Fatigue is invisible and there's no lab test for it. That means that people often question whether their fatigue is physical or emotional, and it's hard to know whether to push yourself or rest."

Many tired patients also assume that their fatigue is a sign that their cancer is progressing. Often, that's not true.

Learning to expect fatigue also takes some of the worry out of it, cancer researchers say. Keeping a diary of the ebb and flow of energy can help, too, particularly in helping tease apart the different patterns of fatigue.

If you're reasonably energetic and motivated in the morning, but then fade, that's a sign you're not depressed but simply run out of energy.

If you can hardly get out of bed in the morning and have lost interest in doing normal things, that's a clue you may be depressed. Depression is highly treatable with anti-depressant medications and psychotherapy.

Disrupted sleep can also lead to fatigue, so sleep "hygiene" - sticking to a regular sleep-wake cycle and avoiding caffeine and other stimulants in the evening - helps.

And diet can help, too. Make sure you're getting enough calories and that you plan meals that appeal to you.

Judy Foreman’s column runs every other week. Past columns are available on www.myhealthsense.com.

Listen to her live call-in webcast radio show every Wednesday night from 8:30 to 9:30 EST on http://www.healthtalk.com.