You might think, to hear about Dr. Wendy S. Harpham’s life, that it’s perfectly obvious why she’s always exhausted.
For one thing, she and her husband run a very busy household in Dallas with three kids, ages 8, 10, and 12.For another, she’s written four books on cancer since 1992 – much easier, she says, than the 15-hour days she used to put in as an internist in solo practice. She’s also in constant demand on the national lecture circuit.
But the real reason that Harpham, 42, is always tired is that she suffers from “post cancer fatigue,” the result of a seven-year battle with lymphoma that forced her to give up her medical practice.
Post cancer fatigue, as she defines it, is fatigue that persists after treatment is over, all known causes of the fatigue have resolved and the patient is in remission. Everyone agrees it’s common, though no one knows for sure how many of the eight million Americans who’ve had cancer suffer from it.
In fact, doctors don’t know much about cancer fatigue, period. That goes for the kind that accompanies debilitating treatments like chemotherapy or radiation as well as the kind that lingers on afterward.
But patients like Harpham do. Once, during treatment, her fatigue was so draining that she remembers sitting at the table thinking, “Oh, my gosh. I have to lift a fork.”
Now, 18 months after her last treatment, she is still so tired she is “always calculating how much energy something I want to do will take, because I always run out.”
Recently, however, a group of cancer specialists and patient advocates called the Fatigue Coalition has begun trying to understand why cancer-related fatigue is so common and, equally important, why so many doctors still don’t take it seriously.
According to a recent coalition survey of 419 cancer patients, 200 caregivers and 197 oncologists, fatigue, not pain, was the patients’ most common complaint. Half were more than a year post-treatment.
Fatigue, the survey also showed, is the problem most likely to chip away at quality of life. Nearly 80 percent of patients experienced fatigue at some point, and more than half said they felt it on most days, if not every day. Many said fatigue affected them to the point where they had trouble working, walking any distance, being intimate with a partner, or meeting the needs of family and friends.
Yet perhaps the most striking finding is this: Most people with cancer think fatigue is something they must put up with.
Only 31 percent even mention it to their doctors on every visit. And when they do, doctors barely hear it: Only five percent of oncologists think patients mention it that often.
To many doctors, fatigue “just doesn’t register on the radar screen as an acute or urgent problem, but for the person with cancer, it’s often the dominating problem,” says Dr. Jerome Groopman, chief of experimental medicine at the Beth Israel Deaconess Medical Center and a member of the Fatigue Coalition.
“When a cancer patient tells a doctor he’s tired, the doctor almost shrugs his shoulders. That’s not a satisfactory answer.”
Especially since some – though by no means all – of the reasons for cancer fatigue can be reversed.
For instance, anemia, low levels of oxygen-carrying hemoglobin in the blood, can often be treated with transfusions or a drug called erythropoietin. Thyroid deficiency, which can occur if radiation to the chest or neck damages the thyroid gland, can also be remedied with medication.
So can the aftereffects of steroid drugs. When people take steroids for long periods and then stop, they often get tired if their adrenal glands can no longer produce enough cortisol. Medication to replace the missing cortisol can help.
Good diet – see a nutritionist if you think you’re not eating right – can also help, as can getting enough rest, even scheduling naps during a busy day.
If Harpham skips her daily nap, “my kids can tell in a minute,” she says. “I make mistakes and I’m not as nice or patient. I’ll forget to do something they asked me to do. I cry more easily. We have all learned that Mom’s getting a nap is an important part of the day.”
Anxiety and depression, which can also lead to fatigue, are also highly treatable with counselling or medication.
Paradoxically, exercise also seems to help people who may feel almost too tired to move, probably by fighting the loss of conditioning that comes from too much lying around.
There is a caveat here, warns Harpham: You have to keep “listening to your body,” because the same amount of exercise that can boost energy one day may sap it the next. But overall, moderate exercise is probably a boon.
Last week, German researchers reported in the journal Cancer that exercise, not rest, was more likely to restore vigor in patients who had undergone high-dose chemotherapy and stem cell transplantation, which is similar to bone marrow transplant.
Although the study involved only 32 patients and had some methodological weaknesses, the results are striking and important, says Dr. Harmon Eyre, executive vice president for research and cancer control at the American Cancer Society.
“Twenty-five years ago, we had people recuperating from surgery lie around in bed. Now we have learned that if we get them up . ., you get them out of the hospital” sooner. The German study suggests exercise may be similarly beneficial to people with cancer.
Don’t panic, we’re not talking marathons here. In the German study, the exercisers started off gingerly – three minutes on the treadmill, five times a day, then worked up to 30 minutes per session after six weeks. By then, though, they were in far better shape than the non-exercisers – they lasted longer on treadmill tests and their hemoglobin counts were higher.
Still, there is much that researchers do not understand.
Fatigue “is clearly related to low white blood cell counts,” says Dr. Nicholas Vogelzang, an oncologist at the University of Chicago and member of the Fatigue Coalition.
But no one really knows why. Perhaps the body’s hormone balance gets out of whack. Perhaps the weakened immune system is using lots of energy trying to fight infections.
Or perhaps substances like TNF, or tumor necrosis factor, released by white blood cells, cause the fatigue.
In addition, people with cancer don’t metabolize the calories they eat efficiently. “It’s very clear that cancer patients don’t handle nutrients in the normal fashion,” says Eyre.
Despite all the unanswered questions, says Harpham, it’s crucial for patients who have fatigue to tell their doctors about it – and for doctors to listen.
And when healthy friends or colleagues say “I’m tired, too,” she suggests telling them, gently, that they really don’t understand at all.
Cancer surivors with fatigue, she says, “never feel rested. And if you look great, you have to keep explaining yourself, because you can’t perform the way someone with normal energy can.”
Where to learn more
If you want to read more about cancer fatigue, you might try the following books by Dr. Wendy S. Harpham:
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When a Parent Has Cancer: A Guide to Caring for Your Children; and Becky and the Worry Cup (two-volume set); HarperCollins; 1997.
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After Cancer: A Guide to Your New Life. W.W. Norton, 1994; paperback edition, HarperPerennial; 1995.
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Diagnosis: Cancer. Your Guide Through the First Few Months; W.W. Norton; 1992.
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You may also want to read:
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Taking Control of Fatigue, a free booklet, video and daily journal; available through the American Cancer Society, 1-800-227-2345 begin_of_the_skype_highlighting 1-800-227-2345 end_of_the_skype_highlighting.
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Everyone’s Guide to Cancer Therapy; by Malin Dollinger, M.D., Ernest H. Rosenbaum, M.D. and Greg Cable; Somerville House Books.