John Perkins was gobsmacked by fatigue. Treated for prostate cancer through last November, Perkins, 69, was eager to resume his long daily walks through the woods, fields and streams of his hometown, Geneseo, New York, with his dog — a poodle named Gracie — always by his side. But although the mind was willing, the body wasn’t able.
Perkins, an accountant, underwent surgery last April, followed by a three-month course of radiation — through which he pushed himself to keep trudging along. He didn’t require chemotherapy but received a drug called Lupron, used to treat prostate cancer.
“Suddenly, in late December, I started to feel the fatigue,” Perkins says. It wasn’t just a need to lie down for a spell, either. “I felt really tired. Walking, my legs felt like lead,” he says. “We have a driveway of about 150 yards and it was a real struggle to get up that drive.” Comparing that to his formerly habitual trek of 6 or 7 miles a day, he could only ask himself: “What’s wrong?”
Like many cancer survivors, Perkins wasn’t aware that persistent fatigue can affect patients, sometimes for months or years following treatment. Now, as experts work to pinpoint the causes, they’re learning what works to ease cancer fatigue — exercise and counseling — and what doesn’t.
[See: 10 Things Younger Men Should Know About Prostate Cancer.]
Cancer fatigue affects multiple dimensions of a person’s life, says Karen Mustian, co-director of the cancer control and survivorship research program at the University of Rochester Medical Center‘s Wilmot Cancer Institute in New York. “My arms feel heavy,” patients tell her. “My legs feel like lead trying to walk two steps up to my back door,” she hears, and “I feel like lifting a grocery bag is like trying lift 100 pounds.”
Then there’s mental fatigue. Mustian, who directs the PEAK Human Performance Clinical Research Lab at URMC, says patients report they can no longer sit and read or focus their attention on a task because they get too tired. People are emotionally drained; their social life is affected and some can’t function at work or perform basic day-to-day tasks such as cooking, shopping and running errands.
Cancer fatigue is likely due to a combination of the disease itself and treatment side effects, Mustian says, although researchers are not yet able to able to quantify how much fatigue is due to each. “The treatments that we are giving patients to extend their lives — the surgery, radiation and chemotherapy regimens — create very real physiological changes in the body,” she says. “We are now learning that those changes are not temporary in a lot of instances.” Although these bodily effects aren’t entirely understood, she says, they may lead to symptoms including fatigue.
Overall, Mustian says, between 30 and 40 percent of cancer patients will continue to have chronic, severe fatigue for years after treatment. Lifestyle changes won’t always stop fatigue but they can make it more manageable.
It’s predictable — not surprising — that patients overwhelmed by treatment side effects will develop fatigue, says Vincent Buscemi, the clinical director of outpatient physical therapy at Winchester Hospital in Massachusetts, part of the Lahey Health System. Many patients can’t eat well after chemo and radiation, he says, further depleting their energy. Some develop thick, scarred connective tissue, or fibrosis, after surgery, reducing their range of motion.
With cancer fatigue, the motto is: “You can’t rest it away; you can’t sleep it away,” Mustian says. That might seem counterintuitive. But, she says, working with patients to change their thought process from, “I need to lie down on the couch and rest,” to “I’m tired and I know I need to get some walking in today to help me deal with it” is part of an effective approach.
Fatigue can have troubling consequences. “The problem is that fatigue becomes so severe that many times physicians will have to reduce the dose of the chemo or the radiation,” Mustian says. “Or maybe patients get so tired they begin to miss days or miss [treatment] cycles. So really the treatment is not able to be delivered in the most effective way that we know it should be.”
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By January, Perkins was worried, depressed and thoroughly frustrated. Up until 2011, he’d dealt with lifelong asthma that required him to use a rescue inhaler several times a day. Then, he and his wife acquired their new puppy and Perkins started walking. By 2015, Perkins and his canine companion were clocking some 200 miles a month. He rarely needed his rescue inhaler.
Then, nearly three months after his treatment was complete, fatigue threatened to wipe out Perkins’ hard-won fitness gains. “I’d go upstairs and literally have to sit down and get my breath back,” Unfortunately, his asthma inhaler was back in business. His oncologists ran tests but couldn’t explain his symptoms.
Buscemi says that before patients begin cancer treatment, it’s essential to prepare them for the likelihood of fatigue. That way, he says, “People aren’t panicked as much. They just have a better sense and less distress because they have more understanding” of what to expect.
When planning a physical therapy program, Buscemi takes each patient’s baseline physical condition and personal goals into account. It could be a man with advanced pancreatic cancer, for example. “If you ask him, he just wants to be able to take care of himself and maybe go out,” Buscemi says. But inactivity, rapid weight loss, growing weakness, nerve deterioration and muscle atrophy combined can make it hard for patients to achieve even a modest quality of life.
Starting an activity regimen as soon as possible helps patients do as well as they can. “It’s also the right exercise at the right time in people’s chemotherapy cycles that makes a difference,” Buscemi says. Simple exercises, such as getting up from and sitting in a chair five times or walking short distances, can be done at home.
Mustian’s latest research compared exercise, psychotherapy and medication for treating cancer fatigue. The findings, published online March 2 in the journal JAMA Oncology, are based on 113 previous studies involving more than 11,500 cancer patients. Drugs used in some studies included the antidepressant paroxetine (or Paxil), armodafinil and modafinil (the last two used to promote wakefulness) and other stimulant drugs like methylphenidate (Ritalin and other brands). They were not effective.
On the other hand, the study found, therapy programs tailored to address cancer fatigue do work. So does exercise, which, Mustian points out, is readily available and toxicity-free.
For health providers, Mustian says, the message is this: “We need to stop trying to reach for drugs that don’t work. Doctors and oncologists are still prescribing the drugs quite frequently, even though the evidence says these drugs really don’t work. And they don’t come without side effects and toxicities for your patients.”
[See: 10 Seemingly Innocent Symptoms You Shouldn’t Ignore.]
For Perkins, it seems, staying active even when the going got toughest has helped him prevail over fatigue. He’s not totally back to his pre-cancer form, but he’s doing much better and is once again racking up daily miles.
Learning he wasn’t alone in suffering from delayed fatigue was a huge relief, Perkins says. To those choosing cancer providers, he suggests, “Find someone who can say, ‘These are all the options that might happen to you.’ They probably don’t want to worry you. But frankly, I got more worried and fed up because I didn’t know what was going on.”
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Cancer Fatigue: So Tired by Treatment originally appeared on usnews.com
