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Fatigue is cancer patients’ most debilitating symptom
If Angelo Rizzo, PT, had ever wondered whether he was on the right career path, those doubts were put to rest when he was diagnosed with chronic myeloid leukemia in 1999. A year before, Rizzo, president of Therapeutic Solutions in Atlanta, had begun a push to get oncologists to refer their patients to rehab for cancer-related fatigue (CRF). He had to put those plans on hold while he went through heavy chemotherapy, searched unsuccessfully for a bone marrow donor, and ultimately enrolled in a clinical trial that sent his leukemia into remission.
Rizzo, who also is vice president of the oncology section of the American Physical Therapy Association in Alexandria, VA, says the timing was no coincidence. "I feel like God had a plan for me," he says. "Putting me in that leukemia situation really gave me an opportunity to share with patients what I was experiencing first-hand. Every day, I feel I’m a better therapist because of what I’ve gone through personally with my leukemia."
During his six months of chemotherapy, Rizzo found he was unable to work more than two hours a day because of fatigue. "After about a month, I said I need to be practicing what I’m preaching here, and I started myself on the fatigue rehab program," he says. "I saw an amazing difference in a six-week period. It gave me an amazing passion to promote this."
Rizzo is constantly working to convince oncologists to set up formal rehab programs for their patients at one of the seven Therapeutic Solutions locations in the Atlanta area. It took four years to convince one oncology practice to do so, but as the physicians began to see the improvements patients were making, they started recommending it to more patients. Rizzo estimates, however, that the practice is still only referring about 25% of its patients who could be helped by the program.
Many physicians either don’t realize the benefits of rehab for CRF or underestimate the amount of fatigue their patients experience, Rizzo says. But studies from the Rockledge, PA-based National Comprehensive Cancer Network (NCCN), made up of the country’s top cancer centers, have found that about 90% of all patients undergoing chemotherapy and radiation experience significant fatigue that physically impairs their functioning.
It’s not hard to figure out why: chemotherapy, radiation, and surgery can all be debilitating. "The tumor is growing, so that expends energy. Then you are deconditioned because you’re feeling weak and not exercising. Your nutrition is less than normal," Rizzo says. "Chemotherapy has an impact on so many organs and healthy tissues that are responsible for giving the body energy, so that’s compromised."
Add to that pain, sleep problems, and emotional distress, and you have a recipe for physicians and patients who already have too much on their plates. "Doctors have so much to do with the more life-threatening issues that they’re not all that concerned with the quality-of-life issues," Rizzo says. "And patients are so fatigued that they aren’t even willing to get involved. The thought of going somewhere to expend more energy is out of the question. It’s too exhausting even to make one more appointment."
But that one more appointment could make all the difference. The NCCN reports that when patients were asked what their No. 1 most debilitating symptom was, they said fatigue. Physicians who answered the same question said pain was the most debilitating symptom experienced by cancer patients. In the survey, 60% of patients said they mentioned their fatigue at every visit. Only 6% of doctors said it was addressed every time.
Improvement seen at first visit
Rizzo says patients see an immediate improvement, usually before their first rehab visit is over. "We teach them simple modifications to the ways they sit and stand and breathe and walk that immediately begin to add more energy," he says.
Therapeutic Solutions surveyed the first 200 patients in its cancer program and found overwhelming improvements. Patients were asked to rate their fatigue on a scale of 0 to 10 both pre- and post-treatment. Sixty percent of the patients had more than a 90% improvement in their fatigue level. Sixty-five percent had more than a 90% improvement in their functional activity level.
Research from the NCCN shows that exercise is the No. 1 most effective non-pharmacologic intervention for CRF. In its treatment guidelines (which can be found at www.nccn.org), the organization encourages physicians to be proactive about fatigue with early detection and intervention protocols. Before patients start the first day of chemotherapy, they should be told to alert their nurse or physician at the first sign of fatigue. Then the physician should be ready with a referral to rehab.
NCCN released a set of guidelines in May directed at patients experiencing fatigue. "Feelings of fatigue should not be dismissed but discussed," says Rodger J. Winn, MD, chairman of the NCCN’s Guidelines Steering Committee and a researcher at the University of Texas M.D. Anderson Cancer Center. "When patients and physicians work together, they are often able to find the source of the fatigue. With that knowledge, the health care team is able to provide suggestions to lessen the fatigue."
Rizzo says from his personal experience that it was amazing how much the rehab program helped. Patients usually come three days a week for one month, and the therapist teaches them a home program to follow. The program starts with an assessment of such issues as functional changes, strength, endurance, mobility, breathing, and gait. Then the therapist makes an individual plan to improve areas of weakness. "The therapy program is not all that different from the program for other patients, but therapists do need to understand the cardiac, respiratory, and bone risk factors," Rizzo says. "We can show patients energy conservation techniques, like how to change an inefficient gait. We help them prioritize and see what activities or chores are truly essential and which could be delegated. That gives them the energy they need to do the more important things."
Besides making life easier physically, fatigue rehab also can dramatically improve patients’ emotional state, Rizzo says. Patients in his survey reported an improved sense of control over their lives. "They are hooked up to machines so much of the time and they lose so much control. They have physical limitations and are dependent on caregivers," he says. "Patients who have fatigue have much higher incidences of depression, anxiety, and pain. We can teach them how to get more independence and give them a sense of hope and a positive outlook. That can make a tremendous amount of difference in the healing process."
And it doesn’t hurt to have a physical therapist who is living proof that cancer doesn’t have to be a death sentence. "I’m still in major remission, and I think it just reinforces to them that hopefully their situation is only temporary," Rizzo says.
Need more information?
Angelo Rizzo, PT, president, Therapeutic Solutions, 1901 Montreal Road, Suite 132, Tucker, GA 30084. E-mail: email@example.com.
National Comprehensive Cancer Network, 50 Huntingdon Pike, Suite 200, Rockledge, PA 19046. Telephone: (215) 728-4788. E-mail: firstname.lastname@example.org.