Living with Metastatic Illness

Quality Control: Even with metastatic cancer, many patients live long and well.

Diane Klenke thought she was dealing with a bout of the flu, when she finally went to see her doctor about a persistent stomachache. She was completely unprepared for the news she had stage 4 pancreatic cancer that had metastasized to her liver.

In her initial visit, she was told that she might only have three months left to live. But that was in February 2004, and today, the 54-year-old Green Bay, Wis., resident has clearly survived long past her initial prognosis and has enjoyed a high quality of life, despite living with metastatic cancer.

“I learned to be my own advocate, fighting for the care I needed and requiring doctors to answer the ‘whys’ and ‘how it works’ questions,” Klenke says. “It made me feel like I had some input, some control.”

Scientific advances and improved therapies have extended survival for many, and newer treatments are better focused with fewer side effects. However, disease symptoms and treatment side effects can still negatively impact a patient’s quality of life.

Klenke credits her success to a rigorous treatment regimen of chemotherapy, integrative therapies, a strong support system and faith. Her symptoms to date have been minimal and controllable. “As a result of the intense chemotherapy, I became a type 2 diabetic,” she says. “But a couple of prescriptions, great diet and exercise keep me in normal ranges.”

Mild swelling in her feet and lower legs that occurred during treatment was improved, she says, by increasing her protein intake.

In addition to drug-related side effects, patients with metastatic disease may also be dealing with cancer-related pain, bone weakness and fatigue, as well as treatment-related side effects, such as nerve damage and gastrointestinal issues.

Cancer-related pain may be caused by the tumor itself or by the treatment, and it remains one of the most common symptoms experienced by patients with metastatic disease, affecting more than three-fourths of all individuals at some point.

“Nearly all cancer patients [with significant pain] should be on a long-acting drug to help manage it and a short-acting drug for breakthrough pain,” says Thomas J. Smith, MD, director of palliative medicine at Johns Hopkins Sidney Kimmel Comprehensive Cancer Center in Baltimore. “And patients should see a pain or palliative care specialist if their pain is not being addressed by their regular provider.”

I learned to be my own advocate, fighting for the care I needed. It made me feel like I had some control.

Numerical rating scales of 0 (indicating no pain) to 10 (indicating the worst pain imaginable) are most commonly used in the initial and ongoing evaluation of pain. Ideally, the pain score should be kept down to 4 on that scale, as patients can function at that level, Smith says.

Regardless of its source, pain treatment usually includes the use of some type of analgesic medication. The World Health Organization’s pain ladder advocates a stepwise approach. Pain relief begins with nonopioids, such as aspirin and acetaminophen, and then progresses as needed to mild opioids, and then stronger ones, such as morphine.

Talk about this article with other patients, caregivers, and advocates in the Pancreatic Cancer CURE discussion group.
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