Healed, but hurting
Conquest - Spring 2014
The pain won’t stop, but it won’t stop her.
By Julie Penne
Angela Pace believes she’s earned the right to call herself a survivor. The 27-year-old lived through a rare cancer that only one other person is known to have survived. She’s also lived most of her life with constant and severe pain.
Today, the cheery young woman from Nacogdoches, Texas, is cancer free and her pain is under control.
Pace’s long journey of faith and fortitude, care from myriad MD Anderson specialty teams and her family’s support has led her to where she is today: teaching music to preschoolers and attending school and church activities regularly and enthusiastically. She also enjoys being the best aunt possible to her three active nieces and nephews and looking ahead to a bright future for which she’s always prayed.
When Pace was diagnosed at age 3 with ganglioglioma — a rare, slow-growing tumor — in her spine, her parents were told their toddler had only two months to live. Even as a tyke, Pace fought hard through years of chemotherapy that resulted in painful peripheral neuropathy — chemo-induced nerve pain — so severe that even a bed sheet touching her feet felt like stabbing pins and needles.
She also underwent radiation that would later lead to another cancer. At 17, Pace was diagnosed with osteosarcoma, a bone cancer that had to be treated with multiple major surgeries to rebuild her pelvis, hips and back. The second diagnosis meant months of chemo and rehabilitation to learn to walk again — and more pain.
“Looking back on my twenty-some years at MD Anderson, I spent as much time going to appointments that addressed my pain as my cancer,” she says. “It’s important to not give up, to try different things until something works for you. I’m living proof.”
Not only is Pace an example of persistence and optimism, she’s a study in the evolution of pain management and its wide range of options. Her experience underscores the importance of seeing specialists who work in an integrated and collaborative program.
Over the years, Pace has had several nerve blocks, Botox injections in her legs and back for spasms, radio-frequency treatments and almost nonstop prescriptions for potent painkillers.
Recently, she had a pain pump inserted into the intrathecal space around her spinal cord by Brian Bruel, M.D., a device she controls through a handheld remote. Pace can use the pump, which works like an epidural, up to four times a day to better control her pain. She sees Bruel every three months to refill and charge the computerized device.
“My pain isn’t completely gone, but the pump has helped it tremendously, keeping me in the classroom with my students and living my life,” she says. “I also use other nonprescription techniques to help me ‘zone out’ of the pain. You can’t let the pain take over, but it can be difficult sometimes.”
Bruel, an assistant professor in Pain Medicine, agrees with his patient about the range of options and not giving up.
“There are many ways to treat pain, and it’s important to understand where the pain is originating, why it’s occurring and if it’s signaling a recurrence or spread of disease. But also important is the impact it has on a patient’s treatment, life, outlook and relationship with their family,” Bruel says. “Our goal is always to see a patient as soon as they begin to develop symptoms because, like their cancer, that’s when we have the most options and greatest chance for success. Plus we know that if we can control a patient’s pain, they’re more likely to do well with treatment.”
Working closely with Bruel and others in the Pain Management Center is psychologist Diane Novy, Ph.D., who sees up to 10 patients a day. They talk about how their pain is affecting their lives and families, not just their treatment. She also sees survivors still impacted by pain and patients facing end-of-life decisions.
Novy, a professor in Pain Medicine, says cancer pain is unlike any other pain because it’s often linked with uncertainty, fear of recurrence or progression of disease, loss of control and death. Pain can be associated with or magnified by depression and anxiety, so she works closely with patients and families to understand the influence it may have on a patient’s daily life and their relationships.
“Pain is as individual as each person and each patient’s cancer experience,” Novy says, who’s been a part of the pain management team since 2001. “It’s vital that our team understands not just
the physical aspects of a patient’s pain but the psychological elements as well. We talk so much about treating the whole patient at MD Anderson, and this is a great example of that philosophy.”
Among the many issues Novy, Bruel and their colleagues clue into are the fears patients and survivors may have about the long-term use of a class of prescription painkillers known as opioids.Last fall, the Food and Drug Administration (FDA) proposed new restrictions on the most commonly prescribed opioids.
“It’s vital that patients in pain from cancer or its treatment see a pain specialist,” says Salahadin Abdi, M.D., Ph.D., chair of Pain Medicine. “We agree with the FDA that there should be greater regulation of these potent painkillers. That said, it’s also important that patients who are under the care of proper specialists, and who need these medications, have access to them.”
For now, pain specialists match the right patient with the right pain management option at the right time by communicating openly, sharing information and using clinical expertise. However, that could change. In the years to come, with the introduction of personalized medicine, pain management could be more tailored to each patient’s disease and genetic makeup, in the same way much of cancer care is today.
Research in this area is just beginning, but there’s hope there may be an established biological marker to target for chronic pain, just as there are treatment targets for so many types of cancer now.
It’s one of many areas that Abdi is eager to explore with colleagues as part of an expanded research agenda for his group.
According to Abdi, previous research shows there are a number of genes affected by injury, inflammation and/or nerve damage. If those markers can be pinpointed, there may be better opportunities to predict which drugs or therapies are most effective for each person’s pain.
“Looking back on my twenty-some years at MD Anderson, I spent as much time going to appointments that addressed my pain as my cancer. It’s important to not give up, to try different things until something works for you. I’m living proof.”
— Angela Pace
“We’re moving into this exciting new era of genetics and pharmacogenomics in pain management, and we’re just starting to understand the many possibilities,” he says. “MD Anderson is the ideal place to explore and apply the science behind pain because we have the expertise, resources, spirit of collaboration and patient focus.”
Abdi and his colleagues also are pursuing research on the use of nanotechnology to deliver some anesthetics directly to a pain site. And there are early studies underway looking at how free radical scavengers may be used to alleviate pain in patients who have neuropathy.
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In This Issue
- Saying thanks to a champion of the struggle
- The pain won’t stop, but it won’t stop her
- The drug that may make chemo a thing of the past
- Understanding over-imaging
- Convenience comes standard at Rotary House
- Casting a wide network
- A tale of two proteins
- Invasive bladder and breast cancers bear a molecular resemblance
- Sensor-based technology benefits both patients and clinicians
- The write stuff improves outcomes
- Drugs team up to hit tumors, boost immune system attacks
- Blood test may one day reveal cancer
- MD Anderson immunotherapy pioneer’s List of awards keeps growing
- Screening tool targets body-image concerns
- MD Anderson establishes immunotherapy partnerships
- Leukemia chair picks up lifetime achievement honor