Managing Childhood Leukemia Pain: Causes, Treatment, and Prevention
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This year, about 15,000 parents will learn that their child or teen has cancer, according to the National Cancer Institute. For many of these kids the cancer is leukemia, which is the most common type of cancer in this age group.
Thanks to treatment advances, most children with leukemia will go on to live full and healthy lives, says Yale Medicine. But during their treatment, they’ll have to deal with many side effects — including pain.
Seeing your child in pain can be distressing. Know that for every possible cause of childhood leukemia pain, your child’s treatment team has a way to manage it.
Cancer Pain
Children can feel pain from both their cancer and its treatments. The pain can range from mild to severe. It can feel achy, tingly, burning, or sharp, depending on the cause.
Children who are newly diagnosed with leukemia often feel pain in their bones because their bone marrow is filled with cancer cells, says Seth Karol, MD, an associate member in the leukemia-lymphoma division in the oncology department at St. Jude’s Children’s Research Hospital in Memphis, Tennessee. Some children stop walking because their legs hurt so much.
Children may also feel pain in other parts of their bodies, depending on where the cancer cells have spread:
- Joint pain is a sign that cancer cells have multiplied inside the joint.
- Belly pain could be a sign of cancer cells in the kidney, liver, or spleen.
- Chest pain and pain while breathing are signs of leukemia cells in the thymus, a small organ behind the breastbone.
Fortunately, cancer pain should improve once your child starts treatment. “As children begin chemotherapy to treat their leukemia, the pain tends to get better quite quickly,” Dr. Karol says.
Pain From Leukemia Treatment
Chemotherapy is something of a double-edged sword. As these powerful drugs kill cancer cells, they also damage healthy cells in the child’s body.
The chemo drug vincristine is notorious for causing nerve damage. “The pain feels like pinpricks, or the sensation that your hand or foot has fallen asleep,” says Karol.
Chemotherapy pain should improve once your child finishes treatment. In the meantime, medicines like gabapentin (Neurontin) or pregabalin (Lyrica) help to relieve nerve pain.
Infections are another possible cause of pain. Kids with cancer catch more infections than usual because they have fewer of the white blood cells that normally fight off germs, says the American Cancer Society. Pain in your child’s belly, IV access site, or face could be signs of infection.
Pain is also a part of the bone marrow biopsies, lumbar punctures, and other procedures children with leukemia will need frequently to diagnose their cancer and monitor their response to treatment. Kids are sedated during these procedures, but they may hurt afterward. “They wake up and they’re sore, and that soreness can last for two or three days,” Karol says.
Post-procedure pain and chemo pain is usually managed with medications like acetaminophen (Tylenol). For more severe pain, kids may need an opioid drug like morphine.
Finding the Cause of Pain
Managing leukemia pain requires some investigation. “A lot of what we do as pediatric oncologists is to work with parents to understand what is causing the pain, so we can then treat the source,” says Etan Orgel, MD, pediatric oncologist and director of the Medical Supportive Care Service, Survivorship, and Supportive Care Program at Children’s Hospital Los Angeles.
For example, pain in the stomach could be from heartburn — a side effect of steroids. Or it might be caused by a stomach infection. Your child’s doctor will do an exam and may order blood or imaging tests to find the cause.
Managing a child’s pain is a team effort that involves a variety of specialists, including nurses, pain medicine specialists, therapists, and sometimes palliative care experts. “Together, we are able to develop an individualized plan for each child to help them through the ups and downs of their treatment,” Dr. Orgel says.
Pain Prevention Strategies
Although there are treatments for the different types of leukemia pain, your child’s cancer team will do everything possible to prevent pain to begin with, says Orgel. They’ll give your child anesthesia for biopsies and spinal taps to make sure these procedures are pain-free, and will do everything possible to prevent uncomfortable chemotherapy complications like constipation and nerve pain.
For children who do develop complications: “We have different pain medications by mouth or infused into a vein that can help soothe muscle spasms, quiet nerve tingling, and treat physical pain to minimize the suffering from going through such an episode,” Orgel says.
Medicine isn’t the only way to relieve cancer pain. Complementary and alternative therapies are also helpful, including acupressure, massage, and warm or cold packs. Mind-body approaches like meditation, relaxation techniques, and art and music therapy are other ways to help children cope with their pain.
Many children benefit from talking through their pain with a therapist, psychologist, or other mental health care provider. “Helping our patients understand, process, and cope with their experience is just so important to reduce the fear, anxiety, and suffering that can accompany painful episodes,” Orgel says.
Never underestimate the power of distraction, too. Reading a favorite book, playing a video game, or taking a walk outside can be very effective ways to take a child’s mind off their pain, adds Karol.
When to Call Your Doctor
If you notice that your child is in pain or has any new symptom, report it to their oncology team, says Karol. Because very young children may not be able to tell you when they hurt, be vigilant for warning signs like refusing to walk, eat, or play.
Don’t try to treat pain on your own without talking to the doctor. Some over-the-counter pain relievers could interact with chemotherapy drugs and make side effects worse, or even block the chemo from working, he adds.
Undergoing cancer treatment is never an easy experience for children, but pain doesn’t have to be a given. “It’s important to talk about it with your provider, because we can often do things that will minimize it or even make it go away completely,” Karol says.
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