Neuropathy, a sensation of numbness, tingling, or weakness, is a common and sometimes debilitating side effect of chemotherapy and other leukemia treatments. Members of MyLeukemiaTeam talk about tingling, numbness, and pain in feet, hands, and legs that make it hard to walk, drive, get dressed, or sleep.
One woman described neuropathy as “walking on rocks with knots on the bottom of your feet.” Another member said, “It feels like I have rubber bands tied around my feet.”
Chemotherapy-induced peripheral neuropathy, or CIPN, affects an estimated 10 to 20 percent of people with cancer, according to the Leukemia and Lymphoma Society (LLS).
One MyLeukemiaTeam member, who “developed chemical-induced neuropathy,” said “it’s painful and hurts all the time.” Another agreed, “I have neuropathy in my legs, feet and hands, numbness in my left thigh when I stand too long, and tingling toes and fingers when it’s cold. It sucks.”
Certain chemotherapy drugs for leukemia can damage the nerves that control sensation, and even mobility. Members of MyLeukemiaTeam report that other treatment regimens can also cause neuropathy. One member on Imbruvica (Ibrutinib) has “pain so severe,” he can hardly walk, as well as foot and joint pain that “comes and goes.” Another suffering with foot and hand neuropathy said, “They tell me it can be a side effect of Gleevec (Imatinib).”
Who gets CIPN? Some people develop symptoms after the first dose; others may not have a reaction till later in treatment. Notify your doctor at the first sign of nerve problems, so treatment can be modified or discontinued to prevent further complications.
Your doctor may recommend one of the following treatment options for neuropathy:
CIPN is typically treated with antidepressants, anticonvulsants, pain medications, or a combination of them. Commonly prescribed drugs include Neurontin (Gabapentin), Elavil (Amitriptyline), Lyrica (Pregabalin), (Duloxetine), and Tegretol (Carbamazepine). Doctors may also recommend corticosteroids, such as Dexamethasone, to reduce inflammation that causes neuropathy.
MyLeukemiaTeam members report mixed results from prescription medications used to treat neuropathic pain. One member said, “Gabapentin was a huge help for me” while another shared, “Gabapentin didn’t work.”
Doctors often prescribe Tylenol for mild pain. Topical pain patches and creams, such as lidocaine, may also be recommended to numb or reduce localized symptoms. “Lidocaine helps take the edge off,” shared one member of MyLeukemiaTeam.
“I’ve found that creams and icy hot patches help better than ice or heat,” said one member. “I use topicals as much as possible; my liver doesn’t like meds,” shared another. Also popular among members: Epsom salt baths and heating pads for pain relief.
Stronger medications may be prescribed in cases of severe pain. Non-steroidal anti-inflammatory drugs (NSAIDs) should not be used without first consulting with your doctor.
Some members take vitamins or supplements to tame neuropathic pain. One member of MyLeukemiaTeam, whose neuropathic symptoms used to keep her up at night, started taking 400 mg of magnesium daily. “The episodes have greatly reduced,” she said.
Check with your doctor before starting any new supplements.
Many members of MyLeukemiaTeam swear by CBD, where legally available, when other pain medications fail.
“I discovered that a mixture of CBD and peppermint oil is amazing for muscle and bone pain. I rub that into my sore spots throughout the day. It works better than any [pain] medicine I’ve been prescribed,” explained one woman. Always consult with your doctor before using medical marijuana, as it may interact with your leukemia treatment.
One of the most effective treatments for neuropathy, physical therapy can help with balance, strength, and pain. “First small victory: I no longer need the heating pad for the first time in 10 sessions of physical therapy to calm back and side pain,” shared one man. “So, I doubled up on my exercises, and the best part, NO PAIN!”
Low-impact activities such as swimming, biking, walking, and stretching can all help with side effects of neuropathy. One member found that exercising “intermittently throughout the day” on a mini trampoline, also known as rebounding, has helped his pain and treatment recovery.
Acupuncture, lymphatic drainage, relaxation techniques, meditation, yoga, guided visualization, and other complementary therapies have all shown promise in reducing the side effects of neuropathy.
One MyLeukemiaTeam member found a yoga stretch for legs and feet that “seems to help with my neuropathy. I’m two days in and feeling some relief today,” she said. Another advised, “Keeping a pillow under your knees when lying on your back - or between your knees laying on your side - to give you the best success with that big pain.”
Members also share their experiences with supportive shoes to reduce pain in feet and legs. “Here's what works for me,” said one member. “A pair of Sketchers shoes that cushion my foot so that I don't get pain when I walk. I also get thick inner sole padding for the other shoes I do wear. It helps.”
If you’ve lost feeling in your hands or feet, there are several ways to stay safe. For example, use potholders when cooking and extra caution handling sharp objects. The Leukemia and Lymphoma Society have more safety tips for neuropathy.
On MyLeukemiaTeam, the social network and online support group for those living with myeloma, members talk about a range of personal experiences and struggles including neuropathy.
Can you relate? Have another topic you'd like to discuss or explore? Go to MyLeukemiaTeam today and start the conversation. You'll be surprised how many others share similar stories.