How It Feels | Causes | Treatment-Related Pain | Management | Support
Leukemia can cause different symptoms in different people, depending on age, type of leukemia, and other factors. Pain is one of the most common symptoms people with leukemia experience.
There are several causes of pain in leukemia, including leukemia treatments and the disease itself. Here, we will consider the different causes of pain in leukemia, as well as how pain may be managed at home and with your doctor’s recommendations.
MyLeukemiaTeam members describe pain with leukemia in many different ways. “Very nauseous today,” wrote one member, “and having bone pain.”
Bone or joint pain is a common form of pain in leukemia — members have discussed feeling pain in their back, neck, legs, and other joints. As one member wrote, “I have had pain in my shoulders, both arms, and thigh bones.”
The frequency and severity of pain in leukemia can vary widely from one person to the next. “The worst thing is pain when you can’t find relief,” wrote one member.
Several members have shared that pain has been severe enough to make it difficult to walk. Others find that their pain ebbs and flows: “I don’t have constant pain,” one member shared. “It comes and goes. Not sure why, but I’m thankful for that.” Others feel pain more often: “My husband is in pain 24/7,” said a member.
Pain may also be accompanied by other uncomfortable symptoms. Several members have described experiencing chills alongside pain, while others have shared that they’ve had headaches, as well.
Leukemia is a type of blood cancer in which abnormal blood stem cells develop and grow too quickly in the bone marrow. Leukemia causes symptoms when abnormal white blood cells begin to crowd out normal white blood cells and spread. A person with leukemia can experience different types of pain in different areas of the body depending on the amount of these abnormal cells and where in the body they collect.
Bone and joint pain are some of the most common symptoms of leukemia. They may occur as early symptoms or later in the disease as a result of treatment. According to a 2018 survey by Leukaemia Care in the United Kingdom, 20 percent of people with leukemia experienced bone or joint pain before receiving their diagnosis.
Bone pain is most commonly felt in the long bones in the arms and legs, as well as in the ribs and sternum (breastbone). Joint pain tends to affect the large joints, such as those in the hips and shoulders.
Bone pain in leukemia usually occurs as the result of the accumulation of cancerous white blood cells in the bone marrow. This buildup exerts pressure on the nerves inside the bone tissue, leading to soreness, aching, or sharp pain.
Similarly, joint pain can occur when leukemia cells collect inside the joints or around the surface of the bones. Many MyLeukemiaTeam members report experiencing joint pain with leukemia. One shared that they were having joint pain and fatigue, while another member wrote, “My knee is hurting really bad. … This pain is in addition to my bone and joint pain.”
Bone pain is also a common side effect of many treatments for leukemia, including chemotherapy, radiation, and surgery. As one MyLeukemiaTeam member wrote, “Imbruvica can have side effects that cause severe joint and bone pain. I also suffer from foot pain. … It, like other joint pain (elbows, knees, hands), comes and goes. I’ve also had the pain so severe that I could hardly walk.” Another member taking Imbruvica (a formulation of ibrutinib) wrote that they were “having severe lower back pain.”
In some cases, cancerous white blood cells accumulate in organs in the abdomen, including the liver, spleen, and kidney. The buildup causes the organs to enlarge, leading to abdominal pain, as well as potential appetite loss and weight loss.
In people with T-cell acute lymphoblastic leukemia (T-ALL), cancer cells frequently cluster around the thymus — an organ in the immune system that produces defensive T cells. The thymus is located in the chest. The accumulation of these leukemic cells around the thymus can cause chest pain, as well as difficulty breathing.
Peripheral neuropathy refers to conditions that occur when the nerves in the peripheral nervous system, which are responsible for transmitting messages from the brain and spinal cord throughout the body, are damaged. Treatments for leukemia, as well as leukemia itself, can lead to peripheral neuropathy in some people with this type of cancer.
Members of MyLeukemiaTeam have reported experiencing neuropathy with leukemia. As one member wrote, “It’s painful and hurts all the time.” Another member described the sensation as “walking on rocks with knots on the bottom of your feet,” while another member said, “It feels like I have rubber bands tied around my feet.”
Certain chemotherapy drugs for leukemia can damage the nerves that control sensation and even mobility. Members report that other treatment regimens can also cause neuropathy. One member taking Imbruvica described having pain so severe that they can hardly walk, as well as foot and joint pain that comes and goes.
Another member with foot and hand neuropathy said, “They tell me it can be a side effect of Gleevec.”
Note that Imbruvica and Gleevec (a formulation of imatinib) rarely cause neuropathy as a side effect. Vincristine (sold as Marqibo) and vinblastine (Velban) have been known to cause neuropathy in people with leukemia.
Some treatments for leukemia may cause pain as a side effect. These include:
Both chemotherapy and radiation therapy can lead to pain and discomfort. Aside from peripheral neuropathy, the treatments may also result in mouth sores, scarring, and radiation burns.
Bone marrow biopsy and bone marrow aspiration are testing procedures that may be used to confirm a leukemia diagnosis. These tests involve using a needle to remove samples of bone marrow (the spongy tissue inside some of the bones). A person who has had either of these procedures may experience discomfort or bone pain at the site of the procedure for several days after it was performed.
Other tests for leukemia, such as blood tests, may also be uncomfortable for some people.
Before a stem cell transplantation is performed, a person will go through conditioning therapy or treatment with high-dose chemotherapy or radiation. This therapy can cause painful sores (ulcers) to develop in the mouth (known as oral mucositis).
Tell your doctor as soon as you experience pain with leukemia. They will be able to work with you to determine the best way of managing any discomfort, whether it’s medications, physical therapy, or other management techniques. The approach your doctor recommends will likely depend on the type and cause of your pain.
An oncology specialist may prescribe or recommend medications to help relieve pain associated with leukemia or cancer treatment.
Mild to moderate pain associated with leukemia may be managed with over-the-counter pain relievers such as acetaminophen (Tylenol) and ibuprofen (Advil). Ask your doctor for medical advice before starting any of these medications. They may advise against taking nonsteroidal anti-inflammatory drugs (NSAIDs) during radiation therapy or chemotherapy.
Your doctor may prescribe stronger pain medications for moderate or severe pain, including opioid analgesics, such as hydrocodone, oxycodone, codeine, and morphine. These medications come in several forms, including oral pills or liquids, injections, and dermal (skin) patches.
In some cases, doctors may prescribe antidepressants, corticosteroids, or anticonvulsants (anti-seizure medications) to manage pain in leukemia.
Physical therapy and exercise can help manage pain with leukemia. Your doctor may use several pain management techniques, including massage, exercise therapy, and transcutaneous electrical nerve stimulation (TENS) therapy.
A TENS unit delivers low-voltage electrical impulses through pads (electrodes) placed on the skin to help block the perception of pain. One MyLeukemiaTeam member recommended this approach, writing, “I bought a TENS unit … works wonders on pain.”
Some people with leukemia find that complementary and alternative approaches — such as meditation, vitamins, chiropractic therapy, acupuncture, and Reiki — help manage their pain.
MyLeukemiaTeam members have recommended using heat or cold therapy to help relieve joint and bone pain with leukemia. As one member advised, “Get a heating pad — it’s working wonderfully for me and my leg pain.”
If you experience joint or bone pain, you may be able to make some adjustments to help alleviate discomfort. “Here’s what works for me,” one member with severe foot pain wrote. “I found a pair of Skechers shoes that seem to cushion my foot so that I don’t get foot pain when I walk. … I also get thick inner sole padding for the other shoes I wear. It helps.” They added that it is also helpful to stay off your feet as much as possible.
There is currently no cure for peripheral neuropathy. However, medications, exercise, and numbing creams or patches may help manage symptoms. Physical and occupational therapy may also be advised to help you build your strength and balance and deal with any changes in motor skills as a result of PN.
Navigating life with leukemia can be challenging. The good news is that you don’t have to go it alone.
MyLeukemiaTeam is the social network for people with leukemia and their loved ones. Here, members from across the world come together to ask questions, offer support and advice, and share stories of their everyday lives with leukemia.
Have you experienced pain with leukemia? How have you managed it? Share your thoughts and experiences in the comments below or by posting on MyLeukemiaTeam.