​Leukemia causes different symptoms in different people, depending on age, type of leukemia, and other factors. Pain is a common symptom, reported by more than 1,500 members of MyLeukemiaTeam.

Depending on how this blood cancer affects your body and what treatments you take, you might feel different types of pain in different areas. Here, we’ll consider where and how pain might be felt with leukemia, potential causes of this pain, and how pain may be managed at home and with the help of your cancer care team.

Common Locations of Leukemia Pain

Leukemia is a type of blood cancer in which abnormal white blood cells develop and grow too quickly in the bone marrow. Leukemia can cause pain 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 depending on the growth of these abnormal cells and in which parts of the body they collect.

Bone Pain and Leukemia

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. “I’ve had pain in my shoulders, both arms, and thigh bones,” one MyLeukemiaTeam member wrote.

Bone pain in leukemia usually results from 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.

Joint Pain and Leukemia

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 member shared that they were having joint pain and fatigue, while another wrote, “My knee is hurting really bad. … This pain is in addition to my other bone and joint pain.”

Abdominal Pain and Leukemia

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 loss of appetite and weight loss.

Chest Pain and Leukemia

In people with T-cell acute lymphoblastic leukemia, cancer cells often cluster around the thymus. This immune system organ produces defensive T cells and is located in the chest. The buildup of leukemic cells around the thymus can cause chest pain and shortness of breath.

Peripheral Neuropathy and Leukemia

Peripheral neuropathy refers to conditions that occur when nerves in the peripheral nervous system are damaged. These nerves are responsible for transmitting messages from the brain and spinal cord throughout the body. Treatments for leukemia, as well as leukemia itself, can sometimes lead to peripheral neuropathy.

Members of MyLeukemiaTeam have reported experiencing neuropathy with leukemia. “It’s painful and hurts all the time,” one member wrote. Another described the sensation as “walking on rocks with knots on the bottom of your feet.” A third member likened the sensation to having rubber bands tied around their feet.

What Does Pain in Leukemia Feel Like?

MyLeukemiaTeam members describe pain with leukemia in many ways. Some feel it as a sharp pain, while others say it’s throbbing or dull. 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,” a member said. “It comes and goes. Not sure why, but I’m thankful for that.”

Others have reported consistent pain: “My husband is in pain 24/7,” one member shared.

Pain may also be accompanied by other uncomfortable symptoms. Several members have described having chills alongside pain, while others shared that they’ve also had rashes and night sweats. “Very nauseous today,” wrote one member, “and having bone pain.”

What Causes Pain in Leukemia?

Apart from the rapid growth of abnormal white blood cells, certain treatments for leukemia can cause pain as a side effect. Additionally, tests such as bone marrow biopsy and aspiration can also lead to discomfort or pain.

Chemotherapy and Radiation Therapy Pain

Both chemotherapy and radiation therapy can lead to pain and discomfort. Aside from causing peripheral neuropathy, the treatments may result in mouth sores, scarring, and radiation burns. Certain chemotherapy drugs for leukemia can damage the nerves that control sensation and even mobility. Vincristine sulfate liposome (Marqibo) and vinblastine have been known to cause neuropathy in people with leukemia.

Certain Medications

Joint and bone pain is also a common side effect of some targeted therapy medications for leukemia, including chemotherapy, radiation, and surgery. Some MyLeukemiaTeam members attribute their joint pain to side effects of ibrutinib (Imbruvica). One wrote, “I also suffer from foot pain. Like other joint pain (elbows, knees, hands), it comes and goes. I’ve also had the pain so severe that I could hardly walk.”

Another member taking ibrutinib wrote that they were “having severe lower back pain.”

Additionally, chimeric antigen receptor T-cell (CAR-T) therapies are emerging as a treatment for leukemia. CAR-T therapy uses a person’s own immune cells to fight cancer. Some approved CAR-T treatments, like tisagenlecleucel (Kymriah), have been linked with muscle and joint pain.

Bone Marrow Biopsy and Aspiration Pain

Bone marrow biopsy and bone marrow aspiration are procedures that may be used to confirm a leukemia diagnosis. These tests involve using a needle to remove samples of bone marrow (spongy tissue inside bone). A person may experience discomfort or bone pain at the site of the procedure for several days after it was done.

How Is Pain With Leukemia Managed?

New or worsening pain doesn’t necessarily mean your leukemia is becoming worse, but it’s still important to let your oncologist about it. Talk to a health care professional to determine the best way of managing any discomfort, whether it’s with medications, physical therapy, or other management techniques. Your health care team will recommend an approach based on the type and cause of your pain.

Medication

An oncology specialist may prescribe or recommend medications to help relieve pain associated with leukemia or cancer treatment.

Over-the-Counter Pain Relievers

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.

Opioid Analgesics

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 skin patches.

Other Medications

In some cases, doctors may prescribe antidepressants, corticosteroids, or anticonvulsants (anti-seizure medications) to manage neuropathic pain in leukemia.

Physical Therapy and Exercise

Physical therapy and exercise can help manage some 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: “I bought a TENS unit. … Works wonders on pain.”

Complementary and Alternative Medicine

Some people with leukemia find that complementary and alternative approaches help manage their pain, including:

• Meditation
• Nutritional supplements
• Chiropractic therapy
• Acupuncture
• Cannabidiol (CBD)
• Reiki (a form of energy healing)

Heat or Cold Therapy

MyLeukemiaTeam members have recommended using heat or cold therapy to help relieve joint and bone pain with leukemia. “Get a heating pad,” one member advised. “It’s working wonderfully for me and my leg pain.”

Comfort Stratgies

If you experience joint or bone pain, making a few adjustments may 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’s also helpful to stay off your feet as much as possible.

Peripheral Neuropathy Management

There’s 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 manage any changes in motor skills as a result of peripheral neuropathy.

Talk With Others Who Understand

MyLeukemiaTeam is the social network for people with leukemia and their loved ones. More than 19,000 members come together to ask questions, give advice, and share stories with others who understand life with leukemia.

Where have you experienced pain with leukemia? How have you managed it? Share your experiences and tips in the comments below or by posting on your Activities page.

​