Living With Chronic Myeloid Leukemia (CML)

Chronic myeloid leukemia, or CML, is a slow-growing cancer of the blood and bone marrow. Most people with CML take a daily pill. It is called a tyrosine kinase inhibitor. It targets the exact genetic change driving the disease. Day-to-day life with CML often centers on this one pill, taken consistently, and on regular lab tests that track how well it is working.

Most CML comes from a specific genetic change called the Philadelphia chromosome. It creates an abnormal protein. That protein pushes your bone marrow to make too many white blood cells. Tyrosine kinase inhibitors, or TKIs, block that abnormal protein directly. Common TKIs include imatinib, dasatinib, nilotinib, bosutinib, and asciminib. The drug targets the exact cause. NCI reports that with any of these drugs, more than 90 out of 100 people with chronic-phase CML are alive 10 years later.

The American Cancer Society says skipping or adjusting doses can affect the way TKI treatment works, so take your pill exactly as prescribed. Some other health decisions can interfere with your TKI too. For example, bariatric surgery can lower how well your body absorbs some of these pills. That can make them work less well. Tell every doctor you see that you take a TKI. This matters especially before any new surgery or medicine, so nothing interferes with your treatment by accident.

Doctors track CML with a specific blood test. It measures the amount of the abnormal Philadelphia chromosome gene, called BCR-ABL, in your blood. The American Cancer Society calls it a very sensitive test that can find small amounts of BCR-ABL even when other tests cannot. The level should go down over time if treatment is working. Your results are usually described as your "molecular response." Decisions about continuing or adjusting treatment are based on these results over time. NCI says it is unclear whether TKI treatment can be stopped for people with a deep response, so do not stop on your own.

CML itself can lower your healthy blood cell counts. Abnormal cells crowd out the normal ones. This can mean a higher risk of infection, anemia, or bleeding, especially before treatment brings your counts under control. Your team checks your blood counts often, especially early in treatment.

• Call your leukemia team immediately, at any hour, if you have a fever of 100.4°F (38°C) or higher, the threshold CDC uses, and your blood counts have been low or you have recently started or changed your TKI. A fever when white cells are low is an emergency, not a message left for the morning. If you cannot get hold of them quickly, go to an emergency department and tell the staff you are being treated for leukemia so you are assessed quickly.
• Call 911 or go to an emergency department if you become short of breath at rest, bleeding will not stop, or you feel faint, confused or unusually drowsy.
• Call your care team right away if you notice unexplained bruising, small dark-red spots on the skin, or symptoms that feel like your CML did before treatment started.
• Call your care team within a day or two if you have missed several doses of your pill in a row, so they can help you get back on track.

TKIs can cause real side effects: nausea, diarrhea, muscle pain, fatigue, fluid buildup, or skin rash, depending on which drug you take. Some people quietly cut back their dose on their own to manage side effects, without telling their team. This can affect how well the drug controls your CML. Tell your team about side effects instead, so they can adjust your dose properly, switch you to a different TKI, or add supportive medicine, rather than you managing it alone.

Since you may take this medicine for years, building it into a consistent daily routine matters. Many people find it helps to take it at the same time each day, paired with an existing habit like breakfast or brushing your teeth. Set a phone reminder if that helps. If cost or access to your pill becomes a problem, tell your team early.

• What does my BCR-ABL result mean, and how does it compare with my last test?
• What should I do if I miss a dose of my TKI?
• Could any new medicine, supplement, food, or planned surgery interact with my treatment? The American Cancer Society warns that some foods, such as grapefruit, star fruit and pomegranate, can interact with TKIs.

• National Cancer Institute — Chronic Myeloid Leukemia Treatment (PDQ).
• National Cancer Institute — Infections in People with Cancer.
• National Cancer Institute — Chronic Myeloid Leukemia Treatment (PDQ), Health Professional Version.
• American Cancer Society — Targeted Therapy Drugs for CML.
• American Cancer Society — Tests for CML.
• CDC — Watch Out for Fever.