Follow-up after treatment for chronic myeloid leukemia

Follow-up care for chronic myeloid leukemia (CML) lets your healthcare team keep track of your health. This important part of cancer care is often shared among the cancer specialists and your family doctor.

Because you will be on tyrosine kinase inhibitors (TKIs) for as long as they continue to control CML, you will have follow-up care for the rest of your life. Your healthcare team will regularly check the number of cells with the BCR-ABL gene in the blood and bone marrow to make sure TKI treatment is working. They will also help you manage or recover from side effects of treatment.

People diagnosed with CML have a higher risk of developing another cancer, including gastrointestinal cancers and cancers of the nose and throat. This is caused by having CML, and not by treatment with TKIs. Your healthcare team will monitor you carefully for a second cancer.

Follow-up care may not seem that important to you, especially if your treatment was long or very hard. You may find the idea of follow-up stressful because it reminds you of your cancer experience or because you are worried about what a test might reveal. Talk to your healthcare team about how you feel and about why follow-up matters. Your healthcare team is there to help.

Don't wait until your next scheduled appointment to report any new symptoms or symptoms that don't go away. Tell your healthcare team if you have:

• fatigue
• a general feeling of discomfort or illness (malaise)
• loss of appetite
• weight loss
• bruising or bleeding
• frequent infections
• swelling or discomfort in your abdomen

You will need regular follow-up visits with your healthcare team for many years after treatment even if there are no signs of CML.

If you are on targeted therapy with TKIs, follow-up visits are usually scheduled:

• every 3 months for 2 years from the start of treatment
• every 3 to 6 months for the rest of your life once there is a molecular response

If you have had a stem cell transplant, you will have frequent checkups and tests until the new bone marrow is working properly and there are no serious problems. For the first 3 months after leaving the hospital, you will be checked at least once a week or every 2 weeks until your blood cell counts return to normal. Find out more about what happens after a stem cell transplant.

During a follow-up visit, your healthcare team will talk to you about the TKIs you are prescribed to make sure you are taking them correctly. They will also follow up with you on your regular testing to monitor the disease and make sure the TKIs are working.

Tell your healthcare team about any vitamins, supplements or drugs you are taking, including natural health products and cannabis or other recreational drugs. These can affect how well TKIs can treat CML, so it's important to tell them about anything you are taking.

Your doctor may do a physical exam during your follow-up visits. This can include:

• measuring vital signs for fever, shortness of breath and rapid heartbeat
• checking the skin for bruising and paleness
• feeling areas of the neck, underarm and groin for any swollen (enlarged) lymph nodes
• looking in the mouth for infection, bleeding or swollen gums
• feeling the abdomen for enlarged organs
• checking the skeleton for tenderness or pain

The main follow-up test for CML is a polymerase chain reaction (PCR) test. It is used to monitor the response to TKI treatment and to look for any changes in the cells other than the BCR-ABL gene (called additional chromosome abnormalities, or ACAs).

If you have symptoms, you may also have:

• a complete blood count (CBC) to check for abnormal blood cell counts
• blood chemistry tests to show how well certain organs are working and find problems caused by the spread of the leukemia cells
• imaging tests, such as a chest x-ray, a CT scan, an MRI or an ultrasound, to check the spleen, liver or lymph nodes
• a bone marrow aspiration and biopsy to follow up after the results of blood tests or if new symptoms develop

If CML progresses or another cancer is found, your healthcare team will assess you to determine the best treatment options.

Find out more about tests and procedures used during follow-up for CML.

The following are questions that you can ask your healthcare team about follow-up after treatment for cancer. Choose the questions that fit your situation and add questions of your own. You may find it helpful to take the list to the next appointment and to write down the answers.

• What is the schedule for follow-up visits?
• How often is follow-up scheduled with the cancer specialist?
• Who is responsible for follow-up visits?
• What will happen at a follow-up visit?
• What tests are done on a regular basis? How often are they done?
• Are there any symptoms that should be reported right away? Who do I call?
• Who can help me with the long-term side effects of treatment?