ON THIS PAGE: You will read about why follow-up care is important. Use the menu to see other pages.
For many people with CML, targeted therapy is an ongoing cancer treatment. Any decision to stop taking these drugs should be made by a patient and doctor together, based on how well the drug continues to work and the side effects.
Even if after stopping treatment or a successful stem cell/bone marrow transplant, care for people diagnosed with CML does not end. Your health care team will continue to check to make sure the leukemia has not returned, manage any side effects, and monitor your overall health. This is called follow-up care.
Your follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your recovery in the months and years ahead. Learn more about the importance of follow-up care.
Watching for resistant CML
One goal of follow-up care is to check for CML that has come back or worsened. CML comes back or worsens because small areas of leukemia cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms. During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of developing resistant CML. Your doctor will ask specific questions about your health. Some people may have blood tests or imaging tests done as part of regular follow-up care, but testing recommendations depend on several factors including the type and phase of leukemia originally diagnosed and the types of treatment given.
The anticipation before having a follow-up test or waiting for test results can add stress to you or a family member. This is sometimes called “scan-xiety.” Learn more about how to cope with this type of stress.
Managing long-term and late side effects
Most people expect to experience side effects when receiving treatment. However, it is often surprising to survivors that some side effects may linger beyond the treatment period. These are called long-term side effects. Other side effects called late effects may develop months or even years afterwards. Long-term and late effects can include both physical and emotional changes.
Talk with your doctor about your risk of developing such side effects based on the type of leukemia, your individual treatment plan, and your overall health. If you had a treatment known to cause specific late effects, you may have certain physical examinations, scans, or blood tests to help find and manage them.
Keeping personal health records
You and your doctor should work together to develop a personalized follow-up care plan. Be sure to discuss any concerns you have about your future physical or emotional health. ASCO offers forms to help keep track of the treatment you received and develop a survivorship care plan.
This is also a good time to decide who will lead your follow-up care. Some survivors continue to see their hematologist or oncologist, while others transition back to the care of their family doctor or another health care professional. This decision depends on several factors, including the type and phase of leukemia, side effects, health insurance rules, and your personal preferences.
If a doctor who was not directly involved in your care for CML will lead your follow-up care, be sure to share your treatment summary and survivorship care plan forms with him or her and with all future health care providers. Details about your treatment are very valuable to the health care professionals who will care for you throughout your lifetime. It may also be important to have these records available for those who care for you in case of an emergency.
The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a CML diagnosis. Use the menu to choose a different section to read in this guide.