Living as a Chronic Myeloid Leukemia Survivor

For a few people with chronic myeloid leukemia (CML) , treatment can destroy the cancer. For many people, treatment with a targeted therapy drug can control the cancer for many years. Still, it’s hard not to worry about cancer coming back if treatment stops working.

Life after cancer means returning to some familiar things and also making some new choices.

Follow-up care

For most people with CML, treatment doesn't end. They stay on a tyrosine kinase inhibitor (TKI) like imatinib indefinitely. Often, the TKIs keep the CML in check, but they don't seem to cure this disease. Your doctor will continue to monitor how the CML is responding to treatment. Being on long-term treatment and managing cancer as a chronic disease can be difficult and very stressful. It has its own type of uncertainty.

Even if there are no signs of the disease, your doctors will still want to watch you closely. It's very important to go to all of your follow-up appointments. During these visits, your doctors will ask questions about any problems you're having and do exams and lab tests to look for signs of CML and treatment side effects. Almost any cancer treatment can have side effects. This is the time for you to talk to your cancer care team about any changes or problems you notice and any questions or concerns you have.

Ask your doctor for a survivorship care plan

Talk with your doctor about developing a survivorship care plan for you. This plan might include: 

• A suggested schedule for follow-up exams and tests
• A schedule for other tests you might need in the future, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from your cancer or its treatment
• A list of possible side effects from your treatment, including what to watch for and when you should contact your doctor
• Diet and physical activity suggestions
• Reminders to keep your appointments with your primary care provider (PCP), who will monitor your general health care 

Keeping health insurance and copies of your medical records

It’s very important to keep health insurance. Tests and doctor visits cost a lot, and the drugs cost a lot, too.

At some point, you might find yourself seeing a new doctor who doesn’t know about your medical history. It’s important to keep copies of your medical records to give your new doctor the details of your diagnosis and treatment. Learn more in Keeping Copies of Important Medical Records.

Can I lower my risk of chronic myeloid leukemia progressing or coming back?

If you have CML, you probably want to know if there are things you can do that might lower your risk of the cancer growing or progressing, such as exercising, eating a certain type of diet, or taking nutritional supplements. Unfortunately, it’s not yet clear if there are things you can do that will help.

Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure. However, we do know that these types of changes can have positive effects on your health.

We also know that not taking the TKI drugs as prescribed can have negative effects. Studies have shown that missing doses or not taking the right dose leads to worse overall outcomes. Still, be honest with your health care team. Let them know if you're having any problems with your medicine, including problems paying for it.

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of CML progressing. This doesn’t mean that no supplements will help, but it’s important to know that none have been proven to do so.

Dietary supplements are not regulated like medicines in the United States – they do not have to be proven effective (or even safe) before being sold, although there are limits on what they’re allowed to claim they can do. If you’re thinking about taking any type of nutritional supplement, talk to your health care team. They can help you decide which ones you can use safely while avoiding those that might be harmful. They can also tell you if there could be any interactions with your TKI treatment.

If the cancer comes back

If the cancer does progress or relapse at some point, your treatment options will depend on what treatments you’ve had before and your overall health.

Could I get a second cancer after treatment?

People who have CML can still get other cancers. In fact, people with CML are at higher risk for getting some other types of cancer. Learn more in Second Cancers After Chronic Myeloid Leukemia.

Getting emotional support

Some amount of feeling depressed, anxious, or worried is normal when cancer is a part of your life. Some people are affected more than others. But everyone can benefit from help and support from other people, whether friends and family, religious groups, support groups, professional counselors, or others. Learn more in Life After Cancer.