Living as an Acute Myeloid Leukemia (AML) Survivor

For some people with acute myeloid leukemia (AML), treatment can get rid of all of the leukemia cells. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about the leukemia coming back. (When leukemia comes back after treatment, it is called a relapse or recurrence.) This is a very common concern in people who have had leukemia.

For other people, the leukemia may never go away completely. Some people may get regular treatments with chemotherapy or other therapies to try to help keep the leukemia under control and help relieve symptoms from it. Learning to live with leukemia that doesn't go away can be difficult and very stressful. It has its own type of uncertainty. Managing Cancer as a Chronic Illness talks more about this.

Follow-up care

Whether you have completed treatment or are still being treated, your doctors will want to watch you closely.

Exams and tests

Even after treatment ends, you'll still need frequent follow-up exams – probably every month or so at first, and then less often, for at least several years. It’s very important to go to all of your follow-up appointments. During these visits, your doctor will ask about any symptoms, examine you, and may get blood tests or bone marrow exams. Follow-up is needed to check for leukemia recurrence, as well as possible side effects of certain treatments.

Almost any cancer treatment can have side effects. Some may last for only a short time, but others can last the rest of your life. Tell your cancer care team about any changes or problems you notice and about any concerns you have.

If AML does come back, it is usually while a person is still being treated or shortly after they have finished treatment. If this happens, treatment options would be as described in If Acute Myeloid Leukemia Doesn’t Respond or Comes Back After Treatment.. It’s unusual for AML to come back if there are still no signs of the leukemia within a few years after treatment. This can happen, however, especially with the acute promyelocytic (APL) subtype of AML.

Should your leukemia come back, see Understanding Recurrence for information on how to manage and cope with this phase of your treatment.

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 tumor or its treatment
• A list of possible late- or long-term side effects from your treatment, including what to watch for and when you should contact your doctor
• Diet and physical activity suggestions

Keeping health insurance and copies of your medical records

Even after treatment, it’s very important to have health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.

At some point after your treatment, 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 AML progressing or coming back?

If you have (or had) AML, you probably want to know if there are things you can do to reduce your risk of the leukemia progressing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements.  At this time, not enough is known about AML to say for sure if there are things you can do that will help. 

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. But we do know that these types of changes can have positive effects on your health that can extend beyond your risk of AML or other cancers.

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of AML progressing or coming back. 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 aren’t 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.

Getting emotional support

Some amount of feeling depressed, anxious, or worried is normal when leukemia is 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 Coping With Cancer.