Living with acute myeloid leukemia

Acute myeloid leukemia (AML) is a blood cancer marked by the out-of-control growth of immature blood cells known as blast cells or blasts. Treatment for AML is often aggressive and can include several different phases.

Living with AML can bring new considerations and challenges. If you or a loved one has been diagnosed with AML, it may be helpful to understand what to expect in your day-to-day life with AML.

What AML daily life can look like

Living with acute myeloid leukemia can be stressful and difficult. Along with the symptoms, AML treatment side effects can affect your energy levels and daily life. You may need more support than you’re used to, and you may need to adjust your routines to accommodate reduced energy levels, lowered immunity (ability to fight off infections), or other symptoms. In addition, AML treatments often require frequent doctors’ appointments or hospitalization.

Preparing for treatment

Preparing for AML treatment often involves going to many doctor appointments and getting a lot of complicated information very quickly. You may want to bring a family member or close friend with you to your appointments. If you’re having trouble understanding the information from your doctor, make sure to ask questions. Some medical centers also have patient educators who can help you understand your diagnosis and any treatment decisions you need to make.

Before beginning treatment, you may want to make arrangements for support during your treatment and recovery. These can include:

• letting your employer know about your diagnosis and arranging for time off work
• arranging logistical support, such as someone to drive you to the hospital
• finding someone to stay with you during treatment if you live alone
• taking advantage of any support services your medical center may offer

Reducing infection risk

Several medications used to treat AML kill both cancer cells and your normal blood cells, including white blood cells, which means AML treatment can drastically lower your immune defenses. Additionally, AML itself can also decrease the number of healthy white blood cells, further weakening your immune system. Your doctor may recommend taking special precautions for AML infection prevention during your treatments, including:

• making sure you’re up to date on vaccines before starting treatment
• taking medications to prevent infections if your doctor recommends it
• washing your hands often and thoroughly
• avoiding crowded areas
• wearing a mask around other people
• maintaining a clean home environment
• taking extra care with food safety

Managing bruising and bleeding risk

Both AML itself and the treatments used to fight it can reduce the number of platelets, cell fragments that help your blood clot, in your blood to very low levels (thrombocytopenia), which may make you more prone to bleeding or bruising.

When your platelets are low, you may want to take extra precautions, such as:

• using a very soft toothbrush
• being very careful with knives or sharp objects
• using an electric shaver instead of a razor
• avoiding heavy lifting, contact sports, and activities with a high risk of falling or injuries
• using lotion or lip balm to prevent chapped lips and dry skin

Your doctor may recommend platelet transfusions or medication to help maintain your platelets at a safe level. If you take aspirin or other medications that affect blood clotting, let your doctor know before beginning treatment.

Uncontrolled bleeding can be dangerous. Let your treatment team know right away if you:

• experience bleeding that doesn’t stop in a few minutes
• experience bleeding from your mouth, nose, or genitals
• have blood in your vomit, urine, or stool
• have bad headaches, vision changes, or sudden confusion, which can be symptoms of bleeding in the brain

Coping with fatigue and weakness

AML and cancer treatments can make you feel very tired and weak. It may become difficult to do the everyday activities and tasks you are accustomed to. When this happens, it’s important to not be too hard on yourself and take the time you need to recharge. The following strategies may help you better cope with AML fatigue:

• Get plenty of rest.
• Take time off from work or school, or ask about options for a reduced schedule.
• Ask for help from family or friends if you’re having difficulty managing everyday tasks.
• Try to maintain a healthy diet.
• Exercise if your doctor says it’s safe to do so.
• Talk with your doctor about options for supportive care to help manage fatigue.
• Get mental and emotional support.

Eating and drinking during AML treatment

Side effects from AML treatments, including nausea, vomiting, diarrhea, dry mouth or mouth sores, changes in your sense of taste, and loss of appetite, can make eating and drinking unpleasant or difficult. However, poor nutrition can make fatigue and weakness worse and make it more difficult to tolerate treatment. If you’re having trouble maintaining good AML nutrition, you may want to try:

• eating smaller, more frequent meals
• drinking small amounts throughout the day
• focusing on foods you enjoy eating or that are easy to eat
• drinking nutritional supplement shakes
• talking with your doctor about anti-nausea medications and other supportive care options
• meeting with a dietitian or nutritionist who specializes in nutrition during cancer treatment

If you’re having trouble maintaining your weight or staying nourished during treatment, your care team may recommend enteral nutrition (tube feeding) or intravenous nutrition.

Staying active and exercising safely

Although your energy may be low, staying active and exercising when you are able can help you maintain your strength and quality of life during AML treatment. However, depending on your blood counts and treatment phase, you may need to take extra precautions or stick to more gentle forms of exercise. Before starting an exercise program, talk to your doctor.

Sleep, anxiety, and emotional well-being

Having AML emotional support during your treatment journey is very important. During this time, your family and friends can be a good source of providing that support. Also, consider talking with your care team about options for managing your mental and emotional health, especially if you’re experiencing severe anxiety, depression, difficulty sleeping, or other mental health symptoms. Seeing a mental health professional, taking medication, and getting involved with patient support groups can all help you maintain your emotional well-being during AML treatment.

Relationships, intimacy, and fertility concerns

AML treatments can affect fertility, so if you’re thinking about having children, talk with your doctor about options for preserving your fertility before beginning treatment. AML symptoms and treatment side effects may also affect your relationships and cause issues with intimacy. If you have concerns, talk with your doctor or a mental health professional.

How family members and caregivers can help

AML is a serious illness, and you may need more help than you’re used to. Some patients say that support from friends and family makes a huge difference in coping with AML. Some ways your loved ones may be able to help include:

• coming to medical appointments with you as a support person
• helping manage your medications or keeping track of appointments
• driving you to and from appointments or the hospital
• helping with housekeeping, cooking, or other daily tasks
• providing emotional support

Life after AML treatment

Life after AML treatment may look a little different, but as treatments improve, many people live for years after diagnosis. It’s important to stay hopeful and engaged with your loved ones, participate in activities you enjoy, and be patient with yourself as you recover.

According to one recent study, AML survivors have a comparable quality of life to people without AML. However, some people do experience ongoing issues with fatigue, long-term side effects from treatment, and mental health difficulties. Talk with your AML care team about strategies for minimizing these issues and any long-term considerations that may be relevant for you.

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