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Navigating life after treatment for acute myeloid leukemia

Managing the long-term effects on your

Navigating life after treatment for acute myeloid leukemia

Navigating life after treatment for acute myeloid leukemia

Understanding the long-term effects of acute myeloid leukemia treatment is essential for patients and their loved ones. This guide is designed to help you understand the effects on the body and mind, provide ways to cope, and help improve overall quality of life.

  • Chapter one

    What are long-term effects of treatment?

  • Chapter two

    Long-term effects of treatment on your body

  • Chapter three

    Long-term effects of treatment on your mind

  • Chapter four

    Ways to cope and further resources

Chapter one

What are long-term effects of treatment?

Let’s discover what long-term effects of treatment for acute myeloid leukemia are, how likely you are to experience them, and find out the truth behind some common misconceptions.

What are long-term effects of treatment?

Chapter one

What are long-term effects of treatment for acute myeloid leukemia?

How likely are you to experience long-term effects of treatment?

Long-term effects of acute myeloid leukemia treatment are health issues that can develop weeks, months, or years after the treatment is finished.

You may feel happy and relieved when your treatment ends, and it is natural to hope you will quickly feel “normal” again.

However, this feeling may not last, and it is important to take things gently and not rush yourself. It may take some time to heal physically and emotionally after treatment.

Chapter one

How likely are you to experience long-term effects of treatment?

Your likelihood of experiencing long-term effects from treatment for acute myeloid leukemia can be influenced by factors such as:

The type of treatment you received+
The duration and intensity of treatment+
Your sex+
Your age+
Your overall health+
  • The type of treatment you received
  • The duration and intensity of treatment
  • Your sex
  • Your age
  • Your overall health

Chapter one

Common misconceptions about the long-term effects of treatment

Once treatment ends, all side effects disappear.

TRUE

FALSE

There is no need for long-term monitoring if I feel healthy.

TRUE

FALSE

I will be able to return to my normal life.

TRUE

FALSE

Chapter two

Long-term effects of treatment on your body

Now that we understand what long-term effects of treatment for acute myeloid leukemia are, let’s look at how some of these can affect your body.

Long-term effects of treatment on your body

Chapter two

What long-term effects might you experience that affect your body?

Fertility issues and early menopause+
Secondary cancers+
Lung problems+
Fatigue+
Low resistance to infections+
Heart problems+
Thyroid problems+
Osteoporosis+
Diabetes+
Growth delays in children+
  • Fertility issues and early menopause
  • Secondary cancers
  • Lung problems
  • Fatigue
  • Low resistance to infections
  • Heart problems
  • Thyroid problems
  • Osteoporosis
  • Diabetes
  • Growth delays in children

Chapter three

Long-term effects of treatment on your mind

It is just as important to be aware of changes to your mind as well as your body, so now let’s look at symptoms you might experience that could affect your mental health and your cognitive skills.

Long-term effects of treatment on your mind

Chapter three

How might your mental health be affected?

Your mental health may be affected after treatment for acute myeloid leukemia, so it’s important to talk about your psychological symptoms with family and friends, and your healthcare provider, so they can help. The long-term psychological effects you might experience are:

Depression+
Anxiety+
Post-traumatic stress+
  • Depression
  • Anxiety
  • Post-traumatic stress

Chapter three

What long-term cognitive changes might I experience?

After completing your treatment, you may notice changes in your memory, way of thinking, and ability to concentrate. These changes are called mild cognitive impairment or cognitive dysfunction, often known as “chemo brain” or “chemo fog”. Common symptoms include:

What long-term cognitive changes might I experience?

Forgetting things you would usually remember

Struggling to find the right word or name for something

Having trouble following conversations

Difficulty focusing or concentrating on one task

Finding it hard to multitask

Having trouble with tasks that used to be easy, such as doing simple sums in your head

Feeling confused or disoriented

Experiencing mental cloudiness

Chapter four

Ways to cope and further resources

Now that you understand more about the impact treatments can have on your body and mind in the long term, let’s explore different ways to help cope with these effects.

Ways to cope and further resources

Chapter four

Coping with long-term effects of treatment

Talk to your healthcare team and discuss the challenges you are facing. They may recommend:

Coping with long-term effects of treatment

Cognitive training

Physical activity

Talking therapies

Mind–body training

Medications

Nutrition advice

Chapter four

Coping with long-term effects of treatment

Self-help tips to cope with cognitive changes

Use a reminder system, such as a calendar, daily planner, or mobile app, to keep track of your appointments

Always place important items, such as your car keys, phone, and planner, in the same place so you can easily find them

Try to limit distractions when focusing on tasks

Aim to get some movement or exercise every day, if possible

Allow yourself extra time to complete tasks, both personal and at work

Avoid trying to do multiple things at once

Avoid alcohol or substances that can affect your thinking

Ask for help when you need it

Be open and honest with your healthcare team, family, and friends about any challenges you are facing

Chapter four

Coping with long-term effects of treatment

Mental health

Keep a record of any symptoms you experience that are affecting your mental health. Communicate openly with your healthcare team, as well as with your family and loved ones.


Watch: Vanessa Marais, a clinical psychologist from South Africa, discusses ways to look after your mental health during different stages of acute myeloid leukemia.

Chapter four

Coping with long-term effects of treatment

Nutrition

A healthy diet can support your body to heal and maintain your strength.


Watch: Katie Walker, a dietitian at King’s College Hospital NHS Foundation Trust in the United Kingdom, discusses food recommendations for patients after a transplant to prevent long-term complications.

Chapter four

Coping with long-term effects of treatment

Physical activity

Engage in regular physical exercise and movement when approved by your healthcare team.


Watch: Erik Aerts, a specialist nurse from the University of Zurich in Switzerland, discusses the importance of physical exercise after treatment.

Chapter four

Coping with long-term effects of treatment

Other self-care measures

Avoid smoking and ensure you are getting enough sleep. Consider trying complementary therapies, such as yoga, breathing exercises, acupuncture, aromatherapy, massage, and meditation.


Watch: Charlotte Tottman, a clinical psychologist from Australia specializing in cancer-related distress, discusses how self-care measures can aid in managing the side effects of chemotherapy and in living with acute myeloid leukemia.

Chapter four

Coping with long-term effects of treatment

Peer support

Connect with others who have been through acute myeloid leukemia. You can watch personal stories from our Know AML ambassadors where they share how they cope with the long-term effects of their treatment.


Watch: Anna Mamwell, a Know AML ambassador from the United Kingdom, shares her journey of embracing and adapting to a ‘new normal’.

Chapter four

Coping with long-term effects of treatment

Talking therapies

It can help to talk to a counselor, therapist, or social worker. You can also connect with others who have been through the same experiences, for example via a cancer support group, one-on-one peer support, or an online virtual group.


Watch: Melanie Stachelski, a cancer counselor, psychotherapist, and acute myeloid leukemia survivor from the United States, discusses practices to help manage mental health.

End

We hope you found our guide helpful!

Please share with others who may find this resource useful too.

References

Blood Cancer UK. Blood cancer and infection. https://bloodcancer.org.uk/understanding-blood-cancer/treatment/infection-neutropenia-sepsis/blood-cancer-and-infection Accessed Mar 20, 2025.

Blood Cancer UK. Fertility problems. https://bloodcancer.org.uk/understanding-blood-cancer/treatment/side-effects/fertility-problems/#will-treatment-affect-my-fertility Accessed Mar 20, 2025.

Cancer Research UK. Coping with cognitive changes (chemo brain). https://www.cancerresearchuk.org/about-cancer/treatment/cancer-drugs/side-effects/chemo-brain/treatment-coping Accessed Mar 20, 2025.

Cancer Research UK. Long term side effects of treatment for acute myeloid leukaemia (AML). https://www.cancerresearchuk.org/about-cancer/acute-myeloid-leukaemia-aml/treating-aml/side-effects-aml/long-term-side-effects-treatment-for-aml Accessed Mar 20, 2025.

Leukaemia Foundation. The duration and intensity of treatment. https://www.leukaemia.org.au/blood-cancer/types-of-blood-cancer/leukaemia/acute-myeloid-leukaemia/treatment-side-effects Accessed Mar 20, 2025.

Leukemia & Lymphoma Society. Chemobrain. https://www.lls.org/treatment/managing-side-effects/chemobrain Accessed Mar 20, 2025.

Leukemia & Lymphoma Society. Long-term and late effects of treatment. https://www.lls.org/leukemia/acute-myeloid-leukemia/childhood-aml/long-term-and-late-effects-treatment Accessed Mar 20, 2025.

Storey S, et al. Curr Geriatr Rep. 2017;6(4):247-254.