Acute myeloid leukaemia (AML) prognosis

• Your hospital team are the best people to ask about your prognosis.
• Genetic variations of the AML are linked to different outcomes.
• Not everyone has the same aims for their treatment.
• Being fit and well could give you a better chance of successful treatment.
• Survival statistics cannot say what will happen to you.

It’s best to ask your hospital team about your prognosis if you want to know about it, because they know your individual situation.

Your doctor can tell you the aim of your treatment when you are diagnosed, and any time during your treatment:

• For many people, the aim is to get rid of the leukaemia completely. This requires strong treatment and takes some time, but for many people the treatment is successful, and they are cured.
• For other people, the treatment doesn’t manage to completely get rid of the leukaemia. The aim of treatment might then become to control the AML and your symptoms for as long as possible.
• Some people may not be able to have treatment that cures the AML, because they are older, they have other serious underlying health conditions or are generally frail.

If you are not clear what the aim of your treatment is, ask your doctor or clinical nurse specialist (CNS). You should have a named CNS.

Whatever stage you’re at, we are here to support you through it – contact our Support Service if you have any questions or worries about prognosis.

Many different things can affect your prognosis - your age, your general fitness and the specific type of AML you have, for example. Putting these things together to give you an idea of your individual prognosis is very complicated. So that’s something only your doctor can do.

The information your healthcare team gives you will still be quite general, even after taking everything into account. Though it will be based on what’s happened to people like you, people can still have quite different experiences.

Your prognosis can also change as you go through treatment. For example, some people who are given a poor prognosis at first might do well on treatment and their outlook could get better.

People often want to know about survival rates for acute myeloid leukaemia. Survival rates are statistics that show how many people in a large group survive AML for a certain period of time. They often tell you how many people survive at least 5 years after diagnosis. This is a common way of measuring cancer survival. It does not mean these people only survive 5 years – many people live for much longer than this.

Survival statistics are only averages. Though they can give a rough picture of what happens to large groups of people with AML, they cannot say exactly what will happen to you, as nobody can know that. This is why so many people with AML find it unhelpful to focus on survival rates.

You might find it difficult to understand or think about prognosis. Please speak to your hospital team or CNS, and remember, our Support Service is here to talk you through it, offer support, or simply listen.

Below we explain the main things that affect your prognosis.

Your level of general health and fitness when you are diagnosed with AML does affect prognosis. If you’re generally quite well, then you’re more likely to be able to have high-intensity treatment, which gives the best chance of a cure. If you are older, frailer, or have other health conditions, you might not be able to have high-intensity treatment. You might need to have lower intensity treatment instead.

Younger people are often fitter, though not always. So, they’re usually more able to cope with high-intensity treatments, which leads to better outcomes. But this does not mean that someone older cannot have a good outcome. It depends on your personal level of fitness and how you respond to treatment.

Supportive services like physiotherapy and occupational therapy can help you manage your fitness during any type of treatment. Some services are available in the community. Ask your hospital team to refer you.

There are many different genetic changes, otherwise known as genetic mutations, that can happen inside AML cells. Some of these are linked with less good outcomes, and others are linked with better outcomes.

Remember, these are not genetic changes that are inherited or passed on to children. They are mutations that happen randomly in your blood cells during your lifetime, and cause AML. There can sometimes be a link between AML and an inherited genetic change, but this is rare.

While these genetic changes help to determine a prognosis, it’s as part of a mix of things. So, an individual mutation alone cannot determine prognosis.

When a genetic change is linked to a less good prognosis, this is mainly because of the increased risk of the AML coming back in the future. This is called relapse.

Knowing the genetic change helps guide treatment decisions, as there are treatments to reduce the risk of relapse. Also, there are now some treatments that either target particular mutations or are more effective in people who carry them.

Below we explain some of the more common genetic changes, but there are many more.

If you’ve been told you have a genetic change or mutation, remember:

• It’s very common to have one or more genetic mutations in AML.
• Your prognosis depends on many other factors too, not just on the genetic changes
• The genetics of AML is complicated, so ask your doctor if you want to understand more. They know the full picture of your personal situation.

Knowing about the genetic mutations means that your treatment can be more tailored to your specific situation. Many people are told they have a high-risk genetic mutation and continue to have successful treatment and reach remission.

Some genetic changes are also helpful markers that your doctors can monitor to see how well you are responding to treatment and whether your AML is starting to relapse. In this way, they can provide early warning flags and help guide your treatment.

One way that doctors assess your prognosis is using the ELN genetic risk groups. These come from the European LeukaemiaNet (ELN). The genetic mutations that you have will put you into one of three ELN risk groups:

• Favourable risk – This means you have a good chance of being cured and have a lower risk of the AML coming back (relapse). People with favourable risk often will not need a stem cell transplant, although some people might.
• Intermediate risk – This means your genetic mutations do not put you in the adverse risk group or the favourable risk group. People with intermediate risk may or may not need a stem cell transplant.
• Adverse risk – This means you have a higher risk of the AML coming back. People with adverse risk will often be recommended to have a stem cell transplant if suitable.

These ELN risk groups are only based on the genetic mutations in your AML cells. But your overall prognosis and treatment plan will be based on several other factors too. These are also explained on this page.

While the ELN risk groups can help your doctors understand your level of risk, they’ll base their treatment decisions on the wider picture of your personal situation, and your own wishes.

Being able to detect a genetic change can be important after treatment too:

• If tests show your genetic mutation is below a certain level, this can mean the treatment is working well.
• If tests show the mutation is at a higher level, it might mean that you need more treatment.

We have more information about measuring your response to treatment.

Secondary AML is AML that has developed from a medical treatment or blood disorder you’ve had in the past.

Secondary AML is usually linked with a worse prognosis than AML that developed on its own. But there are specific drug treatments for secondary AML that have been found to be effective at improving outcomes.

As with every other point on this page, your prognosis does depend on many other factors too, like which genetic mutations you have, and your general level of fitness for treatment.

We explain the different types of secondary AML below.

Your long-term prognosis is likely to be better if:

• your first AML treatments gets you into remission
• you get this remission quickly.

There are several things your doctors will be looking at to monitor the success of your treatment. These include what we call “measurable residual disease (MRD)”. If your MRD test results are good, this suggests a better long-term prognosis.

We have more information about MRD and measuring your response to treatment.

It’s harder to treat the AML if:

• your treatment does not work. This is called refractory AML
• your treatment works at first but then the AML comes back. This is called relapse.

This means that your prognosis will be less good. But there are still options for treatment. Some people do still manage to get rid of the AML with more treatment.

We have more information about treatments for refractory or relapsed AML.

Over the years, treatment for AML has improved thanks to clinical trials finding new and better drugs.

Many of these advances have come from knowing about the different genetic mutations that happen in AML and being able to design treatments that target these.

You can ask about any research studies being carried out at your hospital or nearby hospitals.

Find out more about the future of AML treatment and current research.

If you want to know about your individual prognosis, your healthcare team are the best people to ask. They know you and your individual situation.

We can help you think of what questions to ask when talking to your healthcare team about prognosis – contact us for help preparing for your conversation.

If you hear or read something about your prognosis that you do not understand or that worries you, contact us and we can talk it through.