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Relapse and refractory AML treatments

We're here for you if you want to talk

0808 2080 888

[email protected]

If your treatment isn’t working, or if AML comes back later, there are other treatment options available.

How you might feel

Hearing that you have relapsed, or that treatment hasn't worked, is understandably very difficult. You might feel shocked, scared, or devasted. If it's someone you love who has AML, you might feel powerless.

There are many treatments available for refractory and relapsed AML however, which we explain below.

If you are facing refractory or relapsed AML, we are here for you, for emotional support or to talk about how you're coping. Contact our Support Service and tell us about your situation.

What is refractory AML?

If your first treatment for AML doesn’t get you into remission, this is called refractory AML.

What is relapse?

If you do get into remission, but the AML comes back at a later time, this is called a relapse.

Most relapses happen in the first two years after finishing induction treatment. After this, they become less common as time passes, and after five years the chance of relapse is extremely small.

What are the treatments for relapsed or refractory AML?

Refractory or relapsed AML is harder to treat, but there are still options and some people can still be cured.

Your doctor will do some more tests to check for any new genetic mutations (changes) that have developed in your AML cells. This will help them plan the best treatment, as different drugs work against different genetic mutations.

The treatment you have will also depend on whether you are fit and well enough to cope with intensive chemotherapy. There are both intensive and non-intensive chemotherapy options, as well as an increasing number of targeted therapies for particular subtypes of AML. All of these are explained below.

If your first remission lasted a long time, the chance of getting another remission is higher.

Intensive options

In general, people who are able to have intensive chemotherapy and a stem cell transplant have a higher chance of being cured from AML. Below we explain the different intensive treatments for relapsed or refractory AML.

If your general health is good enough and there’s a reasonable chance of achieving remission again, you may be offered salvage chemotherapy. This is similar to induction chemotherapy. A strong combination called FLAG-Ida is often used. See our page about intensive treatments including FLAG-Ida.

The chance of getting a remission again depends on how long your first remission lasted before relapse, and the genetic profile of the AML.

If you achieve remission with salvage chemotherapy, you may be able to have a stem cell transplant. This offers the best chance of a long-term cure, although unfortunately relapses after transplant can still happen.

A stem cell transplant is an intensive treatment that can have serious complications, so it’s important to discuss the risks and benefits in detail with a doctor who specialises in stem cell transplants.

Even if you've had a transplant before, you may be able to have another one, although this would need even more careful consideration.

Occasionally, it's possible to have targeted treatment (rather than salvage chemotherapy) to prepare for a stem cell transplant. For example, some people with the FLT3 mutation can have gilteritinib (a lower intensity treatment) to get them into remission before a transplant - we explain more about this below.

Find out more about stem cell transplants for AML.

Donor lymphocyte infusion (DLI) can be used if you’ve had a stem cell transplant but a relapse is detected, or the amount of donor cells in your bone marrow is falling.

Donor lymphocyte infusion can also be used if you are in remission but have a positive MRD test.

Donor lymphocyte infusion means being given white blood cells (called lymphocytes) from your stem cell donor, to boost your new immune system and help it fight the leukaemia.

The same person who donated stem cells for your transplant will need to donate some blood for the DLI. This is a much simpler process than the original stem cell collection.

Donor lymphocyte infusion isn’t suitable for everyone, but it may help some people get into or stay in remission.

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Non-intensive options

If you can't have strong treatment, then non-intensive treatment could still help control the AML and slow its progression. This might be a better option for people whose general level of fitness would make it difficult for them to tolerate strong treatment.

These treatments cannot usually cure the AML, but they aim to give you the best possible quality of life. Many of them can be taken at home rather than hospital.

If you're having non-intensive treatment, it might be hard for you or your family to accept that the AML probably can’t be cured. We are here to support you and your loved ones – contact our Support Service for emotional support or practical advice.

It might also help your family to connect with other relatives of people with AML. Visit our online forum to connect with others affected by AML.

Below are some of the main non-intensive treatments for relapsed or refractory AML.

Azacitidine is a chemotherapy drug that is given to you by injection just under the skin (subcutaneous injection), usually in your tummy, arm or thigh.

Low-dose cytarabine is a chemotherapy drug that is given to you by injection just under the skin (subcutaneous injection), usually in your tummy, arm or thigh. Sometimes it is given as an intravenous infusion.

It is sometimes possible to have LDAC injections given at home, either by a district nurse or by yourself or a family member.

Targeted therapies

Targeted therapies are becoming more common and are effective for particular subtypes of AML, because they target specific genetic mutations.

About 30% of people with AML (roughly 1 in 3) have a genetic mutation in the FLT3 gene in their AML cells. If you have this mutation at the time of relapse, you can have a drug called gilteritinib, which specifically targets cells with FLT3 mutations.

Gilteritinib is called a targeted therapy drug because it can target the cancer cells specifically (it attacks cells with the FLT3 mutation but has much less effect on healthy cells). You take it as tablets.

Many people have gilteritinib as a non-intensive treatment, to try to control the AML but not cure it. But some people who reach remission with gilteritinib can then have a stem cell transplant if their general health allows it (see above) which could offer a cure for the AML.

Research and clinical trials

There are many clinical trials and studies looking at improving treatment for relapsed or refractory AML. Your hospital might be running one, or they might be taking part in one. Ask your doctor if there are any clinical trials that might be suitable for you.

To find out more about clinical trials, contact our Clinical Trials Support Service.

We are also funding research into more effective treatments for AML, so that more people can reach and stay in remission.

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Supportive care

Some people choose not to go ahead with any of the main treatments. In this case, you would still be given any other treatments you need to help your body cope with the AML and to keep you feeling well for as long as possible, like antibiotics or blood transfusions.

You might also be offered very low-dose chemotherapy like hydroxycarbamide, which is taken as tablets/capsules and help to control your blood cell counts.

If you're told the AML can't be cured

Hearing that your treatment, or the treatment of someone you love, has stopped working, is understandably extremely difficult.

You can feel shocked, scared, or devasted. You might also feel angry, or very sad. Emotions can be overhwleming.

When treatment hasn't worked, it's common to have feelings similar to grief. If it's someone you love who has AML, you might feel completely helpess.

Often people say they can only take things one day at a time, and that trying hard to focus on happy memories and telling each other how you feel is important.

Many find support by talking to others who understand on our online community forum.

If you're in this situation, we are here for you, for emotional support or to talk about how you're coping. Contact our Support Service on 0808 2080 888.

Nothing left unsaid

In this real life story, Sue talks about dealing with the news that her husband's blood cancer probably wouldn't be cured.

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