ALL treatment and side effects

Updated 24 Oct 2017

The treatment you have for acute lymphoblastic leukaemia (ALL) will depend on your health, your individual condition and your wishes.

The treatment plan for ALL involves chemotherapy drugs, steroids and other medicines. The goal of your treatment will be to achieve remission (meaning there’s no evidence of leukaemia cells left in your body).

Throughout your treatment, your medical team will always discuss your treatment options with you. You’ll be able to give your opinions and preferences and ask questions at any point.

Watch George talk about treatment for acute lymphoblastic leukaemia (ALL)

Treatment planning

It’s very important to start treatment soon after you’ve been diagnosed, because ALL can develop quickly. It may feel like things are happening very fast, but don’t be afraid to ask as many questions as you need to.

Your doctor will recommend a treatment plan and talk to you about what it will involve. Treatment plans are tailored to each individual, so if you meet someone else with ALL, they might be having different treatments. Some treatment programmes (also called protocols) are very intensive, while others are less intensive. What’s right for you depends on your age, general health and the type of ALL you have.

You may be offered less intensive treatment in older age. The disease becomes more difficult to cure with older people. We don’t know the reason for this – it could be down to the underlying genetics of the disease in older patients, or it could be due to the fact that the intensive treatment cannot be tolerated as well in older age.

However, treatment decisions are never based on age alone, but on general health and fitness. Your wishes are always taken into account.

Your treatment plan may need to change along the way. If this happens, your healthcare team will explain why, and talk to you about the different options available to you. Most people in the UK who are diagnosed with ALL are invited to join a clinical trial.

Steroids

Most people will begin steroid treatment while their treatment plan is being confirmed. The steroids will start working to get rid of the leukaemia cells.

Types of treatment

The best treatment for you will depend on your individual situation. Generally, treatment for ALL can be divided into:

  • Active treatment, which is aimed at getting rid of the leukaemia cells and helping your bone marrow work normally again.
  • Supportive care, which helps you feel better and supports your body through some of the problems caused by ALL and the treatment.

Everyone will receive supportive care, whether they have intensive or non-intensive treatment. Some people may choose not to have any active treatment, or the doctors might not recommend it as the best option. If this happens, patients may choose an approach called palliative care to help control the symptoms of ALL, and improve quality of life. The palliative care team will be able to support both you and family members.

Outlook

The outlook is different for each person with ALL. The best person to talk to about your individual prognosis is your consultant, or someone on your healthcare team. Generally, up to eight in ten people can expect to be in remission after active treatment (although this may not be a complete cure).

There are a number of factors which may affect your outlook. The main ones your healthcare team will look at are:

  • your age and general state of health: ALL is typically easier to treat in younger people
  • your white blood cell count at the time you’re diagnosed: the lower it is, the better your response to treatment is likely to be
  • the type of ALL you have.

Talking about your prognosis

You may find it hard to ask or talk about your prognosis. This might be more difficult at first, and you might feel more ready to do this later on, once you’ve had more time to think about it.

Sometimes those close to you may want to know, even if you prefer not to. However, your healthcare team aren’t allowed to give this or any other information to anyone – not even family members – without your permission. Try to decide early on who you want to know about your condition, then tell your healthcare team. You can change your mind any time. Every person is different, so your consultant and healthcare team are the best people to ask about your likely outlook (your prognosis).

Treatment types

Phases of treatment

Chemotherapy is the main active treatment for ALL. You’ll be offered a combination of chemotherapy drugs in line with your treatment plan (your healthcare team may call this a protocol or regimen).

Your treatment will be divided into three phases, or ‘blocks’. This section gives an overview of the different phases of treatment.

Your healthcare team will explain to you in detail which drugs you’ll have and when during each phase. Your doctors may be able to give you a chart with this information on too.

> Find out more information on clinical trials

Phase 1: remission induction

The aim of this first phase of treatment is to get you into remission. This involves using several chemotherapy drugs in combination. The goal is to clear the cancer cells completely from your bone marrow and blood. This works for about nine in ten people.

The length of this treatment stage depends on your individual situation. It usually lasts between three weeks and two months.

Because there’s a risk of infection or bleeding, you’re likely to spend all, or most, of this stage in hospital, with your doctors and nurses close by.

Philadelphia positive ALL

If you have this type of ALL, your treatment will be quite different. Doctors use drugs called tyrosine kinase inhibitors (or TKI) to treat it. A drug called imatinib is one example of a TKI. These drugs target the abnormal protein produced by the cancer cells. When combined with standard chemotherapy, these drugs can greatly increase the chance of a cure for people with this kind of ALL.

Intrathecal chemotherapy

Around this time, you may also have what’s called intrathecal chemotherapy to give extra protection to your brain and spinal cord. Chemotherapy drugs will be injected into the cerebrospinal fluid (or CSF) around your spine to try and prevent leukaemia cells from entering the fluid. This procedure is the same as a lumbar puncture. After the standard lumbar puncture, and after fluid has been removed, the drugs are carefully introduced.

Testing for remission

When your initial chemotherapy is finished, doctors will look at samples of your blood and bone marrow under a microscope. If they can’t see any leukaemia cells, this means you’re in remission.

Minimal residual disease tests

Increasingly, minimal residual tests (MRD tests) are being used to test for remission in ALL, particularly within clinical trials.

When your doctors look at blood cells through a microscope, the lowest number of leukaemia cells they can detect is about one leukaemia cell in 20 normal cells. The MRD test is much more sensitive and can detect leukaemia cells at levels as low as one leukaemia cell in 100,000 normal cells.

Phase 2: consolidation

This phase is also sometimes called post-induction or post-remission therapy.

It’s possible that some leukaemia cells could still remain after your initial chemotherapy, even if doctors can’t see any under the microscope. So when the induction phase is finished, you’ll have further chemotherapy to clear any leukaemia cells that might remain in your blood and bone marrow.

You might have the same chemotherapy drugs as in the remission induction phase, with other drugs added. The drugs might be changed around so the leukaemia cells don’t become resistant to them.

This stage usually lasts for several months. For most of this time you may be able to stay at home, only visiting hospital for treatment or check-ups (this is known as outpatient treatment). If you have an infection or become ill at any stage during your treatment, you may need to return to hospital for a while.

Stem cell transplant

Some people may be offered a stem cell transplant (also called a bone marrow transplant) during this phase.

Transplants can make you feel very unwell and can bring complications, so doctors would look at a number of factors before offering you one, including your age and general health, and how well you responded to your initial treatment.

A transplant aims to give you healthy stem cells, which then produce normal blood cells. There are two types of stem cell transplant:

  • allogeneic or allograft – this uses stem cells from another person (a donor)
  • autologous or autograft – this uses your own stem cells but is rarely used for ALL.

> For more information on stem cell transplants, download or order our booklet The seven steps: blood stem cell and bone marrow transplants

Phase 3: maintenance

Maintenance therapy aims to prevent relapse and usually involves low doses of chemotherapy and steroids. The maintenance phase is really important because without it, there’s a higher chance that the ALL could come back, even if you seem to be in full remission. We don’t know why this happens, but we do know that having maintenance therapy gives much better results in the long term.

This stage usually takes about two years. Unless you get an infection or have a relapse, you shouldn’t need to stay in hospital and most people on maintenance therapy can go back to work or college.

 

Treatment for relapse

As many as nine out of ten adults with ALL will go into remission (this doesn’t necessarily mean that they’re cured).

Unfortunately though, some people relapse (the ALL comes back). Relapse often happens because some leukaemia cells remain, often because they’ve become resistant to the drugs you’re being treated with.

If you do relapse you may be offered the opportunity to go on another clinical trial looking at new treatments for relapsed ALL, which uses a different treatment plan, or protocol.

The first step in treating relapsed ALL is usually to repeat the remission induction programme. This treatment might need to be more intense than the first time around. In medical studies, a second try at induction remission therapy has worked for 40-70% of people.

At this stage, a doctor may recommend a stem cell transplant.

Some people may decide not to have active treatment any more. Instead they can ask for palliative care, which focuses on relieving their cancer symptoms and improving quality of life.

Side effects

Different people have different responses to their treatment. Even if two people are having the same treatment, they may have a different experience. So you might not get all of these side effects – try to bear this in mind when you read about them. You may also like to talk to your healthcare team about possible side effects.

Short term side effects from chemotherapy

You may experience some short term side effects from chemotherapy treatment. They could include:

  • an achy flu-like feeling
  • constipation
  • diarrhoea
  • bruising and bleeding
  • extreme tiredness (fatigue)
  • hair loss
  • infections
  • rashes
  • a sore mouth or mouth ulcers
  • nausea and vomiting
  • abnormalities of liver function (this doesn’t usually cause symptoms, but sometimes people may become jaundiced).

You’re unlikely to have all of these, and it’s important to remember that they’re only temporary. If you do have side effects tell your healthcare team, as they may be able to help you manage them. There are medicines you can take to help with nausea and vomiting, for instance.

Long term side effects from chemotherapy

With any type of chemotherapy, there’s always, at least, a small risk of long term side effects. These could include problems with the thyroid, heart or lung. The risk of long term side effects will depend on how many cycles of treatment you’ve had, the treatment intensity and whether you’ve had a transplant or not. Every case is individual, so your healthcare team will talk to you about this in more detail.

> For more information, download or order our booklet: Chemotherapy

Short term side effects from steroids

Steroids can cause side effects such as:

  • increased appetite
  • mood changes and irritability
  • weight gain
  • muscle weakness (especially in the legs).

Again, if you have any of these side effects it’s worth discussing this with your healthcare team, as they may be able to help.

> For more information on managing side effects, download our booklet: Supportive care

Follow-up

Your healthcare team will stay on the lookout for any signs of relapse, or complications from your treatment. The appointments can also help you adjust to everyday life again – it can feel very different once you’ve had ALL and your treatment has finished.

In some ways, you can think of your follow-up care as starting during the maintenance phase of your treatment. At this stage, you’ll have checks every two or three weeks. Then it’ll be more like every two or three months. Gradually, your checks will become less frequent, until you’re only having them once a year.

When you’re in complete remission, and have moved on to maintenance treatment, your lifestyle can get back to normal in almost every way. You should be able to return to work and take up your regular activities again. You should be able to resume your sex life if you want to, enjoy a healthy diet and drink alcohol within sensible limits.

You won’t normally need to stay in hospital any more, unless you relapse or get a severe infection. If someone you live with catches an infection, you might want to ask your healthcare team whether you need to take any special precautions.

After treatment, you can also travel and go on holiday. You might be able to have any travel vaccinations (jabs) you need, but check it’s ok with your consultant first. In particular if you’re taking steroids or you’ve had a stem cell transplant, you should never have a vaccination without talking to your consultant first.

If you’re having treatment from any doctor who isn’t your main consultant or GP, make sure you tell them that you’re having treatment for ALL, or that you’ve had it in the past.

> Find more information on travel insurance for people who have or have had cancer, from Macmillan Cancer Support

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