Throughout your treatment, your healthcare team will always discuss your treatment options with you. They’ll want to hear what you think, answer your questions, and explain anything you’re unsure about.
- Blood cancer
- Childhood leukaemia
- Acute lymphoblastic leukaemia (ALL)
- Acute myeloid leukaemia (AML)
- Acute promyelocytic leukaemia (APL)
- Chronic lymphocytic leukaemia (CLL)
- Chronic myeloid leukaemia (CML)
- Chronic myelomonocytic leukaemia (CMML)
- Hairy cell leukaemia (HCL)
- Large granular lymphocytic leukaemia (LGLL)
- Plasma cell leukaemia (PCL)
- T-cell acute lymphoblastic leukaemia (T-ALL)
- Other conditions related to blood cancer
Acute lymphoblastic leukaemia (ALL) treatment and side effects
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 too fast to keep up with the change to your life, but many people find that starting treatment straight away is reassuring.
Some people find it hard to fully understand the details of their treatment when they’re trying to cope with the stress of being diagnosed with leukaemia. There isn’t a single ‘best’ way to deal with this situation or a right way to feel. 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 (concentrated), while others are less intensive. What’s right for you depends on your age, general health and the type of ALL you have.
ALL becomes more difficult to cure as people get older. We don’t know the reason for this – it could be that the disease itself is different in older people, or it could be because it’s harder for older people to cope with intensive treatment.
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 at any point. 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.
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.
Before your treatment starts, you should talk to your healthcare team about how it might affect your ability to have children, if that’s relevant and important to you.
Active treatment can affect your fertility. Because treatment for ALL has to start so quickly, there usually isn’t time to preserve a woman’s eggs. Men sometimes have a chance to freeze their sperm for the future.
If you do go on to have children, studies have shown that the treatment you’ve had won’t affect their health. Similarly, the likelihood of your child getting ALL would be no greater than for any other child. Your healthcare team will be able to discuss your options with you, and refer you to a fertility department, if appropriate.
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 aims to get rid of the leukaemia cells and help 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 its treatment.
Everyone will receive supportive care, whether they have intensive or less intensive active treatment.
Some people may choose not to have any active treatment, or the doctors might not recommend it as the best option. If this is the case for you, an approach called palliative care will help control the symptoms of ALL and improve your quality of life. The palliative care team will be able to support both you and your family.
For more information on different types of treatment and how your healthcare team will help you weigh up your options, download our fact sheet on Treatment decisions.
All new drugs and treatments are thoroughly tested before they’re made available. After tests in a laboratory, they’re tested on people. Research studies which involve testing new drugs and treatments on people are called clinical trials.
The UK has a proud history of conducting clinical trials in ALL, which have contributed significantly to developing and improving treatments for patients with the disease. It’s highly likely that you will be approached by your healthcare team to consider taking part in one of the ongoing major national trials. The trial you’re offered will depend on your age and general level of fitness. For example, younger adults are likely to be offered a trial designed for children and young people aged up to 24 years old. Specific information about suitable trials will be given to you at the time.
If you’re not given information about one of the national trials and you think you would be interested, speak to your healthcare team.
Find out more about clinical trials.
Stages of active treatment
Chemotherapy is the main active treatment for ALL. You’ll be offered a combination of chemotherapy drugs as set down in 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 which drugs you’ll have and when during each phase. They may be able to give you a chart with this information on too.
How chemotherapy is given
Most chemotherapy for ALL will be injected into the bloodstream through a vein (known as intravenous infusion).
Drugs will usually be given directly into a tube, known as a central line, which is inserted into a large blood vessel. This line is kept in over the whole period that you have treatment, so there’s no need for repeated injections. There are different types of central line. These include:
- a PICC line or Peripherally Inserted Central Catheter − a central line that’s put into your arm (the most commonly used central line)
- a Hickman® line − a central line that can be put under the skin in your chest.
The aim of this first phase of treatment is to get you into remission (also called complete remission or CR), where there’s no sign of leukaemia. This involves using several chemotherapy drugs in combination. The goal is to clear the leukaemia cells completely from your blood and bone marrow. This works for about nine out of ten people (90%).
The length of this treatment stage depends on your individual situation, but usually lasts between four 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 healthcare team close by.
Remission induction for Philadelphia positive ALL
If you have this type of ALL, your treatment will be different. Doctors use drugs called tyrosine kinase inhibitors (or TKIs) to treat it. These drugs target the abnormal protein (tyrosine kinase) produced by the leukaemia cells. When used alongside standard chemotherapy, TKIs can significantly increase the chance of a cure for people with Philadelphia positive ALL.
The TKI that most people with Philadelphia positive ALL will be given is called imatinib.
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 (CSF) that surrounds your spine to try and prevent leukaemia cells from entering the fluid.
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 (CR).
Minimal residual disease tests
You may also have a minimal residual disease test (MRD) to check how complete your remission is.
When your doctors look at blood cells through a microscope, the lowest level of leukaemia they can detect is if around one in every 20 cells is a leukaemia cell. The MRD test is much more sensitive and can detect leukaemia cells at levels as low as one leukaemia cell in 100,000 cells. This gives your healthcare team more accurate information which can help with planning the next phase of treatment.
This phase is sometimes called post-induction or post-remission therapy.
It’s usual for some leukaemia cells to remain after your initial chemotherapy, even if doctors can’t see any under the microscope. So when the remission induction phase is finished, you’ll have more chemotherapy to clear any leukaemia cells that might remain in your blood and bone marrow.
This stage usually lasts for several months. It involves several rounds (known as blocks) of intensive therapy, which are similar to the treatment you get at the remission induction stage.
You might be able to have some of this treatment as an outpatient, which means you won’t always have to stay in hospital overnight. But you should be prepared to spend quite a bit of time in hospital.
Stem cell transplant
Some people may be offered a stem cell transplant (also called a bone marrow transplant) during this stage of treatment.
Transplants can make you feel very unwell and can cause complications, so doctors look at a number of things before offering you a transplant, including your age and general health, and how well the first phase of your treatment worked.
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.
If you have a stem cell transplant, you will not need the next phase of treatment (maintenance) but will have careful follow-up once you have left hospital.
For more information on stem cell transplants download or order our booklet Blood stem cell and bone marrow transplants: the seven steps.
Maintenance therapy aims to prevent the cancer coming back (relapse) and usually involves low doses of chemotherapy and steroids. The maintenance phase is 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 start getting back to normal, including going back to work or college. You will still be at risk of infection at this time, so if you have any symptoms of infection, tell your healthcare team straight away so they can give you the treatment you need.
Although you may feel relieved that the more intensive stages of your treatment are over, you may also feel concerned about seeing your healthcare team less often. If you are worried, talk to your CNS. They can refer you for counselling if you would like more support.
Find out more about managing your risk of infection. Download our fact sheet Understanding Infection.
Treatment for relapsed ALL
As many as nine out of ten adults with ALL (90%) will go into remission (although this doesn’t necessarily mean that they’re cured).
Unfortunately, some people relapse (the ALL comes back). Relapse happens because some leukaemia cells remain, often because they’ve become resistant to the drugs people are 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.
Usually, the first step in treating relapsed ALL is to repeat the remission induction programme. This treatment might need to be more intense than the first time around. In trials, a second go at remission induction using chemotherapy has worked for around four out of ten people (40%).
There are two new drugs called blinatumomab and inotuzumab which have recently become available on the NHS for relapsed ALL. These drugs are known as monoclonal antibodies − they work by attaching themselves to the leukaemia cells, so your immune system can find these cells and kill them. They have shown promising results in clinical trials and tend to have fewer unpleasant side effects.
If your treatment is successful this time round and you go into remission (CR), your healthcare team 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 their quality of life.
Treatment for relapsed Philadelphia positive ALL
If you have Philadelphia positive ALL and you relapse after chemotherapy with imatinib (or it doesn’t put you in remission in the first place), your healthcare team may offer you more chemotherapy with a different TKI (tyrosine kinase inhibitor). Dasatinib is a TKI that can be used for people who have relapsed or not responded to treatment including imatinib. Ponatinib is another option that doctors can recommend.
Potential future treatment
There is also a new treatment called CAR-T therapy, which is currently being trialled for some people with relapsed ALL. T cells (a type of white blood cell) are removed from the body and altered in a lab to make them more effective at killing leukaemia cells. They are then put back into the body.
CAR-T therapy could offer people with hard-to-treat ALL another treatment option.
See our blog for more information on CAR-T therapy.
At the same time as you’re having active treatment for your illness, you will also be offered supportive care (which is different from palliative care). Supportive care involves help with preventing infections, blood transfusions, mouth care, dietary advice, pain management and dealing with complications you may get from the ALL and its treatment.
Here are some examples of supportive care you might be offered while you have active treatment:
Drugs to protect your kidneys
When leukaemia cells are destroyed, they release a chemical called uric acid, which can damage the kidneys. Drugs called allopurinol and rasburicase can help. It’s also important to drink plenty of fluids to reduce the risk of kidney problems.
At the start of active treatment, the main side effect is that you produce fewer blood cells. This is known as bone marrow suppression. This can result in a low platelet count, which can lead to heavy bleeding. A platelet transfusion can help to protect you against this.
Red blood cell transfusions
Another result of bone marrow suppression is low levels of a protein called haemoglobin, which can cause anaemia. This can make you feel tired and out of breath, but regular blood transfusions can help.
Because ALL and its treatment reduce your white blood cell count, you’ll be more vulnerable to infections. So your healthcare team will take care to protect you from infection at all times. They will give you an antibiotic to lower your risk of getting pneumonia (a serious chest infection), and a drug called acyclovir to stop you getting shingles, a virus that affects the skin around a nerve.
You may also be offered a treatment called a growth factor (commonly known as G-CSF). This stimulates your bone marrow to make more white blood cells called neutrophils and helps you to recover from the effects of treatment.
For more information on supportive care, download our fact sheets Blood transfusions, Understanding infection, Mucositis (sore mouth or gut), and Managing sickness and vomiting.
Side effects of treatment
There are some potential side effects from treatment for ALL.
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
- difficulty pooing (constipation)
- frequent watery poos (diarrhoea)
- bruising and bleeding
- extreme tiredness (fatigue)
- hair loss
- a sore mouth or mouth ulcers (mucositis)
- feeling and being sick (nausea and vomiting)
- headache (this can also happen after a lumbar puncture)
- a blood clot – this could cause leg or chest pain, redness, or swelling
- damage to the nerves which causes a burning feeling or pins and needles, or a loss of feeling, often in the hands and feet (peripheral neuropathy)
- abnormal changes in your liver − this doesn’t usually result in any symptoms, but sometimes causes the build-up of a substance called bilirubin in your body, which makes your skin look yellow (jaundice).
It’s important to remember that any side effects you get are only temporary. If you do have side effects, tell your healthcare team, as they may be able to help you manage them. For example, there are medicines you can take to help with feeling sick.
Chemotherapy can cause a low level of white blood cells called neutrophils, which means that your body can’t fight off infections as well as it should. This is called neutropenia or being neutropenic. If you are neutropenic and get an infection, then you are at risk of a serious condition called neutropenic sepsis, which can be life-threatening.
If you think you have an infection, you should contact your healthcare team straight away. Symptoms to look out for include:
- a raised temperature (usually above 38°C)
- a temperature below 36°C
- coughing or a sore throat
- confusion or agitated behaviour, especially if this comes on suddenly (this is more common in older people)
- rapidly feeling more poorly
- fast heartbeat and breathing
- difficulty weeing (passing urine) or producing little or no urine
- pain which comes on quickly and gets worse
- shivering or shaking and feeling cold.
For more information managing the side effects of treatment, download our fact sheets Understanding infection, Mucositis (sore mouth or gut), and Managing sickness and vomiting.
Long-term side effects from chemotherapy
With any type of chemotherapy, there’s always some risk of long-term or late side effects. These could include problems with the thyroid (a gland in your neck), heart or lungs. Some chemotherapy drugs raise the risk of developing other types of cancer later on, but this is very rare. Your ability to have a child (your fertility) may also be affected by chemotherapy.
The risk of long-term side effects will depend on how many cycles of treatment you’ve had, the intensity (strength) of the treatment 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.
Short-term side effects from steroids
Steroids can cause side effects such as:
- increased appetite
- mood changes and feeling irritable
- 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.
Going to your follow-up appointments is really important if you’ve had ALL. 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 blood checks every one or two 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 also be able 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 travel vaccinations (jabs) but check it’s ok with your consultant first. If you’re taking steroids or you’ve had a stem cell transplant, you should never have a vaccination without talking to your consultant.
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.
The outlook (prognosis) is different for each person with ALL. The best person to talk to about your individual outlook is your consultant, or someone else in your healthcare team.
There are several things which may affect your outlook. The main ones your healthcare team will look at are:
- your age and general health − ALL is typically easier to treat in younger people
- the type of ALL you have
- the result of your minimal residual disease (MRD) test after remission induction treatment.
If you want to find out more
Cancer Research UK has more information on the general outlook for adults with ALL. Remember that statistics can only give an overall picture. Your own outlook is individual to you and will depend on your age, general health and specific condition. The Cancer Research UK information nurses can help you with any questions you may have about these statistics on 0800 800 4040.