The main treatment for acute lymphoblastic leukaemia (ALL) is chemotherapy (chemo). This means having anti-cancer drugs to destroy the leukaemia cells. You’ll also have drugs called steroids, which help the chemo to work.
The treatment for ALL is pretty intensive at times and can cause unpleasant side effects. But you'll be in close contact with the hospital when you’re most likely to feel unwell and the staff will be able to help if things get tough. Don’t feel you have to be brave. Be honest about how you are feeling with your doctors and nurses and they can give you medicines that can help you feel better.
ALL is treated in three phases:
- getting rid of the leukaemia - remission induction
- keeping the leukaemia away - consolidation and delayed intensification therapy
- keeping the leukaemia away long-term - continuing or maintenance therapy
You usually start chemo pretty quickly after finding out that you have ALL.
You'll be in hospital for your treatment to begin with. If you're 18 or younger, you'll be treated in a specialist Principal Treatment Centre (PTC) for teenagers and young adults (TYA). If you're 19 or older, you'll be offered the choice of having treatment at the PTC or another hospital closer to home called a TYA designated hospital.
"I wouldn't want to go through it again and anyone who is going through it, then I know how you feel. It's very difficult but there is a light at the end of the tunnel because I've got through it and you can get through it as well."
You’ll be given chemo as tablets, by injection and into your bloodstream (intravenously). You’ll also be given chemo into the fluid around the spinal cord to make sure the leukaemia cells can’t hide there. This is called central nervous system (CNS) therapy. It is also known as intrathecal therapy.
You’ll have a ‘line’ put in to one of your main veins to make it easier for you to have intravenous treatment. Your nurses and doctors can also use the line to take blood samples for blood tests. There are different kinds of lines. You might have a central line (Hickman® or Groshong®), an implantable port (portacath), or a PICC line.
Having chemo can be hard. But the staff looking after you will give you medicines to help you cope with any side effects so you can stay strong enough to have treatment. And you’ll be given medicines to stop you feeling sick and antibiotics to help prevent infections.
There will probably be times when you feel rough and other times when you’ll feel better. You might also feel upset, down or irritable. Talking to someone you trust can help you cope with these feelings.
Being in hospital or coming up to hospital for clinics and treatment can be frustrating, especially when you miss out on stuff happening at school, college, university or work, or on things your friends are doing. You could try talking to your friends and family about this and see what they can do to help you. It can also help to talk to any new friends you’ve made who are going through similar experiences to you.
We have more information about chemotherapy that has been written for people of all ages, not just teens and young adults.
Getting rid of the leukaemia (remission induction)
The first phase of your treatment is about getting rid of the leukaemia. You’ll be given chemo to kill as many leukaemia cells as possible. Remission means there is no sign of leukaemia cells in your blood or bone marrow.
This type of treatment involves:
- chemo to kill the leukaemia cells (including CNS therapy)
- steroids to help the chemo work
- drugs (allopurinol or rasburicase) to help protect your kidneys from problems that can happen when lots of leukaemia cells are destroyed at once
- another tablet (for example ranitidine or lansoprazole) to stop indigestion or ulcers
You need to stay in hospital during this phase of your treatment so the doctors can check how things are going.
Treatment to get you into remission takes about five weeks, sometimes a bit longer. Being in hospital that long can be really difficult at times. If you're struggling to cope, try and talk to your friends, family, doctors and nurses. It’s important not to bottle up your feelings otherwise your might end up finding it hard to cope. Drugs you may be given include:
Different chemo can cause different side effects. There is information about the specific ones in Macmillan's chemotherapy section.
Central nervous system therapy
Chemo given as tablets or into the blood can reach most places in your body. But it isn’t good at getting into the brain or spinal cord (called the central nervous system or CNS). So you’ll be given treatment into the fluid that goes around the CNS to target any leukaemia cells that might be hiding there. This is called CNS therapy.
CNS therapy is given during remission induction treatment (to get rid of the leukaemia) and continues right until the end of maintenance therapy.
Chemo is given into the fluid, called cerebrospinal fluid or CSF, around your spinal cord. Drug treatment given into the CSF is called intrathecal therapy.
It’s a bit like having a lumbar puncture but with chemo added. A doctor puts a needle into the space between two small bones (vertebrae) near the bottom of your spine. Then they inject chemo into the CSF. The CSF will carry the chemo around your CNS so it can reach any leukaemia cells that might be there.
The chemo drug used for CNS therapy is called methotrexate.
Most people don’t have side effects after having intrathecal methotrexate. But occasionally it can cause headaches, dizziness, tiredness or blurry vision for a few hours. Rarely other side effects like seizures (fits), weakness of your arms or legs and changes in how awake you are can happen. But these almost always go away completely and you can still have the intrathecal injections in the future.
Keeping leukaemia away
This treatment is called consolidation and delayed intensification therapy. When you’re in remission, it means the doctors can’t see any leukaemia cells in your blood or bone marrow samples when they check them under the microscope. But there may still be leukaemia cells hiding in your body, so you need further treatment to get rid of these cells.
You’ll be given different types of chemo drugs. This is so the leukaemia cells don't have a chance to get used to them (which is called drug resistance).
This phase of treatment takes about 5-6 months. Most of the treatment can be given as an outpatient but you might need to stay in hospital for some parts of it.
Drugs you may be given include:
- cytarabine (ara-C)
Chemo does cause side effects. There is information about the specific ones in Macmillan's chemotherapy section.
Keeping the leukaemia away long term (maintenance therapy)
This treatment is given to prevent the leukaemia from returning (known as relapse). The chemo is given in low doses. You have it as an outpatient so you can keep doing all your normal, everyday activities when you’re having maintenance therapy.
Maintenance therapy is given in 12-week cycles.
- mercaptopurine tablets each day
- methotrexate tablets once a week
- steroid tablets for five days every four weeks
- vincristine chemo every four weeks
- methotrexate chemo into your cerebrospinal fluid (CSF) every 12 weeks
At the moment, boys have just over three years of maintenance therapy and girls have just over two years. This is because it takes a bit longer in boys to get rid of any remaining leukaemia cells.
During this time, you'll have regular check-ups - usually every week or two - to check if your drug doses need to be adjusted and to make sure you're OK. Very often, things like blood tests can be done at your GP's surgery or at home by a district nurse. Ask your doctor or nurse about arranging this.