Acute lymphoblastic leukaemia (ALL) is a type of blood cancer that starts from young white blood cells called lymphocytes in the bone marrow.
Adults and children can get it but it is most often diagnosed in younger people.
Our bible is the Bloodwise booklet you can download it here.
The key information we follow and check regularly is the treatment information you can read it here. And we’ve listed some of the key info below for quick reference.
Based on the results of tests your child had when they were diagnosed, their age and their white cell count, your child will have one of three treatment plans, or regimens.
Bilbo was on Regimen B he is now on Regimen C after his MRD results at the end of induction.
- Regimen A uses the lowest intensity of treatment. This is the initial treatment plan offered to children under 10 years old and children with a low white cell count at diagnosis.
- Regimen B is intermediate intensity. This is the initial treatment plan offered to children over 10 years old and children with a higher white cell count at diagnosis.
- Regimen C uses the highest intensity of treatment. It isn’t used at the start of treatment, but children may be moved onto this regimen later if not enough leukaemia cells have been cleared following the first part of treatment on regimen A or B, or if the cytogenetic tests show that there are certain genetic abnormalities present in their cells. If a child needs to be moved onto regimen C, they won’t be moved back to a lower intensity regimen.
Treatment types and phases
In each phase of treatment your child will have a combination of several different drugs. The drugs may be given in different ways:
- by mouth (oral) – as a tablet or solution
- into a blood vessel (intravenous or IV) – this may be as a single injection or by a ‘drip’ (infusion)
- into a muscle (intramuscular or IM) – as an injection
- into the fluid around the spine and brain (intrathecal or IT) – as an injection; this type of treatment uses the same procedure as the lumbar puncture.
The following chemotherapy drugs are used in various combinations in treatment for childhood ALL:
- cyclophosphamide – intravenous
- cytarabine – intravenous
- daunorubicin – intravenous
- dexamethasone (a steroid) – tablets or liquid
- vincristine – intravenous
- intrathecal methotrexate – injected into the fluid around the spine and brain
- mercaptopurine – tablets or liquid
- oral methotrexate – tablets or liquid
- pegaspargase/crisantaspase – intramuscular.
Phases of treatment
The total length of treatment is just over two years for girls and just over three years for boys. Treatment length is different for each because it’s been found that if boys stop treatment at two years, it’s more likely that their disease will return (this is known as a relapse).
This section gives an overview of the different phases of treatment. Your healthcare team will explain to you in detail which drugs your child will have and when, and can give you a chart to show this.
The treatment schedule is quite complicated and you’ll need to follow it carefully during the outpatient stages of treatment. If you’re having difficulty making sure your child receives all of the treatment at the right time, talk to your healthcare team – there are a number of different ways they can offer support.
Phase 1: induction
The first phase of treatment is called induction. For the first five weeks of treatment, your child will have intensive chemotherapy treatment to get rid of as many leukaemia cells as possible.
Your child will need to stay in hospital for at least the first week or two because the doctors will need to monitor them closely for any complications from treatment.
The doctors will do further bone marrow tests during and at the end of this first phase to see how your child is responding to the treatment. After two weeks, some children on regimen A will move onto regimen C. This will happen if the results of your child’s cytogenetic tests suggest that they need stronger treatment.
After four weeks, your child will have an MRD test to find out how many leukaemia cells are still in their bone marrow. If there are a low number of leukaemia cells present (this is called MRD low risk), your child will stay on the same treatment (regimen A or B). If there are a higher number of cells (this is called MRD risk), the treatment will move to the stronger regimen C.
Phase 2: consolidation
When the induction phase is complete, your child will have further chemotherapy to clear remaining leukaemia cells from the blood and bone marrow, and also to prevent leukaemia cells from spreading into the brain and spinal cord (the central nervous system or CNS).
For most of this time your child will be able to stay at home and only visit hospital for treatment or checkups (this is known as outpatient treatment). If your child has an infection or becomes ill at any stage during their treatment, they may need to return to hospital to stay in overnight or longer so doctors can monitor them closely.
The length of this phase and the type of chemotherapy your child will have is based on the results of the MRD test at the end of the induction phase.
- If your child is MRD low risk, then consolidation will last for either three weeks (regimen A) or five weeks (regimen B).
- If your child is MRD risk at the end of induction, then they’ll move onto regimen C and consolidation will last for 10 weeks.
- If your child is on regimen B for induction, but the results of their cytogenetic tests during induction suggest that they need stronger treatment, then they’ll move onto regimen C at the start of consolidation.
If your child is MRD risk, your doctors will carry out extra MRD tests halfway through and at the end of consolidation. If these show that the disease isn’t responding to the treatment, then your consultant will talk to you about which alternative treatment options might be most effective.
Phase 3: interim maintenance
For children on regimen A and B, this third phase lasts for about two months and gives a break of less intensive treatment between consolidation and delayed intensification (phase 4). The main treatment during this period will be oral chemotherapy, and your child will be able to stay at home for most of the time.
Children on regimen C will have a more intensive course of chemotherapy involving methotrexate. Your child’s doctor will explain to you exactly how this treatment is given because this will depend on whether your child is taking part in the UKALL 2011 clinical trial or not.
Phase 4: delayed intensification
Delayed intensification will last for seven or eight weeks depending on whether your child is MRD low risk or MRD risk. The aim of this phase is to give intensive chemotherapy at a time when the number of leukaemia cells is very low, to clear as many of them as possible. Your child will mainly be an outpatient for this phase of treatment.
Phase 5: maintenance
This is the longest but gentlest phase of treatment. It lasts for just under two years for girls and just under three years for boys. It reduces the risk of the disease coming back. Your child will mainly be an outpatient for this phase of treatment.
By the time your child has moved onto maintenance therapy they may be well enough to resume their normal activities, including attending school regularly. However, recovery time varies a lot in children and some may take a little longer to get back to their normal activities, even if they’re feeling much better physically – this is normal too.
CLIC Sargent: fights tirelessly to stop cancer destroying young lives. From the day we met Sarah our social worker we’ve been in safe hands. She’s worked to advocate and support us navigating the diagnosis and the bumps in the road.
Children with Cancer UK: Our mission is to improve survival rates and the quality of survival in young cancer patients and to find ways to prevent cancer in the future.
Macmillan Cancer Support: From the moment you’re diagnosed, through your treatment and beyond, Macmillan Cancer are a source of support, giving you the energy and inspiration to help you feel more like yourself.
Bloodwise: UK’s leading blood cancer research charity. For us this website is full of really useful information about our diagnosis and the treatment path we are on.
Children’s Cancer and Leukaemia Group: The experts in childhood cancer. Shaping a future where all children survive and live happy, healthy and independent lives.