"I was delighted to take part in a clinical trial as it has the potential to really help others in the future.”
A trial looking at treatment for children and young people with low grade glioma brain tumours (SIOP - LGG 2004 CNS 2004 03)
Please note - this trial is no longer recruiting patients. We hope to add results when they are available.
This trial is looking at chemotherapy and radiotherapy for children and young people with a type of brain tumour called a glioma. It is recruiting children with a 'low grade' tumour, which means that it usually grows quite slowly. This trial is supported by Cancer Research UK.
This trial is for children and young people up to and including their 25th birthday. We use the term ‘you’, but if you are a parent, we are referring to your child.
If possible, children and teenagers with low grade gliomas will have surgery to remove their tumour. But an operation is not always possible, or the tumour sometimes grows back after surgery. In this situation, you may have either chemotherapy or radiotherapy.
This trial is trying to find the best way of treating all children and teenagers with a ‘low grade’ glioma. The researchers want to find out if
- Adding another chemotherapy drug, called etoposide, to the usual chemotherapy treatment will be better at stopping the growth of the brain tumour (etoposide is a well established drug in childhood cancers, but it has not been used in this particular way before.)
- Extending chemotherapy from 1 year to 18 months will prevent the tumour from regrowing
Trial doctors will collect information about any side effects you have some months, or even years after your treatment has finished. They want to improve treatment while reducing the possibility of problems in later life.
Some children have a genetic condition called neurofibromatosis type 1 (NF1). This increases your risk of developing a brain tumour. This trial will also follow those children with a low grade glioma who have NF1. The researchers will collect information about your cancer and its treatment. This greater understanding will hopefully improve treatment in the future.
Who can enter
Your can enter this trial if you
- Have glioma that is low grade
- Are well enough to have treatment as part of this trial
- Are aged between 0 and and 24 years (up to your 25th birthday)
Please note, young people between 16 and 18 years old, and some young adults between 18 and 25 years with a diagnosis of pilocytic astrocytoma are eligible for this trial.
If you are aged between 18 and 25 years and have another type of glioma (not pilocytic glioma) you will not be eligible for this trial, but there may be another trial that is suitable for you. Your consultant will talk to you about this.
You cannot enter this trial you have certain subtypes of low grade glioma (your consultant will be able to tell you if this applies to you)
If possible, you will have an operation to remove all the tumour, or as much of it as possible. If the tumour has been completely removed, you will not have any more treatment for now. Your progress will be followed closely by your consultant.
If you cannot have surgery and you do not have any symptoms, you may not have treatment at the moment. Your consultant will follow you closely.
If your brain tumour comes back, or it continues to grow and is causing symptoms, the consultant will discuss further treatment with you. The choice of treatment will depend on
- The location of your tumour (whereabouts it is in the brain or spinal cord)
- Your age
- Whether you have neurofibromatosis type 1 (NF1)
Children without NF1
If you are 7 years or younger, you may have chemotherapy. When the trial started, it was comparing 2 different types of chemotherapy. This part of the trial was randomised. Children taking part were put into two different treatment groups by a computer.
But this randomisation finished in April 2012 and since then all children having chemotherapy have the drugs vincristine and carboplatin which is the
If you are aged 8 years or older, you may have conformal radiotherapy. Your first visit to the radiotherapy department will be for planning. The doctors will make very detailed plans for your treatment. You will have a mask specially made for you so that your head stays still during treatment. You will have treatment every day, Monday to Friday, for 6 weeks (so a total of 30 treatments).
You may also have chemotherapy, depending on the individual circumstances of your disease. You have standard chemotherapy with vincristine and carboplatin. Your consultant will explain whether chemotherapy is appropriate for you.
If you are aged between 16 and 18 years old, or are aged between 18 and 25 years with a diagnosis of pilocytic astrocytoma you will have treatment as described above for aged 8 years or over.
Children with NF1
If you have chemotherapy you will have standard chemotherapy treatment with vincristine and carboplatin. The treatment will take about 18 months in total.
If you are not able to have surgery or chemotherapy, you may have conformal radiotherapy.
You will see a doctor for examinations and tests before treatment starts. These may include
- An eye test
- A neurological examination
- An MRI of the brain and possibly spinal cord
- Blood tests
Some of these tests are repeated during treatment. You will probably be able to have chemotherapy as an outpatient. So you will have your treatment during the day and go home every night.
If you have radiotherapy, you will have this as an outpatient, so you will need to travel to hospital each day, Monday to Friday, for 6 weeks. After you have finished treatment you will continue to have follow up appointments. These visits will include physical examinations, neurological examinations, eye tests and blood tests. These appointments will be
- Every 3 to 6 months for the first 3 years after treatment
- Every 6 months for years 4 to 5
- Every 6 to 12 months for years 6 to 10
All treatments have side effects. The most common side effects of chemotherapy include
- Hair loss
- A drop in blood cells causing an increased risk of infection, bleeding problems, tiredness and breathlessness
- Feeling or being sick
- Loss of appetite
- Dry and sore mouth
The most common side effects of radiotherapy to the brain include
- Sore skin in the area being treated
- Hair loss (hair will start to grow back a few months later, but may be thinner in some areas)
- Feeling or being sick
- Feeling tired
You may have specific side effects, depending on the area of the brain being treated. Some of these will be long term side effects. For example, you may need extra help with schooling in the future. Your consultant will discuss this with you in detail.
How to join a clinical trial
Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.
Dr Sue Picton
Prof David Walker
Cancer Research UK
Cancer Research UK Children's Cancer Trials Team
University of Birmingham
Experimental Cancer Medicine Centre (ECMC)
NIHR Clinical Research Network: Cancer
This is Cancer Research UK trial number CRUK/05/012.