"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 an ependymoma (SIOP 99)
Please note - this trial is no longer recruiting patients. We hope to add results when they are available.
This trial is looking at radiotherapy with or without chemotherapy for children and young people with a type of brain tumour called an ependymoma.
This trial is for children from 3 years old and young people up to and including the age of 20. We use the term ‘you’ in this summary, but if you are a parent, we are referring to your child.
The best treatment for children with ependymoma within the skull (intracranial ependymoma) is not known yet. The researchers will follow a particular programme of treatment, based on the results of studies already carried out. The type of treatment a child has will depend on whether their ependymoma can be completely removed with surgery or not. These treatments may include radiotherapy, chemotherapy and further operations.
The aim of this international study is to find out if the ependymoma is less likely to come back after the treatment programme in this trial. And whether the treatment programme causes the least side effects.
Who can enter
You can enter this trial if you
- Have been diagnosed with an ependymoma brain tumour that is within the skull
- Are well enough to take part in the trial
- Are between 3 and 20 years old
You cannot enter this trial if you
You will be registered into this trial after you have had an operation to remove the ependymoma. You will have an MRI or CT scan to see how much of the tumour has been removed. If your scan shows no sign of tumour you will have radiotherapy. Your doctor will explain what type of radiotherapy you will have and what this will involve.
If your scan shows that some tumour is left, you will have chemotherapy to try to shrink the tumour. Your doctor may recommend that you have a central or long line put in. This is also sometimes called a ‘wiggly line’. It makes it easier to give chemotherapy and take blood samples.
If you have chemotherapy you will have cyclophosphamide, vincristine and etoposide (VP-16). You will have these drugs into your central line over 3 days. You will then have vincristine on its own 1 week and 2 weeks later. This 3 week treatment makes up one course of chemotherapy. This will be repeated every 4 weeks for 3 more courses.
You will then have another MRI or CT scan to see if chemotherapy has worked. If the scan shows that the tumour is still there, your doctor will discuss with you whether or not another operation is possible. A second operation may be able to remove more of the tumour.
Whether or not you have a second operation, you will then have radiotherapy. Your doctor will explain what type of radiotherapy you will have and what this will involve.
When radiotherapy is finished, your doctor may suggest that you have another operation to remove any tumour that may be left.
Treatment for ependymoma is very intensive. You will be in hospital on and off for some months. This will vary depending on the type of treatment you have.
You will be seen by a doctor and examined every 2 weeks while you are having treatment. If you have chemotherapy, the appointments may be more frequent.
When radiotherapy has finished, you will be seen and examined by a doctor
- Every 2 months for a year
- Every 3 to 4 months for 2 years
- 4 monthly for 5 years
- 6 monthly for a further 2 years
An operation to remove your brain tumour has possible risks. This can include causing damage to your brain. Your doctor will discuss this with you in detail before the operation.
Radiotherapy to the brain has early and late side effects. Early side effects include
Late side effects include
- Learning difficulties
- Problems with memory
There is more information about side effects of radiotherapy on CancerHelp UK.
All chemotherapy drugs have side effects. The most common side effects are
- A drop in blood cells causing an increased risk of infection, bleeding problems, tiredness and breathlessness
- Hair loss
- Feeling or being sick
- Loss of appetite
- Dry and sore mouth
- Loss or reduction of fertility (ability to have children) later in life, especially for boys
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 Richard Grundy
Dr Maura Massimino
Cancer Research UK Children's Cancer Trials Team
University of Birmingham
NIHR Clinical Research Network: Cancer