A trial looking at treatment for children and young people with an ependymoma (SIOP 99)

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

• Have been diagnosed with an ependymoma that has spread outside the skull
• Have had chemotherapy
• Have had radiotherapy
• Have any medical condition or illness that means you cannot have chemotherapy
• Have a particular type of ependymoma called myxopapillary ependymoma, subependymoma or ependymoblastoma

Trial design

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.

Hospital visits

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

You will have an MRI or a CT scan 6 weeks after radiotherapy has finished. This will be repeated

• 4 monthly for 5 years
• 6 monthly for a further 2 years

Side effects

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

• Vomiting
• Headaches
• Hair loss
• Tiredness

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
• Tiredness
• Dry and sore mouth
• Loss or reduction of fertility (ability to have children) later in life, especially for boys

There is more information about the particular side effects of cyclophosphamide, vincristine and etoposide (VP-16) in the cancer drugs section of CancerHelp UK.