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Radiotherapy is the current standard of treatment for children with a diffuse midline glioma.
If your child is diagnosed with a diffuse midline glioma, surgery to remove the tumour is usually not possible. This is due to:
The usual treatment for diffuse midline glioma is radiotherapy. This is usually given daily (Monday to Friday) over three to six weeks. It will depend on what your child’s healthcare team feel is best for your child.
Tumours in the pons can now sometimes be biopsied (a sample of the tumour can be taken). This means biomarker testing can be done to see if the tumour has the H3.3 K27M mutation or not.
Unfortunately, research has shown that if your child has the H3.3 K27M mutation, they may not respond well to radiotherapy and another course of treatment may be suggested. You can find out more information about this on our prognosis for diffuse midline glioma page.
Your child might also be given steroids during this period to help reduce some of the pressure caused by the tumour and radiation treatment. It's important to note that steroids don’t treat the tumour itself.
Chemotherapy drugs, such as temozolomide, used to treat adult high grade gliomas in other parts of the brain, have not been effective in treating childhood diffuse midline gliomas.
The other difficulty is getting other possibly suitable chemotherapy drugs across the blood-brain barrier. This is the barrier that prevents harmful substances, such as viruses and poisons, from spreading into the brain. Unfortunately it also keeps out many chemotherapy drugs.
This means your child is unlikely to receive this type of treatment.
Our Jake animations can help explain brain tumours and brain tumour treatments to you and your child.
You might also want to look for clinical trials that might be available for your child. Even if your child is not given a new treatment while on a clinical trial, they will be given conventional (standard) treatment and also have their health monitored very closely.
There has been some interest in an experimental technique called convection enhanced delivery (CED). This bypasses the blood-brain barrier by using 4 very narrow catheters (hollow tubes) that are inserted into the tumour in the brain. The chemotherapy drugs are then delivered through these, directly into the tumour.
Researchers are currently working on finding out more about the specific genes and molecules involved in diffuse midline glioma tumour formation.
Knowing more about how the tumour is formed will enable drug developers to create new treatments for diffuse midline gliomas which are more targeted and effective.
For example, a mutation in the H3F3A gene, known as H3 K27M-mutant, has been found in about one quarter (25%) of diffuse midline gliomas. This means it may be a potential target for future drug treatments.
If you need someone to talk to or advice on where to get help, our Support and Information team is available by phone, email or live-chat.
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If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
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