Brain tumour chemotherapy

What you need to know about

Brain Tumour Chemotherapy

If you know anyone who’s been through chemotherapy, you may already have some ideas about how it might impact your child.

But every person is different, and it’s impossible to know how they will react to the treatment.

Knowing how chemotherapy works will hopefully help you to approach this treatment with more of an understanding.

What is it?

Chemotherapy uses powerful medicines to treat cancer cells. The drugs move around the body through the bloodstream. Your child may be given chemotherapy intravenously (into a vein) through a tube in their hand, arm or chest. In some cases it can be given in pill form, but this isn’t common. Chemotherapy is often used in combination with other treatments. There are many kinds of chemotherapy drugs and it is likely your child will have a combination of a few. Doctors will choose which drugs to use depending on your child’s age, the type of tumour and its grade.
Read More

How does it work?

Chemotherapy attacks the the brain tumour cells disrupting how they grow. It isn’t used on every type of brain tumour. It is sometimes used to shrink or limit the growth of the tumour – it won’t always rid your child of the tumour.

Your own body makes it hard to deliver chemotherapy to the brain as the blood-brain barrier is there to prevent toxic substances like the chemotherapy drugs from reaching the brain.

Should my child have chemotherapy?

It is not an easy answer. Your medical team will advise you best carefully assessing your child’s individual needs. To help you decide, ask about side-effects and the effectiveness of chemotherapy on your child’s specific type of tumour.

When will my child have chemotherapy?

It can be before or after surgery, or on its own if surgery is not an option. It may be give before, during or after radiotherapy or instead of radiotherapy if your child is too young. It may be given if a brain tumour comes back.

Chemotherapy is usually given in cycles, so your child has time to recover from the side effects. They may be given the drugs for a few days every few weeks, with a rest period in between. A lot will depend on which drugs are being used.

Read More

How is chemotherapy given?

Your child may be given chemotherapy intravenously (into a vein) This may initially be through a cannula on your child’s hand. In time, your child will be fitted with a tube depending on the type of chemotherapy they are being given.

Your child may have a central line fitted by general anaesthetic which runs through a large vein in the chest with an ‘exit’ in their chest. The exit is where the tube comes out and medicine can be put in. A PICC line is similar the ‘exit’ is in their arm. A portacath sits under the skin either in the hest or arm. It is all internal so requires no tube. Medicine is injected into the port

All of these can stay in for a long period of time, so don’t need to be reinserted each time your child has treatment. This is the most common method used for chemotherapy.

Sometimes, children can be given oral chemotherapy via a tablet or liquid. This is less common in children as their stomachs may not be able to absorb the medication.

Chemotherapy may also be given in rare cases using an Ommaya reservoir. This is a plastic dome placed under the skin of your child’s scalp during surgery. This technique is not commonly used, but means chemotherapy drugs can be delivered straight into the fluid in the brain.

Read More

What happens after treatment?

Side effects vary from child to child, and depending on the combination of drugs they are given. Your child’s consultant can go through the likely side-effects with you, and if you are worried talk to the consultant or specialist nurse. There may be other medication available to help manage the side-effects. The most common side effect is an increased risk of infection due to their immunity system being lower. Their blood will be tested regularly to ensure there is no infection. Doctors may suggest you increase hygiene and cleaning in your home during treatment to lower their chances of catching something. Your child may also lose their hair, and feel weak, tired or nauseous. In some cases your child might be constipated, become anaemic or develop a sore mouth. They may be given medication to relieve the side-effects. What are the most common side effects
  • lowered immunity
  • low red blood cell count (anaemia)
  • hair loss
  • constipation or diarrhoea
  • tiredness (fatigue)
  • nausea
  • sore mouth
  • sensitive skin
  • allergic reactions
If you are concerned about any of the side effects your child may be exhibiting, don’t hesitate to reach out to their medical team.

Questions you could ask your child’s team about brain tumour chemotherapy

  • What chemotherapy is being offered?
  • What will the side effects be, physical and emotional? When will they kick in?
  • If chemotherapy is offered, can my child have molecular testing to see whether the tumour will respond to the treatment?
  • How long will it take for my child to recover from the treatment?
Read More
Female doctor analyzing digital brain scan results on computer monitor in the hospital. brain tumour radiotherapy brain tumour chemotherapy

Do you need any help or assistance?

Rachel James

Community Fundraising Assistant
Rachel will join our team on September 1st and will be doing a wide range of tasks including promoting the charity in the local community, developing relationships with different people and organisations, and finding new fundraising opportunities. She comes from a caring background having been a teaching assistant and emotional literacy support assistant in York for many years, and previously leading a community care team. She has also done many years of work in the voluntary sector.

Matthew Taylor

Trustee

Matthew Taylor is Director of the York Health Economics Consortium at the University of York. He has been a supporter of OSCAR’s since its inception and, through his twenty years of research into the measurement of health-related quality of life, Matthew is keenly aware of the huge benefits that new treatments can bring to people living with brain tumours.

Matthew is actively involved in national-level healthcare decision making, having had former roles as the Scientific Director of the National Institute for Health and Care Excellence (NICE)’s Economic and Methodological Unit and as a committee member for NICE’s Public Health Advisory Group. He has over fifty peer-reviewed scientific publications, including a chapter in the textbook ‘The Business, Policy and Economics of Neurosurgery’.

Ryan Mathew

Clinical Trustee

Ryan Mathew is an Associate Professor at the University of Leeds and an Honorary Consultant Neurosurgeon at Leeds Teaching Hospitals.

The Hughes Family story had a big impact on Ryan. He first learnt of the charity when he became surgeon to Oscar’s dad, Ian. After a successful surgery, he continued to show great care and concern for the family when Ian became ill again and when Milo, Oscar’s brother, was diagnosed with a brain tumour. Ryan is driven to make life outcomes better for brain tumour patients and their families. His extensive work in both research and surgery is testament to that commitment.

His clinical practice covers the full spectrum of general neurosurgery with a subspecialty in brain tumours. His research focuses on advanced brain tumour models, residual therapy-resistant glioma cell populations, local therapeutic treatments and surgical technologies and devices. He peer-reviews for several journals and grant award committees and has published numerous papers.

More information on Ryan’s work

Lisa Dawson

Trustee

Lisa has been a friend of the Hughes family since 2016 and was honoured to be asked in 2022 to represent OSCAR’s PBTC as Social & Digital Trustee.  Both Lisa and her family have taken part in numerous fundraising events and are dedicated to raising awareness of paediatric brain tumours.  Lisa is a social media content creator, blogger and writer and lives in York with her husband Joe and three children, Ella, Max and Leo.

Alice Beckwith

Trustee

Alice has been involved with OSCAR’s PBTC since 2020. She passionately supports the aims of the charity and believes that if the charity can change one life for the better, then it is a success. Working in the public sector for 18 years, Alice has helped transform Adult and Children’s Social Care Services by ensuring heavy investment in preventative services. This is why the impact OSCAR’s work will have on families is at the forefront of Alice’s motivation to be involved.

As partnerships trustee, Alice is keen to involve businesses, trusts and individuals in the work OSCAR’s does and show them the role they can have in providing the base for the charity to continue to expand its projects to help children with brain tumours.

Sarah Jane Gray

Trustee/Secretary

Sarah has over 20 years of experience in the pharmaceutical and surgical sales sector and is very familiar with the importance of medical advancements for better patient outcomes. She believes research is essential for improving diagnosis, treatment and prognosis for all children with brain tumours and hopes OSCAR’s PBTC can offer much needed funding to help push the boundaries in finding better ways of curing this devastating disease. Sarah’s focus as a treasurer will ensure record-keeping and accounts meet the conditions of the statutory bodies and compliance with regulatory organisations.

Holly Dixon

Trustee

Holly is mother to George, diagnosed with an ATRT brain tumour in 2022, and works as a primary school teacher. She believes that action to support others -however small- can make a massive difference.


She brings real-life experience of what it is like for a parent navigating everyday life, the NHS, the education system, questions from people and a lively young child with different needs.

meet the oscar's team

Sam Marino

Trustee

Marie Hughes

ChAIR OF THE BOARD OF TRUSTEES

Marie founded the charity with her husband Ian, who passed away in 2020. She is the mother of four boys. Two of Marie’s sons have died from different types of brain tumours – Oscar who was 9 and Milo who was 5 years old. She is determined to help find better treatments for brain tumours so other children won’t have to go through what her own sons and her family have.

Marie is Chair of the Board of Trustees, working closely withe the team on strategy and vision. Marie lives in Copenhagen with her two other sons, Sebastian and Lucas, and works as a Risk Manager on the Danish railway.