10 year old brain tumour

[boxochocsaway]

My best friend's DD was diagnosed with a brain tumour 2 weeks ago. 2 days after diagnosis she had around 75% of the tumour surgically removed but the surgeon was unable to remove the remainder. She was released from hospital 1 week after surgery and the doctors are supposed to be telling them the biopsy results early next week but have said it is very likely she needs chemo.

I'm supporting my best friend as best I can but I was hoping anybody knowledgeable could tell me what to expect next. I don't know anybody who has had chemo - how brutal is it? If she needs chemo does this mean the tumour realistically is cancerous?

My friend’s son was diagnosed age 7, he’s now 12. They have had support from TOM’S Trust and the brain tumour charity

tea and listening and hugs help a lot!

No advice but hugs x

Her mum is obviously in bits. I can't get my head round how OK/even pretty well she currently looks now that she has mostly recovered from the surgery but she obviously isn't OK if there is some tumour left and they are doing chemo.

So my only direct experience of chemo is with DM (lymphoma) although I have a colleague whose 3 year old was having chemo at the same time. We were both slightly surprised that the chemo our loved ones had was not as harsh as we expected (don't get me wrong, it still wasn't nice). The expectations we had were from tv/movies, but cancer care and chemo medication has moved on a lot in recent years, and "chemo cocktails" are bespoke to the patient now, to minimise the amount of toxins and their side effects.

Best of luck to your friend and her daughter going forward. They'll need a friend, cook, dog walker. Tea and sympathy is wonderful, but sometimes practical help and ready meals are wonderful too.

Sometimes even non-malignant brain tumours might need chemo, because where they are growing in the brain means they could cause damage, eg pressing on brain stem or optic nerve. Where in the brain was the tumour?

A brain tumour diagnosis is devastating, I'm so sorry for your friend & her daughter. Even non-malignant tumours and their treatment can wreak havoc. My son had a non-malignant tumour at 3, he didn't have chemo, but had proton radiation.

Supportive friends are really important & my suggestion would be to not focus on whether it's cancerous or not - although it's natural to want to pigeonhole a tumour/diagnosis. I hope that the treatment goes well.

@BlackSwan my friend has been told the medical team are opting from proton beam radiation instead of chemo - please can you tell me more about your experiences with this? My friend knows I'm asking and is interested in your answer/anyone else with direct experience of this. Treatment will be in Manchester if that makes any difference?

Hi Boxochocs, how old is your friend's DD?

My son turned 4 during his proton treatment - at that time we didn't have proton facilities in the UK so the NHS sent us to Florida for treatment. Because of his young age & given he wouldn't be able to stay completely still during treatment, he was put under general anaesthetic for each treatment, every weekday for 6 weeks. Hearing he would need treatment was very worrying, because he had such a young brain. Hearing he would need so many GAs was also frightening. In reality he (and we all) coped pretty well considering. He experienced headaches during treatment, but didn't lose any hair or have any skin issues as some kids have. Most importantly, the treatment shrunk his tumour (though not immediately - it did take time).
As explained to me - the radiation has an ongoing effect so that when the tumour cells try to divide/multiply, they die.

Of course children can have collateral damage with this.
My son's tumour was on his pituitary gland. This has meant he's needed various hormone replacements.

DS is now 12. He's bright as anything. His vision is good, and he doesn't have some of the negative effects of radiation and multiple surgeries which sadly some other children with his tumour have. He has annual MRIs & provided the tumour remains at bay, I think he has a bright future.
If you or your friend want to PM me please feel free. Or if she wants to speak with someone in real life equally.

Let her know there is a facebook page for families of proton patients if she searches for that also.

The team at the Christie in Manchester are lovely - they have play specialists there to put you at ease. At 10 they may well be able to stay still well enough not to have a GA. Staff will play the child's own playlist or audiobook, there is a playroom with consoles as well as creative arts stuff, drinks and biscuits for parents available. If your friend lives far away they will put her and family up in Staycity in the city centre, there is loads to do in Manchester and kids usually feel well enough to do some activities and sightseeing. They will do an assessment day beforehand to introduce them to the setting, see the machines, meet staff etc. They will also need a mask fitted, this was the only bit that caused my child distress.

My child had 30 sessions and did lose his hair and his appetite, felt tired but no pain, no real sickness, no skin problems. Apparently proton reduces the immediate side effects as well as aiming to minimise some of the long term side effects of traditional radiotherapy.

Thanks for your replies, they have been very useful and I've sent them over to my friend.

@BlackSwan she is 10. Thanks very much for your offer - I think my friend will probably contact you in a few days. @Cuckfancer they are about 2 hours drive from Manchester so they will need to stay over I expect. Staycity sounds good though, more of a holiday type place than a medically environment.

Sorry of course her age was in the title. I’m sure she will manage the treatment well at 10, depending on the child even much younger ones have it without anaesthesia. And it’s great that she’s older and her brain has developed already - the effects of proton and any radiation can be worse for a younger child.

I'm resurrecting this thread to see if anyone has experience with chemo after radiotherapy/proton beam radiotherapy? The team around my friend's DD have explained that the tumour is a mixed cell type, more aggressive than originally thought and that she needs ipatient chemo which will start 5 weeks after the proton beam treatment finishes. My best friend is hoping for any experiences of anyone who has been through similar. She wants to know what to expect. Her DD has felt pretty ill from the proton beam treatment, no appetite, quite a lot of sickness etc.

Do you know what chemo drugs she is having? Ime the Macmillan factsheets about the different drugs weren't very useful for children, v generic and children tend to be given higher doses for their weight than adults. Great Ormond Street have some factsheets related to children. Some drugs for brain tumours in children are highly emetogenic (make you very sick) so it's important to get on top of antisickness meds early, ask for aprepitant if she's allowed.

Child is likely to be very tired, nauseous, might have mouth sores, stomach pain, nerve pain, muscle weakness. The child might get neutropenic in which case any fever equals going straight to hospital for at least 48 hours. My child managed school in between but many don't. In can be hard for chemo to start on time or to get out of hospital as planned, so making plans is very hard and your friend might need lots of help with any other children. Depending on the type of drugs, any hair still left after radiotherapy will go. And many children need tube feeding, if not already in place as they simply can't eat enough to keep going. Sorry to sound bleak, it might be that your friend's DC has different drug combinations.

Thanks for your reply @Cuckfancer . I know one of them is vincristine as I've heard of that before, there were two others but I can't remember their names. My friend's DD is already very thin from the radiotherapy and they struggled to get the anti sickness drugs right.

Vincristine isn't too bad, it doesn't usually make them sick and can usually be given quickly (injected into their Hickman line or port). It can give nerve pain and neuro symptoms like pins and needles but the symptoms go after chemo ends. Most people I have spoken to, their children didn't have too many side effects from the vinc.

If the DD is already thin then she might well need tube feeding, it sounds awful but can be a relief as the pressure goes away from parents and child, and they don't have to think about food.
I'm glad your friend has your support. Chemo is a long bloody slog and lots of people that were around during the initial shock diagnosis/surgery can kind of fall away.

My son had Vincristine and Carboplatin, followed by Vincristine with Cyclophosphamide and Cisplatin. Do any of those ring a bell?

Cisplatin and fluorouracil are the other two we think, although the Team will only confirm the exact combination once closer to the start/after the end of the radiotherapy.

@boxochocsaway how is your friends DD now? Hope she is OK x