Proton beam therapy

[hkz]

DS (14) needs to have Proton Beam Therapy due to a recurring neurofibroma in his neck/ chest.

Has anyone had this or has thier child had it? What were the effects? Did it totally wipe them out? How long until they felt ok again?

My daughter had proton beam therapy age 7 - it was harder because she had chemotherapy at the same time and had to go overseas for treatment. But the proton beam therapy itself wasn’t too bad and while we were there she was even well enough to go to a theme park one weekend and enjoy it. Hope it helps your son.

My brother had proton beam therapy in 2018 for a brain tumour when he was 11 (I'm not sure of the exact name but its non-cancerous). He had it in the US as I believe the only options then on the NHS were the US or Germany.

He was absolutely fine and he had it Mon-Fri every week for around 3ish months. The only 'noticeable' effects were from the fact that they had to put him to sleep everyday to do the treatment, but only because he also has cerebral palsy and autism so he won't stay still, and would be a bit groggy after! The only other noticeable thing was small patches of hair loss where the laser went (still hasn't fully grown back). I believe if the laser goes onto skin it can potentially cause a red mark/rash but he didn't seem to have that, a few others at the centre did though. We went to Disney world on the weekends and did activities that he was well enough to enjoy, he just seemed completely normal to be honest

Years later we don't believe he has any long-lasting effects as far as we can tell, although to be honest its quite hard to 100% tell in his case as he has other complex health issues - but nothing 'major' that is so different its noticeable if you see what I mean!

Thank you @Mstxxx @Weepingskies - this is so reassuring

My DS had proton therapy at the Christie 2 years ago. His had 35 high dose treatments, and was on chemo at the same time. His involved his mouth and it did make his mouth sore and he had a raw area on the skin of his cheek for a couple of weeks. He was also very tired after the first week or so and that took a few weeks to recover.

Thanks @Epictantrum - I hope he’s ok now.

proton Beam sounds ok to me- better than some of the other drug based options. Just waiting on some further test results which will probably narrow treatment options further, but PB sounds ok compared to other treatments on offer and to ones he’s had before.

My DC had proton at the Christie, to the brain £ spine so did get tired and lose appetite. Hair loss to the head and pink area at the back of head and spine but fine with aveeno cream! Staff were very kind, there was lots to do/play on whilst waiting and if you are at the Christie there is a very active teenage cancer trust based there with their own recreation area. DC didn't need GA so we were able to do stuff during the day.

They tended to do older kids and teens at annoying times- little kids having GA get the morning slots, adults get late afternoons so someone can bring them after work so we got all the midday/2 or 3pm! But you get a fair amount of notice of the timings .

@Castlereagh thanks- we are nearer to the Christie but not sure how you get allocated a spot, I guess it goes on where you live or maybe just where you are priority wise on the list. Must remember to ask the consultant.
. Hope your DC is doing ok now. DS won’t need GA either so hope he can feel ok in the day, keep up with GCSE work a bit and relax and have some down time too.

If you do get the Christie the proton centre has its own hospital school and they are really lovely people, excellent secondary science teacher!
I think the original idea was that north people would go to the Christie and south to London but I don't know if that's worked out in reality or just depending if there's a slot available anywhere. Hope your boy gets on ok, ours is doing great thank you ☺️