Proton Beam Therapy

Waiting4Sunshine1 · 2024-04-26T10:50:32+00:00

Hi everyone, just wondering if anyone can share their experiences of proton beam therapy? DC is now eligible for this for treatment on his brain tumor (pituitary gland and cerebellum) having exhausted chemo options and developed side effects to inhibitors which have been amazing but means we've reachd the end of the road. I am particuarly concerned with long term issues like cognitive impact and the risks of stroke/second tumors down the line. I would appreciate any insight you may have. Thanks so much in advance.

Allthingspeaches · 26/04/2024 13:04

I had proton beam to my head (nasal cavity, around eyes, base of brain). I'd had chemo, and surgeries. I think it was great in that I'm NED 8ish years later.

So the treatment itself is painless but over time your skin degrades and starts to breakdown which is painful. It also involves a mould of your face being made with which you are strapped down to the table to ensure the precision of the treatment. I found that hard to cope with and I was an adult. I know they sedated the little children but I don't know about older children. To be honest they probably would have given me a sedative if I'd asked.

It did come with side effects. I had a secondary cancer which thankfully was caught early and treated with surgery. This was 2 years after the proton beam. I have ongoing issues with my eyes but I don't mind considering if I'd had regular radiotherapy I would have been blind. I also lost 75% of my eyebrows which again I don't mind too much as there's make up for that and it would likely have happened with conventional radiotherapy. There was a risk of damage to my pre frontal cortex but that didn't happen thankfully.

Ultimately I weighed up the risk if I did nothing (high risk of recurrence), if I had conventional radiotherapy (blind etc) and it was worth it to me.

All the best to you DC and the family.

Mannikin · 26/04/2024 13:12

My daughter had proton beam therapy age 6 for an orbital tumour. She has lost most of her eyebrow and lash on that side, has slightly worse vision, needed cataract surgery but overall she is doing brilliantly 4 years on considering she had cancer. She managed the mask and being immobilised on the table incredibly well but if she’d struggled she would have had an anaesthetic. We had to go abroad for it (all nhs funded thankfully) but I think it’s more available in the UK now. Wishing you lots of luck.

Castlereagh · 26/04/2024 13:53

If they're focusing on the area the tumour is in rather than whole brain and spine, the risks of side effects are much lower with protons. How old is your DC? As pp said, it's quite hard being nailed to the very hard bed but it's usually quite quick and for my DC immediate side effects were minimal so able to enjoy the rest of the day. I guess you have to balance the risks with the risks of the tumour. For us it was easier - do this and the majority live for 5 years, with a decent quality of life-don't do this and he will definitely die in a few months.

Castlereagh · 26/04/2024 13:54

Also if it helps with your decision making, the supportive care/ play therapy/ school etc at the proton centres is outstanding.

Epictantrum · 26/04/2024 23:32

My DS had proton beam therapy at Manchester 2 years ago, but not for a brain tumour. He had a high dose for longer than average, and there were no immediate effects, but the fatigue after a week or 2 was profound, he went from walking about, having a meal, going to the cinema after his first few doeses, to barely able to get out of bed by the end. It did get better, but took several months and it was much harder than I expected.

Original poster

Waiting4Sunshine1 · 28/04/2024 15:28

Everyone thank you so much for your replies, I am so so grateful.
@Allthingspeaches I am so pleased to hear you are doing well now, NED sounds amazing, but the secondary cancer is scary, did your team continue to monitor you closely so they could spot any such growth?
@Mannikin glad to hear your DD is doing well especially when she had it so young - yes we would now be seen at UCLH so amazing we don't have to go to Florida/Oklahoma! We were told the UK is now leading the way in facilities.
@Castlereagh my DC is 11. He has relatively slow growing tumors and responded well to inhibitors, as a result the option of PBT hasn't been on the table, we've been trying to 'buy time' before we got to this point as my understanding is the older the child the less risky it is. The other option is more chemo, he has been on so many chemo combos (7 years worth) and none have been successfull and all completely floored him so I feel desperate at the thought of putting him through more chemo...and its likely that at the end of the year we will be looking at PBT again...
@Epictantrum thanks for sharing your DS's experience, poor love and poor you as at the time you just don't know if it will get better, how is he doing now?

OP posts:

Allthingspeaches · 28/04/2024 15:34

Waiting4Sunshine1 · 28/04/2024 15:28

Everyone thank you so much for your replies, I am so so grateful.
@Allthingspeaches I am so pleased to hear you are doing well now, NED sounds amazing, but the secondary cancer is scary, did your team continue to monitor you closely so they could spot any such growth?
@Mannikin glad to hear your DD is doing well especially when she had it so young - yes we would now be seen at UCLH so amazing we don't have to go to Florida/Oklahoma! We were told the UK is now leading the way in facilities.
@Castlereagh my DC is 11. He has relatively slow growing tumors and responded well to inhibitors, as a result the option of PBT hasn't been on the table, we've been trying to 'buy time' before we got to this point as my understanding is the older the child the less risky it is. The other option is more chemo, he has been on so many chemo combos (7 years worth) and none have been successfull and all completely floored him so I feel desperate at the thought of putting him through more chemo...and its likely that at the end of the year we will be looking at PBT again...
@Epictantrum thanks for sharing your DS's experience, poor love and poor you as at the time you just don't know if it will get better, how is he doing now?

Yes! They keep up with you so well. I was having 6 monthly scans and follow ups for years. Any issues that occurred (eg. Cataract, etc) I was referred onto the relevant teams. I'm now on annual review which is a good thing in my opinion. I have all the contact details and can ask for a sooner appointment if I have a concern/issue.

Allthingspeaches · 28/04/2024 15:35

Waiting4Sunshine1 · 28/04/2024 15:28

Everyone thank you so much for your replies, I am so so grateful.
@Allthingspeaches I am so pleased to hear you are doing well now, NED sounds amazing, but the secondary cancer is scary, did your team continue to monitor you closely so they could spot any such growth?
@Mannikin glad to hear your DD is doing well especially when she had it so young - yes we would now be seen at UCLH so amazing we don't have to go to Florida/Oklahoma! We were told the UK is now leading the way in facilities.
@Castlereagh my DC is 11. He has relatively slow growing tumors and responded well to inhibitors, as a result the option of PBT hasn't been on the table, we've been trying to 'buy time' before we got to this point as my understanding is the older the child the less risky it is. The other option is more chemo, he has been on so many chemo combos (7 years worth) and none have been successfull and all completely floored him so I feel desperate at the thought of putting him through more chemo...and its likely that at the end of the year we will be looking at PBT again...
@Epictantrum thanks for sharing your DS's experience, poor love and poor you as at the time you just don't know if it will get better, how is he doing now?

UCLH are fantastic at head and neck so that's great that you're already with them.

Original poster

Waiting4Sunshine1 · 28/04/2024 18:24

@Allthingspeaches thats hugely reassuring. Thanks so much for your feedback!

OP posts: