have you had radiotherapy?.....

Re: have you had radiotherapy?.....

Postby member_32310 » Thu Jun 14, 2018 1:45 pm

Hi
This is my first forum, can I ask has anyone had cyberknife radiotherapy please. I have a re growing macro adenoma, and it has been suggested that because surgery is not an option, I could have this. However I have read about the side effects and its putting me off.
Thank you
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Re: have you had radiotherapy?.....

Postby Pat » Fri Jun 15, 2018 10:06 am

Hi, welcome to our forum.
We have a patient who is also a volunteer for us, who wrote his story about stereotactic radiotherapy in Pit Life magazine (Autumn 2017). I can email you a copy of this if you'd like, and ask him if he's be happy to talk with you?
my email is [url]pat@pituitary.org.uk[/url]

thanks, Pat
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Re: have you had radiotherapy?.....

Postby member_41389 » Sat Jun 23, 2018 8:06 pm

Hi
I had Gamma Knife treatment about 15 months ago - is that what you meant by cyber knife?
If so it has a number of advantages over normal stereotactic radiotherapy. The most obvious are that it's generally done in a day and that theraputic response is expected to be a bit faster (but still months to years).
My experience was check in to the oncology centre at 07:30; frame fitted by 08:00; MRI completed by 09:30 (both without and with contrast agent; CT scan completed by 10:30. Wait until 13:00 - this was for treatment planning since my adenoma got very close to the optic nerve which they were trying hard to spare. Treatment finished by 16:30, frame removed, cup of tea and discharged by 17:30. The frame is a bit weird and is more effective than the mask at fixing your head still and seemed to make the MRI noises louder.
Good luck with the treatment.
Tim
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Re: have you had radiotherapy?.....

Postby plum » Sun Jun 24, 2018 5:17 pm

Hi yes I had cyberknife in 2011.
Each session lasted about 45 minutes and there were three sessions in total.
what side effects have you heard of?
my hair didn't fall out but i did get very sensitive gums. they are still a bit sensitive but much less so.

I didn't feel a thing while the machine was moving around me.
i had to take strong steroids for about a week beforehand which gave me a round face. but that stopped once i stopped the steroids.

about a week before the treatment started i spent a morning at the centre being 'fitted' to the machine. I lay on the bed of the cyberknife and they fitted a wet mesh on my face which then hardened and that's the face mask which is used to keep your head still. it feels quite comfortable. then they used lasers to take all sorts of measurements and i had another mri.

don't hesitate to ask more questions. this is just a quick overview!
where are you having it done?
well done on securing funding. there was a problem in my case since the CCG refused.
all the best
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