have you had radiotherapy?.....

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

Postby plum » Wed Nov 30, 2011 10:59 am

hi Anglobelgian
I just had a message from the neurosurgeon to make the first of the pre-appointments for Tuesday. I am just about to go over and leave my GP a printout of the email to keep him informed.
All seems to be happening a bit quickly but i suppose once a decision has been made there is no point in hanging around??.
gulp.
will start now on my list of questions.
Thanks for your support guys.
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Re: have you had radiotherapy?.....

Postby member_31784 » Wed Nov 30, 2011 8:09 pm

Hope it goes well for you Plum. Suggest you take someone with you if possible as two heads are always better than one, particularly for the first meeting. I don't usually bother, my illness, my problem! but was very grateful that my husband came with me to the consultation for this and was there at every treatment. K
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Re: have you had radiotherapy?.....

Postby member_32033 » Thu Dec 01, 2011 1:04 pm

Hi Plum,

Good to hear your pre - treatment appointments are coming through. I'd agree that it's a good idea to take along someone even if it's just to make sure you have remembered to ask all those questions you have in mind. My other half pulls faces at me if I've forgotten something vital ....

Yes, I sympathise with it feeling a bit scary beforehand. Let us know how you are getting on and I hope you are being given time to make sure you feel you have all the info you need.

Best wishes,

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

Postby plum » Wed Dec 07, 2011 9:01 am

hi and thanks both of you for the advice to take someone along.

my sister came and she was excellent as a support for remembering questions to ask but importantly for writing down all the answers so that we could then read and discuss afterwards.
the neurosurgeon was really lovely and explained very clearly.
the website for cancerresearchuk was very useful in terms of suggesting questions to ask.

this is an exercise in redefining 'success' and 'cure' and in managing expectations isn't it?
apparently the aim of the radiosurgery is to stop the tumour from growing further (as opposed to getting things back to normal). i checked some peer reviewed resarch papers and they indicate that there is over 90% chance that it does not grow any further post radiosurgery. then of course there is a chance that it will shrink and a chance that it will disappear eventually.

but in terms of also reducing hormone levels the chances seem lower but it is difficult to conclude becasue often the research teams looked at different types of tumour together. and then, in terms of getting hormone levels to within 'safe' levels that seems to be about 40%, and some of those will be with medications. so it seems as though sometimes the radiosurgery makes the tumour respond better to the injections. i did not do a thorough research since i don't have access to all the available medical literature.

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

Postby member_31784 » Thu Dec 08, 2011 6:44 pm

Glad you appointment went ok.

You expressed things very well, its all about managing expectations and to some extent redefining "normal".radiotherapy is not a "cure" but for me stopping the tumour growing and threatening my sight again was as good as a "cure". Best of luck. K
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Re: have you had radiotherapy?.....

Postby plum » Mon Dec 12, 2011 3:40 pm

just back from the clinic.
had a CT and a very quick MRI. was waiting for all the noises to change gear as they do but it was a shortened version today.
the face mask is actually quite comfortable.
not sure what i will find to think about while being 'zapped'.
could try and memorise a poem perhaps?
anyone got any ideas?
cheers
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Re: have you had radiotherapy?.....

Postby member_31784 » Mon Dec 12, 2011 7:29 pm

Actually its very quick, I generally thought about the coffee and macaroon I would have as a treat, was near lovely coffee shop in Kings Road. All the best K
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Re: have you had radiotherapy?.....

Postby plum » Sun Jan 08, 2012 9:26 pm

yummm coffee and macaroon. sounds delicious treat.
i had a fabulous back massage after 2 of the 3 sessions.
that was excellent and surpringly necessary and definitely to be recommended .... especially if offered as part of the treatment package at the centre.
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Re: have you had radiotherapy?.....

Postby icky » Wed Oct 30, 2013 8:55 pm

I had Stereotatic Radiotherapy 12 months ago. I'd had problems several years ago during attempted surgery to remove my prolactinoma so, eventually, after several years, the radiotherapy was decided upon after a previously docile tumour started to grow again. The therapy (every weekday for 5 weeks) was uncomfortable, boring and less than pleasant but it did come to an end, eventually. Since then, my prolactin levels have been falling steadily from sky-high to levels, while still very high, are giving a good indication that the tumour is shrinking again. This is, hopefully, ongoing as I haven't had a test for several weeks now.
The main problems that I've had since the therapy is a short-term memory loss which is quite pronounced at times. Worse though is the fact that I have a very disrupted sleep pattern. not sleeping sufficiently at night (3-4-5 hours) and dropping off to sleep at odd times during the day, everyday, sometimes at the most inconvenient times, so much so that, at times, it's bordering on the disabling. I can't, for certain, blame the radiotherapy for this as I also have heart failure and a semi-paralysed diaphragm. It's a good contender though.
Query - Who's Jacques Brel ??
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Re: have you had radiotherapy?.....

Postby plum » Thu Oct 31, 2013 4:01 pm

Hi Icky

good luck with managing the sleep disruption and short term memory problems.

if due to the radiotherapy then it should clear up. i think that it took about 18 months before i was able to say with any confidence that my thinking skills are improved (but not yet back to pre-tumour level). either new pathways were created or something repaired itself.

i still have funny sleep pattern in phases ie a couple of weeks very disrupted and then a couple of weeks ok. it's better however than it was forthe 12m post radiotherapy. sometimes i am aware that my body is asleep and resting yet my mind is racing around all over the place having wierd thoughts beyond my control. not sure if that is due to radiotherapy or the tumour itself; i tend to think that is the tumour playing up. but of course this is based on no scientific evidence whatsoever.

however i still get occasional blood blisters in my mouth. do you get those?

re jaques brel:
http://www.youtube.com/watch?v=za_6A0XnMyw

enjoy

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