have you had radiotherapy?.....

have you had radiotherapy?.....

Postby plum » Tue Nov 15, 2011 12:48 pm

....and if so, knowing the after effects, would you recommend someone to have it?

sorry that I seem to keep coming back to this question. it may be purely hypothetical in my case since funding is uncertain. But a very kind relative has offered to help pay towards the costs IF IT WILL BE OF BENEFIT. I could try to remortgage my home for the rest.

But I am worried about the after effects. I am already on monthly injections to try and control the thing so perhaps it is better to just stay on the route that I am on?

Am confused. Can anyone share opinions / advice? When I talk to radiotherapy or endocrinology people in the hospital they seem not to see the problems and they just want to get rid of the lump regardless of what the procedure does to the rest of the body and brain .....

Thanks

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

Postby member_32033 » Tue Nov 15, 2011 6:26 pm

Hi Plum,
I've had stereotactic radiosurgery - has the same purpose as ordinary radiotherapy and I think can have the same long term effects. I'm now nearly 15 months after the procedure.

I still have had no change in the tumour although you are told that radiotherapy can take several years to work on Pituitary tumours. Short term effects - suddenly after two or three weeks was very tired for a couple of months and occasional nausea. However, the nausea was controlled through medication. Longer term effects - my short term memory is not as good as it was. There is a very good PF brochure on Pituitary Surgery and Radiotherapy which discusses the different types of radiotherapy and gives a balanced view on the potential pros and cons.

I'd highly recommend going back to your endocrinologist and radiotherapy oncologist for further discussion. Important to weigh up the potential benefits against the possible side effects. I'm still not sure if I made the right decision! I'm still on the monthly Lanreotide injections and also am on Hydrocortisone. Sometimes I feel as though I am no further forward as my energy levels are still poor, but at least my IGF1 is down to normal levels thanks to the injections. I still don't understand why radiotherapy can take so long to work on pituitary patients in comparison to other tumours. Any medics out there who can explain it, I'm sure we would be very interested to read it.

It's tough trying to make these decisions. Hope this helps a bit.
Very best wishes,

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

Postby plum » Thu Nov 17, 2011 9:30 pm

Thanks, again!

and indeed, if there is a medical person reading this then please do explain about the delayed effect.

It does not sound very nice to be on constant 'watch' for signs that the tumour is going. Nor for the signs that the pituitary is going either. although if i understand correctly, the risk of losing the remaining pituitary function is supposed to be less with stereotatic than with traditional?

Looking forward to hearing from others!
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Re: have you had radiotherapy?.....

Postby member_32033 » Sun Nov 20, 2011 6:45 pm

Yes, with regards to stereotactic It's supposed to be better at targeting the tumour very precisely and better all round. It's a bit tough having to wait around so long hoping it's going to work but I suppose you just have to try and stay positive. Have just been told I don't need another MRI til next autumn - hooray! That will be the longest gap so far since this whole thing started for me in 2007. However, the oncologist reckons it just looks the same as after the second surgery.

I did manage to run one mile on Thursday - first time I had been running since February!
Very cheering to do something a bit energetic - collapsed in a heap for the rest of the day!

By the way, not all Anglo Belgians with acromegaly have green faces!! Now that would be a rare breed .... No jokes please about chocolate, chips, Tintin or Monsieur Poirot..... although first prize goes to the first person who can think of another famous Belgian.
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Re: have you had radiotherapy?.....

Postby plum » Sun Nov 20, 2011 8:08 pm

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

Postby member_32033 » Thu Nov 24, 2011 5:24 pm

Well done!!!! Not many people can name a famous Belgian apart from the usual
candidates like Poirot ....

Best wishes,

From the not so famous half Belgian
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Re: have you had radiotherapy?.....

Postby plum » Mon Nov 28, 2011 8:56 pm

i just heard this afternoon that i'm likely to have stereotatic radiotherapy fairly soon.
now to think up questions to ask the radiographers.
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Re: have you had radiotherapy?.....

Postby member_31784 » Tue Nov 29, 2011 11:49 am

Good Luck Plum.

I had similar radiotherapy in 2008 for five weeks. The worst part for me was the prep, I had an allergy to the MRI dye! and having the mouthguard fitted took some tweaking after that things weren't too bad. The first three weeks were fine, the worst bit was having to go everyday but then (as the radiographers said would happen) I began to feel a bit weaker and sick (the hospital immediately prescribed anti-emetics) and my head became very hot and hair began to fall out in two places, one a complete circle and one a perfect square!!! Actually no-one noticed apart from me and my hair-dresser. Each session is very short about 10 mins and the Marsden were very efficient only once did I wait more than about 15mins for my turn. I'd say it took about another 8 weeks to recover (well as much as pit patients do). I am now having an annual scan which is amazing considering they seemed to be every four months at one time. I do replace all hormones but then did before my radiotherapy anyway, that's why the decision to have the therapy was relatively easy as in no way was I going to risk another lot of surgery. All the best. K
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Re: have you had radiotherapy?.....

Postby plum » Tue Nov 29, 2011 3:16 pm

Hi K
thanks for your reply.
It is always useful to hear about what other people have experienced.
i looked up cyberknife online and it all seems very jolly and somewhat suspiciously like advertising since they all seem to be enjoying themselves....
that's fantastic that you don't need to have scans so often now. so in your situation at least it was a positive procedure.

I hope that your hair has now grown back?
Funny how I concentrate on that rather than on the more serous thing ie the possible impact on the pituitary gland itself. which is so worrisome to me that i cannot even consider it at the moment.

But yes there is all the pretesting and fitting and mask and scan etc beforehand isn't there? i had my first ever scan last year in october just as they were getting the chilean miners out of the ground and apparently each one took about 30 minutes to get out so i just thought of that as i was lying in the machine. but even so keeping still for that long was not easy and my leg threatened to twitch!

best wishes

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

Postby member_32033 » Tue Nov 29, 2011 6:22 pm

Hi Plum,
If you are having stereotactic radiotherapy I guess you will have a meeting first with the radiotherapy oncologist beforehand? They'll tell you what to expect on the day and likely side effects. I was well looked after - there tends to be quite a lot of waiting around before the radiotherapy takes place as the team have to carry out safety checks before it's done. The first bit of the day will involve having the frame fitted. When the radiotherapy itself takes place you really can't feel it. By that time I was so pleased to get it done that the procedure itself didn't really worry me too much - just keen to get home!

Short term effects - felt a bit sickly every now and then for a couple of months.My gp gave me some anti nausea pills which helped. Felt very tired after a couple of weeks but again the worst of that wore off after two months. A little bit of hair loss but nothing drastic - nobody else noticed. All grew back. One strange thing - my underarm hair stopped growing and is now very sparse - no great loss there! I would say that my short term memory not so great now but that could be because of my pituitary problems anyway. My pituitary gland has not stopped functioning yet and I am 15 months on from the radiotherapy, but I guess it will stop at some time anyway as it was damaged in the second surgery in 2009. I was given a phone number to ring in case I had any worries in the weeks and days after the procedure. In fact the duty radiotherapy oncologist rang me the next morning to make sure I was ok - pretty good service!

Best wishes to you,

Anglo Belgian
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