Radiotherapy - how long does it take to work?

Radiotherapy - how long does it take to work?

Postby member_32033 » Fri Feb 17, 2012 11:12 am

Hi Folks,

I just wondered if we could ask people to comment on how long it took for their radiotherapy to have a really positive effect on their Pituitary condition. I'm now 18 months on from my radiotherapy and am beginning to feel a bit better but that has been only the past two months or so. Also, no-one knows if that is the effect of the radiotherapy or the monthly injections of Lanreotide for acromegaly. My last scan in September showed no change to the size of the tumour which was still there. I'm due my next scan this coming autumn.

Other patients often ask me if my radiotherapy has started to work yet and it's very difficult to give them a straight answer as the medics don't seem to know yet. Does anyone know why radiotherapy seems to work quickly for other illnesses but seems very slow for pituitary patients? I appreciate that all patients are different but it would be interesting to see if there is some kind of average time for most patients.

Thanks,

Anglo Belgian
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Re: Radiotherapy - how long does it take to work?

Postby plum » Sat Feb 18, 2012 3:02 pm

HI

what a relief that your tumour has not grown.

just before i had my radiotherapy in december 2011 i did some (non exhaustive) research on what's likely to happen. i noticed on the consent form that i signed that in fact the purpose of the radiotherapy in my case was to stop the tumour from growing and damaging the optic nerve. ie the main purpose was in fact nothing to do with getting pituitary function back to normal. that seems to be a possible added benefit. but i may have misinterpreted something along the way. and of course we are all different therefore everyone's consent form for radiotherapy may say different things.

i too have a hard tme when people ask me if i am better and what i have started to point out that it is very hard to measure 'non-growth' becasue 'not growing' cannot be measured after only 5 days or 5 months but that they'd need to wait years before concluding that the tumour has not grown. almost like saying how long is a piece of string.

the research shows a more than 90% chance of the tumour not growing post radiotherapy.

unfortunately there are not enough of us for the clinical studies and often the researchers combine poeple with different types of tumour (both functioning and non-functioning) in the same study, which confuses the interpretation on the impact of radiotherapy on biochemical action.

and then they measure 'size' differently so that complicates the conclusion on whether or not the tumour has shrunk.

bearing all of that in mind there is some evidence that some tumours shrink post radiotherapy and some even shrivel up and disappear eventually. wheee.

i'm only interested in growth hormone producing tumours myself and there is a chance that levels of GH and IGF-1 return to 'safe levels' eventually post radiotherapy. but in about half of the cases this is only with medication eg octreotide / lanreotide. ie it seems as though the radiotherapy makes the tumour behave itself and finally respond to the injections where before it was not.

the counsellor who i see has lots of experience of radiography adn she explained that the radiotherapy damages the DNA of the cells which affects the ability of hte tumour cells to replicate themselves and hence for the tumour to grow. maybe because these tumours are so slow growing is why it takes so long for them to show impact of radiotherapy. i don't know: just a guess.

sorry for wittering on.....
and yes, would be good to hear the experiences from others.

best wishes

Plum
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Re: Radiotherapy - how long does it take to work?

Postby member_32033 » Tue Feb 21, 2012 6:16 pm

Hi Plum,

Thanks for your comments. Yes, it really becomes quite difficult to unscramble whether it's the radiotherapy beginning to work or the Lanreotide if your tumour stops growing.
My Lanreotide was taken away for part of last year as the medics thought the radiotherapy was beginning to work, but my IGF1 etc went up pretty quickly as soon as I was off the injections. After going back on the injections the IGF1 results were back in the normal range.

Best wishes,

Anglo Belgian
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Re: Radiotherapy - how long does it take to work?

Postby plum » Wed Feb 22, 2012 6:21 pm

oh...so sorry to hear about your IGF-1 levels going up. what a bummer.
these tumours really are stubborn aren't they?
but don't giveup: it may yet weaken in the future, if the research is reliable.
and at least your levels are within the normal range now.

much as i don't particularly enjoy having the injection i cannot imagine not having it now becasue i felt so rubbish before i started having them, a year ago.
did you feel any different when you were taken off the lanreotide?

all the best

plum
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Re: Radiotherapy - how long does it take to work?

Postby member_32033 » Fri Feb 24, 2012 10:36 am

Hi Plum,

Yes, when I was taken off the injections last spring for several months, within about a month or so I began to feel really unwell again. Queazy, daily headaches and very tired.

As soon as I was back on the injections I felt a gradual improvement. I still get phases where my stomach reacts badly to the Lanreotide. In fact, spent this Wednesday glued to the bathroom! However, in general the benefits of Lanreotide outweigh the odd stomach problems. Most patients seem to be able to tolerate Lanreotide the longer they are on it.
If it can keep my IGF1 and GH stable, then the occasional 'bathroom' day is worth it!

Best wishes,

Anglo Belgian
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Re: Radiotherapy - how long does it take to work?

Postby plum » Mon Mar 12, 2012 1:43 pm

Hi AngloBelgian
I'm just back from seeing the neurosurgeon and I remembered to ask her why it takes so long to show an effect of radiotherapy compared with eg cancers. She said that it is due to the rate at which the cells of the tumour replicate. She said that becasue benign tumours replicate more slowly than malignant tumours, it therefore takes longer to show that the cells are no longer replicating. Does that make sense?
all the best
Plum
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Re: Radiotherapy - how long does it take to work?

Postby member_32033 » Wed Mar 14, 2012 5:20 pm

Hi Plum,

Thanks very much for relaying back the information - yes, I suppose that does make sense.

I hope all went well with your appointment and that your results are coming out well.

Best wishes,

Anglo Belgian
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Re: Radiotherapy - how long does it take to work?

Postby plum » Thu Mar 15, 2012 10:50 am

hmmmmm...

...well......she compared the scans from january with the one from a year ago, just after transphenoidal surgery..... and the thing has grown.

i know that the main point of lanreotide is to control the hormones but still some people find that it also causes the tumour to stop growing don't they?

beginning to understand why they thought radiotherapy was important.
and i suppose am beginning to understand why i still cannot wear my rings / bangles / shoes etc ....

oh well.....plodding along.

Plum
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Re: Radiotherapy - how long does it take to work?

Postby member_32033 » Thu Mar 15, 2012 11:53 am

Hi Plum,

I'm sorry to hear the tumour has grown. However, take heart as we are always being told the radiotherapy can take some time to begin to shrink the tumour. Very annoying though for you when you have been through the surgery and the radiotherapy. As patients it seems us acromegaly people have to wait such a long time for things to begin to work, it really can be very tough.

I'm a bit further on than you (radiotherapy now 18 months ago) and my tumour has just stayed the same, but maybe the combination of the lanreotide and the radiotherapy are stopping it from getting bigger for me. So lets hope yours will soon start to shrink.

Sending you supportive thoughts across the airwaves!

Very best wishes,

Anglo Belgian
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Re: Radiotherapy - how long does it take to work?

Postby mac » Tue May 29, 2012 4:29 pm

Hi my daughter has acromegaly, she was diagnosed at 26 yrs old she had 2 surgeries to debulk the tumour,external beam radiotherapy followed quickly.the tumour was a giant macroadenoma aggressive and invasive,the fist year a small shrinkage, 4 years down the line no change. She had octrrotide cabergoline etc, non of it was working, she went on to pegvisamont and her levels were normal after a month, that was about about 2/3 yrs ago the tumour has not got bigger, which we are so happy about, so in all nearly six years, they told her it would take 5 years for herto turn a corner and they were right, we are only just seeing more good days, she has now had to go on thyroxine, but she has perked up quite a bit and has it seems to me more energy, her thyroid levels were so low. Take care
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