ADT Treatment ,

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Posted 09 Oct 2015 at 21:33

Well five months on from my post 'Ignoring Prostate Cancer' I am now on hormone therapy. I had a bone scan and mri and my last PSA was 35, up from the 30 which prompted the start of my prostate cancer journey. In between I had a reading of 32 so a small rise over 6 months.

The results of the scans show the cancer is outside the prostate but not in the bone as yet, and is xadvance prostate cancer and the treatment has started. A week on thge cyprostat then my first 3 month injection of triptrelin acetate which was painless really.

So what about side effects. I have only had about 3 and 1/2 weeks on the treatment so far and am aware of the possible side effects thgast might happen. Before starting treatment I was fine and in fact felt as well as I ever had recently.

Side effects at the moment are minimal. Some days a bit of sweating or feel a bit hot for a short while but no mood problems with that.

The only other problem I have which is annoying me is frequent urination. Before starting treatment I could go 3 hours even 4 hours without wanting a wee and only got up once at night. Since starting the treatment I now have to go 3 times a night which doesn't help a good nights sleep and the longest time without a wee is 2 hours or less. Inconvenient to say the least.

I asked my cancer doctor about it and she thought it might be the cyprostat and once the course ends the problem would go. She didn't seem too sure about the cause though so i wonder if anyone else experienced this side effect and did it clear up.

Other side effects are fairly minor at this stage. I keep up my exercise routine and watch my diet. As mentioned in my earlier post I am full time carer for my wife who has dementia. In some ways maybe it helps as I don't get time to worry about whether I have a side effect and just have to get on with things.

User

Posted 11 Oct 2015 at 01:14

Barry has hit the nail on the head, I think. Unless you are drinking many, many pints each evening you are unlikely to generate enough urine to get up more than once or twice during the night. The problem is probably psychological then, and the best treatment is relearning to trust your bladder and not your mind. Ibuprofen and paracetamol would fit with this as they block the pain signals to the brain so maybe they block the 'full bladder' signals too?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 11 Oct 2015 at 21:45

You can test yourself but will need a number of cups / jugs. Each time you get up in the night, wee into a new jug. Tomorrow morning, measure the content of each jug or cup in turn in a proper measuring jug.

A normal bladder can hold between a third and half a litre of urine. Are you passing half a litre every time you thought you were bursting?

For John, the penny dropped while camping. He keeps a small juice bottle in the tent rather than having to go to toilet block in the middle of the night. Took a while to realise that even if he got up 3 x a night, the bottle (one of those 330 ml Oasis bottles) was still not full the next morning. His mind was telling him he was full when he wasn't.

You can get bladder re-training from your local incontinence clinic, usually via a GP referral.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 11 Oct 2015 at 21:50

Originally Posted by: Online Community Member

Since being on HT I have regularly got up 7/9 times each night and even since starting RT it has been that often. Very occasionally I get 2-3 hours sleep but rarely, nothing seems to help as I stop taking liquids at 5-00pm and all that does is give me less to pee out and I still get up the same number of times.

I was a bit careless and didn't read this properly first. If you are not taking any fluid after 5pm you could be making it worse. During RT it is really important to keep hydrated and your description above sounds more like bladder irritation than anything else. Check with the nurses at your Rt appointment - I am sure they will advise that you should drink something in the evenings. Also ask if it is okay to have cranberry juice as this soothes the bladder lining.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 12 Oct 2015 at 14:06

Just to throw something else in that has been mentioned on the forum before - My OH was given some sleeping tablets for an unrelated shoulder pain. As he was in such a deep sleep he slept through the night without having to get up, nor did he wet the bed. the GPs seem reluctant to continue prescribing these sleeping tablets, so my OH takes half a tablet every other night, at least then he is getting some good nights sleep. Itreally makes a difference.

Alison

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Posted 09 Oct 2015 at 23:29

Dear Ellares

This night time urination is a big problem for my OH and was the first pointer towards diagnosis of the disease.

Unfortunately it has not cleared up although treatment has included Tamulosin tablets, which do work for some men.

Others will advise different things to try, I hope you will find something that works as you know, this night time problem is knackering and not conducive to recovery.

all the best

Alison

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Posted 10 Oct 2015 at 01:05

I have to get up at least 2 and sometimes 3 times a night though fortunately I normally get to sleep again quite quickly. Disruption is minimized if a urine bottle (or in need 2) is kept close by the bed. Reusable plastic bottles of a similar shape to the cardboard ones used in hospitals can be purchased.

I have been on Tamsulosin for many years. In my case at least it doesn't reduce frequency but it does help with the flow. I know this because when I was away for a few days recently I forgot to pack the capsules and when I needed to urinate the flow was slow and weak.

I only have coffee (decaff) in the morning and decaff tea at other times and don't drink after 7.30pm generally.

Barry

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Posted 10 Oct 2015 at 06:50

strange how you all seem to have been offered some help, whenever I mention it to my onco all I get is nothing back basically, I can be up every 90mins during the night, that's with no drink after 20.30, I do take a bottle of water upstairs as the hot flushs make my throat dry, as said before would have moved hospitals until recent developments
even moved into spare bedroom so as not to disturb rlass on the days she gets up early for work

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 10 Oct 2015 at 18:58

I think that frequently weeing at night is normal, at least for me it is . I was getting up at least 5/6 times each night for 18 months before I went to the doc and was put on Tamsulosin for 3 months, it did not help, I went back and put on another tablet as well but in the mean time was sent for a blood test which resulted in me being diagnosed with PCa in February this year, have been on HT since then and now at end of fourth week of RT.

Not sure what to do myself and cannot think how to help you guys but just thought I would share my problems as well.
At least some of you only get up 3 times.. That would be heaven for me.

Cheers Chris/woody

User

Posted 10 Oct 2015 at 21:15

Thanks for the quick responses. My increased frequency of urination seems as ifcit could be related to the hormone treatment as puffingbilly also had a further increase after starting treatment. It doesn't sound as if additional medicatiokn is much help and I am also fortunate enough to be able to get back to sleep quickly.

I did by accident find my own part solution. Before any diagnosis I was getting up once a night to wee. I had been an upholsterer and so had some back problems now and again if I did extra hard work. One day my back was sore so when I went to bed I took a small ibufren. Lo and behold I didn't get up for my nightly wee. I never thought anything of it then some time later the same thing happened. I then tried it out without a bad back to see if it did stop my nightly wee. It did. I have done

this now a few times but not often as I am not a pill taker.

It is not foolproof but I have repeated the experiment twice now since starting hormone therapy and the first time I got up once instead of three times and the second time I still went twice, but had a better night.

I had mentioned this phenomenon to a couple of doctors but they were not really interested. Obviously I am not a doctor and am only relating my own accidental discovery.

Meanwhile I will see if the frequent weeing gets better now I am at the end of my cyprostat tabs which was my cancer doctors possible cause.

Thanks again and it is good have this community which is a great help and support.

User

Posted 10 Oct 2015 at 21:57

Well I might just try the ibuprofen tablet idea, worth a go is it not.

Last week one of the RT staff suggested that taking paracetamol might have some effect as well so now there is two ideas to try.

You never know!!

Cheers Chris/woody

Life seems different upside down, take another viewpoint.

User

Posted 11 Oct 2015 at 00:10

A few further thoughts. You should not need to pass urine more frequently during the night than during the day. Sometimes when we wake up there is a thought that we should pee, maybe in case we have to get up to do so before long.

Many years ago now, due to frequency, I was referred to a urinary clinic. Apart from being told to avoid caffeine, it was suggested that cranberry juice would be beneficial. I was also told I should start a bladder retraining programme. I was instructed to hold on as long as possible before passing water whwnever I felt the need and to note down times and amounts. (Could only do this at home because of convenience and need to use a measuring jug). I then had to give figures to the clinic.) There was a small improvement but with passing years my bladder has become weaker as often is the case with advancing years.

Barry

User

Posted 11 Oct 2015 at 01:14

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 11 Oct 2015 at 21:33

Lyn, last night I took 2 ibuprofen tablets and actually only got up 4 times, which for me is an achievement. I shall be trying 2 more tonight to see if there is a repeat of same.

Thanks for your last reply it is very informative and will bear it in mind. Not sure how to retrain the bladder as I always try to,hang on as long as poss during the day and am always desperate to go and the volume dose not change. During the night I try not to get up and go for a wee but again the urgency makes it impossible to get back to sleep and if I get up, go to loo and return I usually go straight back to sleep.

Let's see what tonight brings

Chris/woody

Life seems different upside down, take another viewpoint

User

Posted 11 Oct 2015 at 21:45

A normal bladder can hold between a third and half a litre of urine. Are you passing half a litre every time you thought you were bursting?

You can get bladder re-training from your local incontinence clinic, usually via a GP referral.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 11 Oct 2015 at 21:50

Originally Posted by: Online Community Member

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 12 Oct 2015 at 08:49

Thanks Lyn, the guys at RT were the ones that told me to stop at 5-00pm but I will double check today if they fully understand what they have asked me to do and poss suggest that if I carry on drinking as I do through the day (up to 2 litres) it may help. I will also get some cranberry juice to try as well and give the measuring a go too.

Thanks once again

Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 12 Oct 2015 at 09:24

i was getting up 4/5 times a night .i told the rt nurse and she said try and not drink anything after 6.30 pm,because you need your sleep,dont sleep too well on ht anyway but it varies,if i go 3or 4hrs without getting up i think i do well.

User

Posted 12 Oct 2015 at 14:06

Alison

User

Posted 12 Oct 2015 at 15:24

How does frequency and output compare day and night? There was a time when (not PCa related), I was in a very stressful situation and frequency increased dramatically though in my case mainly during the day and I believe this is a quite frequent reaction to stress as is being very cold. For some men having RT could be stressful.

Another thought is that coincidentally a man may develop a urinary infection. My urinary clinic wanted a urine sample mid stream to check. It is perhaps unlikely in this case but maybe an idea to get it ruled out.

Barry

User

Posted 12 Oct 2015 at 17:04

Hello. My OH rarely got up in the night before he had his brachytherapy. After treatment he was getting up a lot. But he was different to you in that he couldn't get the flow to start, did a trickle and no more would come. Obviously half hour later he would be up again. Anyway 9 months on he is much better, the consultant said he must keep drinking little amounts through the night. He also prescribed micrabegron. These help urgency and calm the bladder. Since taking these he only started getting up once in the night. 2 or 3 times a week he sleeps right through. But I always get up in the night and I disturb him, so he gets up (or vice versa!) but once a night is fine. Not sure if these tablets have been prescribed to anyone else, but they seem to help.

User

Posted 12 Oct 2015 at 17:53

Originally Posted by: Online Community Member

..... and I believe this is a quite frequent reaction to stress as is being very cold.

Ah yes, |i forgot about the cold. It can be cold in the tent, and if John has been on the motorbike or we are staying with his sister (who wouldn't put a fire or radiator on even if you had icicles on your nose) he has to get up during the night for a wee.

Some warm bedding might help then?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 12 Oct 2015 at 21:00

Hi , just a word of warning about sleeping tablets , my GP gave me some sleeping tablets to help me get to sleep as the anti-depressants he had prescribed me to help me deal with the side effects off the Zoladex, were stoping me getting to sleep which had never previously been a problem . Well after a couple off bed wetting episodes I stopped using them , bizzarly my night time continence had never been a problem getting up maybe only once or twice a week and dry both day and night both immediately post op and during and after radiotherapy .

oh the joys of cancer treatment

Nigel

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