Ht/RT side effects tips

User

Posted 15 Jan 2016 at 21:26

Hello. The radiographers are excellent at checking how you are each day and there was for me a comprehensive weekly review.
The problems you refer to , started for me about 3 weeks in. I had advance warning that something might happen with a build up of gas 'rumbly tum' and then one morning an accident - whilst I was at home.
I could have avoided this if I had taken a loperamide tablet as soon as I thought I would have needed it. The downside was that I dehydrated for treatment that day , so if it happens ,then you need to rehydrate by drinking copious amounts of water before treatment. I had several bladder scans which were fine.
But the centre were great. They've seen it all before and are able to give sound practical advice and support. And I had no further problems.
I was prescribed normacol ( sachets daily ) which were good which I took in conjunction with the daily loperamide. They worked really well.

Towards the end of the treatment there were occasions when I thought I might have an accident whilst out but never did.
Having the survival bag of spare clothes was a safety net. The only time I used the underpants was on the 34/37 fraction . By then my bladder was so irritated that I had to ask for a bottle mid way through the session.

I must stress that I was able to work for 7/9 weeks (including Christmas/ new year breaks and midweek start/ finish) and had no accidents at all whilst there. I learnt that I couldn't go far away from a toilet towards the end but I coped. And the effects wane quite quickly once the treatment finishes.
It was the fatigue I found most draining.

You learn to check out where the toilets are wherever you are and advise people that you may need to dash away without explanation.

A good friend of mine had similar experiences with radical prostatectomy . He had male nappies in boxes at his house but I think that this was exceptional.
Any treatment to the pelvic area is bound to cause upset and disruption . I had an upset with the fiducial markings 24 hours later and my friend with his biopsy.

Talk to your healthcare team - mine were very upfront with everything. They were spot on with the nature of side effects including the concern you have raised.
You'll have to decide if this inconvenience for about 5-7 weeks is worth it against any downside a RP may produce.

User

Posted 15 Jan 2016 at 21:28

I had 8 months of HT (Zoladex), with RT (External Beam with Carbon Ion boost) over the last 8 weeks of it back in 2008. Strangely I became constipated for a time, perhaps due to overcompensating for possible 'runs'. After the RT I resumed my normal diet and stools returned to normal. However, there followed a period when I passed wind this was occasionally accompanied by a very small amount of mucus. I called this 'wet farts'. The mucus was also with the normal stools sometimes. This lasted with decreasing frequency for up to about 6 months post RT. Yes I did keep some spare underpants and have some wipes readily available for some of the time but were seldom used. Overall this was not a problem for me. Like all side effects the degree varies from one man to another. Can't say how I might be affected in the long term but knowing what I know now would not put me off having RT if I went back in time. Each individual has to factor in unquantifiable but potential side effects of various treatments before making his treatment decision.

Hope it works out well for you.

Edited by member 15 Jan 2016 at 21:39 | Reason: Not specified

Barry

User

Posted 15 Jan 2016 at 21:45

Thanks chaps for the really helpful responses. I get my HT pills on Monday so I think this has concentrated my mind a bit and I am having last minute doubts about my choice (HDR brachtherapy but with 3 weeks EBRT). I guess I do have the advantage that, being an old codger of 67, I'm retired so I can stay at home by the toilet! I also live in a bungalow so no stairs!

I'm full of admiration for those who work on through the treatment like Surr33.

One thing that is at the back of my mind is this business of RT side effects occurring a year or even more down the line.

I suppose we will all have doubts about our decision. It's quite a momentous one and every treatment has its advantages and its drawbacks. I might nip down to Boots tomorrow and buy 100 packs of imodium as a precaution lol! The low fibre diet sounds quite good. I've always like fried egg sandwiches on white bread.

User

Posted 16 Jan 2016 at 09:09

Hi Pete, I am 66 and to be honest all the side effects relating to weeing and wet f***ting are minimal and just something else to be aware of especially before venturing out each day ( depends what time your treatment is) getting up earlier to sit on the loo onece,twice or three times can get over the problem and if there is a feeling to pass wind I suggest don't until sat on a loo.. Make a note of all stopping places to and from the treatment centre, the peeing seems more imperative afterwards as you will be full of water.
I finished my RT at beginning of Nov last year and returned to "normal" after 2 weeks but was told by urology nurse that it can take up to six months for the frequency/urgency to wee to abate.

From my perspective I am happy to have gone through the treatment with minimal problems.

Best wishes for whatever you decide.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 16 Jan 2016 at 10:04

Hi Guys,

Two things I found very helpfull when getting through RT don't seem to have had much of a mention:

1 - DIET, it is way back in 2008 that I had RT, but before the treatment started I was given an official NHS diet sheet recommending a low fibre diet. This was quite counter-intuitive in that it was contrary to most 'healthy eating' advice. There was a total ban on green veg, beans, fruit and salad, whole meal bread, brown rice and jacket potatoes. We were encouraged to eat white bread, white rice, mashed potates properly peeled, together with chicken, fish nothing fried, and most surprising Jaffa Cakes were recommended!

It is emphasised that this diet was recommended just for a few weeks during and after treatment.

2 - EXERCISE, my Consultant Radiologist did a research study, which showed that those blokes who carried on as normal and tried to do extra exercise such as walking/jogging etc during treatment experienced fewer side effects than those who hid under a duvet feeling sorry for themselves.

I have just finished my second spell on HT and am looking forward to this spring, hopefully as the sap rises I shall start looking at the ladies again, I have a vague memory of something called sex.

But apart from loss of libido HT hasn't been too bad at all this second time round.

Dave

User

Posted 16 Jan 2016 at 10:49

On the low fibre diet, I was diagnosed with diverticulitis back in 2012 (apparently most people have it to some extent as they get older). A high fibre diet was recommended but they also said that your bowel might need a rest every now and then with a low fibre diet. I haven't found this but it does make quite a bit of sense. I think I'll suggest that I start this as soon as I start the RT.

User

Posted 19 Jan 2016 at 15:32

Another thing on HT - there seem to be a huge variety of time frames for HT. I was told that I would be on 150 mg Bicalutamide for 6 months (24 weeks to be precise). My brother was on it for 20 months, others are on it for 12 months etc etc.

I am aware that in some advanced cases it is virtually a life long treatment but I do find myself wondering what the criteria are for locally confined cases.

Not that I'm complaining. I'll take 6 months!

User

Posted 03 Feb 2016 at 09:59

Just a quick update. I have now completed 4 weeks of the HT tablets, and have had no side effects at all, yet.

I have a meeting with the Consultant at Southend Hospital on the 19th, to discuss Temp. Brachyatherpy or High dose RT.

So far so good!

User

Posted 03 Feb 2016 at 16:50

We are travelling along a similar path adidave9! Just seen the onco today and have now decided on the dose painting RT - 20 sessions in all.

15th March next milestone when I have gold markers inserted into the gland. 2 weeks after that I'll have the treatment planning session.

I'm just over 2 weeks into HT. I have had a few mild hot flushes, some slightly emotional type feelings but haven't actually burst into tears yet. So far I seem to be getting off lightly although the onco did say, in answer to my question about breast soreness, that it usually kicked in quite a bit later.

User

Posted 03 Feb 2016 at 18:27

Hi, the side effects will cut in soon and I am sure there will be tears for no reason whatsoever, even my oncologist said that now I know what it is like to be a woman!!

I found that, in particular, two weeks after hormone implant I was at my worst as far as emotions go and found myself crying or with tears in my eyes for any reason, even to adverts get me occasionally. As long as those around you are aware then it is easier to live with.

The hot flushes happen day and night so not much relief from them with some cold ones thrown in as well.

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint.

User

Posted 03 Feb 2016 at 18:39

I'm 4 months into salvage HT and RT coming. I'm on 150mg Bical. Yes it's strange how each area has its own little concoctions and theories and doses and timescales. I should have been on 3 months prior RT then 3 months after RT. I cancelled the RT , so will now be 6 months prior and 3 months after. Then wait and see what happens. I was offered a HT / RT /Bracchy route at one point instead of surgery but that was involving 3 yrs on Bical. There's no nice way really I'm finding. Nasty cancer needs serious medicine to hold it at bay.
Best wishes
Chris

PS. Yes I'm emotional but to be honest I was before. I've lost a lot of strength and muscle tone. I've not lost my libido but think my wife might be taking them :-)) No breast growth or soreness but have got swelling in armpits which hasn't been looked at yet. Yes I'm getting the odd flush here and there. I drink alcohol and eat spicy foods all the time and to be fair they are not bothering me in the slightest. Brain fog is real , but we both suffer with that :-))

Edited by member 03 Feb 2016 at 18:45 | Reason: Not specified

User

Posted 03 Feb 2016 at 18:50

Chris/Woody,

I like reading your comments re HT . Of all those that are posted here , yours are the closest to my own experiences .
Unexplained tears over both sad and happy things.
Being hot and cold - problems with sleep etc.

And yes it's best to let those around you be aware of what they could expect.

John

User

Posted 04 Feb 2016 at 13:05

John - glad you mentioned being cold. That has kicked in the last day or two. Last night just couldn't get warm. Central Heating on, woolly pully and fleece on top of that!

This morning - feel fine.

Just comparing notes with my brother (on 150 mg Bicalutamide for 20 months). He did not get the emotional stuff at all but he has suffered quite badly with the breast pain and soreness.

User

Posted 10 Feb 2016 at 11:01

Just noticed, over the last few days, a good side effect of HT which I haven't seen mentioned before. I am only 24 days in to bicalutamide (150 mg daily for 6 months) but I have noticed a step change in my flow. It wasn't that bad before (my PCa being mostly asymptomatic) but the stream has definitely increased in force (and even distance lol). Presumably some shrinkage of the tumour relieving pressure on the uretha?

Shame as this will probably go into reverse when I start RT in April.

User

Posted 18 Feb 2016 at 13:30

6 weeks into HT, just had my 2nd injection. Still no side effects! Also had my latest PSA. It has dropped from 9.9 to 2.45.

Still waiting for my next consultation, on 1st march, to decide High dose Brachytherpy, or high dose RT.

User

Posted 19 Feb 2016 at 17:18

Just an update of my side effects (150 mg Bicalutamide daily). Been on them 5 weeks. Hot flushes still occur but of little or no nuisance value at the moment. The slightly down beat emotional type spells have levelled off a bit but I do feel very tired a lot of the time. Just kicking in is a slight pain in the breast area but tolerable so far.

User

Posted 17 Mar 2016 at 09:28

10 weeks now. just had my 3rd injection. My most notable side effect is the Hot Flushes. Mostly at night, so waking up 5/6 times.
So not too bad. I have been accepted for HDR Brachytherapy, sometime in the summer.My next HT will be a 3-month one.

User

Posted 17 Mar 2016 at 13:09

I have now got a date for the start of my 20 sessions of ERBT. This is the dose painting system that has just come out of clinical trials. Clatterbridge do seem to be very focussed on minimising side effects. I have already had gold markers inserted and, on Tuesday this week I went for my planning session. I had a catheter inserted for both the CT and the MRI scans. I gather this was done to get a clearer picture of the uretha and its position - again all down to an attempt to minimise side effects.

What I find interesting is the variation between treatment centres. A friend had 20 sessions of ERBT but no gold markers and no catheter when the scans were being done for his planning. He ended up with severe proctitis which required admission to hospital it was so bad but he is over it now.

On the Hormone Therapy I think I may be getting off lightly. The low moods are not really an issue after nearly 9 weeks. The hot flushes are tolerable and not that frequent but the breast tenderness and slight enlargement is a bit of a nuisance. I'm conscious of it all the time and although it is not that sore unless you touch it, a bit like an itch, you can't help touching it! I have noticed I am losing a bit of strength so I am trying to keep active and using some light weights to help counteract this.

It's been said many times but the variables are endless in terms of slightly different procedures between centres and definitely in the reaction to the various treatments.

User

Posted 25 May 2016 at 17:54

Latest PSA is 0.43. 2 side effects are Still the Hot Flushes, but not much sweating: and some ED probs. Doctor prescribed Viagra, but not too successful, so has now prescribed Cialis, but I will have to pay. He has suggested Tesco Chemist, may be cheaper.

User

Posted 25 May 2016 at 18:11

I've just self funded Cialis as I'm already getting 8 per month Viridal injections for free. It might be risky but I'm just buying off the Internet from a site I've used in the past. Definitely the real drug but generic made in India where you can buy them over the counter. I recently paid £40 for thirty 20 mg tabs. That is 30 full event doses but I am splitting them in four and having 4 months 5mg daily. Already improving things noticeably.

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