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Ht/RT side effects tips

User
Posted 06 Jan 2016 at 09:07

Hi, from a newbi.

After 2 years Active Surveillance, my latest Biopsy has upgraded to 4+3, and yesterday after much deliberation, I have decided to go for HT starting tomorrow, followed by RT in 3/4 months time.

I have read lots on the possible side effects, but can you guys who have experienced it already, give me any tips on how to avoid them.

I still do not have any symptoms.

Thanks.

Dave.

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 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 06 Jan 2016 at 20:26

Surr, I am sorry you found RT so tiring. John had his fractions every morning on his way to work - never missed a day, went to the gym every evening and played rugby on Saturdays.

Chris, I wish we'd known about tamoxifen then but we didn't. John was refused RT to the breasts on the basis that bicalutamide doesn't cause man boobs - whoever said that was mistaken and sadly it is often permanent :-(

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

User
Posted 15 Jan 2016 at 20:50

Hello Pete48

I finished 37 RT session in November. I've not had any incontinence at all, a sore bum and peeing problems but nothing I couldn't handle.

No regrets for me.

All the best Colin

User
Posted 15 Jan 2016 at 21:10

I have 33 sessions coming up soon. I have to say although I've heard of bowel probs , the bulk of people have got through relatively trouble free. Not sure about long term. My issue is the difference between RT to an intact prostate like yours , and RT to a removed prostate area like me. It scares me that without a prostate to absorb the rays, I'll actually incur more side-effects. I have had 3 radioactive dyes injected into me at this point and in March will be having my fourth CT scan. That actually truly worries me in itself. Do you get to the stage where the treatment actually causes more cancer ??

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 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 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

Show Most Thanked Posts
User
Posted 06 Jan 2016 at 13:23

Hi Dave
I'm in a slightly different boat having had a radical prostatectomy already , but I have been on HT for 3 months and am starting RT in April as Salvage treatment ( PSA 2.4 after op ).
You don't say which HT you are on as they can act in different ways to each other. I am on 150mg Bicalutamide per day. It's probably the easiest HT for side-effects. I am very very fatigued and not sleeping. Regular night sweats. Very emotional and tearful. I was impotent anyway after the op but apparently Bical affects erectile function the least.
I haven't changed anything in my life since I got PCa. Some people go on diets and do extra exercise etc. I feel I have a normal diet and walk the dogs daily. My biggest sins are meat and wine but no way would I give them up.
I hope your treatment goes well. Please post and keep us all up to date. Ask anything and download the publications for HT and RT from the site which are excellent , or phone the nurses.
Chris

User
Posted 06 Jan 2016 at 13:34

Hello Dave,

I have been on HT for about 15 months now (9 months to go I think before I come off it).

I had 37 fractions of RT in January / February last year.

RT side effects were pretty much as I was warned about: some tiredness during the treatment, cystitis for a day or two at the end of the treatment, and some change in bowel movement. Not sure of the long term side effects yet ...

HT side effects were again pretty much as expected with the addition that I am very emotional and tearful at times!

Not sure you can avoid these side effects.

If you want more detailed information send me a PM.

Martyn

User
Posted 06 Jan 2016 at 14:17
Hi Dave

I've been on HT (Prostap) since January 2013 only had hot sweats/hot flushes from time to time which have declined recently. Regarding the RT I had some soreness at the rear end which was helped by using aqueous cream, I did have an embarrassing problem with wet f***ts sometimes.

Overall there wasn't anything too difficult to overcome and I hope for the same for you.

Best wishes

Arthur

User
Posted 06 Jan 2016 at 16:10

Hi Chris j,

Thanks for reply.

I start tomorrow on 50Mg Bicalutamide, and in 2 weeks time will have  3mg Triptorelin injection, and then repeated every month.

Hopefully I will still be able to enjoy my holiday in the Algarve in April.

Dave.

User
Posted 06 Jan 2016 at 16:11

adidave, it depends on which hormone you are going to be taking but, if relevant, have they offered you a bit of RT to the breast buds to minimise the problems of man boobs and breast pain? It only works if given at the very beginning of HT so perhaps worth checking with your nurse specialist whether it applies to you.

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

User
Posted 06 Jan 2016 at 16:19

Hi Lyn,

Thanks for info. I am meeting again with the radiopherapist next week to do all the paperwork.  I shall certainly ask.

Dave.

User
Posted 06 Jan 2016 at 16:32

Next week is probably too late if you are starting the hormones tomorrow. Which one are you taking?

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

User
Posted 06 Jan 2016 at 16:35

Ah, just saw your response to Arthur. I would consider phoning the nurse today or tomorrow to ask whether RT to the breasts is available.

As for the holiday to the Algarve, worth asking whether your RT can be delayed until afterwards as you shouldn't expose the irradiated skin to sunshine. We went to Lesvos and then France and then started RT the day after we got back.

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

User
Posted 06 Jan 2016 at 16:40

I was given once weekly 20 mg Tamoxifen to stop breast soreness and/or growth. Early days but so far so good.

Edited by member 06 Jan 2016 at 20:52  | Reason: Not specified

User
Posted 06 Jan 2016 at 17:20
I just wish I'd known about this site when I was in your position.!!

I experienced very quickly hot flushes and latterly night sweats after I went on Zoladex in August 2014.

I was at work when all of a sudden an enormous wave of HEAT exploded down my back from my neck and I was sweating.

My colleagues burst out laughing at my swearing and general discomfort!!!

I had fortunately told the whole dept of my situation and of what to expect. They were really great.

I found RT very difficult. I'm sorry to say that I fluffed at least 30-40% of the 37 fractions.

I was either over hydrated or dehydrated. And I was not alone. Several others had to rush to the toilet towards the end of their treatments and pretend they hadn't so they could go in on schedule. And we were all found out.!!!!

One occasion I got through on my third attempt but that was towards the end.

The point of this is to say don't worry about anything. What ever happens the staff have seen it all before.

They're not embarrassed and neither should any patient be either.

And I soon became fine with it.

Be totally honest any review meeting. About how you feel and side effects.

Do carry spare clothes. At all times. I had at least 2 spare underpants. And a large open necked bottle with a lid.

The folk I met at St Luke's were great. We all got on . And we compared our survival equipment - we all had the same!!

I have become more emotional too. Teary sometimes for no reason. But it's Ok - now.

Be upfront with your family and friends. As above tell them what you've been told to expect. They'll appreciate your honesty.

And they will support you.

I experienced fatigue too. I worked mornings only for until signed off for 2 months towards the end.

If you can't do something then don't. It doesn't matter.

Do it another time.

I was actively encouraged to go for complementary therapy.

Best move ever made. Acupuncture for flushes has really helped.

Sacral cranial for emotions totally brilliant.

A friend is going through HT and RT right now.

He has no HT effects whats so ever . None . Doesn't understand what I'm talking about. But he has seen other men sweating away wiping their brows.

Each person reacts differently. You may sail through your treatment quite fine. But there is much support around . Take it . Don't be alone.

And good luck

User
Posted 06 Jan 2016 at 18:01

I think everyone, particularly my wife wants treatment to start ASAP, and can't imagine breast RT can be arranged very quickly.

Holiday to Algarve has been built into my treatment, RT to start when i get home.

User
Posted 06 Jan 2016 at 20:26

Surr, I am sorry you found RT so tiring. John had his fractions every morning on his way to work - never missed a day, went to the gym every evening and played rugby on Saturdays.

Chris, I wish we'd known about tamoxifen then but we didn't. John was refused RT to the breasts on the basis that bicalutamide doesn't cause man boobs - whoever said that was mistaken and sadly it is often permanent :-(

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

User
Posted 06 Jan 2016 at 20:57

Hi adidave, I started my HT in Feb last year and had RT that finished in Nov.

Since starting HT I have gradually seen the symptoms grow with extreme hot flushes after about eight weeks and at present I get 6/8 during the day and the same at night, I also get cold/chilly spells in between the flushes so it is a case of load the clothes on then strip em off again.

I get tired easily but make myself do things, as it frustrates me to not do anything, and usually half way through I quite enjoy it.

I fall asleep watching the tv at night( never did before) and have developed small man boobs which may get bigger if I am unlucky but I suppose a bra will stop them jiggling around or hide them with a baggy jumper(when not flushing)

Had no real problems with RT except for the wet f***ts and the desperate need to go for a wee on the way home from RT sessions even though I stayed on for a while to have that last empty of the bladder but still had to stop every fifteen mins at layby's and pubs en route. My stools were very loose and often had to rush to the loo about three times each morning before venturing out. This would occur every day and was extremely "urgent" and I had a couple of accidents so be warned!

You could have a word with your GP and get a prescription for a "URIBAG" this is a small pot with a rubber bladder that can be used to wee in and has a tight sealing lid so there are no leakages. It takes about three big wee's and can be emptied when you get back home, washed out and used again.. Very useful .

Since finishing RT the urgent wee's and wet f***ts cease and my stools hav gone back to normal.

At present I still get hot flushes all the time and have been incredibly tearful, when happy and when sad the tears come for no reason, I just accept it now and all my friends and family know what to expect from me.

I am on Zoladex implants every three months which will be for next 14 months, apparently the symptoms remain after you end HT for the same length of time..

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

Edited by member 06 Jan 2016 at 20:58  | Reason: Not specified

User
Posted 06 Jan 2016 at 21:24

Lyn, thanks. I was signed off because I was exhausted and frankly I decided I had to come first. Work were very good.
My employers too were keen for me to recuperate. The RT was difficult on occasions but I lived and worked only 5 mins from each - v lucky compared with many with long journeys.

Re side effects - before acupuncture average 25-30 flushes a day. Fan on constantly at work.
Got used to playful banter from colleagues !
Wear light cotton layers - drink loads of room temperature water. Cold is bad.
Avoid alcohol.
I gave up alcohol 2 days before RT. Thought nhs spending fortune on me - don't add own goals on getting better.
Also as on HT - no testosterone - bone thinning . Alcohol interferes with calcium in urine - and being slender higher risk osteoporosis . Do not miss the booze at all.

User
Posted 06 Jan 2016 at 21:38

A small number of patients cannot manage all fractions or have to stop early. However, if it is at all possible, it is best to attend the full RT course as determined by the oncologist without breaks to gain maximum benefit.

Barry
User
Posted 12 Jan 2016 at 02:12

I am convinced that regular exercise and being fit can help counteract some of the effects of HT and RT.

Barry
User
Posted 15 Jan 2016 at 20:00

On the RT side effects, I am becoming increasingly concerned about my treatment decision. It seems that almost everybody has accidents and I'm seriously considering changing, at this very late stage, to surgery. I just can't face fouling myself. I think I could tolerate urinary incontinence better.

In any of the literature I have read up until my decision faecal incontinence hardly got a mention. I now read, in an American research paper that there is massive under recording of this issue - understandably so given that it is something you just don't want to talk about.

This forum is very honest and forthright and I think I am learning things that official literature on the subject doesn't mention. I have read of accidents, people carrying spare underpants and trousers, special disposable shorts that enable you to take them off without spreading waste over your legs.

Have I been mislead by the official literature? It seems that there is a strong likelihood if not a certainty that people suffer faecal incontinence after RT. Or am I being alarmist.

I'd love to hear from somebody who hadn't had an accident or serious bowel effects.

User
Posted 15 Jan 2016 at 20:50

Hello Pete48

I finished 37 RT session in November. I've not had any incontinence at all, a sore bum and peeing problems but nothing I couldn't handle.

No regrets for me.

All the best Colin

User
Posted 15 Jan 2016 at 21:10

I have 33 sessions coming up soon. I have to say although I've heard of bowel probs , the bulk of people have got through relatively trouble free. Not sure about long term. My issue is the difference between RT to an intact prostate like yours , and RT to a removed prostate area like me. It scares me that without a prostate to absorb the rays, I'll actually incur more side-effects. I have had 3 radioactive dyes injected into me at this point and in March will be having my fourth CT scan. That actually truly worries me in itself. Do you get to the stage where the treatment actually causes more cancer ??

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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