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User
Posted 15 Oct 2019 at 15:18

Hi diagnosed with advanced prostate cancer 17 Sept.


     Just started hormone treatment first with Cyproterone 50mg 2 tabs twice a day, then followed by Decapeptyl SR 22.5mg on 30th Sept at Sunderland great it lasts for 6 month, but some side effects are unusual to understand the tireness seems logical, but weepyness just surprised me by the intensity if i'm happy or sad i cry, then a few hours later I'm feeling back to normal, will this side effect ease off as time goes by? 


Any comments or advice on coping with emotions

User
Posted 23 Oct 2019 at 17:58

I'll trade you the weepiness for the hot flushes.

User
Posted 19 Aug 2020 at 18:13

two and half years into HRT, hot flushes galore, wet farts and a couple of runs to the bog!!! when I get the hot flushes its my body telling me that the treatment is working!!! However my hair has grown back, positivity help me through my diagnosis and treatment & still helps me today!!


 


remember the sun always shines, but the clouds get in the way  just learn to move the clouds away


 

User
Posted 15 Oct 2019 at 20:37
It's a completely normal side-effect of HT. It may or may not ease off. Everyone has different reactions to HT.

Best wishes,

Chris
User
Posted 16 Oct 2019 at 00:01
Emotional side effects which some men experience receive little mention compared to more physical side affects. However, a minority can be affected by HT in a number of ways and in a minority of cases their personalities can be so changed that their partners feel they have changed so much that they are like different people.
Barry
User
Posted 23 Oct 2019 at 16:07

My husband is a year into HT and is weepy, gained weight, fatigue, no muscle mass, etc.  It has never gotten better but he has learned to live with the symptoms. If HT is the only treatment plan you will need consider it a blessing!  For many it does not keep the cancer from progressing.  Wishing you the best!

User
Posted 03 Dec 2019 at 17:33

With goserelin injections (implants) the side effects I’ve noticed are hot flushes, fatigue, loss of muscle power and putting on weight around the midriff. I’m also becoming breathless walking upstairs - so I’ve stopped walking upstairs!


After three months I’ve still to try to become more active - maybe that’ll help. They say it should. 


Did you mention you’re in Sunderland? I spent three formative years there a lifetime ago. Still have fond memories.

User
Posted 03 Dec 2019 at 22:44

Hi Gwtheyrn, we've lived in the north east for forty years only times we've gone into Sunderland was to go to the empire, now all my scans, Chemo etc have been at Sunderland Royal, Now I'm just hormone i'll revert to Belmont near Durham best part my travelling will cut by half.


I'm afraid i'm the opposite with the breathing I walk dog and have to go up a steep hill, so like an idiot I try to go as I used to then I'm bent over double at the top gasping for breath, and wonder why I can't do it as I used to.


Take care

User
Posted 04 Dec 2019 at 13:13

Hi Heenan, I'd welcome tips on how to lose the paunch. Like you I've been 34" around the waist years for but since HT I'm now 38" and 18 pounds heavier.


I'm doing loads of walking and daily push ups to combat the muscle loss.


Finding it difficult to stop snacking between meals something I never did before, I know this would help if I cut it out.

User
Posted 04 Dec 2019 at 13:44

There's really no magic to it. Consume fewer calories than your body burns and you'll lose weight!


Like others here I've gained a significant amount of weight in the 16 months I've been on HT. The main problem for me has been fatigue preventing me from doing all the walking I used to do. This lunchtime I washed the car and felt completely shattered after doing so, and it's hardly major exertion. Thank goodness I'm due to finish my HT in February. Can't wait!


Cheers,


Chris

Edited by member 04 Dec 2019 at 13:45  | Reason: Not specified

User
Posted 05 Dec 2019 at 21:45

Originally Posted by: Online Community Member
Andy, Any chance of a steer on which scales to buy please


The one I bought is:
https://www.amazon.co.uk/Clinically-Validated-Composition-high-precision-measurement/dp/B0033AGBVQ/


I avoided ones that link to phone, because I tend to keep things like this much longer than any phone support is likely to last, but many people do prefer ones that have phone apps, possibly via the cloud.


I actually ended up buying 3 of them for use in different places, and they do closely agree with each other. I also do occasional skinfold fat measurements (using Jackson Pollock 4-site equation method), and that normally agrees to within 1 percentage point too.

User
Posted 26 Jan 2020 at 14:13
Well this will be my last post for awhile; my head has come to terms with my condition, the appointment with the radiotherapy team should have been cancelled when the Chemo failed, being emotional and hot flushes are now just a part of me.
Now Christmas with its chasing is over life is returning to a nice steady tempo, only check up appointments with Urology and repeating 24 week hormone injection. Time to plan a holiday somewhere warm, as Boots will insure me at a reasonable price.
See you for now
User
Posted 23 Apr 2020 at 17:37

Managed to get our holiday between Urology appointment and Hormone injection found out today my PSA had dropped to 0.583, Decapeptyl must be working well, so just keep living with emotions and hot flushes

Edited by member 23 Apr 2020 at 17:38  | Reason: Not specified

User
Posted 23 Apr 2020 at 23:55
Really pleased that you managed to get a holiday before lockdown. Good news on the PSA result as well 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Apr 2020 at 15:45
I used to like just going off for a day on the high fells in the lakes, or helping out with the local gamekeepers on the fell, what seems to happen is if i'm climbing a bank and can keep chatting as we're climbing I have no problems, but if they put their foot down and increase the pace or the bank steepens and I don't slow a little then, first of all I get more breathless than I used to, next the tears start to well up, and its time to back off and go at my relaxed pace, settle my self,
and its okay, I think I just don;t have the stamina reserves to push on, if that makes sense?
User
Posted 28 Apr 2020 at 16:08

Originally Posted by: Online Community Member
So What causes it in the first place.


A chemical response - similar to the moodiness of adolescents, some women's pre-menstrual mood swings and the emotional swings associated with female menopause. You are, physically, going through a menopause and your body is feminising. Add in the complication of the emotional impact of being told you have cancer and it can be a shipwreck. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Aug 2020 at 18:38

I have worked hard and my fitness is the best it has been probably for at least 10 years. The hot flushes have not been too bad mainly at night. and during the hot evenings a little sweating but if all I prefer that than a wooden box.


 

User
Posted 26 Oct 2020 at 10:34

How do people deal with the after effects of the hot flushes? I've been on hormone therapy for about a year now - 6 monthly injections. For a few weeks after an injection and for a few weeks before the next, I get episodes that really knock me sideways for up to half an hour. Last night I had two or three in quick succession as I was sitting watching TV and they really hit me. Anybody got any ideas or is it just a question of accepting that this is what happens in my case and just learning to cope with it? 

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User
Posted 15 Oct 2019 at 20:37
It's a completely normal side-effect of HT. It may or may not ease off. Everyone has different reactions to HT.

Best wishes,

Chris
User
Posted 16 Oct 2019 at 00:01
Emotional side effects which some men experience receive little mention compared to more physical side affects. However, a minority can be affected by HT in a number of ways and in a minority of cases their personalities can be so changed that their partners feel they have changed so much that they are like different people.
Barry
User
Posted 23 Oct 2019 at 16:07

My husband is a year into HT and is weepy, gained weight, fatigue, no muscle mass, etc.  It has never gotten better but he has learned to live with the symptoms. If HT is the only treatment plan you will need consider it a blessing!  For many it does not keep the cancer from progressing.  Wishing you the best!

User
Posted 23 Oct 2019 at 17:58

I'll trade you the weepiness for the hot flushes.

User
Posted 23 Oct 2019 at 18:16

No thanks Jasper, I'm getting those aswell during the night, learning with the weepiness if I push to hard then it seems to be worst 

Edited by member 23 Oct 2019 at 18:18  | Reason: Not specified

User
Posted 03 Dec 2019 at 17:33

With goserelin injections (implants) the side effects I’ve noticed are hot flushes, fatigue, loss of muscle power and putting on weight around the midriff. I’m also becoming breathless walking upstairs - so I’ve stopped walking upstairs!


After three months I’ve still to try to become more active - maybe that’ll help. They say it should. 


Did you mention you’re in Sunderland? I spent three formative years there a lifetime ago. Still have fond memories.

User
Posted 03 Dec 2019 at 22:44

Hi Gwtheyrn, we've lived in the north east for forty years only times we've gone into Sunderland was to go to the empire, now all my scans, Chemo etc have been at Sunderland Royal, Now I'm just hormone i'll revert to Belmont near Durham best part my travelling will cut by half.


I'm afraid i'm the opposite with the breathing I walk dog and have to go up a steep hill, so like an idiot I try to go as I used to then I'm bent over double at the top gasping for breath, and wonder why I can't do it as I used to.


Take care

User
Posted 04 Dec 2019 at 13:13

Hi Heenan, I'd welcome tips on how to lose the paunch. Like you I've been 34" around the waist years for but since HT I'm now 38" and 18 pounds heavier.


I'm doing loads of walking and daily push ups to combat the muscle loss.


Finding it difficult to stop snacking between meals something I never did before, I know this would help if I cut it out.

User
Posted 04 Dec 2019 at 13:44

There's really no magic to it. Consume fewer calories than your body burns and you'll lose weight!


Like others here I've gained a significant amount of weight in the 16 months I've been on HT. The main problem for me has been fatigue preventing me from doing all the walking I used to do. This lunchtime I washed the car and felt completely shattered after doing so, and it's hardly major exertion. Thank goodness I'm due to finish my HT in February. Can't wait!


Cheers,


Chris

Edited by member 04 Dec 2019 at 13:45  | Reason: Not specified

User
Posted 04 Dec 2019 at 18:06

I started monitoring and graphing my weight when I started on HT, so I could see what was happening and try and avoid gaining weight and losing muscle. I bought body composition scales so I could see how much of my weight is fat, muscle, other, and proportion of fat which is visceral.


I'm a cyclist, and I've kept that up. My onco is a cyclist as well and we've done a couple of the same events, and even came joint 3rd in one event, just 7 weeks after he'd stuck 18 brachytherapy needles in my nether regions. I think cycling exercise might have reduced some of the side effects from the treatments. (The cold wet weather has kept me in for the last month though.)


I've managed not to lose any muscle on HT by exercising, but my fat is increasing, including visceral fat - it's gone from 9kg to 13kg in last 10 months.

User
Posted 04 Dec 2019 at 18:24

Originally Posted by: Online Community Member


 I bought body composition scales so I could see how much of my weight is fat, muscle, other, and proportion of fat which is visceral.



Andy, Any chance of a steer on which scales to buy please


Cheers


Bill

User
Posted 04 Dec 2019 at 19:16
I’m just simply dreading starting in Feb. Sorry to all you stronger guys enduring it. It’s just simply something I can’t get my head around 4 1/2 yrs after surgery. I’m actually terrified of this next stage and feel shaky every day :-((
User
Posted 04 Dec 2019 at 21:51
I must say, Chris, that I've found HT a lot "less bad" than I was anticipating. Weight gain, loss of libido, and (as you may have read in my treatment thread) a bit of breast growth are the only real side-effects I've experienced, none of which have been particularly hard to live with. When I first started HT I felt as if my head was full of cotton wool for a couple of months, but that wore off pretty quickly. It's been a pretty gentle form of treatment for me.

Do you know what type of HT you'll be having? Injections or bicalutimide tablets?

Very best wishes,

Chris
User
Posted 05 Dec 2019 at 05:49
Will be injectable but not sure which. I did 11 months of bicalutamide way back 4 yrs ago.
User
Posted 05 Dec 2019 at 19:36

I feel like a newbie amongst you gentlemen, I'd lost 8 kilo before I was diagnosed, so a little bit back on will be okay, sorting the tears out in some situations especially excercise just go at 75% then ok, people showing sympathy always gets me. breathlessness same as exercise, even I do want to go up the last hill as fast as I used to before PC me bent over gasping for breath (not good but it's my littie fight back odd times)

User
Posted 05 Dec 2019 at 21:45

Originally Posted by: Online Community Member
Andy, Any chance of a steer on which scales to buy please


The one I bought is:
https://www.amazon.co.uk/Clinically-Validated-Composition-high-precision-measurement/dp/B0033AGBVQ/


I avoided ones that link to phone, because I tend to keep things like this much longer than any phone support is likely to last, but many people do prefer ones that have phone apps, possibly via the cloud.


I actually ended up buying 3 of them for use in different places, and they do closely agree with each other. I also do occasional skinfold fat measurements (using Jackson Pollock 4-site equation method), and that normally agrees to within 1 percentage point too.

User
Posted 06 Dec 2019 at 09:37
Thanks Andy, I'll check it out
User
Posted 26 Jan 2020 at 14:13
Well this will be my last post for awhile; my head has come to terms with my condition, the appointment with the radiotherapy team should have been cancelled when the Chemo failed, being emotional and hot flushes are now just a part of me.
Now Christmas with its chasing is over life is returning to a nice steady tempo, only check up appointments with Urology and repeating 24 week hormone injection. Time to plan a holiday somewhere warm, as Boots will insure me at a reasonable price.
See you for now
User
Posted 23 Apr 2020 at 17:37

Managed to get our holiday between Urology appointment and Hormone injection found out today my PSA had dropped to 0.583, Decapeptyl must be working well, so just keep living with emotions and hot flushes

Edited by member 23 Apr 2020 at 17:38  | Reason: Not specified

User
Posted 23 Apr 2020 at 23:55
Really pleased that you managed to get a holiday before lockdown. Good news on the PSA result as well 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Apr 2020 at 12:51

Thanks I was told last Friday I will now be having Hormone theraphy


 

User
Posted 28 Apr 2020 at 13:53

Hi Pinny, hormone treatment was a begger at first, because of the weepiness side of things if i was happy I cried, sad I cried, If someone said Hi I cried, over time that settled and the hot flushes started now I'm getting use to them also, aswell as wise cracks from the wife and the Macmillan nurse, they're are just part of our lifes now.


Keep safe

User
Posted 28 Apr 2020 at 14:25

Thanks the weepiness is something I am afraid of 

User
Posted 28 Apr 2020 at 14:34

The weepiness has definately eased could have been the wife and friends getting me to talk about it, and it did work as I relaxed about my image, and what I thought people thought about me weeping at times. Now when I'm execising and do to much and start filling up people just tell me to slow down a bit, and the weepiness dissapears as soon as it came

User
Posted 28 Apr 2020 at 14:50

So What causes it in the first place. And exercise  I have taken a decision to virtually call it a day on my Professional side and play more social golf spending more time for me. But could be difficult if I am coaching some one.  

User
Posted 28 Apr 2020 at 15:45
I used to like just going off for a day on the high fells in the lakes, or helping out with the local gamekeepers on the fell, what seems to happen is if i'm climbing a bank and can keep chatting as we're climbing I have no problems, but if they put their foot down and increase the pace or the bank steepens and I don't slow a little then, first of all I get more breathless than I used to, next the tears start to well up, and its time to back off and go at my relaxed pace, settle my self,
and its okay, I think I just don;t have the stamina reserves to push on, if that makes sense?
User
Posted 28 Apr 2020 at 16:08

Originally Posted by: Online Community Member
So What causes it in the first place.


A chemical response - similar to the moodiness of adolescents, some women's pre-menstrual mood swings and the emotional swings associated with female menopause. You are, physically, going through a menopause and your body is feminising. Add in the complication of the emotional impact of being told you have cancer and it can be a shipwreck. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Apr 2020 at 16:20

That's very similar to how my GP described it, with the words of 'welcome to the world of menapausal women and PC chucked in to complicate things' she then talked me into listening to and reacting to my body instead of trying to be a bull in a china shop.

User
Posted 28 Apr 2020 at 17:13

Sounds Lovely climbing in the lakes. I am currently a professional golfer who coaches mainly these days and play about 3 rounds a year. I was going to coach until 2021 retiring at The Open Championship at St Andrew's but with the Open this year be canceled it will be at Royal st Georges next year.  When I knew my PSA  was rising again I made a decision I was going to not work as much but do more for myself. The course I would probably play would be my wife's club that is hilly in the Chilterns so it will be interesting how I go. Since the lockdown, I have been walking around  8 miles a day so my fitness has gone up.  


So It will be interesting how my fitness keeps going.

User
Posted 28 Apr 2020 at 18:30

Yes got used to the Cancer word now after 6 years now, Think you are going ok then it kicks you. Going through the menopause is how My consultant described it, and you are fully correct you have to live your life going forward and keep moving forward learning from history, not dwelling on it,  

User
Posted 19 Aug 2020 at 18:13

two and half years into HRT, hot flushes galore, wet farts and a couple of runs to the bog!!! when I get the hot flushes its my body telling me that the treatment is working!!! However my hair has grown back, positivity help me through my diagnosis and treatment & still helps me today!!


 


remember the sun always shines, but the clouds get in the way  just learn to move the clouds away


 

User
Posted 19 Aug 2020 at 18:38

I have worked hard and my fitness is the best it has been probably for at least 10 years. The hot flushes have not been too bad mainly at night. and during the hot evenings a little sweating but if all I prefer that than a wooden box.


 

User
Posted 20 Aug 2020 at 20:37

Thanks Mark, for your reply, I'm coming up to the end of my second 24 week injection cycle so hopefully I'll follow you on hormone treatment for over two years and still working, one thing seems to happen with me when i have the injection my hot flushes and emotions are worse then they tail off as time goes by until I'm due for the next injection. Like the comment about wet farts its a bugger to have a hot flush and a wet fart at the same time.


Cheers

User
Posted 20 Aug 2020 at 20:41

Hi Pinny, I'm with you hot flushes are better than a wooden waist coat


Cheers mate 

User
Posted 26 Oct 2020 at 10:34

How do people deal with the after effects of the hot flushes? I've been on hormone therapy for about a year now - 6 monthly injections. For a few weeks after an injection and for a few weeks before the next, I get episodes that really knock me sideways for up to half an hour. Last night I had two or three in quick succession as I was sitting watching TV and they really hit me. Anybody got any ideas or is it just a question of accepting that this is what happens in my case and just learning to cope with it? 

User
Posted 26 Oct 2020 at 19:40
Hi DevonHistorian, I think we all have different experience's with the flushes like yourself just after my injection the flushes seem worse tailing off till the next injection. My has given me a little sympathy but has chucked a cold flannel at me, some people have said limit the carbs and another I've heard of was 'sage' but I've never tried it, and another was counting thro' the flush did seem to help me if its any help I've just had my third injection and it seemed easier this time, hope you find your way to cope with the dreaded flushes pretty soon.
User
Posted 26 Oct 2020 at 21:09
Now winters approaching I take myself off into the conservatory for a few minutes till it passes.

Freezing cold in there and they swiftly pass. It's strange how they just come on from nowhere. I was having a filling at the dentist last week and had a full blown hot flush while the dentist was drilling.

The poor guy thought I was having a seizure.
User
Posted 27 Oct 2020 at 00:06

Sage tablets from Holland and barret and evening primrose oil are two possibilities. I tried epo it might have worked but it was hardly a clinical trial. One of our posters SR12 says his dad is using these two and they work. If you do try these two post your experiences here, it may help others. 

Dave

User
Posted 27 Oct 2020 at 11:42

Thanks Dave64diag2018: do you know if he took both together? I asked my oncologist about Black Kohosh but he was dead set against using it. One of the specialist Cancer nurses suggest trying Sage Tea (sounds disgusting) or Evening Primrose Oil. I'll have to get some and give it a try.   

User
Posted 27 Oct 2020 at 12:23

- Sage tablets from Holland & Barrett or most large supermarkets


- Cotton, wool or linen clothing & bedding - avoid polyester and other manmade materials wherever possible


- In some areas, you can still get acupuncture on the NHS if your flushes are related to cancer treatment - if not available on the NHS, it may be worth paying for a couple of sessions as the CCGs would have been unlikely to pay for it out of their budgets if they didn't think it worked.


 


 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Oct 2020 at 18:52
I was lucky enough to have acupuncture sessions via a cancer therapy charity to deal with hot flushes, they really helped for me highly recommended, also help with relaxation etc I was really impressed with the acupuncture. My hot flushes were pretty intense, still get some now despite finishing Zoladex over 2yrs ago - seems like I'm going for the length of time on treatment, 3yrs, to get over all(?) side effects. If you have something like a Maggie's close by ask about acupuncture or GP may know. I needed a letter from GP for the charity to 'prove' cancer treatment, understandably.
Peter
User
Posted 27 Oct 2020 at 22:00

Thank you LynEyre. I'll give that a try and I'll ask if I can get acupuncture.

User
Posted 27 Oct 2020 at 22:02

Thank you Peterco. We have an organisation down here in Devon called Force so I'll check with them to see if I can get acupuncture.

 
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