Side effects and controling them

User

Posted 17 Feb 2016 at 16:33

Hi all just thought I would post the side effects I am having as information for anyone starting hormone treatment for the first time. I was diagnosed with advanced prostrate cancer in May 2015 with a psa of 136 and a Gleeson score of 9.5. It has spread to my hips, ribs,spine and other bits and pieces. I went on the Stampede trial and am taking Abiraterone first thing in the morning a Steroid with my lunch and Enzalutamide mid afternoon. Also I have a Goserelin injection every three months.

Now the side effects I am personally having, although every one will be slightly different. My hair has gone very fine and soft and I don't need to shave so much in fact it is like bum fluff and it really needs a blade to remove it. I have put on weight lower down my body, I normally have tired periods late afternoon/early evening but it only lasts about an hour, something to watch for if you are driving.

My testacle's and cock have shrunk to such an extent that I need to stand closer to the loo, it also removes any desire or ability for sex. I dream, a lot! not nightmares but very vivid dreams that I can remember when I wake. I have black moods, I suppose it can be described as depression, they can last from an hour or so up to a day but knowing what is causing them helps as I know they will pass

The biggest problem is the hot flushes. During the day its not so much of a problem as I can open a door or a window, its a shame for the other passenger's in the car but that's life. At night its more of a pain, I have found taking the last pills late afternoon helps but the best way of controlling the night time flushes is two sage pills and a lump of hard cheese before I go to bed. Before anyone mentions cheese and dreams I was having the dreams before I discovered the cheese trick. This has almost eliminated night time flushes. The other thing that woke me in the night was the need to go to the toilet at least once sometimes twice a night. Emptying my bladder fully has helped, I was told that sitting down to pee will empty it a lot more than standing up. I do get a lot more full nights of sleep now.

Looking on the bright side at least I have time to put my affairs in order unlike say a hart attack or something. Almost finished the garage then the loft to start on.

Roger

User

Posted 17 Feb 2016 at 17:02

Hi roger

Can relate to all this and I am only on zoladex

Regards

Nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 17 Feb 2016 at 18:00

Hi Roger,

It's been like that for me for over eight years, but it's a hell of a lot better than the alternative! In time,which I'm sure you will have, you may think the same! Good Luck, pal.

AC in Northants

User

Posted 17 Feb 2016 at 18:09

Hi Roger
Like Nidge I can relate to all this too.

I was Dx Dec2014 with psa 199 rising to 234 by the time HT started.
I also started on Stampede J and have been taking enzalutamide since Feb 2015.
S/e mainly hot flushes and fatigue.
I was interested to read your cheese solution to the nighttime flushes and I'll give that a go.
I've just changed from sleeping with a summer duvet to a winter duvet but might need to go back to the former as I waking up more often overheating.
Another problem I seem to be having is very cold feet at night.
I recently bought a monitor that measures my sleep activity (roughly) so I can compare different diets, pillows etc - if nothing else it keeps me amused.
I find the fatigue is worst when I relax ie sit down - usually afternoon/evening but invariably I do snooze an hour intermittently. So I usually stay up till midnight so I have a chance of sleeping.
I do find running still helps me with reducing my fatigue.

I know what you mean about having time to get ones house in order but you know whilst I'm doing the same I've not set myself a deadline and won't until things really start going belly up. At the moment 14 months on I'm still ok (I think). I an however selling parts of my "heavy" collection ( much to my wife's relief) and donating other stuff to museums.

I hope everything goes ok with you for many more years.

Best Regards
Paul

User

Posted 18 Feb 2016 at 07:46

Hi there ,

Yes, I know all about hot flushes too.

I've had acupuncture which has really worked for me.

One tip I had was to gently lift the lower part of your shirt to let out the heat, or as I sometimes do just strip off when at home !

It's covers on and covers off with the duvet at night.

Sometimes though I feel so cold too.

These flushes are not much fun are they? But at least it gives us a chance to keep going. My wife wants me on HT for ever if keeps me alive.

Personally I can't wait to come off it.

Stay strong.

John

User

Posted 18 Feb 2016 at 17:57

Yes the hot flushes are the worst side effect but if it keeps the cancer at bay its worth it. As I said two sage leaf tablets and a lump of cheese to go to bed on certainly seems to limit them to a greater extent. I still get very mild ones sometimes at night but it doesn't always wake me. Lucky I like cheese.
Roger

User

Posted 19 Feb 2016 at 02:06

My OH was having terrible hot flushes with drenching sweats. The oncologist prescribed him another hormone Provera which has worked brilliantly. Unfortunately the patient information leaflet is all about women but at least we know my OH won't have painful periods!

Rosy

User

Posted 19 Feb 2016 at 07:07

Rosy,

I'm glad that the Provera has worked well for your OH.
My Onco was prepared to prescribe this or similar but when I asked about s/e was told that there could be some.
So I'd be having meds to help s/e which could give further s/e. I declined.

I'm coping ok with flushes , sometimes they're not good but since I retired I've found I have fewer anyway.
My record at work was 28 over a 10 hour shift ,the desk fan was on more than it was off. Think my ex colleagues were glad I left..... I think the stress of work was a major contributor to the flushes.

Hope all can go well for you both.

John

User

Posted 19 Feb 2016 at 11:10

Originally Posted by: Online Community Member

Unfortunately the patient information leaflet is all about women but at least we know my OH won't have painful periods!

Rosy

Brilliant!

John was always a warm person - never needed the fire on so I would be huddled under a blanket on the sofa while he sat in his t-shirt. HT changed all that - he had hot flushes but also if he got cold he simply could not get warmed up again. Unfortunately this has turned out to be a permanent side effect for him - we must be 4 years after HT finished but he still gets drenching sweats - particularly when we are dancing - and feels the cold so much. I might suggest he asks the GP about Provera?

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

User

Posted 20 Feb 2016 at 02:52

Well so far we haven't noticed any side effects (but who knows with all the drugs he takes) and I can assure you that he hasn't had a single painful period since he started taking the Provera.

Rosy

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