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Long term Zoladex - Zoladex

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User
Posted 14 Mar 2016 at 15:48
Had first injection Zoladex in January 2014. Still on it today. Had my 39 doses of RT in July to September 2014 but carried on with HT as my MRI suggested I could be T3a, and as I only get one shot at this, decided at the time that continuing HT might give me a better chance of beating this thing if any of it has got out into the wild if it was a 3a capsule protrusion.

Two and a bit years on, life is rubbish from the side effects. Had to take early retirement as I wasn't physically capable of doing my job anymore, had several mental issues which needed drugs and serious counselling, but now I'm tired all the time, sleep hours but wake up tired, can't get to sleep in the first place, and any long days or reasonable exercise, wipe me out completely, and the hot flushes are now just silly. Overheating, soaking clothes, or freezing and needing more clothes. Guess what that leads to!

Life just seems total cr*p at the moment.

Anybody out there HT hands on experience of long term Zoladex? Doesn't seem to be any info around.

How are you getting on, do you have issues?

Let me know, like to chat..

Regards

Cjw

User
Posted 15 Mar 2016 at 06:26
Hi CJW. Hubby is on long term HT now. Your body will probably get a little pattern to it. Had three years then a four month break now on it for life. His power serves (hot flushes) did seem to reduce and they are not as prevalent as they used to be. A lot of the issues are I think adapting to the fact your no longer in total control like you used to be. Ht is in control of certain elements but you can take comfort in the fact it is working. Try to view the hot flushes as a power boost short lived and something that will pass. Try clothing which has DMC content. Dynamic Moisture control. It will absord the sweat quickly and dispurse it keeping any odour at bay. Layer clothing is best. Thin layers so you can cool quickly when having a hot flush and then can layer back up when you start to cool down. An example of who makes this stuff is Rohan.Loads of other companies do it to. Buy clothing as suitable for hot climates and ones which breathe fleeces with holes to warm and cool. It will help cope with the side effects in a social situation. Reducing the anxiety.

When your having a good day find some music that makes you smile or relax then ensure you keep it handy for when you feel the grey clouds creeping in.

Work on one hour at a time on a tough day. A grey cloud looming is easier to deal with than letting it get heavy and dark. Clouds get lighter when they rain so allow the occassional tear to flow. Don't punish yourself when it happens just park it pop some music on or a good comedy that brings a smile on the darkest day then go for a walk round the block of that's all you feel you can muster.

Talk to someone. I have a screensaver for tough days reminding me of how far we have come. It has a list of good things that have happened and laughter notes we've shared. It really does help.

H is for Hope and T is for Time.

I hope this gives some help.

Time now for me to get up and see who I can make smile today....

Debbie and Dave

Edited by member 15 Mar 2016 at 06:31  | Reason: Not specified

User
Posted 15 Mar 2016 at 12:01

Great post from Debbie putting these challenges into perspective. I have been on HT for over four years and will continue to be so as long as my battle continues. Having no endpoint I have not sought to manage side effects with any sense that this is temporary and will finish. I wonder if this gives me a different mindset about coping. Over the four years some of the symptoms have got worse, most notably tiredness and fatigue. Used to work long hours, I have had to adjust expectation and indeed have decided to retire this April. I tell myself too that I am 64 this year, not very fit and maybe some of the tiredness is due to aging. I therefore have sought out ways to manage that tiredness so I can get the most of those times when I feel able to do things. I am getting better at this because I see the benefits of getting this right.

I have no libido nor any sexual functioning at all. I also don't have a partner so this does not bother me in ways which I know it could bother others. For me as I have no interest in sex I feel a calm that I can productively use elsewhere. I do recall some years ago when on my own I spent a lot of time looking for a partner and was for ever frustrated at my failings. I don't have those thoughts now so I focus my energies elsewhere.

I sometimes think I have been lucky with side effects. I do not have hot flushes to speak of though sore nipples can be an issue if I catch them. I just try and look up, be positive and get on with my life. I am more emotional than I was though I have always shed a tear or two. My life is emotional and so I try and live in that emotion, I want to feel alive and responsive and tears help that.

User
Posted 14 Mar 2016 at 19:44

Hi cjw you have been on Zoladex longer than me, I started in Feb 2015 but all your side effects are exactly as I have.

I get very lethargic most days but as I have to work long hours I find that once I get started I carry on and it is only when I slow down or stop working that fatigue kicks in. Staying in a positive frame of mind helps rather than let it get to me I kick into second gear and keep going. Sometimes during the evening I start head banging and get told to go to bed, which I often do, too much sleep makes me worse so going to bed early means getting up earlier.

If life seems crap to you because of the side effects try to get positive thoughts going in your head, maybe try to get motivated and do something that you enjoy, do it regularly and then you might start to look forward to things. Negative thoughts are bad and will bring you down, think of the good things, think how lucky you are to be alive. The main thing is that your treatment is at a stable point and if you remain there why worry about things that might happen?

The point being that what "may " happen may never happen so why worry unnecessarily about it?

I Shall be trying the sage tablets this week as my wife has some for her own hot flushes but will be persevering with my HT (not a lot of choice really) whatever side effects I get and have had are part and parcel of the treatment for PCa and I, like John, am very grateful to be alive. Live each day with a sense of purpose, do not waste the gift of life.

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 14 Mar 2016 at 21:36
Chris ,

Let me know how you go with the sage tablets.

Cjw,

I find sleeping patterns can be difficult too. I've established a routine of not attempting to sleep/ close eyes through the day at all.

Then I try to sleep straight through the night. Ha ha , that's a joke. I manage about 2 hours , then wake up with night sweat etc. In total about 6 hours , if I'm lucky.

Emotionally I was very down last week but as Chris says try to keep going. I found that I was ok after a short while by trying to be positive , which is always beneficial.

It's been ok since but I had a BAD day yesterday. It's been very GOOD today, I've had a lot of support from many, thankfully.

Being retired now for 4 months I've found lots to do , some on a regular basis .

Needing to keep the Zolly tummy at bay, I've joined an over 50's exercise class. It's great for me, social and weekly .

I also play other sport as well.

Getting out and being with people is really good. I've discovered over the years that I'm more social than I ever realised before.

In fact the jokes amongst former colleagues about watching wall to wall daytime upon retirement just has not happened.

I watch less television than ever before.

John

User
Posted 15 Mar 2016 at 19:23
Oh Guys,

Not sure if it is me that is feeling a tad more emotional than normal but I am shedding tears here.

Debbie what a lovely post Hope and Time that should be one for the hall of fame.

Chris Woody what a fantastic attitude to life you have, somehow you find a positive from any negative.

Paul the thought of you shedding tears well that was it for me , I am know a blubbering wreck.

Trevor being the enigma that he is , yes his energy levels have suffered but I think that recently this is due to the cancer advancing more than HT. During the last year when the PSA was falling his energy levels were manageable in fact he has astounded me with the things that he has done, to be honest he has had more energy than I have.

I do agree with Paul the perspective of those that are on HT permanently will be different.

CJW, take a sprinkle of Chris /Woody and a large spoon of Debbie 3 times daily with meals and you won't go far wrong.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 Mar 2016 at 23:28
My OH has been on it for more than five years now. He doesn't get hot flushes any more thank goodness, he is cold a lot though. The main thing seems to be fatigue and loss of muscle. He hasn't been able to keep up fitness due to breathlessness, which is a shame. Apart from that it's a life saver so we are very happy to have this available. Five years, Gleason 10, zoladex is a great product as far as we are concerned.

Devonmaid

User
Posted 14 Mar 2016 at 16:52
Hello,

I know exactly what you are going through.

I've been on Zoladex since August 14. I've suffered exactly as you .

Hot and cold.

Emotionally drained. Physically drained too.

Tearful.

But I have many good days too. It's difficult being positive all the time though.

I got fed up everyone saying I looked ok when I felt really wrecked inside.

I joined in December 15 with a post called "hiding emotions from friends and family".

I had many fantastic responses which really helped me.

Have a look if you haven't already. It may help you

In fact I'd go as far as say that the replies saved me. I think I was very close to clinical depression.

I know that sounds dramatic but it was knowing that I wasn't alone that helped me so much.

Have you tried acupuncture for the flushes which I have at my local cancer centre at the hospital ? This really has helped me.

I make a voluntary donation.

I have to stay on Zoladex for 3 years, finishing August 17 at the earliest.

I can't say I'm thrilled . In fact I'm not. But anything to keep me alive is most welcome .

John

User
Posted 14 Mar 2016 at 17:16

Hi Cjw,
what are your PSA levels doing? If they are staying good and low, you could talk to the consultant about stopping early; it isn't an absolute in this country that you have 3 years of HT - some hospitals only do 1 or 2 years with RT and although there is some research that says the longer you stay on the hormones the better, there are others who say there is no evidence that it makes any difference. There is also the question of quality of life v longevity ... some men might decide that the side effects have gone on long enough. My husband decided after 9 months he had had enough (and may live to regret this but it was his decision)

If flushes are the major problem, instead of giving up the treatment you could try sage capsules from any good health shop.

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

User
Posted 14 Mar 2016 at 22:10

I do not get mood swings but am distracted a lot so miss the point sometimes, could just be my age, but Zoladex has a massive impact on our lives and the OH's have to put up with a lot don't they?

Mine still laughs at my flushes and says I am anti social with my head banging tricks in the early evenings but is generally incredibly supportive. Behind every good man is a better woman? Not my saying but will agree anyway as I am an honoury woman ( must be as my onco says so) if you do not agree with me then I will cry.

Sorry to sound trivial but getting on with life and enjoying it can only be a good thing can't it?

Keep your chin/s up.

Regards Chris/Woody


Life seems different upside down, take another viewpoint

User
Posted 14 Mar 2016 at 21:49
Cjw,

Again. Sorry.

Important point. I meet up with a friend from RT days every 2-3 months .

I always thought that he'd fared much better than me on HT/RT and I always wondered how he'd coped . He seems in control, laughs a lot and is great fun and never moans.

He said he wondered how I coped , he thinks I'm doing better than him.

That really surprised me. He admitted to the same problems as me.

We both said that unless you've experienced the power of Zoladex at its worst, then you cannot begin to understand.

And as men we never expected to be in this position. Other meds have their own side effects which are probably just as awful too.

I worked with a breast cancer patient also on Zoladex. She felt just the same re mood swings etc. She's 34 with a young family.

User
Posted 15 Mar 2016 at 09:21

Brilliant post, Debbie

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

User
Posted 21 Mar 2016 at 17:12

Greetings all and many thanks for your responses, so uplifting to know that I'm not alone in this trial. Have spent many a happy hour surfing the inter web trying to find anything about long term Zoladex, without success, even the main uk charities miss this one, which is surprising!
Currently at PSA of 0.03, so as low as you can get, and have been since a few months after RT so reasonable to assume that it did its stuff and all is well. Given that, will try to come off when I see the Onco next month. Obviously there is going to be concern as the drug comes out of the system, but fingers, and everything else, crossed. Found a document some time ago that suggested that statistically at least, 18 months is nearly as good as 36, the 5 year rate was only .1 of a percent different, so should be good at 2 years.
Reading your experiences, I'm impressed at how you seem to keep up with your working lives. I reached my end point when I had to ask an old chap on his bike if he would mind lifting a 10Kg battery from up the ground into my Smart car as after the first 3, I just couldn't do it. ( Electronic vehicle speed displays, use 4 batteries)
Early retirement was discussed and taken last August, I was just over 63. See, told you I am a wuss!
Interesting to see that John, aka Surr33, also retired watches less to than before. With you on that. How peculiar😳
The mental stuff has all gone now, even off the pills so that's a good step. Must be getting better!
Will post when I've seen the Onco
Thanks again for your replies, so nice to not be alone. Do hope that everyone gets what they need.
Regards. CJW

User
Posted 24 Apr 2016 at 17:02
Greetings all, trust everybody is coping well. Still have all the effects listed, but great news. Saw my Onco on Tuesday, PSA still down at .03 so he agreed to cessation of the lovely drug. Hooray. Gave me blood test envelopes for 6 & 12 months so have to watch that, he said anything under 1 was ok. Now, just got to get this stuff out of the system and if I'm really lucky ( well someone has to be!) the numbers will stay down and I'll get some of my old life back. How great that will be😃

Will post occasionally with progress and feelings updates.

Keep well

Regards

Chris w

User
Posted 25 Apr 2016 at 22:13
Now cjw congrats on such a good score again. And as ever I'm envious when someone is released from the sentence of Zoladex.

Having been granted extra year of HT, all I can say is you are very fortunate.

Now Mr Chris PB. My scores are just resting at the moment. They've decided that 12 months at 0.2 is fine. They're deciding which way to go and it had better be lower!! And as you know I have to wait until July to find out.

Take care all

John

Show Most Thanked Posts
User
Posted 14 Mar 2016 at 16:52
Hello,

I know exactly what you are going through.

I've been on Zoladex since August 14. I've suffered exactly as you .

Hot and cold.

Emotionally drained. Physically drained too.

Tearful.

But I have many good days too. It's difficult being positive all the time though.

I got fed up everyone saying I looked ok when I felt really wrecked inside.

I joined in December 15 with a post called "hiding emotions from friends and family".

I had many fantastic responses which really helped me.

Have a look if you haven't already. It may help you

In fact I'd go as far as say that the replies saved me. I think I was very close to clinical depression.

I know that sounds dramatic but it was knowing that I wasn't alone that helped me so much.

Have you tried acupuncture for the flushes which I have at my local cancer centre at the hospital ? This really has helped me.

I make a voluntary donation.

I have to stay on Zoladex for 3 years, finishing August 17 at the earliest.

I can't say I'm thrilled . In fact I'm not. But anything to keep me alive is most welcome .

John

User
Posted 14 Mar 2016 at 17:16

Hi Cjw,
what are your PSA levels doing? If they are staying good and low, you could talk to the consultant about stopping early; it isn't an absolute in this country that you have 3 years of HT - some hospitals only do 1 or 2 years with RT and although there is some research that says the longer you stay on the hormones the better, there are others who say there is no evidence that it makes any difference. There is also the question of quality of life v longevity ... some men might decide that the side effects have gone on long enough. My husband decided after 9 months he had had enough (and may live to regret this but it was his decision)

If flushes are the major problem, instead of giving up the treatment you could try sage capsules from any good health shop.

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

User
Posted 14 Mar 2016 at 19:44

Hi cjw you have been on Zoladex longer than me, I started in Feb 2015 but all your side effects are exactly as I have.

I get very lethargic most days but as I have to work long hours I find that once I get started I carry on and it is only when I slow down or stop working that fatigue kicks in. Staying in a positive frame of mind helps rather than let it get to me I kick into second gear and keep going. Sometimes during the evening I start head banging and get told to go to bed, which I often do, too much sleep makes me worse so going to bed early means getting up earlier.

If life seems crap to you because of the side effects try to get positive thoughts going in your head, maybe try to get motivated and do something that you enjoy, do it regularly and then you might start to look forward to things. Negative thoughts are bad and will bring you down, think of the good things, think how lucky you are to be alive. The main thing is that your treatment is at a stable point and if you remain there why worry about things that might happen?

The point being that what "may " happen may never happen so why worry unnecessarily about it?

I Shall be trying the sage tablets this week as my wife has some for her own hot flushes but will be persevering with my HT (not a lot of choice really) whatever side effects I get and have had are part and parcel of the treatment for PCa and I, like John, am very grateful to be alive. Live each day with a sense of purpose, do not waste the gift of life.

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 14 Mar 2016 at 19:48

Worth a read,  

I was H/Risk and was on HT after RT for three years  treated at the Royal Marsden

http://www.medscape.com/viewarticle/819946

Edited by member 14 Mar 2016 at 19:51  | Reason: Not specified

User
Posted 14 Mar 2016 at 21:36
Chris ,

Let me know how you go with the sage tablets.

Cjw,

I find sleeping patterns can be difficult too. I've established a routine of not attempting to sleep/ close eyes through the day at all.

Then I try to sleep straight through the night. Ha ha , that's a joke. I manage about 2 hours , then wake up with night sweat etc. In total about 6 hours , if I'm lucky.

Emotionally I was very down last week but as Chris says try to keep going. I found that I was ok after a short while by trying to be positive , which is always beneficial.

It's been ok since but I had a BAD day yesterday. It's been very GOOD today, I've had a lot of support from many, thankfully.

Being retired now for 4 months I've found lots to do , some on a regular basis .

Needing to keep the Zolly tummy at bay, I've joined an over 50's exercise class. It's great for me, social and weekly .

I also play other sport as well.

Getting out and being with people is really good. I've discovered over the years that I'm more social than I ever realised before.

In fact the jokes amongst former colleagues about watching wall to wall daytime upon retirement just has not happened.

I watch less television than ever before.

John

User
Posted 14 Mar 2016 at 21:49
Cjw,

Again. Sorry.

Important point. I meet up with a friend from RT days every 2-3 months .

I always thought that he'd fared much better than me on HT/RT and I always wondered how he'd coped . He seems in control, laughs a lot and is great fun and never moans.

He said he wondered how I coped , he thinks I'm doing better than him.

That really surprised me. He admitted to the same problems as me.

We both said that unless you've experienced the power of Zoladex at its worst, then you cannot begin to understand.

And as men we never expected to be in this position. Other meds have their own side effects which are probably just as awful too.

I worked with a breast cancer patient also on Zoladex. She felt just the same re mood swings etc. She's 34 with a young family.

User
Posted 14 Mar 2016 at 22:10

I do not get mood swings but am distracted a lot so miss the point sometimes, could just be my age, but Zoladex has a massive impact on our lives and the OH's have to put up with a lot don't they?

Mine still laughs at my flushes and says I am anti social with my head banging tricks in the early evenings but is generally incredibly supportive. Behind every good man is a better woman? Not my saying but will agree anyway as I am an honoury woman ( must be as my onco says so) if you do not agree with me then I will cry.

Sorry to sound trivial but getting on with life and enjoying it can only be a good thing can't it?

Keep your chin/s up.

Regards Chris/Woody


Life seems different upside down, take another viewpoint

User
Posted 15 Mar 2016 at 06:26
Hi CJW. Hubby is on long term HT now. Your body will probably get a little pattern to it. Had three years then a four month break now on it for life. His power serves (hot flushes) did seem to reduce and they are not as prevalent as they used to be. A lot of the issues are I think adapting to the fact your no longer in total control like you used to be. Ht is in control of certain elements but you can take comfort in the fact it is working. Try to view the hot flushes as a power boost short lived and something that will pass. Try clothing which has DMC content. Dynamic Moisture control. It will absord the sweat quickly and dispurse it keeping any odour at bay. Layer clothing is best. Thin layers so you can cool quickly when having a hot flush and then can layer back up when you start to cool down. An example of who makes this stuff is Rohan.Loads of other companies do it to. Buy clothing as suitable for hot climates and ones which breathe fleeces with holes to warm and cool. It will help cope with the side effects in a social situation. Reducing the anxiety.

When your having a good day find some music that makes you smile or relax then ensure you keep it handy for when you feel the grey clouds creeping in.

Work on one hour at a time on a tough day. A grey cloud looming is easier to deal with than letting it get heavy and dark. Clouds get lighter when they rain so allow the occassional tear to flow. Don't punish yourself when it happens just park it pop some music on or a good comedy that brings a smile on the darkest day then go for a walk round the block of that's all you feel you can muster.

Talk to someone. I have a screensaver for tough days reminding me of how far we have come. It has a list of good things that have happened and laughter notes we've shared. It really does help.

H is for Hope and T is for Time.

I hope this gives some help.

Time now for me to get up and see who I can make smile today....

Debbie and Dave

Edited by member 15 Mar 2016 at 06:31  | Reason: Not specified

User
Posted 15 Mar 2016 at 09:21

Brilliant post, Debbie

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

User
Posted 15 Mar 2016 at 09:27
Hi Debbie,

I agree with Lyn, what a wonderful post.

Thank you.

Steve

User
Posted 15 Mar 2016 at 12:01

Great post from Debbie putting these challenges into perspective. I have been on HT for over four years and will continue to be so as long as my battle continues. Having no endpoint I have not sought to manage side effects with any sense that this is temporary and will finish. I wonder if this gives me a different mindset about coping. Over the four years some of the symptoms have got worse, most notably tiredness and fatigue. Used to work long hours, I have had to adjust expectation and indeed have decided to retire this April. I tell myself too that I am 64 this year, not very fit and maybe some of the tiredness is due to aging. I therefore have sought out ways to manage that tiredness so I can get the most of those times when I feel able to do things. I am getting better at this because I see the benefits of getting this right.

I have no libido nor any sexual functioning at all. I also don't have a partner so this does not bother me in ways which I know it could bother others. For me as I have no interest in sex I feel a calm that I can productively use elsewhere. I do recall some years ago when on my own I spent a lot of time looking for a partner and was for ever frustrated at my failings. I don't have those thoughts now so I focus my energies elsewhere.

I sometimes think I have been lucky with side effects. I do not have hot flushes to speak of though sore nipples can be an issue if I catch them. I just try and look up, be positive and get on with my life. I am more emotional than I was though I have always shed a tear or two. My life is emotional and so I try and live in that emotion, I want to feel alive and responsive and tears help that.

User
Posted 15 Mar 2016 at 19:23
Oh Guys,

Not sure if it is me that is feeling a tad more emotional than normal but I am shedding tears here.

Debbie what a lovely post Hope and Time that should be one for the hall of fame.

Chris Woody what a fantastic attitude to life you have, somehow you find a positive from any negative.

Paul the thought of you shedding tears well that was it for me , I am know a blubbering wreck.

Trevor being the enigma that he is , yes his energy levels have suffered but I think that recently this is due to the cancer advancing more than HT. During the last year when the PSA was falling his energy levels were manageable in fact he has astounded me with the things that he has done, to be honest he has had more energy than I have.

I do agree with Paul the perspective of those that are on HT permanently will be different.

CJW, take a sprinkle of Chris /Woody and a large spoon of Debbie 3 times daily with meals and you won't go far wrong.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Mar 2016 at 22:33

Hi all. I was just reading my post to my hubby so he knew what I was up to and he fell asleep bless him two mins in. That's the way the cookie crumbles....
Love him to bits hormones and all.

User
Posted 15 Mar 2016 at 22:42
I'm sorry if i have flagged any of these as report. Rather than thanks.kept catching it by mistake. Sorry new phone.
User
Posted 16 Mar 2016 at 23:28
My OH has been on it for more than five years now. He doesn't get hot flushes any more thank goodness, he is cold a lot though. The main thing seems to be fatigue and loss of muscle. He hasn't been able to keep up fitness due to breathlessness, which is a shame. Apart from that it's a life saver so we are very happy to have this available. Five years, Gleason 10, zoladex is a great product as far as we are concerned.

Devonmaid

User
Posted 21 Mar 2016 at 17:12

Greetings all and many thanks for your responses, so uplifting to know that I'm not alone in this trial. Have spent many a happy hour surfing the inter web trying to find anything about long term Zoladex, without success, even the main uk charities miss this one, which is surprising!
Currently at PSA of 0.03, so as low as you can get, and have been since a few months after RT so reasonable to assume that it did its stuff and all is well. Given that, will try to come off when I see the Onco next month. Obviously there is going to be concern as the drug comes out of the system, but fingers, and everything else, crossed. Found a document some time ago that suggested that statistically at least, 18 months is nearly as good as 36, the 5 year rate was only .1 of a percent different, so should be good at 2 years.
Reading your experiences, I'm impressed at how you seem to keep up with your working lives. I reached my end point when I had to ask an old chap on his bike if he would mind lifting a 10Kg battery from up the ground into my Smart car as after the first 3, I just couldn't do it. ( Electronic vehicle speed displays, use 4 batteries)
Early retirement was discussed and taken last August, I was just over 63. See, told you I am a wuss!
Interesting to see that John, aka Surr33, also retired watches less to than before. With you on that. How peculiar😳
The mental stuff has all gone now, even off the pills so that's a good step. Must be getting better!
Will post when I've seen the Onco
Thanks again for your replies, so nice to not be alone. Do hope that everyone gets what they need.
Regards. CJW

User
Posted 21 Mar 2016 at 18:06
Thanks cjw, yes I'm still not watching much on the box.

And great Psa score . I'm quite envious , stuck on 0.2 for the second time now.

Another thought since posting previously that could help you.

My wife was really keen that I had an indoor hobby long before I retired. Most of my interests we were all outdoor or playing sport .

I'd always wanted to learn to draw so one of my daughters bought me a book called " learn to draw " . When I need to I find time away and loose myself then I start drawing - well copying really - and I find it so therapeutic. One day perhaps I'll start colouring in. This has really helped me when I've felt that Zoladex has had too much control over my life !!

But from reading your post today I don't think I needed to have written the above .

Are you the same person ? You sound so different and I mean that in a really positive way.

Unless you've had Zoladex then you just cannot understand how powerful it is .

And keep in touch.

Wishing you all the very best ,

John

User
Posted 24 Apr 2016 at 17:02
Greetings all, trust everybody is coping well. Still have all the effects listed, but great news. Saw my Onco on Tuesday, PSA still down at .03 so he agreed to cessation of the lovely drug. Hooray. Gave me blood test envelopes for 6 & 12 months so have to watch that, he said anything under 1 was ok. Now, just got to get this stuff out of the system and if I'm really lucky ( well someone has to be!) the numbers will stay down and I'll get some of my old life back. How great that will be😃

Will post occasionally with progress and feelings updates.

Keep well

Regards

Chris w

User
Posted 24 Apr 2016 at 18:37

after reading about them catheters,i am dreading it when it comes to my turn,does everybody with pc have to go through that,when i visit my onco in june i will have been on zoladex for 2yrs 4 months,it has been a year since i saw my onco,so a bit of anxiety starting to creep in.

User
Posted 25 Apr 2016 at 21:21

Hi ChrisW, fantastic news about your PSA level ( mine is 0.01, sorry John Surr33) and even better about coming off Zoladex.

Can you do us on here(and especially me) a big favour and let us know how long it takes to get back to something like normal after being on HT for so long. How soon do flushes stop or tearfulness stop and if you start to get energy and enthusiasm back. It will be very interesting and also when it comes to our turn to stop HT we will have some idea of what to expect.

Stay positive and best wishes to you, Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 25 Apr 2016 at 22:13
Now cjw congrats on such a good score again. And as ever I'm envious when someone is released from the sentence of Zoladex.

Having been granted extra year of HT, all I can say is you are very fortunate.

Now Mr Chris PB. My scores are just resting at the moment. They've decided that 12 months at 0.2 is fine. They're deciding which way to go and it had better be lower!! And as you know I have to wait until July to find out.

Take care all

John

User
Posted 26 Apr 2016 at 00:29

Puffingbilly,
in general they say the side effects will take as long to completely disappear as the time you were actually taking them. Apart from that, speed at which the side effects wear off tends to be linked to how long they took to show themselves - e.g. if the side effects came on slowly then they will probably abate slowly and if they came on suddenly then they should disappear quite quickly. Some side effects turn out to be permanent, of course.

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

User
Posted 02 May 2016 at 21:21

I was on Zoladex for 3 yrs got hot flushes, bodily hair loss and muscle loss, hot flushes diminished somewhat after about 12 months. After 3 yrs I was off Zoladex but it took about 18 months for the flushes to stop, bodily hair returned at about the same time. After 4 yrs off HT due to an rising PSA I returned to Zoladex but did not suffer hot flushes but lost badly hair and muscle, at this time I have been on the second round of HT for 5 yrs in total HT has been a 8 yr trip iwith a 4yr break.
The experience of HT varies from person to person some get almost all the SE,s others less of them, I did suffer the hidden effect of bone weakening for which I take vitamin D3 and calcium with regular Dexa bone scans.

Edited by member 02 May 2016 at 21:23  | Reason: Not specified

 
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