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Freedom - well hopefully - zoladex,PSA,Sex

User
Posted 11 May 2016 at 16:31

After 27 months, as of today I’m Zoladex free!

More accurately I’ve not had my next scheduled injection, so as of today diminishing Zoladex will hopefully mean a return to some sort of normal lifestyle. That is one without all of the side effects that come with hormone deprivation therapy deemed so necessary by the treatment plans for this horrid disease.

Diagnosed by PSA 6.71, 12 needle biopsy in January 2014, 10 cores positive, Staged at 2c then upgraded to 3a. Not suitable for surgery so RT. Gold seeds implanted, then 37 RT sessions July to September 2014. PSA 0.13 one month after RT. After discussion with Onco relating to 3a staging, decided to keep on Zoladex. After review last November, total hormone therapy was agreed at 2 years.
Last three PSA readings 0.03.
So all in all a pretty good result.

Downside has been a whole raft of side effects, some irritating some serious. Had to take early retirement on ill health grounds, so income seriously dented. Still, I managed 49 years continuous PAYE employment, not a bad innings at 64. Just have to wait to collect my OAP in August.
Interesting survey just published by Macmillan about the financial impact of cancer, with them all the way on that one.

Put a terrific strain on my marriage. Couldn’t have done without my wife’s support, she has been terrific, my great anchor holding me together in my troubled times. We’ve done 40 years together now, and come out of the other side closer and stronger than ever. Renewed our vows last November as a reminder of things past and better to come.

Really looking forward to losing the hot flushes, extreme fatigue, fuzzy brain, weakness, general lethargy, bone pain and all of the other crap that we have to put up with whilst ‘getting better’.

Bizarrely, or perhaps not?, the one thing i’m not looking forward to is the return of Libido.
When I first started down this road, I talked to a Macmillan volunteer who told me that I would lose any and all interest in sex and its associates, but it would be so subtle that I probably wouldn’t notice and he was spot on, within two months all of my ‘maleness’ had totally evaporated. Caused great distress to my wife, and despite many explanations that ‘it’s not me, it’s the drugs’, she had a really hard time accepting that I no longer had any interest in anything physical. She eventually understood and we are now a more strongly bonded couple without the physical bits, and I have worries that we will lose this closeness we have obtained if ‘the physical thing’ begins to raise its ugly head again. Might ask to go back on the drug again! (joke).

Will be interesting to see how it goes over the next year or so. Next PSA will be in October, more telling one will be next April.
A pretty good result so far, a few issues I could have done without, but a lot better than not being here at all!

Have all that free time now that I’ve wanted for years, more time with me, the wife, the kids and grandkids. So much to look forward to and hopefully leave all this nonsense behind.
I’ve no idea how long this is going to take, I’ve just seen a post that suggests as long to remove as you’ve been on it, so about 2 years then.Will post as news comes in.

I’ve not been a great contributor to this forum, but reading it has given me great support and comfort over the last couple of years, so a big thanks to all of you fellow sufferers of this unfair impediment to our lives.

May the researchers, medicos and all those other clever people working so hard on our behalf be granted the breakthrough we all need.

Two little aphorisms that I’ve found comforting through all of this.

If you always do what you’ve always done, you’ll always get what you always got.

And especially :

Don’t look backwards, you’re not going that way.

Chris W

 

 

User
Posted 11 May 2016 at 20:44
Chris,

Freedom from Zoladex ! I am so envious of you for that. I'm 21 months into it now and have another 15 months to go. The build up of the effects from it are sometimes overwhelming and I'm suffering from all you've reported. I thought I'd become used to them by now but this week in particular I have felt so drained on occasions.

But like you I am trying to be positive and fight my way through the lethargy etc. I hope that some form of normality to your life returns soonest.

Your comments re libido interested me and I can understand what you say. My wife and I have in many ways become even closer since diagnosis. We have a good understanding of each other and work well together. We have spoken about the loss of libido several times and she understands why I have now sought help for ED. Being free from the expectations of sex has in some ways not mattered at all. I had some ED problems before dx and then being inhibited, did not seek medical help.

She has implied that she'd rather wait until I'm off HT and await the return of libido, before trying for penetrative sex ,rather than having to cope with me being disappointed if it didn't work.

As many close friends have said to me, it's better to have a loving relationship rather than one fraught by sex issues. Time will tell for us over this. But she has shown interest in my ED programme and I see that as really positive.

I'm really pleased for you that you've reached a milestone in your treatment and wish you well for the future.

Regards,

John

User
Posted 11 May 2016 at 16:31

After 27 months, as of today I’m Zoladex free!

More accurately I’ve not had my next scheduled injection, so as of today diminishing Zoladex will hopefully mean a return to some sort of normal lifestyle. That is one without all of the side effects that come with hormone deprivation therapy deemed so necessary by the treatment plans for this horrid disease.

Diagnosed by PSA 6.71, 12 needle biopsy in January 2014, 10 cores positive, Staged at 2c then upgraded to 3a. Not suitable for surgery so RT. Gold seeds implanted, then 37 RT sessions July to September 2014. PSA 0.13 one month after RT. After discussion with Onco relating to 3a staging, decided to keep on Zoladex. After review last November, total hormone therapy was agreed at 2 years.
Last three PSA readings 0.03.
So all in all a pretty good result.

Downside has been a whole raft of side effects, some irritating some serious. Had to take early retirement on ill health grounds, so income seriously dented. Still, I managed 49 years continuous PAYE employment, not a bad innings at 64. Just have to wait to collect my OAP in August.
Interesting survey just published by Macmillan about the financial impact of cancer, with them all the way on that one.

Put a terrific strain on my marriage. Couldn’t have done without my wife’s support, she has been terrific, my great anchor holding me together in my troubled times. We’ve done 40 years together now, and come out of the other side closer and stronger than ever. Renewed our vows last November as a reminder of things past and better to come.

Really looking forward to losing the hot flushes, extreme fatigue, fuzzy brain, weakness, general lethargy, bone pain and all of the other crap that we have to put up with whilst ‘getting better’.

Bizarrely, or perhaps not?, the one thing i’m not looking forward to is the return of Libido.
When I first started down this road, I talked to a Macmillan volunteer who told me that I would lose any and all interest in sex and its associates, but it would be so subtle that I probably wouldn’t notice and he was spot on, within two months all of my ‘maleness’ had totally evaporated. Caused great distress to my wife, and despite many explanations that ‘it’s not me, it’s the drugs’, she had a really hard time accepting that I no longer had any interest in anything physical. She eventually understood and we are now a more strongly bonded couple without the physical bits, and I have worries that we will lose this closeness we have obtained if ‘the physical thing’ begins to raise its ugly head again. Might ask to go back on the drug again! (joke).

Will be interesting to see how it goes over the next year or so. Next PSA will be in October, more telling one will be next April.
A pretty good result so far, a few issues I could have done without, but a lot better than not being here at all!

Have all that free time now that I’ve wanted for years, more time with me, the wife, the kids and grandkids. So much to look forward to and hopefully leave all this nonsense behind.
I’ve no idea how long this is going to take, I’ve just seen a post that suggests as long to remove as you’ve been on it, so about 2 years then.Will post as news comes in.

I’ve not been a great contributor to this forum, but reading it has given me great support and comfort over the last couple of years, so a big thanks to all of you fellow sufferers of this unfair impediment to our lives.

May the researchers, medicos and all those other clever people working so hard on our behalf be granted the breakthrough we all need.

Two little aphorisms that I’ve found comforting through all of this.

If you always do what you’ve always done, you’ll always get what you always got.

And especially :

Don’t look backwards, you’re not going that way.

Chris W

 

 

User
Posted 11 May 2016 at 19:56

Congratulations Chris for getting to the end and still having a sense of humour, positive attitude and the will to persevere in the face of adversity long may it continue to be the success story for you and your family.

I have nine months to go on my trip with Zoladex and all the s/e's are as yours. My PSA was 63 on diagnosis and 0.5 before RT and now 0.01 since ending RT. I am seeing onco tomorrow had blood test yesterday so here's hoping for continued undetectable result and a happy appointment.

Stay positive, best wishes Chris/Woody

Life seems different upside down, take another viewpoint

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User
Posted 11 May 2016 at 19:56

Congratulations Chris for getting to the end and still having a sense of humour, positive attitude and the will to persevere in the face of adversity long may it continue to be the success story for you and your family.

I have nine months to go on my trip with Zoladex and all the s/e's are as yours. My PSA was 63 on diagnosis and 0.5 before RT and now 0.01 since ending RT. I am seeing onco tomorrow had blood test yesterday so here's hoping for continued undetectable result and a happy appointment.

Stay positive, best wishes Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 11 May 2016 at 20:44
Chris,

Freedom from Zoladex ! I am so envious of you for that. I'm 21 months into it now and have another 15 months to go. The build up of the effects from it are sometimes overwhelming and I'm suffering from all you've reported. I thought I'd become used to them by now but this week in particular I have felt so drained on occasions.

But like you I am trying to be positive and fight my way through the lethargy etc. I hope that some form of normality to your life returns soonest.

Your comments re libido interested me and I can understand what you say. My wife and I have in many ways become even closer since diagnosis. We have a good understanding of each other and work well together. We have spoken about the loss of libido several times and she understands why I have now sought help for ED. Being free from the expectations of sex has in some ways not mattered at all. I had some ED problems before dx and then being inhibited, did not seek medical help.

She has implied that she'd rather wait until I'm off HT and await the return of libido, before trying for penetrative sex ,rather than having to cope with me being disappointed if it didn't work.

As many close friends have said to me, it's better to have a loving relationship rather than one fraught by sex issues. Time will tell for us over this. But she has shown interest in my ED programme and I see that as really positive.

I'm really pleased for you that you've reached a milestone in your treatment and wish you well for the future.

Regards,

John

User
Posted 21 May 2016 at 14:15


Update.
I know it's not long since I stopped and it's possible it's pure coincidence, but I'm now getting hot flushes, the like of which I've not had in the last 2 years. Sudden, very hot, very wet. Hair soaked along with clothes. Really uncomfortable.
Second new one, feeling extremely tired and very weak, much worse than before. The exercises at the class used to be a doddle, finding them really hard over the last couple of weeks. If I run upstairs, I have to hold onto something to prevent myself falling over whilst I get my breath back.
Can't get to sleep, but when I do, could still sleep for England💤
Quite often drop off in front of telly
Also getting the dark thoughts again. Back on the Citalopram.
Hope this is short lived. Not nice.
Bank hols coming up, hope everybody makes the best of it. Have fun
Regards
Chris wg

 
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