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A new milestone, it's been a while

User
Posted 30 Dec 2022 at 20:46

So my Zoladex journey is coming to an end after three long years.  I have my last implant 26/01/2023.  Onco says it will take at least six months to clear my system and for things to start to readjust to normal.  Looking forward to getting some strength and energy back and maybe losing some body fat.  

The sex side doesn't bother me.  To be honest I'd rather not have the urges back.  I'm 67, been divorced 10 years and have no partner and am unlikely to ever have another.  So being free of the desire for sex has actually been quite liberating for me.  I appreciate that might seem weird to some.

What I'm looking forward to most is any change in my mental health.  I've suffered severe depression since long before I started on the Zoladex.  But it's undeniably got worse the past three years.  If I can see any improvement whatsoever in that I will be very happy.  

Anyway, here's to the future and hopefully a bright 2023.

User
Posted 28 Apr 2023 at 20:13

Had my last Zoladex 27 January.  Officially "ran out" last Friday 21 April.  Such a relief after three long and tedious years.  I know it will take months for it to completely leave my system and for my body to (hopefully) readjust.  That said I wanted to make a positive start.  Celebrate a new dawn if you will.  So bought myself some dumbbells and a bench and started weight training a week ago. I know it will be a long hard slog, not helped by the fact that I'm 67 and the clock is against me anyway.  But I feel so good having started.  I'm not naive, I don't expect any miraculous results, but the impact on my mental health has already been surprising.  Off for blood tests and CT scan next week.  Then oncology appt to hear results two weeks after.  The only way is up.  Cheers all

User
Posted 29 Apr 2023 at 20:49

Originally Posted by: Online Community Member

I asked my consultant about that issue of bicalutamide pushing testosterone up.

He said whilst it does, it blocks every cell from using it , not just the cancer cells.

So is it the case you will have a high testosterone rate ( mine went to 33 for the short period i was on it) but none of it is used by the body?

And also when you stop bicalutamide,  does testosterone recovery happen sooner than with e.g decapeptyl

This is partly correct. Androgen receptors can't use the Testosterone because the Bicalutamide blocks them, and that's the way many things in your body use Testosterone. Actually, your Testosterone level increases because the Bicalutamide blocks the androgen receptors in your hypothalamus and pituitary glands which monitor and adjust your Testosterone level, because it stops these glands seeing your Testosterone so they think you need some more.

However, there are other ways too. For example, Testosterone is used to create Estrogens in men, which are also pretty essential for men, although not at the level found in women. When you're on hormone therapy injections which switch off Testosterone, you also lose your Estrogen, and it's that which causes osteoporosis, and significantly contributes to hot flushes. However, on Bicalutamide (and no hormone therapy injections), your Estrogen levels increase because your Testosterone level is higher. The raised Estrogen level causes your bones to strengthen (opposite of osteoporosis). Breast tissue can't see any Testosterone because the androgen receptors are blocked by the Bicalutamide, but they do see the raised Estrogen level, and this is the signal they use to detect a girl reaching puberty and causes breast tissue to grow (gynecomastia in men). Tamoxifen is a selective Estrogen and Androgen blocker, blocking the Estrogen receptors in breast tissue which therefore usually stops breast gland growth, but it doesn't block the Estrogen receptors in bone, so you still benefit from increased bone strength.

Recovery from Bicalutamide is faster than for hormone therapy injections, but it does still take a couple of months to flush out of your system.

Edited by member 29 Apr 2023 at 20:54  | Reason: Not specified

User
Posted 23 Oct 2023 at 20:08
I can't answer your question, but I can say that it has been taking a long time for my testosterone recovery as well - and I was on HRT for a much shorter time than you. At six months I was just getting the first signs of returning body hair.

Now over a year most areas previously bald have hair, though still less of it, and I have some libido but certainly not back to normal. It is a very long journey. Plus hospital pressures seem to have delayed my next checkups which didn't include testosterone anyway, though I will ask when I finally get to talk to the consultant again.

It's a long journey. Good luck!

User
Posted 30 Dec 2022 at 20:46

So my Zoladex journey is coming to an end after three long years.  I have my last implant 26/01/2023.  Onco says it will take at least six months to clear my system and for things to start to readjust to normal.  Looking forward to getting some strength and energy back and maybe losing some body fat.  

The sex side doesn't bother me.  To be honest I'd rather not have the urges back.  I'm 67, been divorced 10 years and have no partner and am unlikely to ever have another.  So being free of the desire for sex has actually been quite liberating for me.  I appreciate that might seem weird to some.

What I'm looking forward to most is any change in my mental health.  I've suffered severe depression since long before I started on the Zoladex.  But it's undeniably got worse the past three years.  If I can see any improvement whatsoever in that I will be very happy.  

Anyway, here's to the future and hopefully a bright 2023.

User
Posted 31 Dec 2022 at 01:01

Your pathway has been similar to mine [G9 with involvement of nearby lymph nodes, RT followed by HT] and I'm now one month past the effective end of my last Zoladex shot.

Even at this stage I feel better and my partner says I'm calmer. Maybe some of this is just relief at being off the Z but I think the change does have some real basis. No testosterone back yet, of course but I'm sleeping better and finding myself more able to run and cycle. Overall strength still down but improving, I think. Christmas has not been good for the body fat, though I've brought my weight back from its peaks. It's as though you lose the natural ability for your body to control intake and weight gain and have to replace the automatic natural control with "manual" mental control. Unfortunately it seems it doesn't just happen.

Jules

User
Posted 31 Dec 2022 at 20:55

I’m near the start of my journey after only 6 months of Prostap3 and RT starting 16th January.

trying everything to improve side effects with varying success…the hot flushes are certainly better now than 3 months ago…I think the acupuncture has helped significantly.

Anxiety which came on immediately I started the HT has been solved by Sertraline, it really has made such a difference to my moods.

I’m keeping as active and positive as possible, fatigue has not really been and issue with me, I find the more active I keep, the more energy I have….I am just hoping I can keep up my gym going, walking and cycling to some level during the RT.

All the best for 2023

User
Posted 01 Jan 2023 at 13:55

It can be useful to get Testosterone added to your PSA tests while coming off hormone therapy, so you can see what's happening, and it helps to make more sense of the PSA readings (which are expected to rise as Testosterone comes back).

I think 9 months after the last injection runs out is more realistic for seeing changes start.

User
Posted 29 Apr 2023 at 18:14

Hi Bean121,

Glad to hear that the planned exercise programme is already starting to improve your mood and outlook.  Sometimes, all we can do is take one day at a time.

Good luck.

JedSee. 

User
Posted 06 May 2023 at 20:43
Good luck with the weight training Bean, but take it easy. It is now 8 months since the end of my Zoladex treatment (end of last injection duration) and I am suffering from a painful musculoskeletal problem in my shoulder - and I wonder if press-ups have contributed to it.

In theory my testosterone should be coming back to normal, but round here it isn't monitored. Subjectively I would say that libido is returning but certainly not all there, and body hair is returning though I am still bald under my arms. I am clinging to hope from the graph posted by Andy62 showing testosterone getting back into the normal range at 9 months... though that isn't long now for me.

User
Posted 06 May 2023 at 22:19

I get a 'green sheet' request form from the onco team for my regular GP blood tests, and  if its not on there, I just add 'testosterone' in manuscript. Always works!

Another thumbs up from me for the benefits of a bit of resistance training: after my RT I got access to a phone  app which has a varying bunch of exercises to go through. They haven't got me back to where I was before 2 years of Zoladex, but they have slowed the decline.

User
Posted 07 May 2023 at 11:36

If getting a bollocking is the worst thing that can happen to you, you are in a good place 😄.

I was a long term civil servant too- that taught me to play the game! 

User
Posted 23 Oct 2023 at 19:49

So as mentioned previously had my last Zoladex 27 January 2023.  "Ran out" 21 April 2023.  Been over six months now and still waiting for signs of testosterone return.  None so far sadly.  My next bloods are due mid-November followed by Onco appt about 20 Nov.  She's added T to the PSA test, but only total serum, not a proper profile. 

I'm not expecting a lot so it's my intention at present to ask her a "hypothetical question" about the risks that TRT would pose to me.  I've been nearly 4 years without T and to be honest I've had enough.  I'm prepared to bet that at 68 I exercise more than most people 30 years younger than me.  I walk several miles a day, and resistance train with weights six days a week. Yet I still can't build stamina, can't add lean tissue, and can't lose body fat.  And I'm depressed as hell.

Of course I appreciate that HRT has helped prolong my life but at the same time I've had to suffer the physical and mental consequences of being without testosterone.  I need some light at the end of the tunnel.  I'm fully aware that the NHS are unlikely to prescribe TRT and that I'd likely have to go private if I could afford it, but if I can I will.  Ok, rant over, just wondered if anyone else has gone on TRT after EBRT and HT?

Edited by member 23 Oct 2023 at 19:50  | Reason: Not specified

User
Posted 23 Oct 2023 at 22:49

I may have mentioned before that my last zoladex after two years was in Jan 2020 and I had my first morning wood on Christmas day of that year, so don't panic yet.

Dave

User
Posted 24 Oct 2023 at 20:37
Appreciate that I was on Zoladex for 3 yrs (plus abiraterone&enzalutimide on trial) it took a really really long time for testosterone, libido and everything else to return. I was expecting it to take a long time and was prepared to wait 'for as long as I was on HT' for things to settle i.e. 3 yrs as some say. Things did all settle down again and return to normal, hopefully for you its just a case of waiting a bit but it'll be good to get a testosterone test.

Peter

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User
Posted 31 Dec 2022 at 01:01

Your pathway has been similar to mine [G9 with involvement of nearby lymph nodes, RT followed by HT] and I'm now one month past the effective end of my last Zoladex shot.

Even at this stage I feel better and my partner says I'm calmer. Maybe some of this is just relief at being off the Z but I think the change does have some real basis. No testosterone back yet, of course but I'm sleeping better and finding myself more able to run and cycle. Overall strength still down but improving, I think. Christmas has not been good for the body fat, though I've brought my weight back from its peaks. It's as though you lose the natural ability for your body to control intake and weight gain and have to replace the automatic natural control with "manual" mental control. Unfortunately it seems it doesn't just happen.

Jules

User
Posted 31 Dec 2022 at 19:59

It will certainly be interesting seeing what changes I notice.  Being three years on chemical castration you get used to it and maybe forget how you were before.  All the best mate

User
Posted 31 Dec 2022 at 20:55

I’m near the start of my journey after only 6 months of Prostap3 and RT starting 16th January.

trying everything to improve side effects with varying success…the hot flushes are certainly better now than 3 months ago…I think the acupuncture has helped significantly.

Anxiety which came on immediately I started the HT has been solved by Sertraline, it really has made such a difference to my moods.

I’m keeping as active and positive as possible, fatigue has not really been and issue with me, I find the more active I keep, the more energy I have….I am just hoping I can keep up my gym going, walking and cycling to some level during the RT.

All the best for 2023

User
Posted 01 Jan 2023 at 13:55

It can be useful to get Testosterone added to your PSA tests while coming off hormone therapy, so you can see what's happening, and it helps to make more sense of the PSA readings (which are expected to rise as Testosterone comes back).

I think 9 months after the last injection runs out is more realistic for seeing changes start.

User
Posted 01 Jan 2023 at 20:10

Funnily enough I had testosterone tested in all my previous bloods but I notice she's taken it off for my first post-Zoladex test in May.  Just PSA only to be followed a week later by a thorax and abdomen CT scan.  My tumour is non-secreting so the PSA is not a reliable test in itself without the scan.  My onco is a bit weird.  Like many consultants her "bedside manner"  leaves a lot to be desired.  Very cold and offhand.  I haven't even seen her face to face since Jan 2020, the start of the first lockdown.  She went straight to phone consultations only and is still sticking to them.  

User
Posted 01 Jan 2023 at 21:14

You could try asking for Testosterone again.

I know some places always include Testosterone with PSA tests while you're on hormone therapy injections. UCLH told me they pick up failures of the injections to suppress Testosterone quickly that way, and switch to a different injection instead.

I was talking with one of the oncologists involved in getting Relugolix rolled out, which is a daily tablet form of the injections. (It's actually a GnRH antagonist, i.e. equivalent to Degarelix.) In that case, it is likely that it will be recommended to always measure Testosterone with PSA, to monitor the patient's compliance with taking the daily tablets. Some centres do this with patients on only Bicalutamide to monitor compliance too, although in that case, Bicalutamide pushes your Testosterone up.

Edited by member 01 Jan 2023 at 21:30  | Reason: Not specified

User
Posted 05 Jan 2023 at 15:49

I asked my consultant about that issue of bicalutamide pushing testosterone up.

He said whilst it does, it blocks every cell from using it , not just the cancer cells.

So is it the case you will have a high testosterone rate ( mine went to 33 for the short period i was on it) but none of it is used by the body?

And also when you stop bicalutamide,  does testosterone recovery happen sooner than with e.g decapeptyl?

User
Posted 28 Apr 2023 at 20:13

Had my last Zoladex 27 January.  Officially "ran out" last Friday 21 April.  Such a relief after three long and tedious years.  I know it will take months for it to completely leave my system and for my body to (hopefully) readjust.  That said I wanted to make a positive start.  Celebrate a new dawn if you will.  So bought myself some dumbbells and a bench and started weight training a week ago. I know it will be a long hard slog, not helped by the fact that I'm 67 and the clock is against me anyway.  But I feel so good having started.  I'm not naive, I don't expect any miraculous results, but the impact on my mental health has already been surprising.  Off for blood tests and CT scan next week.  Then oncology appt to hear results two weeks after.  The only way is up.  Cheers all

User
Posted 29 Apr 2023 at 18:14

Hi Bean121,

Glad to hear that the planned exercise programme is already starting to improve your mood and outlook.  Sometimes, all we can do is take one day at a time.

Good luck.

JedSee. 

User
Posted 29 Apr 2023 at 20:49

Originally Posted by: Online Community Member

I asked my consultant about that issue of bicalutamide pushing testosterone up.

He said whilst it does, it blocks every cell from using it , not just the cancer cells.

So is it the case you will have a high testosterone rate ( mine went to 33 for the short period i was on it) but none of it is used by the body?

And also when you stop bicalutamide,  does testosterone recovery happen sooner than with e.g decapeptyl

This is partly correct. Androgen receptors can't use the Testosterone because the Bicalutamide blocks them, and that's the way many things in your body use Testosterone. Actually, your Testosterone level increases because the Bicalutamide blocks the androgen receptors in your hypothalamus and pituitary glands which monitor and adjust your Testosterone level, because it stops these glands seeing your Testosterone so they think you need some more.

However, there are other ways too. For example, Testosterone is used to create Estrogens in men, which are also pretty essential for men, although not at the level found in women. When you're on hormone therapy injections which switch off Testosterone, you also lose your Estrogen, and it's that which causes osteoporosis, and significantly contributes to hot flushes. However, on Bicalutamide (and no hormone therapy injections), your Estrogen levels increase because your Testosterone level is higher. The raised Estrogen level causes your bones to strengthen (opposite of osteoporosis). Breast tissue can't see any Testosterone because the androgen receptors are blocked by the Bicalutamide, but they do see the raised Estrogen level, and this is the signal they use to detect a girl reaching puberty and causes breast tissue to grow (gynecomastia in men). Tamoxifen is a selective Estrogen and Androgen blocker, blocking the Estrogen receptors in breast tissue which therefore usually stops breast gland growth, but it doesn't block the Estrogen receptors in bone, so you still benefit from increased bone strength.

Recovery from Bicalutamide is faster than for hormone therapy injections, but it does still take a couple of months to flush out of your system.

Edited by member 29 Apr 2023 at 20:54  | Reason: Not specified

User
Posted 06 May 2023 at 19:26

Had first post-Zoladex blood test taken Tuesday.  Then yesterday had CT scan with contrast of my thorax, abdomen and pelvis.  Have to have them regularly as my tumours are non-secreting, so PSA test is not much use.  Have to wait until 22 May for results.  In the meantime pushing ahead with my weight training.  Even after just two weeks I'm feeling great!  Better than I've felt in years. I almost feel like a youth of 60 again! I tell you, if they could bottle those endorphins they'd put anti-depressants out of business. When I speak to onco on 22/5 will ask if testosterone can be added to my next blood test in six months from now.

User
Posted 06 May 2023 at 20:43
Good luck with the weight training Bean, but take it easy. It is now 8 months since the end of my Zoladex treatment (end of last injection duration) and I am suffering from a painful musculoskeletal problem in my shoulder - and I wonder if press-ups have contributed to it.

In theory my testosterone should be coming back to normal, but round here it isn't monitored. Subjectively I would say that libido is returning but certainly not all there, and body hair is returning though I am still bald under my arms. I am clinging to hope from the graph posted by Andy62 showing testosterone getting back into the normal range at 9 months... though that isn't long now for me.

User
Posted 06 May 2023 at 22:19

I get a 'green sheet' request form from the onco team for my regular GP blood tests, and  if its not on there, I just add 'testosterone' in manuscript. Always works!

Another thumbs up from me for the benefits of a bit of resistance training: after my RT I got access to a phone  app which has a varying bunch of exercises to go through. They haven't got me back to where I was before 2 years of Zoladex, but they have slowed the decline.

User
Posted 06 May 2023 at 23:00

I get a green priority sheet too mate.  I've often been tempted to add something myself but I'm sadly too much of a conformist.  Worried I'll get a bollocking.  It must be the 34 years in the civil service in me! 😂

User
Posted 06 May 2023 at 23:03

Good point mate.  Fortunately I'm now old enough and wise enough to not go crazy.  I'm not expecting miracles or even any tangible results until my testosterone kicks back in many months from now.  Just couldn't wait to make a start though.  Feeling better for doing it and that counts for a lot.  All the best

User
Posted 07 May 2023 at 11:36

If getting a bollocking is the worst thing that can happen to you, you are in a good place 😄.

I was a long term civil servant too- that taught me to play the game! 

User
Posted 23 Oct 2023 at 19:49

So as mentioned previously had my last Zoladex 27 January 2023.  "Ran out" 21 April 2023.  Been over six months now and still waiting for signs of testosterone return.  None so far sadly.  My next bloods are due mid-November followed by Onco appt about 20 Nov.  She's added T to the PSA test, but only total serum, not a proper profile. 

I'm not expecting a lot so it's my intention at present to ask her a "hypothetical question" about the risks that TRT would pose to me.  I've been nearly 4 years without T and to be honest I've had enough.  I'm prepared to bet that at 68 I exercise more than most people 30 years younger than me.  I walk several miles a day, and resistance train with weights six days a week. Yet I still can't build stamina, can't add lean tissue, and can't lose body fat.  And I'm depressed as hell.

Of course I appreciate that HRT has helped prolong my life but at the same time I've had to suffer the physical and mental consequences of being without testosterone.  I need some light at the end of the tunnel.  I'm fully aware that the NHS are unlikely to prescribe TRT and that I'd likely have to go private if I could afford it, but if I can I will.  Ok, rant over, just wondered if anyone else has gone on TRT after EBRT and HT?

Edited by member 23 Oct 2023 at 19:50  | Reason: Not specified

User
Posted 23 Oct 2023 at 20:08
I can't answer your question, but I can say that it has been taking a long time for my testosterone recovery as well - and I was on HRT for a much shorter time than you. At six months I was just getting the first signs of returning body hair.

Now over a year most areas previously bald have hair, though still less of it, and I have some libido but certainly not back to normal. It is a very long journey. Plus hospital pressures seem to have delayed my next checkups which didn't include testosterone anyway, though I will ask when I finally get to talk to the consultant again.

It's a long journey. Good luck!

User
Posted 23 Oct 2023 at 22:49

I may have mentioned before that my last zoladex after two years was in Jan 2020 and I had my first morning wood on Christmas day of that year, so don't panic yet.

Dave

User
Posted 24 Oct 2023 at 20:37
Appreciate that I was on Zoladex for 3 yrs (plus abiraterone&enzalutimide on trial) it took a really really long time for testosterone, libido and everything else to return. I was expecting it to take a long time and was prepared to wait 'for as long as I was on HT' for things to settle i.e. 3 yrs as some say. Things did all settle down again and return to normal, hopefully for you its just a case of waiting a bit but it'll be good to get a testosterone test.

Peter

 
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