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HT Zoladex

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User
Posted 16 Nov 2022 at 17:26

I was diagnosed with PSA 12 - G9 (4+5) localised PCa T2c M0 N0 in October and not suitable for surgery due to DVT history. Bone and CT scans clear. MRI scan found no mets in pelvic area or seminal vesicle. My treatment was initially Bicalutamide then Zoladex implant on the 21st October for a month then the 3 month Zoladex implant due on the 21st November. I have had no side effects up until last week and have started with some joint ache (not all the time) in various joints around the body. Easily tolerable alongside some what I can only describe as warm flushes (again not hot flushes and tolerable) plus libido. My negative thought process is thinking my PCa as spread to my bones despite PCa localised and scans all clear. Are these side effects common? 


andy

Edited by member 16 Nov 2022 at 21:18  | Reason: Not specified

User
Posted 16 Nov 2022 at 17:57

Joint pain is quite common when starting hormone therapy, particularly hips. It does wear off after a while in most cases.


You should regard exercise as mandatory while on hormone therapy. Walking is good, and easily modified in extent and intensity as you get fitter.

User
Posted 04 Dec 2022 at 10:30

I get joint/muscle aches and pains, fatigue, difficultly focusing and memory recall, lack of interest in doing things. Life is a chore.


Considering stopping Zoladex after 1yr not 3yrs. Quality of life is important.

User
Posted 16 Nov 2022 at 21:15
Yes I was on Zoladex for 3yrs in total and had aching joints etc for a while, perfectly normal as they say. No problem after a while.
Peter
User
Posted 16 Nov 2022 at 21:56
I don't recall noticing joint aches (more than I get anyway) but I was advised that Zoladex put me at risk of losing bone mass. The advice, which I have followed, was to take vitamin D supplements and do some weight-bearing exercises as well as maintaining general cardiovascular exercise (walking, cycling, etc).

It is a potentially anxious time - follow the advice as best as you can and maintain a positive attitude.
User
Posted 16 Nov 2022 at 22:38
The zoladex leads to your body changing in a similar way to an adolescent girl preparing for adulthood and child birth - ligaments loosen, the hips / pelvis widen slightly. It can cause joint pain.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Nov 2022 at 10:18
During my time on it, I had a frozen shoulder - not nice, I had previously taken up Tennis for extra exercise that had been advised, not a good idea, you learn.
User
Posted 24 Nov 2022 at 22:36
During the first 6 months on Zoladex, the main side effect for me was premature fatigue, so I had to sit out more games of 'Short Tennis' to recover. The Short Tennis was not available during the last last couple or so months on Zoladex when I had RT and I don't think I would have been up for it due to increasing tiredness and aches had the facility been available.
Barry
User
Posted 27 Nov 2022 at 22:27

Originally Posted by: Online Community Member


 


You should regard exercise as mandatory while on hormone therapy. Walking is good, and easily modified in extent and intensity as you get fitter.


I know you are right but for me the side effects of HT are now rendering even gentle walking extremely challenging. Am getting hot flushes about every 30-40 minutes during the day and these are accompanied by total energy wipe-outs and breathlessness. But the killer is that my legs go weak and just give, meaning I need to be able to sit down and rest for ten/fifteen minutes before I have recovered enough to be able to continue. As a result I am struggling to do any significant exercise.


I know I should exercise more but it's not easy to see a way forward.


 

User
Posted 27 Nov 2022 at 23:22
Give the PCUK nurses a call (number at the top of this Web page). PCUK did some research on HT induced fatigue and the nurses may have suggestions that will help.

Also consider swimming - previous member Old Al (who was in his 50s) was forced into using a wheelchair by his HT fatigue - through swimming he eventually regained mobility.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Nov 2022 at 18:50
LTS, I can really understand about the 'extreme' tiredness/weakness you mention. I had Zoladex for 3 yrs (2 yrs of abiraterone, enzalutimide,prednisolone on trial). I continued to try and exercise as.much as possible no matter how small. At times when on the floor with grandkids, needed help getting back up. I continued to try and windsurf, restricting it to lake, I'd sail across and definitely had to rest for at least 5 mins (which feels like an hour) before getting back across and rest again due, as with you, to out of breath and strength. I just about managed to do things maybe helped by fact I done things previously and decent fitness. Things did improve over time and at least it helped me that I understood why it was this way.
Things should hopefully improve for you.
Peter
User
Posted 06 Dec 2022 at 19:59

Originally Posted by: Online Community Member


That's good. How long since you stopped?



I think it was around feb in 2020, that took me up to may (3 months worth) 
I think they would have carried on with the HT, but as my PSA was almost unmeasurable then, they let me stop the HT.
I had a GP health MOT recently, all OK - except my Blood pressure had gone up, now on Ramipril 10 & it seems OK with that. Daily BP tests.

Edited by member 06 Dec 2022 at 20:05  | Reason: Not specified

User
Posted 11 Dec 2022 at 19:21

Who knew that HT can seriously increase your chances of a heart attack?


A week or so ago I received something of a shock. The results of several bloods I had done (not directly PCa related) showed quite a dramatic deterioration in my cholesteral levels. In particular, the report showed that serum triglycerides (the bad guys) have risen quite sharply, to 5.36. To put this number into context, whilst the safe parameters for serum triglycerides are quoted as being between 0.00 to 1.69, the trigger point for serious risk of stroke / heart attack / diabetes is 5.7, to which  number I appear to be dangerously close.


As if having advanced prostate cancer is not enough, it was even more of a shock to read what Dr Google says:

'Some research has suggested that the risk of high blood pressure, diabetes, strokes, heart attacks, and even death from heart disease IS HIGHER IN MEN TREATED WITH HORMONE THERAPY (my caps), although not all studies have found this.'


I do not recall my oncologist alerting me to this particular risk!


It's not as though I have been leading an unhealthy lifestyle either. Prior to starting hormone therapy in July my weight was comfortably within the guidelines for age and height. I was also maintaining regular exercise, averaging a minimum of 5 miles walk daily, as well as adhering reasonably closely to a healthy diet that excluded alcohol, carbonated drinks, sugary, salty and fatty foods etc - albeit with the naughty indulgences of buttered bread and a daily packet of crisps!.


Tbf, since starting hormone therapy five months ago it's been much tougher to maintain the daily exercise regime. Also, I have to admit that adherence to my strict diet has begun to fray at the edges somewhat.


Now all of this begs the question, how much of the deterioration in my cholesteral levels is down to lifestyle changes and how much to the effects of hormone therapy?


Either way, the urgent need to get back to the previous fitness / healthy diet regime has hit my like an arrow to the heart!


 

Edited by member 11 Dec 2022 at 19:50  | Reason: Not specified

User
Posted 11 Dec 2022 at 19:39

The risk of HT were not discussed at all with my oncologist. The benefits for long term use are very minimal for someone at my staging.


Hope all works out for you.

User
Posted 11 Dec 2022 at 20:29

Originally Posted by: Online Community Member
'Some research has suggested that the risk of high blood pressure, diabetes, strokes, heart attacks, and even death from heart disease IS HIGHER IN MEN TREATED WITH HORMONE THERAPY (my caps), although not all studies have found this.'


It's just another reason to keep HT to a minimum and not go for 3 years just because it might reduce the chances of cancer recurring.


Jules

User
Posted 11 Dec 2022 at 20:59

Lifestooshort. When I was on HT my GP commented my cholesterol was high. He said that is often the case on HT. Apparently testosterone is manufactured from cholesterol. So you aren't using cholesterol up like you used to. I guess you are on HT. I was on HT for two years, and considered the short term risks acceptable for the desired outcome. Of course if you are on HT for life the risks are long term, but sadly it will probably be cancer that gets you before the effects of zoladex get you.

Dave

User
Posted 12 Dec 2022 at 10:09

Thanks for all the additional info, I was not made aware of the HT risks by the Onco, but I knew it's effects on me, so I am pleased I was a bit pushy, when I told them i would only take it for a minimum of time.
Roger Day (A Radio Caroline DJ) only had RT, no HT a few years ago, & he's still going strong.


It is a bit, dammed if you do & dammed if you don't - a bit like a lot of NHS medical treatment:
"Solve one problem, & create with the treatment, two more"

lifestooshort: I hope you are on Statins - they can help. 

Edited by member 12 Dec 2022 at 10:12  | Reason: Not specified

User
Posted 12 Dec 2022 at 21:15
Bob, the doctors (worldwide, not just NHS) don't have the ability to foretell your personal future. What they do is keep records of hundreds of previous patients and make recommendations assuming you are the average. Unfortunately most of us aren't exactly the average.

So on average RT works better on people who have had prior HT. But that average could be from some people for whom it makes a big difference, and others for whom it makes no difference at all - there is no way of knowing where any of us will fit. And to be honest, given the choice yourself you would probably go for the approach most likely to succeed in the worst case scenario.

Back to Lifestooshort, whether or not it was related to my treatment (it could have been me turning 70) my GP decided to test all sorts of things. I am now on a blood pressure medication and a statin. Who knows whether it is to do with the HT or RT, or whether the drugs will make a difference to me rather than the average patient, but I've not complained. It is enough to deal with cancer risk without adding cardiovascular risk.
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User
Posted 16 Nov 2022 at 17:57

Joint pain is quite common when starting hormone therapy, particularly hips. It does wear off after a while in most cases.


You should regard exercise as mandatory while on hormone therapy. Walking is good, and easily modified in extent and intensity as you get fitter.

User
Posted 16 Nov 2022 at 21:15
Yes I was on Zoladex for 3yrs in total and had aching joints etc for a while, perfectly normal as they say. No problem after a while.
Peter
User
Posted 16 Nov 2022 at 21:56
I don't recall noticing joint aches (more than I get anyway) but I was advised that Zoladex put me at risk of losing bone mass. The advice, which I have followed, was to take vitamin D supplements and do some weight-bearing exercises as well as maintaining general cardiovascular exercise (walking, cycling, etc).

It is a potentially anxious time - follow the advice as best as you can and maintain a positive attitude.
User
Posted 16 Nov 2022 at 22:38
The zoladex leads to your body changing in a similar way to an adolescent girl preparing for adulthood and child birth - ligaments loosen, the hips / pelvis widen slightly. It can cause joint pain.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Nov 2022 at 10:18
During my time on it, I had a frozen shoulder - not nice, I had previously taken up Tennis for extra exercise that had been advised, not a good idea, you learn.
User
Posted 24 Nov 2022 at 22:36
During the first 6 months on Zoladex, the main side effect for me was premature fatigue, so I had to sit out more games of 'Short Tennis' to recover. The Short Tennis was not available during the last last couple or so months on Zoladex when I had RT and I don't think I would have been up for it due to increasing tiredness and aches had the facility been available.
Barry
User
Posted 27 Nov 2022 at 22:27

Originally Posted by: Online Community Member


 


You should regard exercise as mandatory while on hormone therapy. Walking is good, and easily modified in extent and intensity as you get fitter.


I know you are right but for me the side effects of HT are now rendering even gentle walking extremely challenging. Am getting hot flushes about every 30-40 minutes during the day and these are accompanied by total energy wipe-outs and breathlessness. But the killer is that my legs go weak and just give, meaning I need to be able to sit down and rest for ten/fifteen minutes before I have recovered enough to be able to continue. As a result I am struggling to do any significant exercise.


I know I should exercise more but it's not easy to see a way forward.


 

User
Posted 27 Nov 2022 at 23:22
Give the PCUK nurses a call (number at the top of this Web page). PCUK did some research on HT induced fatigue and the nurses may have suggestions that will help.

Also consider swimming - previous member Old Al (who was in his 50s) was forced into using a wheelchair by his HT fatigue - through swimming he eventually regained mobility.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Nov 2022 at 18:50
LTS, I can really understand about the 'extreme' tiredness/weakness you mention. I had Zoladex for 3 yrs (2 yrs of abiraterone, enzalutimide,prednisolone on trial). I continued to try and exercise as.much as possible no matter how small. At times when on the floor with grandkids, needed help getting back up. I continued to try and windsurf, restricting it to lake, I'd sail across and definitely had to rest for at least 5 mins (which feels like an hour) before getting back across and rest again due, as with you, to out of breath and strength. I just about managed to do things maybe helped by fact I done things previously and decent fitness. Things did improve over time and at least it helped me that I understood why it was this way.
Things should hopefully improve for you.
Peter
User
Posted 28 Nov 2022 at 19:22
I also had a feeling of sadness ? As well as joint pain , hot flushes and losing interest in sex , what a strong drug this is but as the ramones say hey oy let’s go !
User
Posted 04 Dec 2022 at 10:30

I get joint/muscle aches and pains, fatigue, difficultly focusing and memory recall, lack of interest in doing things. Life is a chore.


Considering stopping Zoladex after 1yr not 3yrs. Quality of life is important.

User
Posted 05 Dec 2022 at 19:43

Originally Posted by: Online Community Member


I get joint/muscle aches and pains, fatigue, difficultly focusing and memory recall, lack of interest in doing things. Life is a chore.


Considering stopping Zoladex after 1yr not 3yrs. Quality of life is important.



I had it for nearly 2 years - I think the onco, would have preferred me to have it longer - but as you say
Quality of life is important. I seem to be just about OK now.

User
Posted 05 Dec 2022 at 19:49

That's good. How long since you stopped?

User
Posted 06 Dec 2022 at 19:59

Originally Posted by: Online Community Member


That's good. How long since you stopped?



I think it was around feb in 2020, that took me up to may (3 months worth) 
I think they would have carried on with the HT, but as my PSA was almost unmeasurable then, they let me stop the HT.
I had a GP health MOT recently, all OK - except my Blood pressure had gone up, now on Ramipril 10 & it seems OK with that. Daily BP tests.

Edited by member 06 Dec 2022 at 20:05  | Reason: Not specified

User
Posted 11 Dec 2022 at 19:21

Who knew that HT can seriously increase your chances of a heart attack?


A week or so ago I received something of a shock. The results of several bloods I had done (not directly PCa related) showed quite a dramatic deterioration in my cholesteral levels. In particular, the report showed that serum triglycerides (the bad guys) have risen quite sharply, to 5.36. To put this number into context, whilst the safe parameters for serum triglycerides are quoted as being between 0.00 to 1.69, the trigger point for serious risk of stroke / heart attack / diabetes is 5.7, to which  number I appear to be dangerously close.


As if having advanced prostate cancer is not enough, it was even more of a shock to read what Dr Google says:

'Some research has suggested that the risk of high blood pressure, diabetes, strokes, heart attacks, and even death from heart disease IS HIGHER IN MEN TREATED WITH HORMONE THERAPY (my caps), although not all studies have found this.'


I do not recall my oncologist alerting me to this particular risk!


It's not as though I have been leading an unhealthy lifestyle either. Prior to starting hormone therapy in July my weight was comfortably within the guidelines for age and height. I was also maintaining regular exercise, averaging a minimum of 5 miles walk daily, as well as adhering reasonably closely to a healthy diet that excluded alcohol, carbonated drinks, sugary, salty and fatty foods etc - albeit with the naughty indulgences of buttered bread and a daily packet of crisps!.


Tbf, since starting hormone therapy five months ago it's been much tougher to maintain the daily exercise regime. Also, I have to admit that adherence to my strict diet has begun to fray at the edges somewhat.


Now all of this begs the question, how much of the deterioration in my cholesteral levels is down to lifestyle changes and how much to the effects of hormone therapy?


Either way, the urgent need to get back to the previous fitness / healthy diet regime has hit my like an arrow to the heart!


 

Edited by member 11 Dec 2022 at 19:50  | Reason: Not specified

User
Posted 11 Dec 2022 at 19:39

The risk of HT were not discussed at all with my oncologist. The benefits for long term use are very minimal for someone at my staging.


Hope all works out for you.

User
Posted 11 Dec 2022 at 20:29

Originally Posted by: Online Community Member
'Some research has suggested that the risk of high blood pressure, diabetes, strokes, heart attacks, and even death from heart disease IS HIGHER IN MEN TREATED WITH HORMONE THERAPY (my caps), although not all studies have found this.'


It's just another reason to keep HT to a minimum and not go for 3 years just because it might reduce the chances of cancer recurring.


Jules

User
Posted 11 Dec 2022 at 20:59

Lifestooshort. When I was on HT my GP commented my cholesterol was high. He said that is often the case on HT. Apparently testosterone is manufactured from cholesterol. So you aren't using cholesterol up like you used to. I guess you are on HT. I was on HT for two years, and considered the short term risks acceptable for the desired outcome. Of course if you are on HT for life the risks are long term, but sadly it will probably be cancer that gets you before the effects of zoladex get you.

Dave

User
Posted 12 Dec 2022 at 10:09

Thanks for all the additional info, I was not made aware of the HT risks by the Onco, but I knew it's effects on me, so I am pleased I was a bit pushy, when I told them i would only take it for a minimum of time.
Roger Day (A Radio Caroline DJ) only had RT, no HT a few years ago, & he's still going strong.


It is a bit, dammed if you do & dammed if you don't - a bit like a lot of NHS medical treatment:
"Solve one problem, & create with the treatment, two more"

lifestooshort: I hope you are on Statins - they can help. 

Edited by member 12 Dec 2022 at 10:12  | Reason: Not specified

User
Posted 12 Dec 2022 at 21:15
Bob, the doctors (worldwide, not just NHS) don't have the ability to foretell your personal future. What they do is keep records of hundreds of previous patients and make recommendations assuming you are the average. Unfortunately most of us aren't exactly the average.

So on average RT works better on people who have had prior HT. But that average could be from some people for whom it makes a big difference, and others for whom it makes no difference at all - there is no way of knowing where any of us will fit. And to be honest, given the choice yourself you would probably go for the approach most likely to succeed in the worst case scenario.

Back to Lifestooshort, whether or not it was related to my treatment (it could have been me turning 70) my GP decided to test all sorts of things. I am now on a blood pressure medication and a statin. Who knows whether it is to do with the HT or RT, or whether the drugs will make a difference to me rather than the average patient, but I've not complained. It is enough to deal with cancer risk without adding cardiovascular risk.
 
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