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Can I change my Meds

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User
Posted 05 Dec 2023 at 06:37

Hi 

A specific thanks to those who answered my other questions. I have been on Zoladex long enough now to know that it has some unpleasant side effects. The weight gain is depressing but I realise that all meds have a downside. However the fatigue which lasts for two or three weeks after each shot and the joint pain are getting me down. I am even wondering if it is responsible for the Gastritis I have now had for three months. My Dr says there is no link but I am not convinced. My questions are: Can I change? What would be a better alternative? Or is it a case of the devil and the deep blue sea?

Thanks 

Rory

User
Posted 05 Dec 2023 at 18:45
I specifically asked for Decapeptyl rather than the alternatives after research on this site. In my case zero weight gain. It’s taken 3 years for my libido to drop. Fatigue, hot flushes and joint pain are a given it seems. Not sure if you taking Tadalafil but that and similar meds can cause bad acid reflux. A PPI was prescribed for me. Good luck
User
Posted 05 Dec 2023 at 22:37

How long have you left to run on hormone therapy?

If you're seeing cyclic side effects with the injections, I might be a bit worried they aren't working for you for the full 12 weeks, and a Testosterone test just before the next injection might be a good idea.

You could ask to try Prostap or Decapeptyl instead. Some areas only make one of the 3 drugs available, and some surgeries often switch to the cheapest at any moment.

Another option might be to switch to 4-weekly Zoladex - it has less of an initial dosing spike. (The drug works out cheaper, but when you add in the cost of 2 extra nurses appointments every 12 weeks, it's overall more expensive.)

Yet another option if you are on time-limited hormone therapy might be to switch to Bicalutamide tablets. It's not as effective, but has fewer side effects.

Edited by member 05 Dec 2023 at 22:38  | Reason: Not specified

User
Posted 05 Dec 2023 at 06:37

Hi 

A specific thanks to those who answered my other questions. I have been on Zoladex long enough now to know that it has some unpleasant side effects. The weight gain is depressing but I realise that all meds have a downside. However the fatigue which lasts for two or three weeks after each shot and the joint pain are getting me down. I am even wondering if it is responsible for the Gastritis I have now had for three months. My Dr says there is no link but I am not convinced. My questions are: Can I change? What would be a better alternative? Or is it a case of the devil and the deep blue sea?

Thanks 

Rory

User
Posted 05 Dec 2023 at 18:52

You could refuse the Zoladex shots but they could then refuse to moniter you 

As was the case of my husband who is now having my menopause phytoestrogen suppliment instead 

Edited by member 05 Dec 2023 at 19:01  | Reason: Not specified

User
Posted 05 Dec 2023 at 21:45

Hi Rory,

I’m on Prostap 3 and have all these side effects except for extreme fatigue funnily enough. Yes I get tired in the evenings and in bed by 10pm, but not the extreme fatigue that others get. A good friend of mine on exactly the same treatment sufferers extreme fatigue, can’t even walk the dog. So, it seems to affect different men in different ways.
I find that the more I exercise and keep active the less tired I get. It’s a struggle at times but it DOES help. My joint ache is my worst issue  ATM but it’s getting better. Either it’s down to acupuncture or Magnesium Glycinate supplement which I started a couple of weeks ago.
When I got my last jab I asked the CSN if I could change but she told me that Prostap was one of the kindest as far as side effects go! This shocked me and I thought to myself ‘I’m glad I’m not on Zoladex then!

One thing that is for sure is that there is a lack of support for those on HT and dealing with side effects which have a serious effect on QOL. I’ve felt abandoned since finishing RT and found I have to be VERY proactive in finding solutions.

User
Posted 06 Dec 2023 at 00:13

Originally Posted by: Online Community Member
However the fatigue which lasts for two or three weeks after each shot and the joint pain are getting me down.

The issue is that these are most probably side effects of the loss of testosterone rather than side effects of the drug so changing drug is not necessarily going to get rid of the symptoms

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

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User
Posted 05 Dec 2023 at 17:58

Have you had the accompanying RT Rory ?

User
Posted 05 Dec 2023 at 18:04

Yes I have.

User
Posted 05 Dec 2023 at 18:45
I specifically asked for Decapeptyl rather than the alternatives after research on this site. In my case zero weight gain. It’s taken 3 years for my libido to drop. Fatigue, hot flushes and joint pain are a given it seems. Not sure if you taking Tadalafil but that and similar meds can cause bad acid reflux. A PPI was prescribed for me. Good luck
User
Posted 05 Dec 2023 at 18:52

You could refuse the Zoladex shots but they could then refuse to moniter you 

As was the case of my husband who is now having my menopause phytoestrogen suppliment instead 

Edited by member 05 Dec 2023 at 19:01  | Reason: Not specified

User
Posted 05 Dec 2023 at 21:45

Hi Rory,

I’m on Prostap 3 and have all these side effects except for extreme fatigue funnily enough. Yes I get tired in the evenings and in bed by 10pm, but not the extreme fatigue that others get. A good friend of mine on exactly the same treatment sufferers extreme fatigue, can’t even walk the dog. So, it seems to affect different men in different ways.
I find that the more I exercise and keep active the less tired I get. It’s a struggle at times but it DOES help. My joint ache is my worst issue  ATM but it’s getting better. Either it’s down to acupuncture or Magnesium Glycinate supplement which I started a couple of weeks ago.
When I got my last jab I asked the CSN if I could change but she told me that Prostap was one of the kindest as far as side effects go! This shocked me and I thought to myself ‘I’m glad I’m not on Zoladex then!

One thing that is for sure is that there is a lack of support for those on HT and dealing with side effects which have a serious effect on QOL. I’ve felt abandoned since finishing RT and found I have to be VERY proactive in finding solutions.

User
Posted 05 Dec 2023 at 22:37

How long have you left to run on hormone therapy?

If you're seeing cyclic side effects with the injections, I might be a bit worried they aren't working for you for the full 12 weeks, and a Testosterone test just before the next injection might be a good idea.

You could ask to try Prostap or Decapeptyl instead. Some areas only make one of the 3 drugs available, and some surgeries often switch to the cheapest at any moment.

Another option might be to switch to 4-weekly Zoladex - it has less of an initial dosing spike. (The drug works out cheaper, but when you add in the cost of 2 extra nurses appointments every 12 weeks, it's overall more expensive.)

Yet another option if you are on time-limited hormone therapy might be to switch to Bicalutamide tablets. It's not as effective, but has fewer side effects.

Edited by member 05 Dec 2023 at 22:38  | Reason: Not specified

User
Posted 06 Dec 2023 at 00:13

Originally Posted by: Online Community Member
However the fatigue which lasts for two or three weeks after each shot and the joint pain are getting me down.

The issue is that these are most probably side effects of the loss of testosterone rather than side effects of the drug so changing drug is not necessarily going to get rid of the symptoms

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

User
Posted 06 Dec 2023 at 03:52

Chris 

Many thanks for your suggestion. Unfortunately in my case it is not just acid reflux, I had an endoscopy and I have gastritis, effectively lesions on my stomach. Quite unpleasant and o suspect the Big Z.

Thank you 

Rory 

User
Posted 06 Dec 2023 at 12:11

Thanks Decho

My joint pain at one stage was so debilitating that I felt like i was 80 not 60. I know what you mean about exercise. I also know what you mean about support on HT. Had I received a full appraisal of the side effects in advance of treatment I would have opted for surgery! Easy to say in hindsight but true.

Thanks

Rory

User
Posted 06 Dec 2023 at 12:15

Hi Andy I am at the midpoint of HT. I assume it is working as my PSA is falling (fingers crossed) . I really beginning to draw the conclusion that high grade cancer is underplayed with that old Christmas jingle that you don't die from it you doe with it. I imagine for a lot of us it's just buying time.thanks

Rory

User
Posted 06 Dec 2023 at 12:18

Hi Lyn

I doubt that very much. Zoladex side effects, in my case are pretty adverse. I also have swollen ankles for a couple of weeks after I have the jab. I am also convinced my Gastritis is from Zoladex.

Thanks

Rory

Edited by member 06 Dec 2023 at 12:23  | Reason: Not specified

User
Posted 06 Dec 2023 at 13:35

Originally Posted by: Online Community Member

You could refuse the Zoladex shots but they could then refuse to moniter you 

As was the case of my husband who is now having my menopause phytoestrogen suppliment instead 

 

is your husband taking your menopause supplement instead of or as well of orthodox treatment? What did doctors say? 

User
Posted 06 Dec 2023 at 13:38

Originally Posted by: Online Community Member

Thanks Decho

My joint pain at one stage was so debilitating that I felt like i was 80 not 60. I know what you mean about exercise. I also know what you mean about support on HT. Had I received a full appraisal of the side effects in advance of treatment I would have opted for surgery! Easy to say in hindsight but true.

Thanks

Rory

Hi Rory,

So was my joint pain…I had more trouble getting out a chair than my 95 year mother in law😱 However for some strange reason it’s getting better. If it was the lack of testosterone then I don’t understand why, I’m still not convinced that some of this side effects are caused by the drug itself. Unless of course the Prostap has stopped working and my testosterone is returning🤔🤔🤔

PSA test tomorrow then a week of waiting and being like a bear with a sore head, in fact I’m a bit tetchy today, just ask my poor wife😟…I hate the PSA anxiety and why I need to wait for a week is anyone’s guess, when I know some that get the result the next working day!
I still wish I had been offered surgery…but then again had I opted for that,  there’s a high chance I would have required SRT, so there’s no easy option.

Anyway I just try and have as much fun as my side effects allow me to, you can either laugh or cry…and I think laughing is better for the soul.

All the best,

Derek

User
Posted 06 Dec 2023 at 15:25

My husbands psa rose and he was told to have radiotherapy and was given the zoladex I urged him to hold on bc I was concerned about side effects 

They told him they wouldn't give him any future scans if he didn't have the hormone blocker and radiotherapy even though nothing had  shown up on the pet  scan so they would just be flooding all his pelvic bed with no target 

Obvs I wasn't popular bc of my questionIing and reluctance to rush in

So yes my husband is having a phytoestrogen called Aguaje atm  his GP is doing 3 monthly PSA tests his next one is after Christmas so we will have to take stock then and I have now  said to him that if he wants radiotherapy it's up to him its his body but it's reasonable to want a target first 

The dilemma will be whether they would give him radiotherapy without ADT bc I am sure a good phytestrogen could work as well in fact they did a test giving men estrogen patches which worked fine but came up with some lame excuse not to roll it out - AstraZenica the makers of Zoladex wouldn't like it would they 

But you - Rory - have  had your RT ?

 

Edited by member 06 Dec 2023 at 17:41  | Reason: Add more info

User
Posted 06 Dec 2023 at 17:01

Derek

Your post made me laugh. It's all a conundrum. I am hoping Andy explains more clearly what he meant by his response, which I think was alluding to the fact that I might be building up a tolerance to the drug. One thing I did reflect on is to always check the actual dosage with the nurse. I didn't do this the last time and it's quite important as it wouldn't do to receive the 4 weekly dose by mistake when it's supposed to be the 12 weekly. 

Thanks again

Rory

User
Posted 06 Dec 2023 at 17:04

Lizzo 

I have high grade Gleason 8 so it is a standard recommendation to have HT with RT. Notwithstanding the side effects, with a high grade prostate cancer, it would be folly not to have HT. What were your partners Gleason and PSA?

Thanks

Rory

 

 

Edited by member 28 Dec 2023 at 11:30  | Reason: Not specified

User
Posted 06 Dec 2023 at 20:26

Originally Posted by: Online Community Member

Lizzo 

I have high grade Gleason 8 so it is a standard recommendation to have HT with RT. Notwithstanding the side effects, with a high grade prostate cancer, it would be folly not to have HT. What were your partners Gleason and PSA?

Thanks

Rory

 

Jeff had a gleeson score of 8 and psa of 8.63  he chose  surgery October 2018 

 

 

Edited by member 07 Dec 2023 at 08:10  | Reason: Not specified

 
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