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User
Posted 10 Sep 2025 at 19:10

Hi

We finally got to see an oncologist today after 10 weeks being on cancer pathway. My husband has been on Zoladex for 4 weeks. His Gleason score is 5+4. 
the oncologist has said he will start on Apalatumide alongside Zoladex. Has anyone any experience of this?  We did think we would be offered some options but we haven’t been. I have looked up Abiratone and wonder if anyone can shine a light on differences. 

Thanks for reading. 

User
Posted 10 Sep 2025 at 22:10

Safx, I went down the private health insurance route after surgery and salvage RT. In the private sector I was going to be on zoladex and abiraterone. For various reasons I transferred back to the NHS and I am on decapeptyl and apalutamide.

My NHS consultant said there wasn't enough evidence to say one was better than the other. When I pushed him and said what would you want your brother,father son etc too be on he said he would be happy for them to be on either and abi is not available in England for my situation anyway.

Now 5 months into decapeptyl and 4 months into apalutamide,the flushes and fatigue are an inconvenience, I did drop the apalutamide dose from 4 tablets to three ,that has helped so I might go back up to 4 tablets. It is what it is.

Thanks 

User
Posted 13 Sep 2025 at 10:25

Sue,

My understanding is that not all GPs/hospitals request testosterone as well as PSA when ordering blood tests.  I think it's good to ask if you can have both monitored.   In my case, my testosterone levels began to go up after a couple of years on decapeptyl and enzalutamide (while PSA remained undetectable), so I switched decapeptyl to zoladex which has slowly reduced my testosterone levels back towards 1.

Bw

Will

User
Posted 13 Sep 2025 at 20:12

It's not necessarily done automatically, but definitely worth doing . I never had a problem getting it added to my green sheet from the hospital. ( In fact I wrote it in myself, and it always got done!)

User
Posted 14 Sep 2025 at 15:44

The only hospital which routinely measures Testosterone with every PSA test is UCLH as far as I know, although the oncologist who pushed for this has left, so not sure if they still do that.

It would be useful if everyone who is going on to time-limited hormone therapy on a curative treatment path had a baseline Testosterone test before starting the hormone therapy, but that's extremely rare.

My oncologist and some others add Testosterone to PSA tests when people finish hormone therapy, until Testosterone is back at a stable level. Without knowing what Testosterone is doing during this time, you can't make sense of the PSA level, and it's also useful to know how the recovery from hormone therapy is going.

User
Posted 14 Sep 2025 at 18:53
Yes my treatment was RT/HT my testosterone was only tested some time after HT finished to check level raisedvetc and it was, that was the only ti.e it was tested though I guess if I'd havecasked I could have had it tested other time(s). I would agree it would be good to have a starting point to go on.

Peter

User
Posted 15 Sep 2025 at 08:04

I'm at the NNUH and all my PSA tests have included Testo once I started hormone therapy. Would have liked a baseline before hand. I didn't even think about it at the time. Still nice to know it's being monitored along with PSA and will be interesting to see how things go once off the HT.

User
Posted 16 Sep 2025 at 20:07

Hi 

I was started on Relugolix in July and 8 weeks later I was given Apalutamide (4), I was having really bad restless legs syndrome, sleeplessness and hot flushes. When I asked the Oncologist about this she told me to stop taking the Apalutamide and wait for the side effects to stop which I did for a week but the side effects didn’t subside so I started back taking the 4 again. I am still having the side effects but just trying to manage them, I was told about taking Valerian to help with the sleeplessness which I did try and so far it has helped me. The fatigue and hot flushes are just something I am learning to live as is the restless legs syndrome. I am seeing the Oncologist again in  2 weeks so I will ask again about all the side effects. 
Before starting on the Apalutamide my PSA had come down from 42 to 3, I am not sure if my testosterone level is part of the same test but again I will ask.

User
Posted 19 Sep 2025 at 12:55

Hi Safx.

My Gleason score is 5+4=9, and I have been on Zoladex for nearly four years. I will be on it for life. I am also on Apalutamide, so my treatment very much echos the treatment in your post.

Originally I was on 240mg of Apalutamide but following some intolerance on my part the dose was reduced to 180mg and, more recently, to 120mg. I had a three-month break from the Apalutamide due to this intolerance before I restarted on the reduced doses, and I have continued on the lower dose since.

During the break, my PSA shot up to 23, but since I restarted it has reduced to 0.7 at my most recent blood test. I was also prescribed Medroxyprogesterone to help with the inevitable hot flushes. I did try acupuncture. This helps some people with the hot flushes but did not work for me.

My testosterone is measured along with my PSA.

I hope this info helps. Good luck with the continued treatment.

User
Posted 30 Sep 2025 at 19:52

Hi

I started on Relugolix and then Apalutamide 6 weeks later. Because I was having issues with the Apalutamide I was told that the Apalutamide is a back up to the Relugolix. 

User
Posted 01 Oct 2025 at 09:41

Hi Sue,

I was started on Zoladex as soon as I was diagnosed in 2022. Soon after that, I underwent 6 sessions of chemo and later 37 of radiotherapy. When it was found that the chemo and radiation had not checked my PC I was started on Apalutamide, first on a full dose and later on a reduced dose, so there was a long gap of maybe a year between the two hormone therapies. I was on Zoladex throughout.

I hope this is clear.

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User
Posted 10 Sep 2025 at 22:10

Safx, I went down the private health insurance route after surgery and salvage RT. In the private sector I was going to be on zoladex and abiraterone. For various reasons I transferred back to the NHS and I am on decapeptyl and apalutamide.

My NHS consultant said there wasn't enough evidence to say one was better than the other. When I pushed him and said what would you want your brother,father son etc too be on he said he would be happy for them to be on either and abi is not available in England for my situation anyway.

Now 5 months into decapeptyl and 4 months into apalutamide,the flushes and fatigue are an inconvenience, I did drop the apalutamide dose from 4 tablets to three ,that has helped so I might go back up to 4 tablets. It is what it is.

Thanks 

User
Posted 11 Sep 2025 at 19:34

I wouldn't get too hung up on what might, or might not, be a theoretical 'best'. The only question is what works, and you will find out soon enough.

I started on Prostap , which failed, and was switched to Zoladex, which didn't . 

Do make sure you get testosterone readings at each PSA test: it may give you an earlier warning of success/ failure that the PSA number, which can be a bit of a lagging indicator.

User
Posted 11 Sep 2025 at 20:09

Thanks for information. My husband has not had PSA tested since diagnosis but he is being called in for blood test before adding apalatumide to treatment. Is testosterone levels automatically checked at same time as PSA?

Sue

User
Posted 13 Sep 2025 at 10:25

Sue,

My understanding is that not all GPs/hospitals request testosterone as well as PSA when ordering blood tests.  I think it's good to ask if you can have both monitored.   In my case, my testosterone levels began to go up after a couple of years on decapeptyl and enzalutamide (while PSA remained undetectable), so I switched decapeptyl to zoladex which has slowly reduced my testosterone levels back towards 1.

Bw

Will

User
Posted 13 Sep 2025 at 20:12

It's not necessarily done automatically, but definitely worth doing . I never had a problem getting it added to my green sheet from the hospital. ( In fact I wrote it in myself, and it always got done!)

User
Posted 14 Sep 2025 at 15:44

The only hospital which routinely measures Testosterone with every PSA test is UCLH as far as I know, although the oncologist who pushed for this has left, so not sure if they still do that.

It would be useful if everyone who is going on to time-limited hormone therapy on a curative treatment path had a baseline Testosterone test before starting the hormone therapy, but that's extremely rare.

My oncologist and some others add Testosterone to PSA tests when people finish hormone therapy, until Testosterone is back at a stable level. Without knowing what Testosterone is doing during this time, you can't make sense of the PSA level, and it's also useful to know how the recovery from hormone therapy is going.

User
Posted 14 Sep 2025 at 18:53
Yes my treatment was RT/HT my testosterone was only tested some time after HT finished to check level raisedvetc and it was, that was the only ti.e it was tested though I guess if I'd havecasked I could have had it tested other time(s). I would agree it would be good to have a starting point to go on.

Peter

User
Posted 15 Sep 2025 at 08:04

I'm at the NNUH and all my PSA tests have included Testo once I started hormone therapy. Would have liked a baseline before hand. I didn't even think about it at the time. Still nice to know it's being monitored along with PSA and will be interesting to see how things go once off the HT.

User
Posted 16 Sep 2025 at 20:07

Hi 

I was started on Relugolix in July and 8 weeks later I was given Apalutamide (4), I was having really bad restless legs syndrome, sleeplessness and hot flushes. When I asked the Oncologist about this she told me to stop taking the Apalutamide and wait for the side effects to stop which I did for a week but the side effects didn’t subside so I started back taking the 4 again. I am still having the side effects but just trying to manage them, I was told about taking Valerian to help with the sleeplessness which I did try and so far it has helped me. The fatigue and hot flushes are just something I am learning to live as is the restless legs syndrome. I am seeing the Oncologist again in  2 weeks so I will ask again about all the side effects. 
Before starting on the Apalutamide my PSA had come down from 42 to 3, I am not sure if my testosterone level is part of the same test but again I will ask.

User
Posted 16 Sep 2025 at 20:30

Originally Posted by: Online Community Member
I'm at the NNUH and all my PSA tests have included Testo once I started hormone therapy.

That's good to know.

User
Posted 19 Sep 2025 at 12:55

Hi Safx.

My Gleason score is 5+4=9, and I have been on Zoladex for nearly four years. I will be on it for life. I am also on Apalutamide, so my treatment very much echos the treatment in your post.

Originally I was on 240mg of Apalutamide but following some intolerance on my part the dose was reduced to 180mg and, more recently, to 120mg. I had a three-month break from the Apalutamide due to this intolerance before I restarted on the reduced doses, and I have continued on the lower dose since.

During the break, my PSA shot up to 23, but since I restarted it has reduced to 0.7 at my most recent blood test. I was also prescribed Medroxyprogesterone to help with the inevitable hot flushes. I did try acupuncture. This helps some people with the hot flushes but did not work for me.

My testosterone is measured along with my PSA.

I hope this info helps. Good luck with the continued treatment.

User
Posted 30 Sep 2025 at 18:40

Thanks for reply. Can I ask how long between starting first and second hormone treatment. 
Having seen oncologist 3 weeks ago we are still waiting for blood test before starting apalatumide. We have tried to chase up but told we will hear in due course. 
just concerned delay may influence outcome. My husband has been on Zoladox for 7 weeks. 
Thanks

Sue

User
Posted 30 Sep 2025 at 19:52

Hi

I started on Relugolix and then Apalutamide 6 weeks later. Because I was having issues with the Apalutamide I was told that the Apalutamide is a back up to the Relugolix. 

User
Posted 01 Oct 2025 at 09:41

Hi Sue,

I was started on Zoladex as soon as I was diagnosed in 2022. Soon after that, I underwent 6 sessions of chemo and later 37 of radiotherapy. When it was found that the chemo and radiation had not checked my PC I was started on Apalutamide, first on a full dose and later on a reduced dose, so there was a long gap of maybe a year between the two hormone therapies. I was on Zoladex throughout.

I hope this is clear.

 
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