I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Metastatic castrate resistant prostate cancer (mCRPC) and hormone treatment

User
Posted 12 Apr 2025 at 09:31

I have questions about hormone treatments for my OH now he has reached mCRPC. 


Background: Diagnosed T3b N1 M0 with PSA 264 Gleason G5+4. Decapeptyl initially started Nov 2022, PSA reduced to 23 before radiation treatment May 2023, reaching a nadir of PSA 2.3 Nov 2023.  OH stopped Decapeptyl not liking the side effects but Sep 2023 he was persuaded to restart.  Four small bone metastases showed up on a CT scan Jan 2024 so no curative treatment path.  Mar 2024 again stopped Decapeptyl and by Jun 2024 PSA had risen to 13.8, Decapeptyl restarted again.   Oct 2024 PSA had increased to 25.7 now castrate resistant, adding in daily 2x500mg Abiraterone and 10g prednisolone.  Nov 2024 PSA increased to 31.2, Jan 2025 PSA increased to 60.3 (2 months doubling time).  Steroid switch for the Abiraterone made to 1 mg dexamethasone.  Mar 2025 PSA reduced to 48.3, dexamethasone increased to 2mg to try and bring PSA down more.  Next meeting with consultant is Jun 2025.


Questions: I understand that not all PC cells will be hormone resistant, which is why Decapeptyl is lifelong, but the side effects are now causing more problems such as laboured breathing which I am sure is the large stomach limiting lung capacity and fatigue.  Could we simply stop Decapeptyl once more or even just have another break and see if the PSA rises in any different way as the PC currently isn’t being controlled much. Also why do we need Decapeptyl if Abiraterone stops the testosterone feeding PC, I understand they work in different ways.  When you have mCRPC is suppression of testosterone so important. 


I am probably over thinking things as always but just trying to understand this before our next meeting.  Thanks to everyone on this really helpful forum.


 

User
Posted 13 Apr 2025 at 00:38

When you become castrate resistant, it's a new mutation which has developed which is castrate resistant - the original cancer is still being controlled, which is why you stay on the basic hormone therapy.


Some trials have shown that if you're on Abiraterone, you don't need Decapepty or other injections as the Abiraterone also stops the testicles making hormone therapy. In the UK, you are unlikely to be able to get Abiraterone on the NHS unless you are on a regular hormone therapy too, as this wasn't known when the rules were drawn up.


However, it's unlikely to be the Decapeptyl which is directly causing the side effects, it's the loss of Testosterone. So switching to a different way of suppressing Testosterone is unlikely to make any difference.


Having said that, I don't really understand what causes the breathlessness symptom. Hormone therapy does lower your hemoglobin levels, but only from the male range down to the slightly lower female range, so I don't think it can be that alone.

User
Posted 13 Apr 2025 at 09:07

Hi - I definitely get out of breath more easily since starting hormone therapy. I am not sure whether it is a reduction in heamoglobin/red blood cells, both of which are now below the normal range  you would expect in a healthy adult (none of the doctors seem particularly concerned by this, so I assume it is fairly standard). 

Show Most Thanked Posts
User
Posted 13 Apr 2025 at 00:38

When you become castrate resistant, it's a new mutation which has developed which is castrate resistant - the original cancer is still being controlled, which is why you stay on the basic hormone therapy.


Some trials have shown that if you're on Abiraterone, you don't need Decapepty or other injections as the Abiraterone also stops the testicles making hormone therapy. In the UK, you are unlikely to be able to get Abiraterone on the NHS unless you are on a regular hormone therapy too, as this wasn't known when the rules were drawn up.


However, it's unlikely to be the Decapeptyl which is directly causing the side effects, it's the loss of Testosterone. So switching to a different way of suppressing Testosterone is unlikely to make any difference.


Having said that, I don't really understand what causes the breathlessness symptom. Hormone therapy does lower your hemoglobin levels, but only from the male range down to the slightly lower female range, so I don't think it can be that alone.

User
Posted 13 Apr 2025 at 07:06

Thanks for your reply Andy62, it is really helpful.  Re the breathlessness we will be getting full blood tests in June because of the Abiraterone and will get some questions together to discuss with the consultant.  

User
Posted 13 Apr 2025 at 09:07

Hi - I definitely get out of breath more easily since starting hormone therapy. I am not sure whether it is a reduction in heamoglobin/red blood cells, both of which are now below the normal range  you would expect in a healthy adult (none of the doctors seem particularly concerned by this, so I assume it is fairly standard). 

 
Forum Jump  
©2025 Prostate Cancer UK