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My first post - what should my Dad add to ADT?

User
Posted 13 Aug 2024 at 12:12

Hi all

I’ve been reading the forum extensively for some time now and have found it really helpful. In December 2022, my Dad (now 71) started Prostap following diagnosis of de novo metastatic prostate cancer (lymph nodes and bones), PSA 160, Gleason 7 (4+3). No chemo due to an unrelated health condition. He reached a PSA nadir of 0.14 after a year. His PSA tests since then - over the last 6 months - have shown increases: 0.2 and then 0.4. His recent CT scan shows no obvious progression, we are awaiting a repeat bone scan. His T level remains around 0.3.

I attend my Dad’s oncology appointments with him. At his appointment last week, we were told that another hormone treatment will be added to the ADT soon. He’s been given three options for his next treatment and I’d really appreciate any thoughts as we’re unsure which to choose:

1. Bicalutamide (does this have any potential cross-resistance with enzalutamide or abiraterone - could it make these superior future treatment options less effective later? How common is it to have lasting success on enza or abi once bical becomes ineffective?)

2. Enzalutamide

3. Abiraterone (+ steroid)

I’d be so grateful for any input on this.  

Best wishes to all

Loz

Edited by member 13 Aug 2024 at 14:39  | Reason: Not specified

User
Posted 25 Aug 2024 at 12:03

Although Abiraterone and Enzalutamide work very differently, they seem to be broadly similarly effective. Abiraterone is off-patent now and in theory is much cheaper and possibly within reach of personal funding for some people. At least that's the theory - in practice, it still seems to be very difficult to buy it in the UK even with a private prescription at less than the branded Zytiga price. I know some patients have, but I don't know how. One patient I'm supporting is planning to buy it through a family member who lives abroad where it is more easily available at reasonable pricing. Enzalutamide on the other hand is still protected by patent and hence unaffordable for most people. (Its patent doesn't have much longer to go though.)

So if I were faced with this, I think I'd go with Enzalutamide. That might leave me with the option of trying self-funded Abiraterone after Enzalutamide stops working, which you can't do on the NHS.

But also ask your oncologist what pros and cons they can think of between the two.

Edited by member 25 Aug 2024 at 12:14  | Reason: Not specified

User
Posted 15 Aug 2024 at 12:22

You could ring one of PCUK's nurses or look on YouTube.  This is a good YouTube channel but you'll need to search to find the right video on it:  https://www.youtube.com/@ThePCRI

User
Posted 24 Aug 2024 at 12:15

Bicalutamide is an anti-androgen, blocking Testosterone from getting to Androgen Receptors.

Enzalutamide is an anti-androgen around 8 times more powerful than bicalutamide at blocking out Testosterone.
However, in the event that an androgen receptor is triggered by Testosterone (which will still happen occasionally), Enzalutamide also attempts to prevent two subsequent stages which are required for the cell to multiply, which Bicalutamide does not do.

Abiraterone switches off the small remaining Testosterone which comes from the adrenal glands. It is also an anti-androgen, but that's not its main method of working. It also switches off other essential steroids from the adrenal glands, which is why you need to take a low dose steroid to replace those.

Enzalutamide and Abiraterone can both work after Bicalutamide has failed. However, I think the current best practice is considered to be to start on Enzalutamide or Abiraterone ASAP, which is thought to give the longest protection. I have not seen any data on upfront Bicalutamide followed by Enza/Abi verses just upfront Enza/Abi.

If I was faced with this choice, I would skip the Bicalutamide.

User
Posted 13 Aug 2024 at 12:12

Hi all

I’ve been reading the forum extensively for some time now and have found it really helpful. In December 2022, my Dad (now 71) started Prostap following diagnosis of de novo metastatic prostate cancer (lymph nodes and bones), PSA 160, Gleason 7 (4+3). No chemo due to an unrelated health condition. He reached a PSA nadir of 0.14 after a year. His PSA tests since then - over the last 6 months - have shown increases: 0.2 and then 0.4. His recent CT scan shows no obvious progression, we are awaiting a repeat bone scan. His T level remains around 0.3.

I attend my Dad’s oncology appointments with him. At his appointment last week, we were told that another hormone treatment will be added to the ADT soon. He’s been given three options for his next treatment and I’d really appreciate any thoughts as we’re unsure which to choose:

1. Bicalutamide (does this have any potential cross-resistance with enzalutamide or abiraterone - could it make these superior future treatment options less effective later? How common is it to have lasting success on enza or abi once bical becomes ineffective?)

2. Enzalutamide

3. Abiraterone (+ steroid)

I’d be so grateful for any input on this.  

Best wishes to all

Loz

Edited by member 13 Aug 2024 at 14:39  | Reason: Not specified

User
Posted 14 Aug 2024 at 00:21

Sorry Loz I can't help, but I'm bumping your post up as others may know.

Dave

User
Posted 16 Aug 2024 at 14:07

Hi LOzz if its any help when I was put on Enzalutamide in Feb '21, I had a 30 day course of Bicalutamide also plus ongoing hormone injections, cheers

User
Posted 16 Aug 2024 at 14:47

Hi Dave, good to hear from you, I've been following your updates for a while now. You seem to be doing well on enzalutamide which is great. Thanks for your reply, Loz

User
Posted 12 Sep 2024 at 20:33

Hi there

Sorry but I seem to have a deal of trouble replying directly to your message. 

Yes, I am still on Bicalutimide (I have been on it since mid 2019).  I was put on it because my PSA was creeping up and it had the desired effect of returning it to virtually undetectable. The latter is still the case with me (12 years after diagnosis) and HT is the only treatment I have had. A recent full body scan shows absolutely no evidence of cancer in my bones (previously extensive) which was wonderful news.

I am not saying I recommend your Dad choses Bicalutimide as we are all different and his Onco seems to infer there is little to choose between them. However, it has worked very well for me and it is worth a try as some cancers are very hormone sensitive.

Wishing all goes well for you and yours and I hope that my experience gives you all some encouragement for the future.

 

Tony

Edited by member 13 Sep 2024 at 08:55  | Reason: Not specified

User
Posted 01 Oct 2024 at 23:16

Well 0.35 to 0.44 is the mathematically correct answer, but quite honestly you're unlikely to find the real answer in your dad's case. For some people the < (less than sign) is very important to know, but they often receive results by phone and the less than sign is not communicated.

It is quite possible the results come out the machine at two decimal places and the operator just writes one digit down, what you get told will depend on their mathematical literacy.

I should also note that a friend of mine on active surveillance has PSAs anywhere in the range 5 to 17, so maybe there is no point in knowing your dad's PSA to two decimal places on a particular day.

The good news is in your first post it was 160 now it is about 0.4. Don't worry about it.

 

Dave

User
Posted 03 Oct 2024 at 18:19
I believe there is a margin of error in PSA readings so the difference between 0.3 and 0.4 is no real gamechanger.
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User
Posted 14 Aug 2024 at 00:21

Sorry Loz I can't help, but I'm bumping your post up as others may know.

Dave

User
Posted 15 Aug 2024 at 12:22

You could ring one of PCUK's nurses or look on YouTube.  This is a good YouTube channel but you'll need to search to find the right video on it:  https://www.youtube.com/@ThePCRI

User
Posted 15 Aug 2024 at 18:37

Thanks Peter, I'll have a look at this channel. 

Thanks for the bump up Dave.

User
Posted 16 Aug 2024 at 14:07

Hi LOzz if its any help when I was put on Enzalutamide in Feb '21, I had a 30 day course of Bicalutamide also plus ongoing hormone injections, cheers

User
Posted 16 Aug 2024 at 14:47

Hi Dave, good to hear from you, I've been following your updates for a while now. You seem to be doing well on enzalutamide which is great. Thanks for your reply, Loz

User
Posted 24 Aug 2024 at 12:15

Bicalutamide is an anti-androgen, blocking Testosterone from getting to Androgen Receptors.

Enzalutamide is an anti-androgen around 8 times more powerful than bicalutamide at blocking out Testosterone.
However, in the event that an androgen receptor is triggered by Testosterone (which will still happen occasionally), Enzalutamide also attempts to prevent two subsequent stages which are required for the cell to multiply, which Bicalutamide does not do.

Abiraterone switches off the small remaining Testosterone which comes from the adrenal glands. It is also an anti-androgen, but that's not its main method of working. It also switches off other essential steroids from the adrenal glands, which is why you need to take a low dose steroid to replace those.

Enzalutamide and Abiraterone can both work after Bicalutamide has failed. However, I think the current best practice is considered to be to start on Enzalutamide or Abiraterone ASAP, which is thought to give the longest protection. I have not seen any data on upfront Bicalutamide followed by Enza/Abi verses just upfront Enza/Abi.

If I was faced with this choice, I would skip the Bicalutamide.

User
Posted 24 Aug 2024 at 18:43

Andy, thanks so much for your help with this, I really appreciate you taking the time to reply. It makes sense to me what you say about going straight to abi/enza. I know my Dad has been thinking a lot about it and if we can narrow it down to two options that certainly helps. 

I wonder if anyone has any thoughts they can share on abiraterone vs enzalutamide? 

Thanks again Andy 

Best wishes to all 

Loz

User
Posted 25 Aug 2024 at 12:03

Although Abiraterone and Enzalutamide work very differently, they seem to be broadly similarly effective. Abiraterone is off-patent now and in theory is much cheaper and possibly within reach of personal funding for some people. At least that's the theory - in practice, it still seems to be very difficult to buy it in the UK even with a private prescription at less than the branded Zytiga price. I know some patients have, but I don't know how. One patient I'm supporting is planning to buy it through a family member who lives abroad where it is more easily available at reasonable pricing. Enzalutamide on the other hand is still protected by patent and hence unaffordable for most people. (Its patent doesn't have much longer to go though.)

So if I were faced with this, I think I'd go with Enzalutamide. That might leave me with the option of trying self-funded Abiraterone after Enzalutamide stops working, which you can't do on the NHS.

But also ask your oncologist what pros and cons they can think of between the two.

Edited by member 25 Aug 2024 at 12:14  | Reason: Not specified

User
Posted 26 Aug 2024 at 09:22

Thank you very much Andy. 

You're an asset to the community. 

Warm wishes 

Loz

User
Posted 09 Sep 2024 at 13:55

Hello again all 

It's getting closer to the time when my Dad will need to choose between abiraterone and enzalutamide to add to Prostap as his PSA has been rising. Please does anyone have any experience of either/both of these medications that they could possibly share? I'm trying as best I can to help my Dad make a decision, the doctor doesn't seem to favour one or the other. 

I read something before about low dose abiraterone with a light meal instead of full dose on an empty stomach - has anyone heard of this approach or know if it's being used in the UK at all? 

Good wishes to all 

Loz

User
Posted 09 Sep 2024 at 18:44

Andy,Can you drink alcohol when taking Enzalutamide?

User
Posted 12 Sep 2024 at 20:33

Hi there

Sorry but I seem to have a deal of trouble replying directly to your message. 

Yes, I am still on Bicalutimide (I have been on it since mid 2019).  I was put on it because my PSA was creeping up and it had the desired effect of returning it to virtually undetectable. The latter is still the case with me (12 years after diagnosis) and HT is the only treatment I have had. A recent full body scan shows absolutely no evidence of cancer in my bones (previously extensive) which was wonderful news.

I am not saying I recommend your Dad choses Bicalutimide as we are all different and his Onco seems to infer there is little to choose between them. However, it has worked very well for me and it is worth a try as some cancers are very hormone sensitive.

Wishing all goes well for you and yours and I hope that my experience gives you all some encouragement for the future.

 

Tony

Edited by member 13 Sep 2024 at 08:55  | Reason: Not specified

User
Posted 12 Sep 2024 at 20:58

Hi Tony 

Many thanks for your uplifting reply, it's great to hear how well you're doing on HT and the excellent result from your recent bone scan. I really appreciate your encouragement. 

Thanks again and very best of wishes 

Loz

User
Posted 01 Oct 2024 at 22:39

Dad's latest PSA is 0.33 down from 0.4. Sometimes he is given the result to one decimal place and sometimes to two depending on whether it's hospital or GP. Does anyone know whether a reading of 0.4 could actually be anything from 0.35 to 0.44 or would it really be 0.4 with the next decimal place just missed off? I'm just trying to understand how the readings work. 

Many thanks 

Loz

User
Posted 01 Oct 2024 at 23:16

Well 0.35 to 0.44 is the mathematically correct answer, but quite honestly you're unlikely to find the real answer in your dad's case. For some people the < (less than sign) is very important to know, but they often receive results by phone and the less than sign is not communicated.

It is quite possible the results come out the machine at two decimal places and the operator just writes one digit down, what you get told will depend on their mathematical literacy.

I should also note that a friend of mine on active surveillance has PSAs anywhere in the range 5 to 17, so maybe there is no point in knowing your dad's PSA to two decimal places on a particular day.

The good news is in your first post it was 160 now it is about 0.4. Don't worry about it.

 

Dave

User
Posted 02 Oct 2024 at 09:43

Thank you Dave for your helpful reply, I really appreciate it. 

User
Posted 03 Oct 2024 at 18:19
I believe there is a margin of error in PSA readings so the difference between 0.3 and 0.4 is no real gamechanger.
User
Posted 03 Oct 2024 at 21:22

Thank you Tony. We've been to Dad's appointment today and the oncologist seemed pleased with his latest PSA, also with his recent scans. It's great to hear from you again. 

 
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