Like Derek, I don't have any answers for you, but I think I know the questions I would be asking.
The first thing to say is that the pre pandemic protocol would have been start you on the minimal medication, and then progressively add more aggressive medication as each one fails, until there is no more medication to add. And then manage death as painlessly as possible.
During the pandemic, doctors had to prescribe medication differently as they sometimes could not monitor the patient closely. As a result, chemo and enza etc. were being used earlier on some patients than would normally be the case. It seems that this led to a protocol of upfront enzalutamide and/or upfront chemo. Rather than waiting for the previous drug to become ineffective.
The pre pandemic protocol was based on the knowledge that all drugs will become ineffective eventually so the longer you can wait before starting them, the longer it will be before they are ineffective, and hence the longer overall life expectancy will be.
The post pandemic protocol (upfront protocol) is based on hit the cancer as hard as possible in one go and it will take ages to recover, and hence the longer overall life expectancy will be.
One has to assume that one of these protocols is superior to the other, but I don't know the answer, I'm not sure if anyone does.
The upfront protocol will presumably mean more side effects earlier, so if it does extend life, it may have to be balanced with a reduced quality of life.
There seems to be some strange rules about funding for drugs and starting and stopping them. These rules were devised during the pre pandemic protocol. They may mean if you follow an upfront protocol you will suddenly be left without medicine due to bureaucracy rather than clinical need.
I would be asking what is your life expectancy under each of the four bulleted options you listed? I would be asking how severe side effects may be and if you stop a medication can you restart it?
I suspect the medics will not give you any answers on life expectancy because it various so much between people that it is impossible to give an accurate number. But without knowing life expectancy for each protocol it is impossible to make an informed decision.
Hopefully someone else with more experience of the medications will reply with more specific questions than my general ones.
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User
Originally Posted by: Online Community MemberThere seems to be some strange rules about funding for drugs and starting and stopping them. These rules were devised during the pre pandemic protocol. They may mean if you follow an upfront protocol you will suddenly be left without medicine due to bureaucracy rather than clinical need.
I don't think the main reason was bureaucracy - the very detailed research showed that if abiraterone failed, enzalutimide would also fail (and vice versa) so there was no point following one with the other. See trial data for Stampede but also ATLANTA, RE-AKT, etc. NICE panel report in 2021 says that apalutimide will also fail if abi or enza has already failed, because they work more or less the same way. Darolutimide can be prescribed to men who have failed with enza or apalutimide.
The rules are slightly different if you start enza as an upfront treatment on a time limited plan - you may be able to have it again in the future as long as you didn't have a recurrence while you were on it
With the choices you have been offered, it would be worth reading up on the Paradigm trial as well.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Thanks Lyn. These rules were introduced when the drugs were expensive, they are now "cheap as chips" (well not quite). Also the rules were introduced before they were being used as time limited upfront treatments.
The NICE guidance hopefully now reflects modern best practice. I would want to be sure that no jobs-worth is going to refuse further enzalutamide based on a misunderstanding of old rules.
Twice in my own treatment I have seen rules being mis-followed due to a lack of understanding as to what the rule was trying to achieve. In neither case would any harm have came to me, but anyone reading my case notes for research purposes would have been mislead. Quite a few times I have posted on here that in the modern NHS the patient has to manage his treatment plan because the medics probably won't.
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User
Hi
Sorry to hear you've joined the club!
Unfortunately, nobody will be able to give you an accurate answer as everyone reacts differently to each of the treatments..
When I was first diagnosed I spoke regularly to a chap that followed the usual standard of care - prostap every three months, chemotherapy and then radiotherapy. This seemed to work for him and he's now at undetectable levels hoping for a long break before reoccurrence.
For myself, I have a physical job, which l enjoy and was very nervous of being damaged by chemo and radiotherapy. I was also told hormone therapy would be for life, so rather than coping with the side effects of prostap 3 I opted for an orchidectomy. I've avoided chemo and radio and have been on apalutamide for almost two years. PSA is still undetectable and I'm still active and working. (Although suffering tiredness and hot flashes from the pills).
You could say both of these treatments produced the same result. However, I didn't have to go through chemo and radiotherapy. There's also no way of telling how badly you may be affected by these standard treatments - I might have been fine, or I could have been left incontinent, with tingling extremities and damaged lungs and liver! Conversely, there was no guarantee that the apalutamide would work. Some only last 6 months before it fails in some way. Despite being relatively active, I am often tired, have hot flashes every hour day and night and have zero libedo.
You need to consider what is important to you, hitting the cancer hard and coping with the possibility of side effects issues. Alternatively, do do you favour quality of life, like I have, but have to live with the knowledge that it will eventually fail and you may have to face chemo etc in the future.
Good luck, remember it's your choice don't be forced down a standard of care until the consultant has really discussed options that suit you.
User
Hi all,
Would appreciate any thoughts/experience please around the following situation we find ourselves in.
PSA over 600 at diagnosis in Dec 2023. Advanced & metastatic disease (pelvic lymph nodes and bone). Commenced degarelix.
Saw Oncologist today and options are:
-Continue degarelix or change to LHRH type
-Add in chemo
-Add in enzalutamide
-Add in both chemo & darolutamide
We have 4 weeks to decide on the above to be within 12 week time frame.
Radiotherapy would be considered depending on decision re. treatment above.
Also thoughts on zoledronic acid? Increases risk of bone fracture? Has anybody used an alternative medication?
Although a very personal decision, any thoughts/questions to be asking ourselves and healthcare professionals, would be appreciated.
Many thanks.
Edited by member 12 Feb 2024 at 23:21
| Reason: Not specified
User
Hi Carls,
I’m sorry you find yourself in the club that nobody wants to join, but welcome anyway.
I cant offer any advice on this but I’m bumping you up because there are many on here who can.
All the best with your treatment.
Derek
User
Hi Carls,
sorry to hear about your diagnosis. As others have stated above, do question your consultant closely about the expected outcomes of the various options, and what type of chemo you would have (I would think probably docetaxel).
My own diagnosis was advanced metastatic disease with mets in my spine, ribs, pelvis etc but not in my lymph nodes. My consultant recommended the 'hit hard & early' route so I had 6 rounds of docetaxel chemo, followed by 18 sessions of radiotherapy. This together with lifelong hormone therapy (Zoladex, with enzalutamide added after 2 years) has worked very effectively. I'm now 5 years on since diagnosis (now aged 59) and apart from one niggling met which I'm having zapped with targeted RT, am in good health with a very good QoL.
Chemo with docetaxel is not pleasant by any means, but it is manageable. If your consultant thinks it would be effective in your case, I would definitely do it. There are some useful tips and tricks that make it more tolerable.
Good luck with your decision and treatment.
Craig
User
Hi Carls,
I was diagnosed last June at 47, with Gleason 4+3, PSA of 63, spread to supraclavicular fossa, abdominal & pelvic.
Straight away I was put on Darolutamide, my PSA dropped to 3.3 and currently is 0.09
Since then I have done 6 rounds of Docetaxel every 3 weeks, just ended on Jan 26th
I can only express my own experience, it's not pleasant, just felling drained but never sick only the first week, after that I would go back to my normal me.
Had a consultation with my doctor yesterday, will continuo with Darolutamide and a CT scan at the end of Feb, no mention of RT unfortunately
I don't really know what to expect from now on.
But again, as said before, if your consultant thinks it would be effective in your case, do it.
All the best !
L
User
Ah, sorry Jan, I don't take private messages. I think it is much safer if questions are posted publicly so that, if the reply is mistaken or misleading, there are lots of other members to spot the error & put it right - or just to give alternative views.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
With a PSA at diagnosis or 248 and local spread to the Iliac chain I made the very unusual choice (at least here in the US and apparently in the UK as well) of having a bilateral orchiectomy. It made more sense to me than making monthly trips to the hospital for infusions for, perhaps, years. It was a simple surgery done on an outpatient basis and I only took 1 1/2 days off work.
The PSA reached a nadir or 0.43 approximately one year after surgery and is now in the 4-5 range. The surgery was three years ago yesterday and I could not be more pleased with the outcome to date. I fully expect to be put on abiraterone later this year but that is manageable. In all likelihood I will not pursue treatment beyond that.
User
There is no libido but that was to be expected. And, really, since testosterone starts dropping as we age I'm not sure how big of a difference the orchiectomy made there. I have perhaps lost a bit of strength but, again, that happens with aging. These two things are a small price to pay for still being alive and otherwise healthy.
Frankly I am puzzled as to why orchiectomy has been largely abandoned by the medical community. Perhaps it is that other treatments produce much higher profits for hospitals and pharmaceutical companies. That may be a factor in the US but does not seem so likely where national health care is the standard.
John
Edited by member 04 Mar 2024 at 01:09
| Reason: Not specified
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User
Hi Carls,
I’m sorry you find yourself in the club that nobody wants to join, but welcome anyway.
I cant offer any advice on this but I’m bumping you up because there are many on here who can.
All the best with your treatment.
Derek
User
Like Derek, I don't have any answers for you, but I think I know the questions I would be asking.
The first thing to say is that the pre pandemic protocol would have been start you on the minimal medication, and then progressively add more aggressive medication as each one fails, until there is no more medication to add. And then manage death as painlessly as possible.
During the pandemic, doctors had to prescribe medication differently as they sometimes could not monitor the patient closely. As a result, chemo and enza etc. were being used earlier on some patients than would normally be the case. It seems that this led to a protocol of upfront enzalutamide and/or upfront chemo. Rather than waiting for the previous drug to become ineffective.
The pre pandemic protocol was based on the knowledge that all drugs will become ineffective eventually so the longer you can wait before starting them, the longer it will be before they are ineffective, and hence the longer overall life expectancy will be.
The post pandemic protocol (upfront protocol) is based on hit the cancer as hard as possible in one go and it will take ages to recover, and hence the longer overall life expectancy will be.
One has to assume that one of these protocols is superior to the other, but I don't know the answer, I'm not sure if anyone does.
The upfront protocol will presumably mean more side effects earlier, so if it does extend life, it may have to be balanced with a reduced quality of life.
There seems to be some strange rules about funding for drugs and starting and stopping them. These rules were devised during the pre pandemic protocol. They may mean if you follow an upfront protocol you will suddenly be left without medicine due to bureaucracy rather than clinical need.
I would be asking what is your life expectancy under each of the four bulleted options you listed? I would be asking how severe side effects may be and if you stop a medication can you restart it?
I suspect the medics will not give you any answers on life expectancy because it various so much between people that it is impossible to give an accurate number. But without knowing life expectancy for each protocol it is impossible to make an informed decision.
Hopefully someone else with more experience of the medications will reply with more specific questions than my general ones.
|
User
Originally Posted by: Online Community MemberThere seems to be some strange rules about funding for drugs and starting and stopping them. These rules were devised during the pre pandemic protocol. They may mean if you follow an upfront protocol you will suddenly be left without medicine due to bureaucracy rather than clinical need.
I don't think the main reason was bureaucracy - the very detailed research showed that if abiraterone failed, enzalutimide would also fail (and vice versa) so there was no point following one with the other. See trial data for Stampede but also ATLANTA, RE-AKT, etc. NICE panel report in 2021 says that apalutimide will also fail if abi or enza has already failed, because they work more or less the same way. Darolutimide can be prescribed to men who have failed with enza or apalutimide.
The rules are slightly different if you start enza as an upfront treatment on a time limited plan - you may be able to have it again in the future as long as you didn't have a recurrence while you were on it
With the choices you have been offered, it would be worth reading up on the Paradigm trial as well.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thanks Lyn. These rules were introduced when the drugs were expensive, they are now "cheap as chips" (well not quite). Also the rules were introduced before they were being used as time limited upfront treatments.
The NICE guidance hopefully now reflects modern best practice. I would want to be sure that no jobs-worth is going to refuse further enzalutamide based on a misunderstanding of old rules.
Twice in my own treatment I have seen rules being mis-followed due to a lack of understanding as to what the rule was trying to achieve. In neither case would any harm have came to me, but anyone reading my case notes for research purposes would have been mislead. Quite a few times I have posted on here that in the modern NHS the patient has to manage his treatment plan because the medics probably won't.
|
User
Hi Carls,
sorry to hear about your diagnosis. As others have stated above, do question your consultant closely about the expected outcomes of the various options, and what type of chemo you would have (I would think probably docetaxel).
My own diagnosis was advanced metastatic disease with mets in my spine, ribs, pelvis etc but not in my lymph nodes. My consultant recommended the 'hit hard & early' route so I had 6 rounds of docetaxel chemo, followed by 18 sessions of radiotherapy. This together with lifelong hormone therapy (Zoladex, with enzalutamide added after 2 years) has worked very effectively. I'm now 5 years on since diagnosis (now aged 59) and apart from one niggling met which I'm having zapped with targeted RT, am in good health with a very good QoL.
Chemo with docetaxel is not pleasant by any means, but it is manageable. If your consultant thinks it would be effective in your case, I would definitely do it. There are some useful tips and tricks that make it more tolerable.
Good luck with your decision and treatment.
Craig
User
Hi Carls,
I was diagnosed last June at 47, with Gleason 4+3, PSA of 63, spread to supraclavicular fossa, abdominal & pelvic.
Straight away I was put on Darolutamide, my PSA dropped to 3.3 and currently is 0.09
Since then I have done 6 rounds of Docetaxel every 3 weeks, just ended on Jan 26th
I can only express my own experience, it's not pleasant, just felling drained but never sick only the first week, after that I would go back to my normal me.
Had a consultation with my doctor yesterday, will continuo with Darolutamide and a CT scan at the end of Feb, no mention of RT unfortunately
I don't really know what to expect from now on.
But again, as said before, if your consultant thinks it would be effective in your case, do it.
All the best !
L
User
Hi
Sorry to hear you've joined the club!
Unfortunately, nobody will be able to give you an accurate answer as everyone reacts differently to each of the treatments..
When I was first diagnosed I spoke regularly to a chap that followed the usual standard of care - prostap every three months, chemotherapy and then radiotherapy. This seemed to work for him and he's now at undetectable levels hoping for a long break before reoccurrence.
For myself, I have a physical job, which l enjoy and was very nervous of being damaged by chemo and radiotherapy. I was also told hormone therapy would be for life, so rather than coping with the side effects of prostap 3 I opted for an orchidectomy. I've avoided chemo and radio and have been on apalutamide for almost two years. PSA is still undetectable and I'm still active and working. (Although suffering tiredness and hot flashes from the pills).
You could say both of these treatments produced the same result. However, I didn't have to go through chemo and radiotherapy. There's also no way of telling how badly you may be affected by these standard treatments - I might have been fine, or I could have been left incontinent, with tingling extremities and damaged lungs and liver! Conversely, there was no guarantee that the apalutamide would work. Some only last 6 months before it fails in some way. Despite being relatively active, I am often tired, have hot flashes every hour day and night and have zero libedo.
You need to consider what is important to you, hitting the cancer hard and coping with the possibility of side effects issues. Alternatively, do do you favour quality of life, like I have, but have to live with the knowledge that it will eventually fail and you may have to face chemo etc in the future.
Good luck, remember it's your choice don't be forced down a standard of care until the consultant has really discussed options that suit you.
User
Originally Posted by: Online Community MemberHi all,
Would appreciate any thoughts/experience please around the following situation we find ourselves in.
PSA over 600 at diagnosis in Dec 2023. Advanced & metastatic disease (pelvic lymph nodes and bone). Commenced degarelix.
Saw Oncologist today and options are:
-Continue degarelix or change to LHRH type
-Add in chemo
-Add in enzalutamide
-Add in both chemo & darolutamide
We have 4 weeks to decide on the above to be within 12 week time frame.
Radiotherapy would be considered depending on decision re. treatment above.
Also thoughts on zoledronic acid? Increases risk of bone fracture? Has anybody used an alternative medication?
Although a very personal decision, any thoughts/questions to be asking ourselves and healthcare professionals, would be appreciated.
Many thanks.
Hi Carl's,
Sorry you find yourself in this situation.
Very similar to my own diagnosis back in November 2021.
The Degarelix saved my life at that point, but dropping my PSA from 215 to 0.2 within the space of the 3 month period.
I then went onto Enzalutamide which has kept my PSA at 0.2 for 25 months currently and a fairly normal QOL, except for the usual side effects.
We've still got RT and Chemo in the back pocket for when neccessary and then there is the possibility of inserting Olaparib into the treatment plan as well (subject to genes)
I'm just trying to stay in the game for as long as possible in the hope that more new treatments become available.
Stay positive mate.
User
Others in this forum know much more than me, but having now trawled through the data quite extensively, the general consensus now seems to be that especially for those with high volume, aggressive disease (as your initial PSA of 600 indicates is likely true in your case), treatment intensification at the beginning is generally the preferred approach if the patient can handle it.
If I were making the decision, I'd strongly prefer the Darolutamide + chemotherapy option (triplet therapy). Trials seem to suggest chemo is most effective for metastatic PCa when done soon after diagnosis, and the recent ARASENS trial (link below) had some quite promising results for triplet therapy.
https://www.nejm.org/doi/full/10.1056/NEJMoa2119115
Here's an article which discusses doublet vs triplet therapy (including whether to have chemo or not) - they at one point suggest that patients who are fitter/younger are a good fit for triplet therapy given the intensity of the treatment. But also worth noting that many men will ultimately have chemo anyway, and as others have said, it's generally quite well tolerated, and it's certainly better tolerated when people are relatively healthy before their disease has progressed.
https://www.cancernetwork.com/view/selecting-between-doublet-and-triplet-therapy-in-mcspc
That said, everyone has their own priorities. Chemo + Darolutamide is probably the better option from a prognosis perspective - but some people value quality of life over that. Though, as I say, I do suspect the quality of life reduction from 6 rounds of Docetaxel is a lot smaller than some imagine it would be.
Edited by member 19 Feb 2024 at 17:03
| Reason: Not specified
User
Hi Paul,
Thank you for your reply.
May I ask whether you had bone metastases?
User
User
Hi Lynn, have sent you a private message but your box is full
User
Ah, sorry Jan, I don't take private messages. I think it is much safer if questions are posted publicly so that, if the reply is mistaken or misleading, there are lots of other members to spot the error & put it right - or just to give alternative views.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
My husband (58) has just been told he has advanced metastatic disease and has been started on hormone therapy for life.
How bad have you found the side effects as we are really worried about this long term.
Appreciate any advice.
User
Good Morning Guing1965
I can tell you about my experience with Hormone Therapy and my side effects, I'm 47 and been taking it since July 2023, I can let you know that after two weeks of staring the therapy I saw some changes.
The good thing is that my PSA dropped rapidly from 63 to 3.7 and now is around 0.13
Again this is my experience
side effects
- No of Libido (non whatsoever)
- as I don't produce much Testosterone I also saw a change on my body hair (stopped growing) and weight (gain), and mood swings (hormones) nothing major.
Hope this helps in any way
All the best!
L
User
With a PSA at diagnosis or 248 and local spread to the Iliac chain I made the very unusual choice (at least here in the US and apparently in the UK as well) of having a bilateral orchiectomy. It made more sense to me than making monthly trips to the hospital for infusions for, perhaps, years. It was a simple surgery done on an outpatient basis and I only took 1 1/2 days off work.
The PSA reached a nadir or 0.43 approximately one year after surgery and is now in the 4-5 range. The surgery was three years ago yesterday and I could not be more pleased with the outcome to date. I fully expect to be put on abiraterone later this year but that is manageable. In all likelihood I will not pursue treatment beyond that.
User
Hi Another Cyclist,
Im interested….you said in your bio youve had no real side effects, is this still the case?
I am very pleased you are happy with your choice.
Good Luck for the future,
Derek
User
There is no libido but that was to be expected. And, really, since testosterone starts dropping as we age I'm not sure how big of a difference the orchiectomy made there. I have perhaps lost a bit of strength but, again, that happens with aging. These two things are a small price to pay for still being alive and otherwise healthy.
Frankly I am puzzled as to why orchiectomy has been largely abandoned by the medical community. Perhaps it is that other treatments produce much higher profits for hospitals and pharmaceutical companies. That may be a factor in the US but does not seem so likely where national health care is the standard.
John
Edited by member 04 Mar 2024 at 01:09
| Reason: Not specified
User
Hi John,
if you’ve followed my journey you will see that I’ve had some quite severe side-effects from Prostap, by far the worst being joint pain. If I was ever in a position where I was put on this for life I would seriously consider an orchidectomy.
Derek
User
Hi all,
Thanks for all the info.
Opted for enzalutamide & started this 2 days ago. Keeping chemo in back pocket to maybe try later.
The question now is zoledronic acid or alendronic acid? Any thoughts please?