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Take or refuse docetaxel?

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User
Posted 25 Dec 2022 at 06:42

My OH was diagnosed in January 2022 with advanced aggressive metastatic prostate cancer, multiple mets in lymph nodes, 4 of 1-2 cms in pelvic bones, query more in shoulder and lung with the only symptom he'd ever had being urine retention (treated ever since via a catheter and bag).

He was started on enzalutamide in June and his PSA dropped to 0.1 by August, but has slowly gone up each of the last 3 months (1.0, 2.2, 4.2) and his oncologist thinks it is failing - he has already had new CT scans, and bone scan is scheduled but delayed due to Christmas and an extra "present" of covid.

Onco wants to drop enza and start him on Docetaxel in the new year - we have loads of questions but doctors all seem to just follow the flowchart and don't really look at it from patient's perspective - just the NICE guidelines.

From what we've read, docetaxel seems to give an extra 2.5 months OS on average, but at a cost of compromised quality of life through 4.5 months of treatment.

Is it such a bad option to just say no, or at least not yet,  as he still has no symptoms (other than relying on the catheter), a great quality of life and is already mid-70's? 

He isn't a quitter but seems to have more to lose in the short-term than gain so what are we missing?

I've read that around 50% of men dropping enza get an AAWR (anti-androgen withdrawal response?) that gives them an extra breathing space of some months (and up to 2 years) without further progression starting around 40 days after enza has been dropped.  It leads to a peak in PSA in the first few weeks after stopping enza, but then  a sudden fall that is maintained until progression restarts and is easily monitored through regular PSA tests. 

I've shown the Macmillan nurse evidence from peer-reviewed papers used to drive different timing of follow-on treatments in the USA on that basis, but she says that the doctors here have to adhere to the NICE guidelines that don't leave an 8-week gap to test that response out. 

Does anyone here have experience of an AAWR (also called AAWS in some places)?  

If docetaxel does end up being the best next step, is delaying until spring when there are fewer bugs around, so less risk of infection, a big mistake?

 

 

 

 

 

User
Posted 25 Dec 2022 at 15:44

I was treated at a much earlier stage, and  currently can assume I am "cured" so I hopefully will never be in the position of your OH.

There is no doubt, UK doctors just follow NICE guidelines, and on average this will be the best policy. For individual patients, what is best may be different to what is best for the average person.

You may want to read ChrisJ's profile to see that you can choose a different path.

https://community.prostatecanceruk.org/default.aspx?g=profile&u=18293

Quality of life vs. quantity of life is something we will all eventually face. Medics have a slight bias towards quantity as it is easier to measure than quality. I think you should make your opinions known to the oncologist about postponing docatexal until you have seen how his PSA reacts post enzalutamide.

You need to keep the oncologist on board, because at some point you will need the docatexal, so you have to make clear, that you know you are taking a chance and you accept the consequences of taking an unproven path may be a shorter life and possibly a reduced quality of life.

I can't really see why the oncologist would strongly object, your suggestions are not too far from NICE guidelines.

 

 

Dave

User
Posted 26 Dec 2022 at 01:26

I think there are pros and cons here. Docetaxel may be quoted as offering an average life extension of 2.5 months but that statistic is probably based on the previous pathway of doce being offered only at end-of-life stage - in recent years, it has been offered much earlier in the treatment plan and offers an average of 15 extra months while men who manage the full 10 cycles may have an average of 30 months extra. This is partly because having had docetaxel opens doors to other novel treatments.

However, I wonder if the onco is jumping the gun a bit. Has your OH's testosterone been measured and, if so, is he below castrate level? If he is below 0.7 and his cancer is active, he is castrate resistant - the HT and enza isn't working so there is no point continuing with the enza. If his testosterone is 0.7 or above, the HT and enza are not effectively switching off the testosterone production so switching to another HT might be worth a try. 

An AAWR is less common when stopping enzalutimide than with bicalutimide so I don't think that is a next step to rely on. He can start the docetaxel and then stop if he finds the side effects intolerable although many men find it not too bad. 

Doctors are obliged to follow NICE guidance except where the patient is in a trial. Patients are not obliged to agree to the treatment plan so we do have (or have had) men on here who said to their oncologist "I hear what you are saying but can we try this instead?" One recent example was Si_Ness who persuaded his onco to try testosterone flooding, although it was not successful. 

Edited by member 26 Dec 2022 at 01:43  | Reason: Not specified

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

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User
Posted 25 Dec 2022 at 15:44

I was treated at a much earlier stage, and  currently can assume I am "cured" so I hopefully will never be in the position of your OH.

There is no doubt, UK doctors just follow NICE guidelines, and on average this will be the best policy. For individual patients, what is best may be different to what is best for the average person.

You may want to read ChrisJ's profile to see that you can choose a different path.

https://community.prostatecanceruk.org/default.aspx?g=profile&u=18293

Quality of life vs. quantity of life is something we will all eventually face. Medics have a slight bias towards quantity as it is easier to measure than quality. I think you should make your opinions known to the oncologist about postponing docatexal until you have seen how his PSA reacts post enzalutamide.

You need to keep the oncologist on board, because at some point you will need the docatexal, so you have to make clear, that you know you are taking a chance and you accept the consequences of taking an unproven path may be a shorter life and possibly a reduced quality of life.

I can't really see why the oncologist would strongly object, your suggestions are not too far from NICE guidelines.

 

 

Dave

User
Posted 25 Dec 2022 at 17:23
Dave,

You have just reinvented Christmas! Thank-you for a swift response and the cross-reference!

My husband maintains his mental health by delegating all research and decisions to me, as he finds the alternative unbearable. Easier for me to be objective, and I gather all the evidence to support the options which i then walk through with him - we've been married for 42 years so I know him well enough to second guess his preferences and present alternatives in a less scary way.

The one and only time we saw the onco team (rather than monthly phone calls with a junior in the team) I went armed with a 2-inch wodge of peer-reviewed papers, none of which were needed, but I've been unable to find much that actually talks to what it is like to live the treatment, rather than understand its biochemistry and stats.

By the way, our Macmillan nurse is amazing - always prepared to listen and explain what the onco will say and why, to help us fight our corner if things need discussion.

I shall update once we have the scans and next steps agreed.

User
Posted 26 Dec 2022 at 01:26

I think there are pros and cons here. Docetaxel may be quoted as offering an average life extension of 2.5 months but that statistic is probably based on the previous pathway of doce being offered only at end-of-life stage - in recent years, it has been offered much earlier in the treatment plan and offers an average of 15 extra months while men who manage the full 10 cycles may have an average of 30 months extra. This is partly because having had docetaxel opens doors to other novel treatments.

However, I wonder if the onco is jumping the gun a bit. Has your OH's testosterone been measured and, if so, is he below castrate level? If he is below 0.7 and his cancer is active, he is castrate resistant - the HT and enza isn't working so there is no point continuing with the enza. If his testosterone is 0.7 or above, the HT and enza are not effectively switching off the testosterone production so switching to another HT might be worth a try. 

An AAWR is less common when stopping enzalutimide than with bicalutimide so I don't think that is a next step to rely on. He can start the docetaxel and then stop if he finds the side effects intolerable although many men find it not too bad. 

Doctors are obliged to follow NICE guidance except where the patient is in a trial. Patients are not obliged to agree to the treatment plan so we do have (or have had) men on here who said to their oncologist "I hear what you are saying but can we try this instead?" One recent example was Si_Ness who persuaded his onco to try testosterone flooding, although it was not successful. 

Edited by member 26 Dec 2022 at 01:43  | Reason: Not specified

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

User
Posted 26 Dec 2022 at 11:19
Thanks - all of this is new news to me - I need to improve my research techniques but knowing where to start is difficult.

His testosterone has never been measured to my knowledge, so I will definitely ask about that on our call next week, and your stats do put the docetaxel in a new light.

 
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