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A new world for us all advice please

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User
Posted 14 May 2024 at 12:36

My dad 63 is a very fit and healthy man with no pre medical conditions. He was even training for a marathon when a running injury caused him to go for an MRI. The MRI sadly showed bony mets on his pelvis and an enlarged prostate.

He has since had ct scans and bone scans which confirm bony mets in pelvis area only. PSA 181 and gleason score 8 (4+4). He started immediately on bicalumtamide for one month and three monthly decapeptyl. He has had one injection of this with the next due next week. His PSA has dropped to 6.9. He has no symptoms of the disease itself and has hot flushes fr injection and a little weight gain.

At first oncology appointment today he has been given two options to consider. "Belt and braces" chemo every three weeks for six cycles (which I assume is doxetacyl) or enzalutamide. Is there any advice on what he should do

User
Posted 15 May 2024 at 19:18

Hi

This is such a hard decision, as everyone reacts to the drugs differently, with regard to effectiveness and side effects.

Research might indicate a blunderbuss approach - chemo, radiotherapy and hormone therapy. This might do the job, or unfortunately not! You also have to consider the effects on life during all these horrendous treatments.  You can probably forget a normal life for 6 months to a year.

Personally, I just couldn't face the prospect of chemo and radiotherapy yet. I wanted to prioritise quality of life. Consequently, I want for orchidectomy and apalutamide. Two years in and it's still working, I'm still active on the row erg and still working (although I do suffer the usual hot flushes, tiredness and zero libedo). I've been lucky, many aren't ith Enzo or apalutamide failing after 6 to 18 months. You just have to consider what you're willing to go through with your treatment and when.

You're doing the right thing, researching here and elsewhere. Consider what you've prepared to go through and quality of life. You don't have to just accept the basic standard of care, if it doesn't suit your situation.

User
Posted 15 May 2024 at 07:41
Ok so hopefully your dad's medical team know what they are doing and have sufficient resources to offer the latest best treatment options. In that case it will come down to picking the best options for him and his lifestyle.

BUT it would be wise to ask a few questions just to make sure:

Why can't he have radiotherapy to the primary tumour and possibly the Mets in his pelvis. There is lots of research that shows treating the primary tumour helps in prostate cancer, even when it has already spread.

Why can't he have chemo AND Enzo?

If he is limited to the two options proposed ask which has the best evidence for success?

User
Posted 15 May 2024 at 08:38

Hi 

I was 53 when diagnosed in 2022, PSA 2100 I was offered enza or chemo,I asked for advice of my oncologist she advised me to go outside and talk it over with my wife!! I great help.

I chose enza and was on it for 18months,I'm now on chemo with my 7th cycle today, everyone reacts differently to different drugs so it's really hard to say which to choose.

Good luck with treatment regards Phil.

User
Posted 15 May 2024 at 01:56

I doubt anyone here can give you much advise as everyone is different. The side effects of doxetacyl are not too troublesome for most people and I think that is also true for enzalutamide. 

It is extremely unlikely his cancer will ever be cured, so it is a case of treating it to slow down it's spread. It is usually the case that men with advanced cancer will end up needing to try every treatment eventually, so it probably doesn't make much difference which one he tries first.

Dave

User
Posted 16 May 2024 at 16:56

I was diagnosed 5 years ago at age 54 with inoperable stage IV PC, mets in my pelvis, spine, ribs etc.  I was (and still am) fairly fit, though certainly not marathon-running fit like your dad!

I had initial hormone therapy, then 6 cycles of docetaxel (at 3-weekly intervals) followed by 18 cycles of radiotherapy.  I've also been taking enzalutamide for the past 3 years.

Docetaxel chemo is mildly unpleasant, but not horrible, and the side-effects follow a predictable cycle.  You get steroids before each infusion, which make you feel rather lively, then 48 hours after the infusion the steroid effect wears off and you 'crash.'  You feel like you've got a bad cold (lethargic, tired, achy) for 7 days or so, then you start to feel better.  Then you're fine for 10 days, and it's time for another infusion.  Rinse & repeat.  Hair loss is common (mine grew back, it doesn't for some people), as is loss of appetite for a while.  

I've found very few side effects from enza, apart from complete loss of libido and the occasional hot flush.  Some people have more and worse side-effects.  

My 10p worth would be to go hard and go with the chemo as it suppressed my PSA very effectively for 2 years.  It did impact my QoL a little but I had my infusions done in April - June and being able to get out in bright, warmer weather helped me deal with the side-effects and improved my frame of mind no end.  

As mentioned by another poster, ask if chemo AND enza is possible.  Whatever your dad decides, best of luck to him, to you and your family.  Don't be afraid to ask questions of the oncologist, and on here to help inform your decisions.

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User
Posted 14 May 2024 at 22:32

Can’t really offer advice on this one but bumping you up in the hope that someone can.

I wish your dad all the best on his journey.

Derek

User
Posted 15 May 2024 at 01:56

I doubt anyone here can give you much advise as everyone is different. The side effects of doxetacyl are not too troublesome for most people and I think that is also true for enzalutamide. 

It is extremely unlikely his cancer will ever be cured, so it is a case of treating it to slow down it's spread. It is usually the case that men with advanced cancer will end up needing to try every treatment eventually, so it probably doesn't make much difference which one he tries first.

Dave

User
Posted 15 May 2024 at 07:41
Ok so hopefully your dad's medical team know what they are doing and have sufficient resources to offer the latest best treatment options. In that case it will come down to picking the best options for him and his lifestyle.

BUT it would be wise to ask a few questions just to make sure:

Why can't he have radiotherapy to the primary tumour and possibly the Mets in his pelvis. There is lots of research that shows treating the primary tumour helps in prostate cancer, even when it has already spread.

Why can't he have chemo AND Enzo?

If he is limited to the two options proposed ask which has the best evidence for success?

User
Posted 15 May 2024 at 08:38

Hi 

I was 53 when diagnosed in 2022, PSA 2100 I was offered enza or chemo,I asked for advice of my oncologist she advised me to go outside and talk it over with my wife!! I great help.

I chose enza and was on it for 18months,I'm now on chemo with my 7th cycle today, everyone reacts differently to different drugs so it's really hard to say which to choose.

Good luck with treatment regards Phil.

User
Posted 15 May 2024 at 19:18

Hi

This is such a hard decision, as everyone reacts to the drugs differently, with regard to effectiveness and side effects.

Research might indicate a blunderbuss approach - chemo, radiotherapy and hormone therapy. This might do the job, or unfortunately not! You also have to consider the effects on life during all these horrendous treatments.  You can probably forget a normal life for 6 months to a year.

Personally, I just couldn't face the prospect of chemo and radiotherapy yet. I wanted to prioritise quality of life. Consequently, I want for orchidectomy and apalutamide. Two years in and it's still working, I'm still active on the row erg and still working (although I do suffer the usual hot flushes, tiredness and zero libedo). I've been lucky, many aren't ith Enzo or apalutamide failing after 6 to 18 months. You just have to consider what you're willing to go through with your treatment and when.

You're doing the right thing, researching here and elsewhere. Consider what you've prepared to go through and quality of life. You don't have to just accept the basic standard of care, if it doesn't suit your situation.

User
Posted 16 May 2024 at 16:56

I was diagnosed 5 years ago at age 54 with inoperable stage IV PC, mets in my pelvis, spine, ribs etc.  I was (and still am) fairly fit, though certainly not marathon-running fit like your dad!

I had initial hormone therapy, then 6 cycles of docetaxel (at 3-weekly intervals) followed by 18 cycles of radiotherapy.  I've also been taking enzalutamide for the past 3 years.

Docetaxel chemo is mildly unpleasant, but not horrible, and the side-effects follow a predictable cycle.  You get steroids before each infusion, which make you feel rather lively, then 48 hours after the infusion the steroid effect wears off and you 'crash.'  You feel like you've got a bad cold (lethargic, tired, achy) for 7 days or so, then you start to feel better.  Then you're fine for 10 days, and it's time for another infusion.  Rinse & repeat.  Hair loss is common (mine grew back, it doesn't for some people), as is loss of appetite for a while.  

I've found very few side effects from enza, apart from complete loss of libido and the occasional hot flush.  Some people have more and worse side-effects.  

My 10p worth would be to go hard and go with the chemo as it suppressed my PSA very effectively for 2 years.  It did impact my QoL a little but I had my infusions done in April - June and being able to get out in bright, warmer weather helped me deal with the side-effects and improved my frame of mind no end.  

As mentioned by another poster, ask if chemo AND enza is possible.  Whatever your dad decides, best of luck to him, to you and your family.  Don't be afraid to ask questions of the oncologist, and on here to help inform your decisions.

 
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