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Dad (68) recently diagnosed with metastatic PCa

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User
Posted 18 Aug 2023 at 12:14

Hi all,

First of all wanted to say a huge thanks as this forum has been a great resource in recent weeks as we've been coming to terms with all this. I wish you all the best. 

Yesterday my Dad's diagnosis of metastastic PCa was confirmed as he got his bone scan results back, showing it had spread all over his bones. Thankfully, it hasn't spread to his lymph nodes or visceral organs, at least. His PSA was only 15, but his Gleason score was 5+4 (in that order, sadly) - clearly aggressive, so I suppose not surprising it metastasised before it was ever discovered.

Treatment-wise, some good news in that he's getting the new 'triplet therapy' treatment that was recently approved by NICE for metastatic prostate cancer, which seemed to be quite promising in clinical trials: 

1) Androgen deprivation therapy (ADT) - the 3-monthly LHRH agonist injections (he had his first about 3 weeks ago)
2) A course of docetaxel chemotherapy - which he starts in a couple of weeks and should hopefully complete by December. 
3) Darolutamide tablets daily - which he'll start alongside docetaxel. 

Based on my brief foray into the medical journals, this seems like the right treatment regime for him, so I'm quite reassured by that. But no doubt, the Gleason score is scary. 

Naturally, we're all in shock as his only symptom (developed recently) was frequent urination. No bone pain or anything like that. He's otherwise very fit and healthy, generally full of energy for someone his age, swims 3 times a week, still perfectly able to do his manual labour job full time (he's off work at the moment due to a recent, unrelated hernia operation - frankly, he misses work!). 

He's mostly coping by staying busy and sociable, and living his normal day-to-day life - it's a lot more difficult for him when he's not occupied, so we're keen to keep him as busy as he wants to be, if we can. With that in mind, I had a few quick questions that I was wondering if anyone had any thoughts on:

1) The Docetaxel chemo seems to be more tolerable than most forms of chemo, but I'm guessing that he'd not be able to work during that treatment? (given the nature of his work, and the effects on e.g. immunity) Would he be likely to be able to return to work afterwards?

2) Similarly, would it be advisable to keep up the swimming during the docetaxel treatment? I get the sense exercise is beneficial with PCa, but again concerned about the immunity point. I suppose he may not have the energy anyway. 

3) Hugely grateful for any wider advice on how we can support him through his treatment and more broadly.

I can post updates of his journey here in case anyone's interested.

Thanks all!

User
Posted 09 Feb 2024 at 17:24
Hi all,

A quick update - my Dad completed his course of Docetaxel in late December, and today he had his phone consultation following his scans.

Very relieved to say he had a 'good response' to the chemo according to his scans, and his most recent PSA score was at undetectable levels. He will continue with the Darolutamide and HT.

Symptoms wise, in the last month or so he was having a bit of leg pain which we were a bit worried about, but it's since gone away. He thinks that was a muscular issue due to his swimming - and given we now know he's had a good chemo response, that seems plausible.

We'll see how goes over the coming months but this is promising and felt like a bit of good news, so thought I'd share with the forum.

Thanks all.

User
Posted 10 Feb 2024 at 09:24

Hi mag

I've just read your thread so playing catch up,I'm just going through my 2nd round of chemo and side effects seem to kick In a few days after injection then Peter off after a week leaving me about a week and half of pretty decent QOL I also have stomach injections for 5 days for white blood cells,it's great news to hear that your dad has responded well to chemo and hoping that his PSA remains undetectable for a long time,fingers crossed I follow the same route, oncology appointment next month so I'll see where I stand then.

Regards Phil 

User
Posted 12 Feb 2024 at 07:16
Hi Mag ,my OH had similar stats 8 yrs ago . PSA 23 …..4+5 with mets in lymph Nodes .

He was 55 at diagnosis,we were distraught as it was diagnosed just before Xmas . Gary had the chemo and managed to carry on working all the way through,he also has a manual job ( builds marinas) .He didn’t have cold cap and didn’t lose head hair only body hair. 8 yrs on he’s still working , a lot slower than before and also still enjoying life .

Yes our lives have changed but you get used to a new life . We’ve now got 7 grandchildren that we didn’t have at the beginning !

Keep posting and ask any questions,lots of kind knowledgeable people onboard .

Good luck

Debby .

User
Posted 10 Aug 2024 at 10:18

Hi Magol - I wouldn't worry too much about your dad's PSA rising to 0.4.  It's simply because he still has a prostate, so the nurse is right, PSA levels don't always remain undetectable. 

For what it's worth, my consultant at the Christie Manchester told me they don't get too concerned at all with post-treatment PSA readings of up to 1 - 1.5 in men who have metastatic PCa and still have a prostate.  What they look for is sudden large jumps between 3-monthly tests, say from 0.5 to 5, then to 10.

The important thing is that your dad is living his life and feeling relatively normal.  Long may that continue. 

 

 

User
Posted 10 Aug 2024 at 11:39

Hi Magol,

Good to get an update from you. Like Craig says I would go with what the CNS said. I try to avoid Dr Google as it tends always to lead to doom and gloom😟 or why not phone the Nurses on this site, they are wonderful and will take time to explain things to you.

Maybe your dad needs to ease up on the work, especially if it’s physically demanding for him. Mind you, if it makes him happy then who am I to judge?

I’m the same age as your dad, and although I’m on a curative path, who knows. I try just to get on with having as much fun as possible..and that includes being retired-best job in the world😊

I wish your dad all the best and he’s a lucky to have a daughter who cares so much!

Derek

 

User
Posted 10 Aug 2024 at 14:32

I agree with what Craig says about ‘post treatment’ PSA but in your dads case it seems he’s still undergoing treatment which would hopefully keep his PSA undetectable. In your situation I would want to closely monitor PSA with more regular tests, and it’s good that they’re doing scans soon also. If it continues to rise hopefully they could try other treatments. 

Best of luck to your dad 👍

User
Posted 18 Aug 2023 at 12:14

Hi all,

First of all wanted to say a huge thanks as this forum has been a great resource in recent weeks as we've been coming to terms with all this. I wish you all the best. 

Yesterday my Dad's diagnosis of metastastic PCa was confirmed as he got his bone scan results back, showing it had spread all over his bones. Thankfully, it hasn't spread to his lymph nodes or visceral organs, at least. His PSA was only 15, but his Gleason score was 5+4 (in that order, sadly) - clearly aggressive, so I suppose not surprising it metastasised before it was ever discovered.

Treatment-wise, some good news in that he's getting the new 'triplet therapy' treatment that was recently approved by NICE for metastatic prostate cancer, which seemed to be quite promising in clinical trials: 

1) Androgen deprivation therapy (ADT) - the 3-monthly LHRH agonist injections (he had his first about 3 weeks ago)
2) A course of docetaxel chemotherapy - which he starts in a couple of weeks and should hopefully complete by December. 
3) Darolutamide tablets daily - which he'll start alongside docetaxel. 

Based on my brief foray into the medical journals, this seems like the right treatment regime for him, so I'm quite reassured by that. But no doubt, the Gleason score is scary. 

Naturally, we're all in shock as his only symptom (developed recently) was frequent urination. No bone pain or anything like that. He's otherwise very fit and healthy, generally full of energy for someone his age, swims 3 times a week, still perfectly able to do his manual labour job full time (he's off work at the moment due to a recent, unrelated hernia operation - frankly, he misses work!). 

He's mostly coping by staying busy and sociable, and living his normal day-to-day life - it's a lot more difficult for him when he's not occupied, so we're keen to keep him as busy as he wants to be, if we can. With that in mind, I had a few quick questions that I was wondering if anyone had any thoughts on:

1) The Docetaxel chemo seems to be more tolerable than most forms of chemo, but I'm guessing that he'd not be able to work during that treatment? (given the nature of his work, and the effects on e.g. immunity) Would he be likely to be able to return to work afterwards?

2) Similarly, would it be advisable to keep up the swimming during the docetaxel treatment? I get the sense exercise is beneficial with PCa, but again concerned about the immunity point. I suppose he may not have the energy anyway. 

3) Hugely grateful for any wider advice on how we can support him through his treatment and more broadly.

I can post updates of his journey here in case anyone's interested.

Thanks all!

User
Posted 18 Aug 2023 at 13:18
Well he is blessed to have a well informed daughter on his side!

Hope he tolerates the triplet treatment ok and has a long and happy remission...

User
Posted 18 Aug 2023 at 14:52
Hi

I am on the exact same plan is your dad, just got in on the Darolutamide after is was approved for Advanced PC.

On the immunity front it's a hard battle to stay away from illness for the 5 or so months of the treatment, and on my first chemo I was brought down by Strep A 8 days later and was in the local hospital's acute ward for 5 days. After that my oncologist started adding the injection I can do myself which you inject into your belly fat 24 hours after chemo. I can't remember the name of it but it allows the white blood cells to come back to normal (or even high) levels during the 3 weeks gap. I'm not sure why this isn't given by default, but I had it every session after that and was fine with colds, and I had at least 3 of them during the 5 months. Might be an idea to ask for it from the get-go.

I think he might also be offered radiotherapy once the Chemo has finished, and that's where I am now. Had the spacer gel injected and the planning CT/MRI scans and start RT on Tuesday at a GenesisCare centre.

My job is working from home so I was able to continue it, but anything more than moving a mouse around I would have probably given myself the resting time away from work, the fatigue was pretty bad on a few of the days in the cycle and I found myself in bed a lot of the time on those days.

User
Posted 22 Aug 2023 at 17:43

Sorry to hear about your dads diagnosis Magol. 

It definitely helps when you do your research and know a bit more what to expect, I’m sure it will all be very useful for your dad.

The good news is that he hasn’t had any effects of the cancer and is fit and well otherwise. I always just say to my husband that that’s where we need to keep him and as long as we do that then it doesn’t matter if he has cancer or not (I think that’s a coping strategy for me). I know the treatment will also have a say in that but hopefully he won’t have too many side effects 🤞🏼 

It would be a shame if he can’t continue his swimming if that’s what he enjoys but I completely get where you’re coming from with immunity, exercise seems to be such a big part of the process and we’ve had that drummed in by all the consultants we’ve seen.

Wishing your dad the very best with his treatment 👍

Elaine

User
Posted 09 Feb 2024 at 18:45

Hi Magol,

Always nice to hear good news on here. maybe the leg pain is just a side effect of the HT? I’ve got issues with my hips, knees and ankles. Lots of men seem to have joint pain on HT.

wish your dad all the best for the future.

Derek

User
Posted 10 Aug 2024 at 01:19

Hi all,

Update - Dad has returned to work a few months ago. Still doing his physically intense manual Labour job, but in a more delicate way. I think his spirits are lifted by feeling like he's able to return to normal. His current treatment is Darolutamide and HT injections every 3 months, following Docetaxel last Autumn.

So things felt normal - for a few months.  Today, we've heard his PSA has risen from undetectable in Feb/March to 0.4 now. I was given the impression it was very low in May, but he didn't recall being given a figure then, so unsure if this is a gradual rise or a big jump. His current treatment is Darolutamide and HT injections every 3 months, following Docetaxel last Autumn.The nurse said the increase was a 'slight bump', though 0.4 seems like quite a big jump to me (!) considering last I was aware it was virtually zero. Thankfully, they've booked a scan for him and it will be taking place in 3-4 weeks time, so we'll soon find out if anything is happening.

I've been reading various studies to understand a bit better how PSA tends to progress following initial treatment, and my Dad seems like he had the ideal initial response to the chemo/Darolutamide combination in achieving undetectable PSA, sustained for some months. 

At 0.4, his PSA number is not in the range that suggests progression yet (the ARASENS study which his triplet treatment is based on defined 'PSA progression' as >2.0). But what these studies give me little sense of is how to interpret this jump to 0.4 in this kind of timeframe (i.e. a few months after being undetectable; 12 months on from the beginning of treatment).

So my question is (in case anyone knows!): should we assume a rise of this nature typically means PSA will keep rising steadily and lead to disease progression/CRPC fairly soon? (If so, should we be seeking for his teratment to change in any way?) Or is it the case that for some patients, PSA can rebound from 'undetectable' months after treatment, and then be relatively stable for some time in this relatively unthreatening range (say, 0.2-2.0)?

Thanks all - hope you're all enjoying the summer.

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User
Posted 18 Aug 2023 at 13:18
Well he is blessed to have a well informed daughter on his side!

Hope he tolerates the triplet treatment ok and has a long and happy remission...

User
Posted 18 Aug 2023 at 14:52
Hi

I am on the exact same plan is your dad, just got in on the Darolutamide after is was approved for Advanced PC.

On the immunity front it's a hard battle to stay away from illness for the 5 or so months of the treatment, and on my first chemo I was brought down by Strep A 8 days later and was in the local hospital's acute ward for 5 days. After that my oncologist started adding the injection I can do myself which you inject into your belly fat 24 hours after chemo. I can't remember the name of it but it allows the white blood cells to come back to normal (or even high) levels during the 3 weeks gap. I'm not sure why this isn't given by default, but I had it every session after that and was fine with colds, and I had at least 3 of them during the 5 months. Might be an idea to ask for it from the get-go.

I think he might also be offered radiotherapy once the Chemo has finished, and that's where I am now. Had the spacer gel injected and the planning CT/MRI scans and start RT on Tuesday at a GenesisCare centre.

My job is working from home so I was able to continue it, but anything more than moving a mouse around I would have probably given myself the resting time away from work, the fatigue was pretty bad on a few of the days in the cycle and I found myself in bed a lot of the time on those days.

User
Posted 22 Aug 2023 at 12:44

Originally Posted by: Online Community Member
Hi

I am on the exact same plan is your dad, just got in on the Darolutamide after is was approved for Advanced PC.

On the immunity front it's a hard battle to stay away from illness for the 5 or so months of the treatment, and on my first chemo I was brought down by Strep A 8 days later and was in the local hospital's acute ward for 5 days. After that my oncologist started adding the injection I can do myself which you inject into your belly fat 24 hours after chemo. I can't remember the name of it but it allows the white blood cells to come back to normal (or even high) levels during the 3 weeks gap. I'm not sure why this isn't given by default, but I had it every session after that and was fine with colds, and I had at least 3 of them during the 5 months. Might be an idea to ask for it from the get-go.

I think he might also be offered radiotherapy once the Chemo has finished, and that's where I am now. Had the spacer gel injected and the planning CT/MRI scans and start RT on Tuesday at a GenesisCare centre.

My job is working from home so I was able to continue it, but anything more than moving a mouse around I would have probably given myself the resting time away from work, the fatigue was pretty bad on a few of the days in the cycle and I found myself in bed a lot of the time on those days.

Hi, thanks so much for this reply, this is all really useful info. Sorry to hear you've had a rough time on the immunity front. Will bear this in mind and ensure he paces himself during that treatment (he's always wanting to be out, going here and there). I'll make sure they enquire about the injection which boosts your white blood cells, this is a really helpful tip. Definitely sounds like in my Dad's case he'll need a break from work at least during his treatment too.

Best of luck with the radiotherapy, hope your treatment goes smoothly. 

User
Posted 22 Aug 2023 at 17:43

Sorry to hear about your dads diagnosis Magol. 

It definitely helps when you do your research and know a bit more what to expect, I’m sure it will all be very useful for your dad.

The good news is that he hasn’t had any effects of the cancer and is fit and well otherwise. I always just say to my husband that that’s where we need to keep him and as long as we do that then it doesn’t matter if he has cancer or not (I think that’s a coping strategy for me). I know the treatment will also have a say in that but hopefully he won’t have too many side effects 🤞🏼 

It would be a shame if he can’t continue his swimming if that’s what he enjoys but I completely get where you’re coming from with immunity, exercise seems to be such a big part of the process and we’ve had that drummed in by all the consultants we’ve seen.

Wishing your dad the very best with his treatment 👍

Elaine

User
Posted 17 Sep 2023 at 23:45

Thanks for the replies all. 

Just by way of an update, my Dad started his first Docetaxel chemotherapy (+ Prednisolone) on 12th September, alongside starting Darolutamide the same day. So he's just finished day 6 and so far he's still feeling pretty good, almost normal, which we're hugely relieved about.

Conscious that the side effects tend to get worse with additional cycles, but this seems to be a good start at least. He's also opted for the cold cap for his Docetaxel sessions, which he said for the first 10 minutes was horrible (like a brain freeze but 10x worse, he said) - but then was fine. Hopefully he'll get to keep most of the hair on his head, at least. 

He's never had any bone pain, so really his only physical symptoms of the cancer remains frequent urination. HT has obviously messed things around a bit (hot flushess most notably), and the chemo gave him some mild stomach upset, but he's continuing to be very active, continuing his swimming and going out for walks etc. Though I have advised them to be careful in this second week of the cycle as the immune issues become a bigger risk, and to monitor his temperature even if he feels totally fine. 

Will give further updates when I have news, thanks all. 

User
Posted 09 Feb 2024 at 17:24
Hi all,

A quick update - my Dad completed his course of Docetaxel in late December, and today he had his phone consultation following his scans.

Very relieved to say he had a 'good response' to the chemo according to his scans, and his most recent PSA score was at undetectable levels. He will continue with the Darolutamide and HT.

Symptoms wise, in the last month or so he was having a bit of leg pain which we were a bit worried about, but it's since gone away. He thinks that was a muscular issue due to his swimming - and given we now know he's had a good chemo response, that seems plausible.

We'll see how goes over the coming months but this is promising and felt like a bit of good news, so thought I'd share with the forum.

Thanks all.

User
Posted 09 Feb 2024 at 18:45

Hi Magol,

Always nice to hear good news on here. maybe the leg pain is just a side effect of the HT? I’ve got issues with my hips, knees and ankles. Lots of men seem to have joint pain on HT.

wish your dad all the best for the future.

Derek

User
Posted 09 Feb 2024 at 20:03

Originally Posted by: Online Community Member

Hi Magol,

Always nice to hear good news on here. maybe the leg pain is just a side effect of the HT? I’ve got issues with my hips, knees and ankles. Lots of men seem to have joint pain on HT.

wish your dad all the best for the future.

Derek

Hi Decho,

Thanks for this - that's useful to know, that could well explain it - his job involved a lot of physical labour, so no longer doing that, combined with HT, probably isn't doing him many favours. Despite keeping up the swimming, he's clearly lost a lot of muscle mass, which is to be expected really. 

Wish you all the best too - hope the issues with your hips, knees and ankles don't cause you too much bother! 

User
Posted 10 Feb 2024 at 09:24

Hi mag

I've just read your thread so playing catch up,I'm just going through my 2nd round of chemo and side effects seem to kick In a few days after injection then Peter off after a week leaving me about a week and half of pretty decent QOL I also have stomach injections for 5 days for white blood cells,it's great news to hear that your dad has responded well to chemo and hoping that his PSA remains undetectable for a long time,fingers crossed I follow the same route, oncology appointment next month so I'll see where I stand then.

Regards Phil 

User
Posted 12 Feb 2024 at 07:16
Hi Mag ,my OH had similar stats 8 yrs ago . PSA 23 …..4+5 with mets in lymph Nodes .

He was 55 at diagnosis,we were distraught as it was diagnosed just before Xmas . Gary had the chemo and managed to carry on working all the way through,he also has a manual job ( builds marinas) .He didn’t have cold cap and didn’t lose head hair only body hair. 8 yrs on he’s still working , a lot slower than before and also still enjoying life .

Yes our lives have changed but you get used to a new life . We’ve now got 7 grandchildren that we didn’t have at the beginning !

Keep posting and ask any questions,lots of kind knowledgeable people onboard .

Good luck

Debby .

User
Posted 10 Aug 2024 at 01:19

Hi all,

Update - Dad has returned to work a few months ago. Still doing his physically intense manual Labour job, but in a more delicate way. I think his spirits are lifted by feeling like he's able to return to normal. His current treatment is Darolutamide and HT injections every 3 months, following Docetaxel last Autumn.

So things felt normal - for a few months.  Today, we've heard his PSA has risen from undetectable in Feb/March to 0.4 now. I was given the impression it was very low in May, but he didn't recall being given a figure then, so unsure if this is a gradual rise or a big jump. His current treatment is Darolutamide and HT injections every 3 months, following Docetaxel last Autumn.The nurse said the increase was a 'slight bump', though 0.4 seems like quite a big jump to me (!) considering last I was aware it was virtually zero. Thankfully, they've booked a scan for him and it will be taking place in 3-4 weeks time, so we'll soon find out if anything is happening.

I've been reading various studies to understand a bit better how PSA tends to progress following initial treatment, and my Dad seems like he had the ideal initial response to the chemo/Darolutamide combination in achieving undetectable PSA, sustained for some months. 

At 0.4, his PSA number is not in the range that suggests progression yet (the ARASENS study which his triplet treatment is based on defined 'PSA progression' as >2.0). But what these studies give me little sense of is how to interpret this jump to 0.4 in this kind of timeframe (i.e. a few months after being undetectable; 12 months on from the beginning of treatment).

So my question is (in case anyone knows!): should we assume a rise of this nature typically means PSA will keep rising steadily and lead to disease progression/CRPC fairly soon? (If so, should we be seeking for his teratment to change in any way?) Or is it the case that for some patients, PSA can rebound from 'undetectable' months after treatment, and then be relatively stable for some time in this relatively unthreatening range (say, 0.2-2.0)?

Thanks all - hope you're all enjoying the summer.

User
Posted 10 Aug 2024 at 10:18

Hi Magol - I wouldn't worry too much about your dad's PSA rising to 0.4.  It's simply because he still has a prostate, so the nurse is right, PSA levels don't always remain undetectable. 

For what it's worth, my consultant at the Christie Manchester told me they don't get too concerned at all with post-treatment PSA readings of up to 1 - 1.5 in men who have metastatic PCa and still have a prostate.  What they look for is sudden large jumps between 3-monthly tests, say from 0.5 to 5, then to 10.

The important thing is that your dad is living his life and feeling relatively normal.  Long may that continue. 

 

 

User
Posted 10 Aug 2024 at 11:39

Hi Magol,

Good to get an update from you. Like Craig says I would go with what the CNS said. I try to avoid Dr Google as it tends always to lead to doom and gloom😟 or why not phone the Nurses on this site, they are wonderful and will take time to explain things to you.

Maybe your dad needs to ease up on the work, especially if it’s physically demanding for him. Mind you, if it makes him happy then who am I to judge?

I’m the same age as your dad, and although I’m on a curative path, who knows. I try just to get on with having as much fun as possible..and that includes being retired-best job in the world😊

I wish your dad all the best and he’s a lucky to have a daughter who cares so much!

Derek

 

User
Posted 10 Aug 2024 at 14:32

I agree with what Craig says about ‘post treatment’ PSA but in your dads case it seems he’s still undergoing treatment which would hopefully keep his PSA undetectable. In your situation I would want to closely monitor PSA with more regular tests, and it’s good that they’re doing scans soon also. If it continues to rise hopefully they could try other treatments. 

Best of luck to your dad 👍

User
Posted 11 Aug 2024 at 11:31
Hi Magol

Your dad's starting PSA is similar to mine. Did your fathers Oncologist not consider Radiotherapy after the docetaxel?

Maybe treatment plans are changing, it's a few years now since I had the chemo/radiotherapy in quick succession.

User
Posted 12 Aug 2024 at 02:53

Thanks for the helpful comments all! Calling the nurses might be a good idea, I'll consider that.

Originally Posted by: Online Community Member

I agree with what Craig says about ‘post treatment’ PSA but in your dads case it seems he’s still undergoing treatment which would hopefully keep his PSA undetectable. In your situation I would want to closely monitor PSA with more regular tests, and it’s good that they’re doing scans soon also. If it continues to rise hopefully they could try other treatments. 

Best of luck to your dad 👍

Hi Elaine, 

Thanks for this - yes this is precisely my concern really. As others have said, his current PSA level - if maintained - is not really a concern, but more the sense that it might be gradually increasing and his treatment is not preventing that; which would imply he might soon progress to being castrate resistant. This is quite unusual - the ARASENS trial (that my Dad's treatment is based on) found that only 11% of people who achieved an undetectable PSA at 24 weeks from treatment starting (as he did) then went on to see their PSA progress to >2.0 within the follow-up period (about 3.5 years in this trial). So he would be quite unlucky to be in that 11%, but I suppose someone has to be in that group!

But yes, if it does continue to rise, he'll certainly be trying other treatments. It's interesting that Docetaxel worked incredibly well for him - his post-Docetaxel scans showed he had a complete response with no evidence of disease in his bones at all, and only a very small amount left in his prostate. I don't know how common this sort of outcome is from Docetaxel, but worth noting that at diagnosis, his oncologist said he had very high and widespread disease on his bones, so this was quite a dramatic turnaround and they were impressed with it. 

If his PSA does now continue to rise, I wonder if he might be in the category of partients for whom ARAT therpaies (Androgen Receptor-axis Targeted - like Darolutamide) aren't so effective, but where Docetaxel is very effective. There seems to be some evidence that patients who aren't responsive to ARATs do respond well to Docetaxel, and Docetaxel 'rechallenge' (i.e. undergoing Docetaxel treatment for a second time):

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8627717/ 

Certainly, this could explain why he had such a strong response to the Docetaxel and yet why his numbers may be starting to go up again post-treatment, despite this being quite unusual for his treatment regime. If it were the case that he is less responsive to ARATs (and it's far too soon to say), this would obviously be bad in the sense that he isn't able to achieve the long-term stability (undetectable PSA) that others have on these drugs. But at least we would've got a better idea of the (likely) strongest treatment options for him, so that we can extend his life as much as possible. 

Apologies for the wordy technical post, mostly thinking out loud here and your post helped me think this through a bit - so thanks very much Elaine. We'll have to take things as they come, of course. If anyone has any thoughts on the above, keen to hear :)

User
Posted 12 Aug 2024 at 02:59

Originally Posted by: Online Community Member
Hi Magol
Your dad's starting PSA is similar to mine. Did your fathers Oncologist not consider Radiotherapy after the docetaxel?
Maybe treatment plans are changing, it's a few years now since I had the chemo/radiotherapy in quick succession.

Hi Jasper, thanks for this - good point.

So the view taken was that he did not need Radiotherapy following Docetaxel, because he had no disease present on his bones anymore, only a very small amount in the prostate - which my understanding is that they don't necessarily treat in metastatic prostate cancer? (Do correct me if I'm wrong - did your radiotherapy ever target your prostate directly, or only the bones?)

That said, I suspect one of the things the scans will help us understand is whether he should have radiotherapy - e.g. if the cancer has returned in some specific areas. Certainly at his current PSA level, I'd imagine it's still quite minimal. 

Very glad to see from your profile that your treatment seems to be continuing well, may that long continue!

User
Posted 12 Aug 2024 at 08:21

Hi Mangol

I finished my 10th and final cycle of Docetaxel around 4 weeks ago,my PSA has slowly been coming down (at the moment it's 9) I have a blood test today and an appointment on Thursday with my onco chemist if the result is good news and PSA has fallen I will ask the questions again why I cannot have Docetaxel again,is it cost?who pulls the strings?who makes the decision?it's all very frustrating when the treatment has worked once so why won't it work again!!!! Errrrrrrrr.

Regards Phil 

 

User
Posted 12 Aug 2024 at 12:36

Hi Magol again.

In answer to your question the radiotherapy targeted the prostate only not the mets. Mothership blasted into oblivion I hoped.

In hindsight with a single met I would have probably been a good candidate for SABR as well but this was never offered.

Wishing your dad well for his future treatment.

User
Posted 12 Aug 2024 at 13:13

Originally Posted by: Online Community Member

Hi Mangol

I finished my 10th and final cycle of Docetaxel around 4 weeks ago,my PSA has slowly been coming down (at the moment it's 9) I have a blood test today and an appointment on Thursday with my onco chemist if the result is good news and PSA has fallen I will ask the questions again why I cannot have Docetaxel again,is it cost?who pulls the strings?who makes the decision?it's all very frustrating when the treatment has worked once so why won't it work again!!!! Errrrrrrrr.

Regards Phil 

Hi Phil,

Glad to hear your Docetaxel treatment is going well, and best of luck for your appointment on Thurs.

Good question - have they definitively said you can't have it again? I'm no expert on this, but I was under the impression that patients who had a good response to Docetaxel were sometimes able to do so again (unless that's not true in the UK?) - though if I recall correctly, there needs to be a period of time before the second course of treatment. I think Docetaxel can sometimes be less effective the second time around, but from what I read, those who had strong response the first time around were more likely to have a good response the second time. 

So if you've had a good response to Docetaxel, can imagine it's worth asking the question and ensuring you get a clear explanation for why if you're being denied it. If it does come down to cost (I'm unsure if it is, since I think Docetaxel is a lot less expensive than some of the other drugs like Darolutamide), I suppose there's always the option to enquire about private treatment if you have the means.

User
Posted 12 Aug 2024 at 13:19

Originally Posted by: Online Community Member

Hi Magol again.

In answer to your question the radiotherapy targeted the prostate only not the mets. Mothership blasted into oblivion I hoped.

In hindsight with a single met I would have probably been a good candidate for SABR as well but this was never offered.

Wishing your dad well for his future treatment.

Hi Jasper,

That's very interesting to know, thanks for saying. We'll have to see what the scan results look like and what the oncology team recommend - but useful to know that this might be an option.

User
Posted 07 Sep 2024 at 01:16

Hi Magol

I am new to this forum and have just read your posts, you can see my diagnosis in my profile I think!

I have had the same treatment regime as your father over the last 12 months the only difference being I was given 6 x double fractions of external beam radiation to the prostate and surrounding area, the thinking of the oncologist and radiologist was that it may be of some benefit to try and eradicate the source, time will tell!

In regards to Chemo there is possible evidence that combining "Bovine Lactoferrin" with Dox may be of some benefit with the treatment, DYOR.

Regards Tim 

User
Posted 04 Oct 2024 at 23:12

Hi all,

Just a quick update on this - Dad had the scan results today with his oncologist, and it's fairly positive news - the scan was completely clear.

In his Feb scan, there was no sign of activity on the bones (i.e. no mets picked up by the scan) but with some small number of cells remaining in the prostate. This time his scan showed that his prostate was also clear, as well as his bones. So this scan was in fact even better despite PSA being <0.01 then and higher now. Big relief - especially since the Oncologist said the scanner used at this hospital was highly sensitive/accurate, so the fact it picked up nothing was very reassuring. (I'm guessing the explanation for this may be that at the time of the Feb scan, the effects of the chemo were not entirely complete yet)

No suggested changes to treatment (which consists of daily Darolutamide and obviously HT injections every 3 months), for now at least.

The concerning part was - as discussed previously the PSA is slowly creeping up since June - from undetectable in the Spring (<0.01) up to 0.4 in early August. The good news here is that last week's PSA test was 0.26, which is obviously a decline from 0.4 two months previously. This came with no change in his treatment - so maybe suggests PSA could perhaps be stabilising - for now at least? We'll need to see what subsequent readings say, as it does seem like these things can fluctuate, and the trend could easily continue upwards.

The oncologist's view was that they'd want the PSA to be <0.01 and there's something that must be causing this for it not to be at that level, so they're going to remain keeping a close eye on him. He'll continue having PSA tests every 2 months, as he has been, and they've said they'll give him another scan in 6 months' time.

One thing I was wondering (and would be interested in views regarding) is whether we should be looking at his testosterone level? From reading I did a few months back, I got the impression that sometimes testosterone not being suppressed quite enough can cause these sorts of numbers and maybe we should check in case it could be lower. I don't have this data but I'm sure they've tested this.

Alternatively, perhaps this is just what a slow, gradual progression to castrate resistance looks like. After all, his diagnosis was a Gleason 5+4 (i.e. very aggressive and not generally a good prognosis), and obviously controlling metastatic disease is (in most cases) fundamentally about slowing progression as much as possible - not everyone can stay undetectable for years of course, even on the best treatments. His treatment regime has clearly worked very well and even now his initial treatments are still holding up, with plenty of other options left on the table when they eventually fail. Trying to remain grateful for that - with a diagnosis like his, things could have been far worse by now. 

Overall, I still think this is quite positive, and we're taking some comfort in these results. Dad is understandably still anxious. If nothing else, though, we're definitely reassured by the quality of his care - they're being very proactive about keeping on top of things, and we're very grateful.

Edited by member 04 Oct 2024 at 23:34  | Reason: Not specified

 
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