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Dad (68) recently diagnosed with metastatic PCa

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 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

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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 .

 
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