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Sleepwalking through life!

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User
Posted 08 Jul 2023 at 15:01

15 months into advanced prostate cancer. Apalutamide is doing its job at the moment, as PSA below 0.1 and 12 month scan good.

Despite all this I feel like I'm just marking time until the inevitable decline.  Very tired due to the apalutamide, but can manage my part time work, so long as I rest after this.  It's becoming increasingly hard to get out of bed in the morning and maintain the 30 to 50km per week I do on the rowing erg. Housework is definitely slipping.

How have some of you managed to kick yourselves in the butt out of this malaise? I enjoy my work teaching, as the children make me smile. Travel isn't very enticing, as i hate airports and can take or leave new people and places. Just hoping there's some advice out there to change my mindset?

User
Posted 08 Jul 2023 at 19:54

Hi ForestJohn,

Sorry to hear your motivation has declined….it IS difficult at times to keep active, you know you should but it’s just so hard! I’m sorry but a rowing machine would bore me to tears! I use one at the gym for warming up for 10 mins and that’s enough! In fact I find the gym in general boring but at least you’re in amongst people and it’s doing you some good…some can even strike up a conversation. I find being amongst people really helpful, even sitting having a coffee. I also find the Maggies support group helps enormously…I thought it wouldn’t be for me but when I went along it totally transformed the way I feel and deal with issues. I always come away feeling better and motivated.

I had my latest Prostap injection on Thursday and I was an emotional wreck on Friday. My wife cuddled up to me in bed in the morning and I just burst into tears just feeling so sad about my lack of libido and what this HT is doing to my body. But I know it’s helping rid myself of cancer so I will just have to live with it.
I had planned a ride out in my ebike but I really couldn’t be bothered but I talked myself into it by promising myself a lunch somewhere nice…and wow did I feel the benefit. Off I went over into Edinburgh exploring some of the cycle paths and down into Leith where the new tram line is going. I found a lovely little cafe to sit and have lunch(Edinburgh prices, £6.50 for a slice of banana loaf😱) but what the hell, I really enjoyed my lunch. And as always happens when on my ebike someone stopped and asked me all about it and I think I converted them to the fun of ebiking. Stopped off at South Queensferry for an ice cream and sat admiring the 3 wonderful bridges across the Forth. Next thing I know a piper comes down the high street playing away followed by a wedding car. It was just so beautiful to see everyone so happy. And it made ME happy😊
Came home and my wife and I opened a bottle of Prosecco and then lit the BBQ and had a lovely evening.
And today? Well I’m feeling fabulous again, so motivated and positive.
I know cycling is not for everyone but an ebike really is a lot of fun and it’s good exercise without leaving you absolutely knackered. I did 47 miles and was a bit tired but not exhausted. I love the fact I can get out and about, travel to places which I couldn’t even contemplate on a normal bike. And also meet people, mostly likeminded people with their bikes. Not so much with Lycra brigade though they generally don’t like us🤣

Ive also started swimming to help with my aching joints…again in amongst people and there’s always someone to have a conversation with.

Sorry for my rambling post but the moral of my story is to try and find something that gives you pleasure and as you say ‘makes you smile’, gets you out and about  and keeps you active no matter how gentle the exercise  is. For me, it has been my saviour. And….Be good to yourself!

I hope maybe some of this helps…if I was closer I’d come round myself and give you a kick up the butt!😉

All the best.

Derek

User
Posted 08 Jul 2023 at 22:47

Hi ForestJohn

I can’t add much to Decho’s excellent post, save to say that I also find exercise helpful. Forcing myself to do something, be it a run, a cycle, some circuits or a walk invariably lifts my mood. The morning coffee is also key. As long as those boxes are ticked, I tend to have a good day, and when I don’t, I just accept it, and try to make sure the next day is better. I try to always have a book, a TV series and an album on the go. All of which can take you away from thinking about the thing that is never that far from our minds. 
One other change I have made post diagnosis is to try to be more open with people, and try to have slightly deeper conversations than I used to. I don’t go overboard, but have tried to lift some of my natural reservedness and move beyond small talk and superficial banter. As a result, I enjoy being around people more than I used to and find people respond better. Some will be a bit put off, but that is fine. Finally, I try not to be too hard on myself. If I mess something up, or fail to do my exercises, or to stick to my diet. I just move on, and try to look forwards not backwards. Pre diagnosis I would beat myself up about stuff more. Ultimately, there is no magic wand, and moods and motivation depend on so many things, some of which are outside of our control. I do hope things pick up for you.  

 

User
Posted 05 Aug 2023 at 22:23

I'm on Apalutamide but waiting to hit anywhere near zero PSA after 3 months (and 4 on Degarelix). Next week will be the big result, the last one fell only between 17 and 12, when previously it had fallen from 49. Worried I'll turn out to have some level of castrate resistance from the off, even if it seems 99% of new diagnoses are castrate sensitive to begin with.

The only thing I feel I know for sure is that Degarelix stripped 99.5% of the testosterone in month 1, the other drug just seems to be there for a mopping-up operation and its efficacy is unquantifiable in a blood test.

I've had extreme exhaustion on Apalutamide, I went through a period where I felt like I was dying when I woke up, eyes were open but I was semi-conscious and unable to fully move, and panicking for where my mobile was to ring for help, and because I've only slept in drifts for the last 5 months, currently half hours, and then fall back to sleep again, I kept going through it like a twisted version of Live, Die, Repeat. Thankfully I seem to have acclimatised and no longer have the nightmarish wakenings, but still sleep for 12-14 hours, all told.

The therapy is known to cause depression, especially Apalutamide because it crosses the brain threshold or whatever else I read it was phrased as in the Patient Info Leaflet (ah, there goes the memory too!), and that'll probably be why it can affect memory, mood and balance leading to falls (ataxia). I know that if I lose the will to do things when I'm up and about then I'll ask my GP for something because it could be depression creeping up on me like the cancer did. So please be watchful that you're not mistaking the symptoms of depression for medicative fatigue.

Sod's Law has often ruled my life but I'm determined it won't rule my decline, and I try to fill my head with escapism, and my heart with that which gives me joy, and in your case that means teaching kids and making them smile. That is something to hold on to.

Edited by member 06 Aug 2023 at 20:01  | Reason: Not specified

User
Posted 08 Jul 2023 at 23:30

A good time to exercise is before breakfast. I found it got me fully awake for the day. It also tends to mean your body is more likely to be burning fat, not having consumed any carbs yet.

It's also worth getting a set of bloods done, checking for low hemoglobin, low Vitamin B12, low iron, etc, which might make you feel more tired. Hormone therapy does make you a bit more anemic (reduces hemoglobin levels from the male range to the female range).

User
Posted 10 Jul 2023 at 07:55

Hi John,

A few things I would recommend.

Try some exercise activity that takes you somewhere, rather than a stationary rowing machine. Could be a run/jog. Or cycling. Or a brisk walk. Maybe include a cafe stop for a morning coffee to make it part of a daily routine.

Consider doing different activities on successive days.

Maybe find a training partner and meet at a local gym. It's always easier to get motivated if someone else is involved.

Think about including some weight training as I think it's really valuable if on lifetime adt like you and I. If you can then include squats to keep the legs strong. Aim to work as hard as you can cope with on the weights.

Good luck and keep at it, its worth it.

Cheers

John

User
Posted 10 Jul 2023 at 16:54
Maybe you should see if there is any NHS recommended classes in your area. I am a member of the local sports centre and I attend a

Health and Rehab Programme ( HARP ) class. This is a very light circuit training class and although I am probably the youngest at 64 years old I still work up a sweat. It is a general class and there are many different conditions on display not just cancer. You have to be referred by a GP or they will do an in-house self assessment.

Another NHS driven class is QiGong ( chee gong ). This is a lighter form of Tai Chi and once you get over the mindset of “ it’s just waving your arms slowly”🤔 it can be beneficial. Sometimes it is so relaxing that at the well-being segment at the end of class people are falling asleep ( sitting on chairs ).

Like you I went through a period of I can’t be bothered however once I decided I had to go to a class it gives you some slight motivation.

Rgds

Dave

User
Posted 10 Aug 2023 at 16:20

Thanks eurocentric,

It's good to hear from someone in a similar position.  I'm surprised you're having problems with memory, that issue was the reason I chose apalutamide over enzalutamide, which is supposed to be worse.  

It would be lovely if the consultant could consider reducing the dose.  I'd hoped after an orchidectomy and over 9 months less than 0.1 on the PSA, it might have been considered.  There might then be the hope of fewer hot flushes and tiredness.  I doubt that will be suggested however, as they're dealing with the unknown with cancer.

You mention depression and yes I recognise that.  However, is it just the symptoms of depression as we've been told we are heading for a horrible, early death and because the pills make us tired.  We have a right to feel like this! I certainly won't be heading for the pills for this, it would probably bring on more side effects!  Working and my trusty rowing erg will just have to do!

Good luck with your PSA levels, they should come down soon. Mine went from 50 to less than 0.1 in about 4 months.  However, it sounds like you started from a higher level.

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User
Posted 08 Jul 2023 at 19:54

Hi ForestJohn,

Sorry to hear your motivation has declined….it IS difficult at times to keep active, you know you should but it’s just so hard! I’m sorry but a rowing machine would bore me to tears! I use one at the gym for warming up for 10 mins and that’s enough! In fact I find the gym in general boring but at least you’re in amongst people and it’s doing you some good…some can even strike up a conversation. I find being amongst people really helpful, even sitting having a coffee. I also find the Maggies support group helps enormously…I thought it wouldn’t be for me but when I went along it totally transformed the way I feel and deal with issues. I always come away feeling better and motivated.

I had my latest Prostap injection on Thursday and I was an emotional wreck on Friday. My wife cuddled up to me in bed in the morning and I just burst into tears just feeling so sad about my lack of libido and what this HT is doing to my body. But I know it’s helping rid myself of cancer so I will just have to live with it.
I had planned a ride out in my ebike but I really couldn’t be bothered but I talked myself into it by promising myself a lunch somewhere nice…and wow did I feel the benefit. Off I went over into Edinburgh exploring some of the cycle paths and down into Leith where the new tram line is going. I found a lovely little cafe to sit and have lunch(Edinburgh prices, £6.50 for a slice of banana loaf😱) but what the hell, I really enjoyed my lunch. And as always happens when on my ebike someone stopped and asked me all about it and I think I converted them to the fun of ebiking. Stopped off at South Queensferry for an ice cream and sat admiring the 3 wonderful bridges across the Forth. Next thing I know a piper comes down the high street playing away followed by a wedding car. It was just so beautiful to see everyone so happy. And it made ME happy😊
Came home and my wife and I opened a bottle of Prosecco and then lit the BBQ and had a lovely evening.
And today? Well I’m feeling fabulous again, so motivated and positive.
I know cycling is not for everyone but an ebike really is a lot of fun and it’s good exercise without leaving you absolutely knackered. I did 47 miles and was a bit tired but not exhausted. I love the fact I can get out and about, travel to places which I couldn’t even contemplate on a normal bike. And also meet people, mostly likeminded people with their bikes. Not so much with Lycra brigade though they generally don’t like us🤣

Ive also started swimming to help with my aching joints…again in amongst people and there’s always someone to have a conversation with.

Sorry for my rambling post but the moral of my story is to try and find something that gives you pleasure and as you say ‘makes you smile’, gets you out and about  and keeps you active no matter how gentle the exercise  is. For me, it has been my saviour. And….Be good to yourself!

I hope maybe some of this helps…if I was closer I’d come round myself and give you a kick up the butt!😉

All the best.

Derek

User
Posted 08 Jul 2023 at 20:52

Great post, Decho.  Thanks for sharing your insights.  Every day is a learning day.

Best wishes,

JedSee.

User
Posted 08 Jul 2023 at 22:47

Hi ForestJohn

I can’t add much to Decho’s excellent post, save to say that I also find exercise helpful. Forcing myself to do something, be it a run, a cycle, some circuits or a walk invariably lifts my mood. The morning coffee is also key. As long as those boxes are ticked, I tend to have a good day, and when I don’t, I just accept it, and try to make sure the next day is better. I try to always have a book, a TV series and an album on the go. All of which can take you away from thinking about the thing that is never that far from our minds. 
One other change I have made post diagnosis is to try to be more open with people, and try to have slightly deeper conversations than I used to. I don’t go overboard, but have tried to lift some of my natural reservedness and move beyond small talk and superficial banter. As a result, I enjoy being around people more than I used to and find people respond better. Some will be a bit put off, but that is fine. Finally, I try not to be too hard on myself. If I mess something up, or fail to do my exercises, or to stick to my diet. I just move on, and try to look forwards not backwards. Pre diagnosis I would beat myself up about stuff more. Ultimately, there is no magic wand, and moods and motivation depend on so many things, some of which are outside of our control. I do hope things pick up for you.  

 

User
Posted 08 Jul 2023 at 23:06

I do have to stop lying in bed in the morning! I know it, but...

User
Posted 08 Jul 2023 at 23:30

A good time to exercise is before breakfast. I found it got me fully awake for the day. It also tends to mean your body is more likely to be burning fat, not having consumed any carbs yet.

It's also worth getting a set of bloods done, checking for low hemoglobin, low Vitamin B12, low iron, etc, which might make you feel more tired. Hormone therapy does make you a bit more anemic (reduces hemoglobin levels from the male range to the female range).

User
Posted 10 Jul 2023 at 07:55

Hi John,

A few things I would recommend.

Try some exercise activity that takes you somewhere, rather than a stationary rowing machine. Could be a run/jog. Or cycling. Or a brisk walk. Maybe include a cafe stop for a morning coffee to make it part of a daily routine.

Consider doing different activities on successive days.

Maybe find a training partner and meet at a local gym. It's always easier to get motivated if someone else is involved.

Think about including some weight training as I think it's really valuable if on lifetime adt like you and I. If you can then include squats to keep the legs strong. Aim to work as hard as you can cope with on the weights.

Good luck and keep at it, its worth it.

Cheers

John

User
Posted 10 Jul 2023 at 16:54
Maybe you should see if there is any NHS recommended classes in your area. I am a member of the local sports centre and I attend a

Health and Rehab Programme ( HARP ) class. This is a very light circuit training class and although I am probably the youngest at 64 years old I still work up a sweat. It is a general class and there are many different conditions on display not just cancer. You have to be referred by a GP or they will do an in-house self assessment.

Another NHS driven class is QiGong ( chee gong ). This is a lighter form of Tai Chi and once you get over the mindset of “ it’s just waving your arms slowly”🤔 it can be beneficial. Sometimes it is so relaxing that at the well-being segment at the end of class people are falling asleep ( sitting on chairs ).

Like you I went through a period of I can’t be bothered however once I decided I had to go to a class it gives you some slight motivation.

Rgds

Dave

User
Posted 05 Aug 2023 at 22:23

I'm on Apalutamide but waiting to hit anywhere near zero PSA after 3 months (and 4 on Degarelix). Next week will be the big result, the last one fell only between 17 and 12, when previously it had fallen from 49. Worried I'll turn out to have some level of castrate resistance from the off, even if it seems 99% of new diagnoses are castrate sensitive to begin with.

The only thing I feel I know for sure is that Degarelix stripped 99.5% of the testosterone in month 1, the other drug just seems to be there for a mopping-up operation and its efficacy is unquantifiable in a blood test.

I've had extreme exhaustion on Apalutamide, I went through a period where I felt like I was dying when I woke up, eyes were open but I was semi-conscious and unable to fully move, and panicking for where my mobile was to ring for help, and because I've only slept in drifts for the last 5 months, currently half hours, and then fall back to sleep again, I kept going through it like a twisted version of Live, Die, Repeat. Thankfully I seem to have acclimatised and no longer have the nightmarish wakenings, but still sleep for 12-14 hours, all told.

The therapy is known to cause depression, especially Apalutamide because it crosses the brain threshold or whatever else I read it was phrased as in the Patient Info Leaflet (ah, there goes the memory too!), and that'll probably be why it can affect memory, mood and balance leading to falls (ataxia). I know that if I lose the will to do things when I'm up and about then I'll ask my GP for something because it could be depression creeping up on me like the cancer did. So please be watchful that you're not mistaking the symptoms of depression for medicative fatigue.

Sod's Law has often ruled my life but I'm determined it won't rule my decline, and I try to fill my head with escapism, and my heart with that which gives me joy, and in your case that means teaching kids and making them smile. That is something to hold on to.

Edited by member 06 Aug 2023 at 20:01  | Reason: Not specified

User
Posted 10 Aug 2023 at 01:31
Spoke to my Apodi nurse today, she's paid for by Jannsen, Apalutamide's manufacturer, and rings me each month in between onco appointments to see how I'm doing as regards side-effects. Mentioned the fatigue, and how I'm also starting to forget things, I put the wrong wheelie out on Monday and went without a blood bag and didn't check-in at reception for my Degarelix injection & bloods on Tuesday so had to go back again today.

She suggested the onco might want to consider knocking me down to 3 pills a day, not 4 and that she has authority to do this ahead of me seeing the onco again in October if things don't improve. My PSA has only dropped again from 12 to 8, to the nearest number (this from urology clinic a week ago and now 4 months on from diagnosis) so I'm not keen to do that just yet, I want to see what my nadir is going to be, but with a static PSA of 0.1 maybe you have room to ask your oncologist what they think of trying this?

But, when I'm up and about I still do everything, any chores, and the part of your post which leapt out at me is not botherng with all the housework, which could be the fatigue, but also depression.

User
Posted 10 Aug 2023 at 16:20

Thanks eurocentric,

It's good to hear from someone in a similar position.  I'm surprised you're having problems with memory, that issue was the reason I chose apalutamide over enzalutamide, which is supposed to be worse.  

It would be lovely if the consultant could consider reducing the dose.  I'd hoped after an orchidectomy and over 9 months less than 0.1 on the PSA, it might have been considered.  There might then be the hope of fewer hot flushes and tiredness.  I doubt that will be suggested however, as they're dealing with the unknown with cancer.

You mention depression and yes I recognise that.  However, is it just the symptoms of depression as we've been told we are heading for a horrible, early death and because the pills make us tired.  We have a right to feel like this! I certainly won't be heading for the pills for this, it would probably bring on more side effects!  Working and my trusty rowing erg will just have to do!

Good luck with your PSA levels, they should come down soon. Mine went from 50 to less than 0.1 in about 4 months.  However, it sounds like you started from a higher level.

 
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