Prostap and exercise

User

Posted 19 Mar 2019 at 14:31

Hi all.

I have been diagnosed for about 2 years now and have been on Prostap for just over 4 months with a view to radiotherapy starting early April. Oh the joy....

When I got my first months worth of Prostap not a lot seemed to change, including my psa which didn't drop at the rate the oncology nurse thought. However I found myself exercising harder and faster due to the horrific side effects I was anticipating. Had to force myself to stop going down that path..... The second injection which was 3 months worth had a bad effect. I got a sciatica like pain in both hips almost immediately, that made it difficult to walk and took 5 weeks to wear off. As it says on the tin, it also removed all my masculinity, gave me headaches, insomnia and I started to notice weight gain around the middle after a weight loss which might have been stress related. As Lynn has suggested elsewhere on this forum, I think this pain was muscle loss, particularly as I can now sink my hand into my thighs and buttocks like I never could before.

I have been a keen runner all my life; not marathon level, but fit enough that I can run 6 miles and not be frightened it's bringing on a heart attack! Generally I ran 3 - 4 times a week doing 4 - 6 miles each time. Kept me happy. Now I go to the gym and work through a program of weights suggested by my friend who's a personal trainer and I still go what I would call "social" swimming which I've also done for a while. My "social" cycling seems to be a no no due to the gold seeds I now have up my ar*e and the impending radiotherapy.

Going to the gym is a new thing to me so I can't say what I might have been like before, and the "social" cycling and swimming are just that - not pushing too hard so can't compare there either. However, when running I wear a Garmin watch, which actually I don't need to monitor the decrepitude that has befallen me. Whereas 6 miles was no trouble and I enjoyed going out and listening to the birds singing, I now can barely run 2 miles and have to stop innumerable times even then. The Garmin tells me my pace is down, which I can tell, but even my gate has changed for the worse and I get even more time to listen to the birds as I have to stop loads.

I find that the changes Prostap has given me humiliating and now that I have got rid of the pain and should be able to run again, it just embarrasses me and compounds the shame that I can't even approach what I did only 6 weeks ago.

All the leaflets and online stuff seem to recommend that I keep up "moderate" exercise in order to "slow down" the muscle wastage, but with the lack of nhs support on preemptive recovery in other areas (down below; to remove doubt!) I was keen to take control of this one last thing. So my question is this; With a proper program of exercise, can muscle wastage be reversed as you might expect a regular gym goer to gain muscle, or is it purely going to postpone the inevitable?

Cheers,

btbear

User

Posted 20 Mar 2019 at 09:37

I don't understand why you feel humiliated by having cancer treatment, but I've been there and I get most of the rest of it.

I've been off the HT for about 15 months now. It was hard work at times, it was certainly depressing at times - not all a 'rational reaction to events', some of that was likely another side effect of the HT.

I did make an effort to keep active throughout, indeed after a lifetime of saying 'You'll not catch me exercising', I now have a regular (not particularly gruelling) routine. And I watch my weight.

I'm now as fit as I was pre-diagnosis, and a few Kg lighter (though still slightly above a perfect BMI). But you'll likely kill yourself if you try to return to 'normality' before the HT is over. It knackers you: that's its job, and it does it well.

I won't know, hopefully for years, whether it was all worth it, but I'm certainly not complaining.

Edited by member 20 Mar 2019 at 09:38 | Reason: typo.

User

Posted 21 Mar 2019 at 11:24

Hi BTBear,

I am a bit ahead of you on the treatment front. I was diagnosed last Jan and started the Prostap almost straight away. G9 and locally advanced.

Then came the HD Brachy and 23 sessions of the RT finishing in August. I admit I was very lucky with the physical effects of the HT , the Brachy and the RT. Not so good on the mental front , but that's another story. Hopefully finish the HT in October then its squeaky bum time....

I had let my gym , and my fitness slip in recent years so this was the kick-up the bum i needed. I joined a gym and actually started using our exercise bike . I have lost nearly a stone in weight and have ended up having to buy new clothes. Which was also good as i had started to dress to my body and not how i wanted to look. So i have changed the wardrobe and i am well pleased with how i look now ( and the wife is too which is a bonus ).

I use weights and push as hard as i can ( its the only way my brain works i'm afraid). I find it really helps mentally too. I did suffer an injury recently but it turns out its just arthritus so i have to live with that. I also found that when i had a bout of 'man' flu it took me a long while to get strength back but you just have to ignore that.

I am also doing a Tough Mudder in May for Prostate Cancer with a little help from my family.....they may have to carry me

You will find many on here who either carried on their fitness regime from before or have started back like myself, and all of them state the good feeling it gives you to be fighting back in some small way. We may not be what we could have been before the PCa , but we can still be the best we can.

Good luck and remember it is a battle worth fighting.

Phil

User

Posted 21 Mar 2019 at 12:18

Chris's reply is interesting as I think he says basically that you cant waste your time worrying about the future. You end up ruining what may be years of near normality just because you worried about the future all the time.

In reality its not quite that simple but that is the message Chris is imparting. Enjoy what you have while you can.

I really try to do that and still basically live like i don't have cancer (which i'm not supposed to have now if everything worked). I'm still on the HT which is a 'killer' as Chris also implies. But i have worked through the physical symptoms and i have found the 5mg of Ciallis is good enough for me ...for the time being anyway.

I still have the mental issues to deal with but that is partly caused by the HT making me go back over some childhood traumas, so slightly unusual there. Distraction is a good 'treatment' so keep yourself busy.

Good luck,

Phil

User

Posted 11 Jun 2019 at 23:59

I have found it interesting reading the difference in peoples experiences with the different HT treatments.

I have been on Triptorelin (Decapeptyl) for 14 months and the worst thing about it is the hot flushes, a bit of weight gain on breast and hips, but fighting that might not be my finest hour! I have not read much about people on the same HT as me, but Prostrap seem to be full of more side effect, but of course we are all different.

I got Pca whilst I was a UK seniors cycling award winner, cycling well over 200 miles a week over challenging terrain.

I have had to adjust my training to accept the effects of HT on my muscles and energy levels and mental apathy, due to the fact i'm "ill". But i know 100% keeping fit and active since diagnosis has helped me through the bad and badder times.

Everyone from Onco's to specialist nurses agree, exercise is the best therapy

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User

Posted 20 Mar 2019 at 09:37

I did make an effort to keep active throughout, indeed after a lifetime of saying 'You'll not catch me exercising', I now have a regular (not particularly gruelling) routine. And I watch my weight.

I won't know, hopefully for years, whether it was all worth it, but I'm certainly not complaining.

Edited by member 20 Mar 2019 at 09:38 | Reason: typo.

User

Posted 21 Mar 2019 at 08:31

Thanks for that Andrew. I appreciate your thoughts.

Maybe some others don't understand my feelings and that's fair enough.

Looks like I'm heading to kill myself ( in the context of Andrew's reply that is.....). I see the HT's job as killing cancer cells. The other consequences are unwanted side effects that I would choose to do without if I could. And as I can't, and the nhs seem to not want to help with countermeasures, then I'll just have to get on with it myself.

User

Posted 21 Mar 2019 at 08:49

Please don't feel "humiliated" by the physical effects of HT - there's no reason to be ashamed of the fact that you've got cancer, and the effects you're experiencing show that the HT is working exactly as it's supposed to. It would be something to worry about if you weren't seeing these effects!

There's nothing the NHS (or anyone else) can do to mitigate the effects of HT. They represent your body's biochemical response to the hormones and are outside anyone's control.

Very best of luck for your RT. I'm almost at the end of mine now (5 sessions remaining) and it's been reasonably OK.

All the best,

Chris

User

Posted 21 Mar 2019 at 11:24

Hi BTBear,

I am a bit ahead of you on the treatment front. I was diagnosed last Jan and started the Prostap almost straight away. G9 and locally advanced.

I am also doing a Tough Mudder in May for Prostate Cancer with a little help from my family.....they may have to carry me

Good luck and remember it is a battle worth fighting.

Phil

User

Posted 21 Mar 2019 at 11:30

Thanks Chris

I appreciate the sentiment and I do see where you're all coming from, but as a fit sexually active middle aged man, I do find personally, the lack of ability in many areas shameful and embarrassing.

It doesn't matter to me what the cause is, the end result is I can't function in the manner a human of my age is meant to. And it fills me with dread to think of what might not function when all this crap is done with.

User

Posted 21 Mar 2019 at 11:36

Thanks Phil

It's good to hear from someone who "pushes as hard as they can" and that your able to compete so soon following RT. You sound like you were in a similar position to me a while back. Your example is encouraging.

Thanks again

User

Posted 21 Mar 2019 at 11:38

Hi btbear, if you’ve read my journey the only thing really left for me is chemo and HT. I’m 52 in June and although had surgery have resisted all other treatment till now , having been told I’m incurable. My psa is in excess of 100 now. I’ve enjoyed probably 2 yrs of full recovery both continence and ED. You never get over it mentally. We’ve done loads of travel and living and loving. Reading posts like yours fill me to the core with dread , as essentially I’m like you and have been from the beginning. I’m not in denial , but don’t see the point of a sexless existence , weight gain , joint pain , weakness etc. I’m not the sort of guy either who could live with that. I simply don’t know what choice to make after scans in May.

User

Posted 21 Mar 2019 at 12:18

In reality its not quite that simple but that is the message Chris is imparting. Enjoy what you have while you can.

Good luck,

Phil

User

Posted 11 Jun 2019 at 23:59

I have found it interesting reading the difference in peoples experiences with the different HT treatments.

I got Pca whilst I was a UK seniors cycling award winner, cycling well over 200 miles a week over challenging terrain.

Everyone from Onco's to specialist nurses agree, exercise is the best therapy

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