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User
Posted 27 Mar 2022 at 20:22

Moved to Kent and have now got a  new consultant and the most wonderful urology clinical nurse 😍. Started the ht on Fri 25th on Bicalutamide 50mg for 28 days. Just wondering when/if side effects may start?

 

 

 

User
Posted 27 Mar 2022 at 20:22

Moved to Kent and have now got a  new consultant and the most wonderful urology clinical nurse 😍. Started the ht on Fri 25th on Bicalutamide 50mg for 28 days. Just wondering when/if side effects may start?

 

 

 

User
Posted 28 Mar 2022 at 01:26

I presume you will be injected around day 14. Loss of libido will be pretty rapid. Can't believe you will have much interest in sex after a month. you may no get any other side effects mine were not too bad I would say the timescales were about, hot flushes, emotions a bit out of kilter within three months. Mild muscle loss, increase in weight about six months. Things like bone density will not be troublesome as you will be off the HT before they become significant.

Think about doing exercise, and penile health now to give you the best chance of a full return to normal post treatment.

Dave

User
Posted 28 Mar 2022 at 07:45

Hi, slightly puzzled by your bio...MRI and biopsy "clear"? Does this mean they found no cancer cells at all?

So why start you on HT (I'm campaigning to change these rose tinted names... Chemical Castration is what it is)?

CC can be easy for some, ruinous for others...see my blog.

https://prostatecancer.vivatek.co.uk

 

 

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 28 Mar 2022 at 08:05

Hi, my second biopsy returned positive for cancer. Had choice  of treatment & chose ht/rt over surgery .So hence I am very interested in any advice and experiences you have to share.

 

User
Posted 28 Mar 2022 at 11:51

radiotherapy is tolerable hormone therapy hot flushes bone aches  mood swings  some tiredness  had 13 months hopefully finish end off year if results stay positive PSA 24.9 at beginning now 0.01 just over a year since last radiotherapy 👍

User
Posted 28 Mar 2022 at 12:40

Thank you  for your reply, my journey is beginning. All sounds positive. 

User
Posted 28 Mar 2022 at 13:50
AM, I found HT pretty tolerable. No side-effects that were too terrible. Fatigue was probably the most noticeable one.

Best of luck for your treatment,

Chris

User
Posted 29 Mar 2022 at 22:51
Of my 47 months the biggest lesson learned the hard way was just because other guys can do whatever doesn't mean you can. Just deal with any side effects the way that suits you best. RT HT survival wise served me very well.

Ray

User
Posted 09 Apr 2022 at 21:27

Hi, they'll take a while to get going. I'm guessing you're also on the bicalutamide pills for a few weeks too?

The only thing I've found is, that every man is different. Yes, there'll be some common side effects but we all suffer differently....I'm just starting on mirtazapine to help with my anxiety, depression and meltdowns but I've friends who've not had any of that. Some get fatigue...not me! There's a big list (thanks to Andrew Gabriel for that) on my blog.

Let us know how you get on...

 

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 10 Apr 2022 at 13:12

Hi, not sure where you got that from.

It will take anywhere from 6 to 12 months... regardless of duration...but all men are different.

Much older men may never get theirs back at all! 

 

Yes, the brochures are too rose tinted. I'm guessing they just don't want to panic people....that's why there's no consent form for HT....no man in his right mind would sign it!

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 13 Apr 2022 at 15:03
Hi AM - see my profile for all things RT & HT (I am now circa 6 months post RT)....but like many have said .... it will no doubt affect everyone differently....except for the Hot Flushes !! :). Good Luck on your Journey, any Qs please ask away.
User
Posted 13 Apr 2022 at 15:09

Originally Posted by: Online Community Member

Yes, the brochures are too rose tinted. I'm guessing they just don't want to panic people....that's why there's no consent form for HT....no man in his right mind would sign it!



Why do you say that? The reports of men on this forum show that for the vast majority of men, HT isn't too troublesome an experience.

Best wishes,

Chris

 

User
Posted 06 Jun 2022 at 17:01

Hi Abhishek, since my appointment with the oncologist I've learnt the cancer has spread to my ribs & spine! He prescribed one drug which was then cancelled due to funding being withdrawn so he has put me on Enzalutamide. Prior to starting the new drug my psa has dropped from 18.3 to 4.5, which is very encouraging. I've been on them ten days now without any serious side effects and I have just had my 3rd prostap injection today. He has also booked me a CT &MRI scan on 18th June. Hopefully what I am now on will keep it at bay for a long time. I will update when I have more news. 

 

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User
Posted 28 Mar 2022 at 01:26

I presume you will be injected around day 14. Loss of libido will be pretty rapid. Can't believe you will have much interest in sex after a month. you may no get any other side effects mine were not too bad I would say the timescales were about, hot flushes, emotions a bit out of kilter within three months. Mild muscle loss, increase in weight about six months. Things like bone density will not be troublesome as you will be off the HT before they become significant.

Think about doing exercise, and penile health now to give you the best chance of a full return to normal post treatment.

Dave

User
Posted 28 Mar 2022 at 07:45

Hi, slightly puzzled by your bio...MRI and biopsy "clear"? Does this mean they found no cancer cells at all?

So why start you on HT (I'm campaigning to change these rose tinted names... Chemical Castration is what it is)?

CC can be easy for some, ruinous for others...see my blog.

https://prostatecancer.vivatek.co.uk

 

 

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 28 Mar 2022 at 08:05

Hi, my second biopsy returned positive for cancer. Had choice  of treatment & chose ht/rt over surgery .So hence I am very interested in any advice and experiences you have to share.

 

User
Posted 28 Mar 2022 at 11:51

radiotherapy is tolerable hormone therapy hot flushes bone aches  mood swings  some tiredness  had 13 months hopefully finish end off year if results stay positive PSA 24.9 at beginning now 0.01 just over a year since last radiotherapy 👍

User
Posted 28 Mar 2022 at 12:40

Thank you  for your reply, my journey is beginning. All sounds positive. 

User
Posted 28 Mar 2022 at 13:50
AM, I found HT pretty tolerable. No side-effects that were too terrible. Fatigue was probably the most noticeable one.

Best of luck for your treatment,

Chris

User
Posted 28 Mar 2022 at 14:15

Ok. That makes sense. Have a read of the blog...more of an personal wikipedia now!

And happy to chat 1 to 1

 

 

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 28 Mar 2022 at 14:38

Yes you never know what's around the corner with this desease but as well as it can be at the moment 🤔

User
Posted 29 Mar 2022 at 21:19

Thank you Chris for your support and information 

Colin 

User
Posted 29 Mar 2022 at 22:51
Of my 47 months the biggest lesson learned the hard way was just because other guys can do whatever doesn't mean you can. Just deal with any side effects the way that suits you best. RT HT survival wise served me very well.

Ray

User
Posted 09 Apr 2022 at 08:47

Had my 1st prostap injection yesterday, whole body scan on the 5th but still waiting for results. Will monitor any side effects and deal with them best as I can.

 

User
Posted 09 Apr 2022 at 21:27

Hi, they'll take a while to get going. I'm guessing you're also on the bicalutamide pills for a few weeks too?

The only thing I've found is, that every man is different. Yes, there'll be some common side effects but we all suffer differently....I'm just starting on mirtazapine to help with my anxiety, depression and meltdowns but I've friends who've not had any of that. Some get fatigue...not me! There's a big list (thanks to Andrew Gabriel for that) on my blog.

Let us know how you get on...

 

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 09 Apr 2022 at 21:36

Will keep you posted, cheers. 

User
Posted 10 Apr 2022 at 07:50

Esteban, I am with you - need to start calling this by what it really is and also need to update a few items in the literature.  According to the leaflet we got it will take about 30 days to wear off, reading on this forum if a man was on the CC for 3 years it seems to take 3 years to wear off not 30 days.

User
Posted 10 Apr 2022 at 13:12

Hi, not sure where you got that from.

It will take anywhere from 6 to 12 months... regardless of duration...but all men are different.

Much older men may never get theirs back at all! 

 

Yes, the brochures are too rose tinted. I'm guessing they just don't want to panic people....that's why there's no consent form for HT....no man in his right mind would sign it!

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 13 Apr 2022 at 15:03
Hi AM - see my profile for all things RT & HT (I am now circa 6 months post RT)....but like many have said .... it will no doubt affect everyone differently....except for the Hot Flushes !! :). Good Luck on your Journey, any Qs please ask away.
User
Posted 13 Apr 2022 at 15:09

Originally Posted by: Online Community Member

Yes, the brochures are too rose tinted. I'm guessing they just don't want to panic people....that's why there's no consent form for HT....no man in his right mind would sign it!



Why do you say that? The reports of men on this forum show that for the vast majority of men, HT isn't too troublesome an experience.

Best wishes,

Chris

 

User
Posted 13 Apr 2022 at 15:14

Well, I guess you're right. The majority seem ok, or won't admit to anything.

My experience has been truly awful and I have found one or two others who have experienced bad emotional and mental problems...so I'm not alone but probably in a minority.

I'm on mirtazapine now and in the next 15 minutes about to start a course of counselling..... hopefully see me thru the next Prostap injection....or not!

 

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 13 Apr 2022 at 15:22

Hi Nick,since I last posted I've just  been told I have metastatic prostate cancer. It has spread to my bones & some lymph nodes but is confined to the pelvic area. My whole body scan thankfully revealed all other areas clear! Apparently it is treatable but not curable so l will be on h/t, r/t for life along withother treatments. I have an appointment with the oncologist on the 3rd May to discuss & get more info.I will post with any more info later,anybody out there with the same as me I would welcome any info or comments. Thank you.

User
Posted 06 Jun 2022 at 15:05
So, You have metastatic prostate cancer, confined to the pelvis, which is quite amenable to the treatment and you can live a long healthy life. The most appropriate treatment in the present scenario will be hormonal therapy and radiotherapy to the metastatic skeletal sites, if they are painful.  However, if bone Mets are asymptomatic then hormonal therapy may be sufficient for you. Later treatment can be tailored according to your needs.  
User
Posted 06 Jun 2022 at 17:01

Hi Abhishek, since my appointment with the oncologist I've learnt the cancer has spread to my ribs & spine! He prescribed one drug which was then cancelled due to funding being withdrawn so he has put me on Enzalutamide. Prior to starting the new drug my psa has dropped from 18.3 to 4.5, which is very encouraging. I've been on them ten days now without any serious side effects and I have just had my 3rd prostap injection today. He has also booked me a CT &MRI scan on 18th June. Hopefully what I am now on will keep it at bay for a long time. I will update when I have more news. 

 

 
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