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User
Posted 03 Jan 2023 at 19:21

Hi all,

I start Prostap injections next week, I can’t say I have quite come to terms with the label chemical castration 😱😱. I recognise that impacts, side effects etc are different person to person. However I would welcome hearing your experiences it will help me prepare mentally.

Kind regards

N

User
Posted 04 Jan 2023 at 13:10

I had my 3rd Prostap Injection this morning.

My worst side effect was anxiety which kicked in very quickly and was so debilitating. A Low dose of sertraline sorted that although it did take about 6 weeks to take effect, but it’s made a huge difference. I still have the odd day (like yesterday) when I feel a bit down but that only lasts for a day. Most of the rest of the time I am positive and happy with life!

other thing was hot flushes….initially they were mild but after about a month, they were coming on spontaneously every 30-40 mins during the day. Not so bad during the night but needed new pillow slips and jammies every night.

I started taking Sage Leaf about 4 months ago and they maybe helped a little but not enough to make me feel better about QOL. However, yesterday I had my 4th acupuncture session and today I am ‘bouncing’ with energy and my hot flushes are MUCH less frequent and severe. Yesterday when I felt low, they were very bad…not sure which causes which.  I have another 2 acupuncture sessions to go so will keep posting on here about my progress.

As for Libido, indeed zero very quickly. I can still get erections although they don’t last.  Viagra sorted that but having zero Libido means that it’s not much good to me anyway…or my wife! I read somewhere ( I think somewhere on this site) that having Sexual Outercourse, rather than Intercourse is worth trying…and certainly it works for my wife and me. Kisses, cuddling, affection and touching is very enjoyable and pleasurable for us both.

Goodness me, a few months ago I never thought I would be able to talk about my sex life on a forum likes this🤣🤣🤣, but this place has been so helpful to me I am willing to share my intimate experiences😊with others in the hope it might help. And since I joined my local Maggies Mens Cancer Support Group I have finally come to terms with this disease and happy to discuss and share anything to do with it.

All the best and try and stay active and positive as much as possible.

User
Posted 04 Jan 2023 at 18:28

Hi jellies, thanks for the post

i do freak out a bit about chemical castration label but I guess it looks like it is working for you

I mentioned this to my OH and suggested she takes it on as a challenge 🤣

I am trying to retain a SOH but it ain’t easy!

 

User
Posted 04 Jan 2023 at 19:35

Nigel,

I certainly don’t feel liberated, just sad😟 However I thought I would be frustrated, but no, because I don’t have any libido….would be just as happy going out for a coffee, never thought I would hear myself saying that! I do think though that showing affection is still very important.

interesting that you are T3B/A….they couldn’t make up their min whether I was T3 or T3B..at first I was told it’s was T3 but at the MDT meeting I was then changed to T3B. I was quite shocked and disappointed as well as fuming that I would have to pay even more for travel insurance.

im guessing that surgery has been ruled out for you? Too much risk of leaving something behind to clear up like me?

HDR Brachytherapy also ruled out for me as an extra because of too poor flow rate…although only just.

I’ve had the gold seed implants and my Planning CT Scan, now just want to get on with it.

don’t worry about your spelling, Decho was my nickname when I was a boy!

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User
Posted 03 Jan 2023 at 23:33

Hi N, my OH has just had his second prostap injection which he’s currently having every month for 4 months prior to starting radiotherapy in March.  He didn’t feel too bad after the first one but had his second last week and has started to suffer with hot flushes throughout the night and feels very tired around late afternoon but seems to bounce back again.  The last couple of nights he’s also been complaining of being very thirsty but not sure if that’s related to prostap or not.  The only other thing is aching joints, my OH has problems with his knees but has found them to ache a lot more since being on the injections.  

User
Posted 04 Jan 2023 at 09:45

Hi N 

I just had my second injection of Decapeptly yesterday (I think it is similar to prostap).

For the first month I didn't notice anything.  But then it kicked in and the main effects I noticed were disrupted sleep, low libido and hot sweats (which I find are manageable).

I was amazed at how quick my libido went from hero to zero and genuinely no idea how myself and my perfectly healthy wife get through 3 years of this.

But my PSA did drop to undetectable (<0.03) so it's working on that front.  Last year I started weights based work outs with a trainer and I find that is helping.  Despite all that I'm enjoying life and my mental state is pretty good most of the time.  I'm also doing chemo at the moment but the side effects above are from the HT.

Hope that helps and good luck with your treatment.

User
Posted 04 Jan 2023 at 12:48

The first injection takes about 2 weeks before it even starts working, and another week to bring Testosterone down to very low levels, so you probably won't see anything until then, but even so, it takes a while for the effects to show.

One thing I would say is you need to regard exercise as mandatory while on hormone therapy - it reduces many of the side effects. You need resistance exercise to maintain muscle, and some stress on bones to help maintain bone strength. You may find there is some supervised exercise classes for cancer patients near you, and there are a number on Zoom. Exercise also appears to make cancer treatments work better.

User
Posted 04 Jan 2023 at 13:10

I had my 3rd Prostap Injection this morning.

My worst side effect was anxiety which kicked in very quickly and was so debilitating. A Low dose of sertraline sorted that although it did take about 6 weeks to take effect, but it’s made a huge difference. I still have the odd day (like yesterday) when I feel a bit down but that only lasts for a day. Most of the rest of the time I am positive and happy with life!

other thing was hot flushes….initially they were mild but after about a month, they were coming on spontaneously every 30-40 mins during the day. Not so bad during the night but needed new pillow slips and jammies every night.

I started taking Sage Leaf about 4 months ago and they maybe helped a little but not enough to make me feel better about QOL. However, yesterday I had my 4th acupuncture session and today I am ‘bouncing’ with energy and my hot flushes are MUCH less frequent and severe. Yesterday when I felt low, they were very bad…not sure which causes which.  I have another 2 acupuncture sessions to go so will keep posting on here about my progress.

As for Libido, indeed zero very quickly. I can still get erections although they don’t last.  Viagra sorted that but having zero Libido means that it’s not much good to me anyway…or my wife! I read somewhere ( I think somewhere on this site) that having Sexual Outercourse, rather than Intercourse is worth trying…and certainly it works for my wife and me. Kisses, cuddling, affection and touching is very enjoyable and pleasurable for us both.

Goodness me, a few months ago I never thought I would be able to talk about my sex life on a forum likes this🤣🤣🤣, but this place has been so helpful to me I am willing to share my intimate experiences😊with others in the hope it might help. And since I joined my local Maggies Mens Cancer Support Group I have finally come to terms with this disease and happy to discuss and share anything to do with it.

All the best and try and stay active and positive as much as possible.

User
Posted 04 Jan 2023 at 13:22

All, thank you so much for sharing

i will reply in more detail later when I can break free from work 

N

User
Posted 04 Jan 2023 at 18:24

thanks Nicola

my plan is for 3 months prior to RT. I have no idea how they figure this timings out but your OH and I may bump into each other in Preston 😀

User
Posted 04 Jan 2023 at 18:28

Hi jellies, thanks for the post

i do freak out a bit about chemical castration label but I guess it looks like it is working for you

I mentioned this to my OH and suggested she takes it on as a challenge 🤣

I am trying to retain a SOH but it ain’t easy!

 

User
Posted 04 Jan 2023 at 18:35

Hi Decko, thanks for the post and snotty you are suffering. can I ask if you had RT also?

I have read about acupuncture on this forum and I have to be honest I am a little cynical. However whatever work !!

it seems it takes something like this horrible disease for to men to talk 

Great advice on the strength issue  I am looking at getting back into the habit

N

 

User
Posted 04 Jan 2023 at 18:46

Hi Nigel,

I start my RT on 16th January….just can’t wait to get started, 37 sessions treating the prostate and lymph nodes(I’m T3BN0M0). I know it’s not going to be easy but I’m as best prepared for it as I can be.

I am shortly going to post a new thread about my journey through all this and what’s coming. I’ve found other members stories useful for me and I think posting my own story might help me as well as others…it’s good to talk😊

Derek

User
Posted 04 Jan 2023 at 18:52

Interesting Decko, I am T3b/aN1M0 so looks like it could be 37 for me too jeez Louise!! 60 miles each way! 
I intend to record mine too as I think we owe it to others based on how helpful this forum has been for so many in the past

N

User
Posted 04 Jan 2023 at 19:13

Decko….many apologies for mis spelling

User
Posted 04 Jan 2023 at 19:15

Yeah.  When I finish the chemo I'll try to get my head back in the game.  I also have ED from prior prostatectomy to have to use Caverject injections.  This was going pretty well until the HT kicked in.   It is hard to describe, before HT if I wasn't thinking about sex it was probably second or third on the list.  Now I get on with my day and it just doesn't enter my head.  But I'm sure you and your OH will give it a run for it's money 💪

User
Posted 04 Jan 2023 at 19:26

Jellies

i read somewhere that a man lost his libido and felt liberated as he no longer was focussed on sex. It freed his mind to appreciate other things.

Can’t see it myself to be honest but who knows?

User
Posted 04 Jan 2023 at 19:35

Nigel,

I certainly don’t feel liberated, just sad😟 However I thought I would be frustrated, but no, because I don’t have any libido….would be just as happy going out for a coffee, never thought I would hear myself saying that! I do think though that showing affection is still very important.

interesting that you are T3B/A….they couldn’t make up their min whether I was T3 or T3B..at first I was told it’s was T3 but at the MDT meeting I was then changed to T3B. I was quite shocked and disappointed as well as fuming that I would have to pay even more for travel insurance.

im guessing that surgery has been ruled out for you? Too much risk of leaving something behind to clear up like me?

HDR Brachytherapy also ruled out for me as an extra because of too poor flow rate…although only just.

I’ve had the gold seed implants and my Planning CT Scan, now just want to get on with it.

don’t worry about your spelling, Decho was my nickname when I was a boy!

User
Posted 04 Jan 2023 at 19:48

Decho,

yes sad I understand, I am being a little flippant as a way of preparing myself for what seems inevitable.

As far as the diagnosis goes it is annoying as I have been told T3 aN1  and T3 b/a N1 , the latter being post PSMA scan and MDT meeting, the main point being the bugger has escaped into lymph nodes and therefore, I was told,  surgery not an option. Brachytherapy has not been mentioned and I am impatiently waiting to talk to oncology.

N

User
Posted 05 Jan 2023 at 14:15

Can I ask please, why exactly would HDR brachytherapy be ruled out "because of a poor flow rate" ?  - meaning (I assume) a pre-existing slow rate of flow during urination, or maybe an intermittent flow. 

User
Posted 05 Jan 2023 at 16:56
Having recently just had LDR Brachytherapy and I’m just guessing here, it may be denied because if you have an already poor flow rate if the radiotherapy causes the prostate to swell it may put pressure on your uretha and cause bladder emptying problems.

I recall that on one visit to the specialist nurse I had to answer some flow questions. Today I have found out it was the International Prostate Symptom Score ( IPSS )

The questionnaire consists of seven self assessment questions about your last month which you mark 0-5 i.e

Incomplete emptying

Frequency

Intermittency

Urgency

Weak stream

Straining

Nocturia

If your total score is 0-7 it’s mildly symptomatic 8-19 moderately symptomatic and 20-25 severely symptomatic.

I do not know what the go/no go criteria is for brachytherapy.

I was not aware the importance of these answers at the time and how they were going to shape my future!😳

Rgds

Dave

User
Posted 05 Jan 2023 at 18:30

Originally Posted by: Online Community Member
Having recently just had LDR Brachytherapy and I’m just guessing here, it may be denied because if you have an already poor flow rate if the radiotherapy causes the prostate to swell it may put pressure on your uretha and cause bladder emptying problems.
I recall that on one visit to the specialist nurse I had to answer some flow questions. Today I have found out it was the International Prostate Symptom Score ( IPSS )
The questionnaire consists of seven self assessment questions about your last month which you mark 0-5 i.e

Incomplete emptying
Frequency
Intermittency
Urgency
Weak stream
Straining
Nocturia

If your total score is 0-7 it’s mildly symptomatic 8-19 moderately symptomatic and 20-25 severely symptomatic.
Seriously funny acronym 🤣🤣
I do not know what the go/no go criteria is for brachytherapy.

I was not aware the importance of these answers at the time and how they were going to shape my future!😳

Rgds
Dave

User
Posted 05 Jan 2023 at 18:31

Sorry I couldn’t quite get the hang of the quote tool

User
Posted 05 Jan 2023 at 19:26
44Nigel😀
User
Posted 06 Jan 2023 at 21:00

Hmm so based on what I have read here and waiting for oncology meeting I have formed the opinion that due to my N1 diagnosis I will have 37 fractions…….This creates a problem as there is no way that moving the RT treatment to near home town is doable as it is a 120 mile round trip.

I have been told that they can deliver this in Basingstoke which was news to me and would change the travel time from work flat to 40 miles round trip …….

does anyone know if Basingstoke can do the RT?

it also means a very lonely time for this for me 😢but much more practical.

 

User
Posted 06 Jan 2023 at 22:02
Nigel, you don't know at this point whether you will be having 20 fractions, 37 fractions or something else entirely. Just because some oncos in some parts of the country do it a particular way, doesn't mean that other oncos agree. My husband had salvage RT to include pelvic nodes and the bottom of his bladder but had 20 fractions. You might be encouraged towards brachy combined with EBRT, which is popular in some parts of the country for high risk PCa.

Basingstoke has some of the most up to date RT equipment available in this country.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jan 2023 at 22:06

Originally Posted by: Online Community Member
I have read about acupuncture on this forum and I have to be honest I am a little cynical.

 

In our area, acupuncture was (until Covid) provided on the NHS for men struggling with HT induced flushes; the appointments were done in the hospital uro-oncology department. I think the NHS wouldn't waste money on alternative therapies if they didn't produce results. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jan 2023 at 22:12

Lyn 

thank you you are awesome 

I can’t help diagnosing myself  it is inbuilt need to solve problems 

great news re Basingstoke …..

I guess I need to be more patient  hahaha  fat chance

 

User
Posted 06 Jan 2023 at 22:18

Again thank you Lyn 

it is a little disturbing that geography influences treatment 

but  I  guess decisions are down to us

 

 

 

 

User
Posted 14 Jan 2023 at 14:50

Hello , I’ve just completed 3 years of ht. My experience is that the injection isn’t as bad as you expect and there is no real pain afterwards.

The downside is the side effects which vary from person to person. Mine have been hot flushes which you learn to live with but in my case I now sleep occasionally in the spare room as I was forever throwing the bedclothes back.

Sex had deteriorated before the start of ht and the treatment ended it fully.

I have put about a stone in weight on my stomach and have grown busts. My waist has increased by 3- 4inches.

My muscle strength has reduced and I feel more tired- but I’m sure there’s an element of growing older( now 76) , less exercise and doing less cos of Covid.

This may sound all bad but it’s not and it’s joyful to be told every 6 months that your PSA  is say 0.03 and “ the cancer is suppressed “

If asked for advice, I’d say learn to live with the side effects, try to keep doing exercise ( walking can be very therapeutic), live for today and enjoy the little things in life eg going for a coffee, getting pleasure in a bit of gardening and be grateful that the treatment is giving you an extended life.

Philip of Huddersfield 👍👋

 
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