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After Hormone Therapy

User
Posted 07 Nov 2018 at 20:34

Over the past 4 to 5 years I have had an Open Radical Prostatectomy, Salvage Radiotherapy and Hormone Therapy which I am still on.

I started HT a few months before my SRT started which is fairly usual.

Initially the plan was to keep me on HT for 6 months and end it just after the end of SRT.

However at the end of RT the Oncologist said he would keep me on HT for a further 18 months which might improve my chances of a “cure”.

I asked him what would happen after the end of RT if I had another recurrence and at what stage further treatment would resume.

He said that if PSA went to 5.0 ( I am currently <0.02), then some form of treatment would commence.

I didn’t question him further at the time but I have thought about it since.

I am concerned that the cancer would have been allowed, by inaction, to have spread too far by the time I hit a PSA of 5 and that I could be in trouble by then.

I am probably looking a little far ahead but I know that I will be scared when they stop HT.

Has anyone been down a similar route ?

If so, what was the outcome ?

Would appreciate any advice.

 

 

Edited by member 03 Jan 2019 at 05:15  | Reason: Not specified

User
Posted 28 Jan 2019 at 17:20

Had my last Prostap injection today.

It’s good for 12 weeks.

After that I will be in uncharted territory.

 

User
Posted 22 Apr 2019 at 20:40

Ido4, Please keep me updated on your progress and I will certainly reciprocate on this thread.

I must say that I felt a certain sense of security whilst on Prostap which is now gone. 

Let’s see what the future holds.👍

User
Posted 28 Mar 2020 at 09:02

That’s great Pete. Hope the oncology telephone appointment on Wednesday goes well. I can’t see why not with a PSA if 0.02 . 
How are you feeling in yourself, do you feel the HT has left the system now ?

Phil

User
Posted 22 Jul 2021 at 23:27
Sorry to see this Phil but a plan is always a good thing to have. Make sure you use antibacterial gel before you start holding hands with anyone - you don't know where they have been.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Nov 2018 at 20:34

Over the past 4 to 5 years I have had an Open Radical Prostatectomy, Salvage Radiotherapy and Hormone Therapy which I am still on.

I started HT a few months before my SRT started which is fairly usual.

Initially the plan was to keep me on HT for 6 months and end it just after the end of SRT.

However at the end of RT the Oncologist said he would keep me on HT for a further 18 months which might improve my chances of a “cure”.

I asked him what would happen after the end of RT if I had another recurrence and at what stage further treatment would resume.

He said that if PSA went to 5.0 ( I am currently <0.02), then some form of treatment would commence.

I didn’t question him further at the time but I have thought about it since.

I am concerned that the cancer would have been allowed, by inaction, to have spread too far by the time I hit a PSA of 5 and that I could be in trouble by then.

I am probably looking a little far ahead but I know that I will be scared when they stop HT.

Has anyone been down a similar route ?

If so, what was the outcome ?

Would appreciate any advice.

 

 

Edited by member 03 Jan 2019 at 05:15  | Reason: Not specified

User
Posted 07 Nov 2018 at 22:23

The point is that if you ever get to that stage, you will be incurable and will go back onto HT permanently (unless it stabilised dramatically and you can have the occasional hormone holiday) and all hormone treatments have a limited life span so they don't rush to start you back on them. Your onco says they would wait until 5.0 ... Some hospitals/ CCGs will wait until it is 10 or 20.

As you say, you are thinking about something that may never happen.

Edited by member 07 Nov 2018 at 22:24  | Reason: Not specified

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

User
Posted 20 Dec 2018 at 10:09
pete,i had my last zoladex injection 4th april 2016 for t3b no mo,just had my 6monthly check up it is still 0.03,so not to bad.
User
Posted 23 Apr 2019 at 21:31
Some side effects can be permanent - loss of penis length / girth, moobs (you may be entitled to breast reduction surgery on the NHS if they are large and distressing), hot flushes. Some are temporary - breathlessness, weight gain, muscle loss, tendon / ligament problems, etc. Testicles do tend to regain their original size and weight if your testosterone levels rise back to pre-treatment levels. Unfortunately, for some men the testosterone never gets back to normal.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Jun 2019 at 16:32

Great that your PSA has stayed low. I’m waiting on side effects abating too.

Ido4

User
Posted 28 Sep 2019 at 21:21
Saw my Oncologist this morning who was very upbeat about my latest PSA being <0.02.

He also informed me that my testosterone reading was measured at 3.7 compared to only 0.2 three months previously.

I told him I kinda guessed that was the case because of leg hair growing back.

He was also pleased to hear that all leg and back pain has disappeared since finishing the hormone treatment.

He was very optimistic about my prospects going forward and said that if he had to put a number on it he was about 90% confident that I will not have a further recurrence.

I certainly hope he’s right but let’s wait and see.

Next appointment in March 2020 so all this stuff will now get parked at the back of my mind.

After more than 5 years of this I have learned to live with it and no longer fret about it too much.

I’m off to Dubai in 2 weeks for a few weeks of sun, sea and sand so this Pca stuff is definitely going on the back burner.

User
Posted 28 Sep 2019 at 22:35
That’s excellent news, Pete. Enjoy your holiday!

Best wishes,

Chris

User
Posted 29 Sep 2019 at 15:02

Great news. Enjoy the holiday.

Ido4

User
Posted 29 Sep 2019 at 16:05
Great news !! I don’t fret about it too much either over 4 1/2 yrs on , but tests and scans next month again. It’s like living my life in 6 month slots lol.

Have a well deserved holiday !

If life gives you lemons , then make lemonade

User
Posted 21 Oct 2019 at 18:00

Hi Phil

Thanks for posting.

I am currently in Dubai soaking up the sun and sea, but still finding time to check out the PCUK forum.

You’re absolutely right about not coming out the other side the same as you went in.

I think this applies to all the radical cancer treatments and whilst I am not aware of any adverse mental issues, I have experienced pretty life changing physical issues. I am nowhere near the guy I was before this whole thing kicked off going on 6 years ago.

However thanks to the doctors and nurses of the NHS I am still very much alive and hope to stay that way for a long time yet.

 

 

User
Posted 21 Oct 2019 at 18:12
Best wishes Goalhanger with a very speedy improval post HT treatment. Mental Illness has affected me all my life really through childhood issues , so the thought of starting HT absolutely terrifies me. In fact any further change at all terrifies me if I’m honest. I’m not good with change. Will find out in one month after scans. Take care !

If life gives you lemons , then make lemonade

User
Posted 22 Oct 2019 at 10:43

You’ll be glad you are off the HT wagon. You are absolutely right no one comes out the other side of these radical treatments the same as they were. But I’m very grateful to still be here. I am still on fluoxetine which takes the edge off any anxiety (not completely, I still over react at times 😬). My mind is still not as good as it was pre HT but I have found in the last few weeks my sleep has improved significantly which is very welcome. There are times when I feel more energetic too but still have to pace myself.

Look forward to seeing your progress off HT. 

 

Ido4

User
Posted 22 Oct 2019 at 11:03

Oh Chris, so sorry how could I forget your Bi-Polar. 

I asked my counsellor if I’ll ever be normal, she said you weren’t normal before the HT and so the answer is no. She does say I am becoming more like the person I could have been had I not had my childhood issues. Not sure what that means but it sounds interesting 😳😳. I find the journey interesting, especially if I were just a bystander and not the subject ...

Apparently I have suppressed emotions from childhood and so I’m feeling very sensitive as for some reason the HT has caused me to be more emotional. I’m not used to these waves of emotion. I am going back through my childhood adding the emotions I didn’t really have at the time and it’s a journey I can tell you 😳😳.

So I’m hoping that I will come out in the end being more emotional than I was but not so sensitive as I am now. Does that make any sense.

Had to up the Mirtazapine to 45mg . I didn’t want to change anti-depressant so close to coming of the HT.

Also reduced the gap between counselling, which helps. I’m trying this new thingy where you flick your eyes one way. I think it’s for PTSD. We’re also gonna try Mindfulness next.....

The new ME 😆😆. I may be a monster or a pussy cat..........

Thanks for your input guys, much appreciated. None of us on the same road but running parallel to each other.

Shall I post updates on here or do I need to start a new thread ?

Phil.

 

 

User
Posted 22 Oct 2019 at 14:22
I would keep the updates all together on this thread; it helps everyone to check back to where you have been and where you are now.

I think it would be a rare man that is the same after as before - but then I guess that could be said of anyone diagnosed with a (potentially) life limiting disease.

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

User
Posted 28 Mar 2020 at 01:16

Had my 6 month PSA check on Wednesday.

Still good at < 0.02

So still in remission 5.5 years after RP, 2 years after the end of RT and 1 year after the end of HT.

I can now park PCA at the back of my mind for another 6 months unless the Corona Virus gets me first.

They were very strict at the GP surgery on Wednesday. The reception and waiting room were closed and I entered furtively by the back door where I was met by people in masks who thrust hand sanitiser at me and watched my every move.

Totally surreal.

My hospital Oncology appointment on Wednesday 1st April will now be a telephone appointment which is good because I don’t want to go anywhere near a hospital right now.

Take care everyone and stay safe.

Pete

 

 

 

 

 

User
Posted 28 Mar 2020 at 01:32
Great PSA result Pete
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Mar 2020 at 07:31

Great news Pete.

Ange

User
Posted 28 Mar 2020 at 11:28

That’s true, we are permanently changed both mentally and physically after the radical cancer treatments and all the agonising.

My T score was 0.2, 9 months ago and 3.7, 6 months ago.

So it is definitely on the move and it will be very interesting to see the latest score.

I must admit, every time I get a good PSA result it feels like a further 6 months reprieve.

The alternative  is a second biochemical recurrence which would put me on a much feared slippery slope.

 

Edited by member 28 Mar 2020 at 11:34  | Reason: Not specified

User
Posted 01 Apr 2020 at 13:22

Hi Guys

Had my telephone Oncology appointment this morning.

T Score was 8.7, up from 3.7, 6 months ago.

This is now about 1 year after the end of HT which I was on for around 18 months,

As previously mentioned PSA remains negligible.

Doc was happy and said that rising T Score with negligible PSA is a good sign although still early days.

I will certainly take that and wait a further 6 months for my next check up.

All good.

 

 

 

 

 

 

 

Edited by member 01 Apr 2020 at 13:23  | Reason: Not specified

User
Posted 01 Apr 2020 at 13:34

That’s great news ..👍

I see your T has taken a year to get back to 8.7 and was 0.2 at around the 3 month mark. So my 0.8 isn’t so bad at 3 months since HT was due to start diminishing.

Looking forward to my next PSA and T scores in 6 months. I do have a PSA only booked for 3 months but not sure if they’ll still do it due to restrictions , if any at the time.

Hope you can relax now all the signs are good. Keep safe.

Phil

User
Posted 10 Sep 2020 at 09:22

Best of luck Pete. Fingers crossed it’s something else and simple to fix.

Phil

User
Posted 10 Sep 2020 at 11:14

Good luck Pete. Hopefully the pains are not cancer linked.

The dread you describe is so recognisable to me and I’m sure many others.

Ido4

User
Posted 25 Sep 2020 at 16:01

That’s great Pete , long may it continue. I’m now 11 months after my last HT injection. Had my 6 monthly telephone consultation. PSA now 1.2 , up from 0.97. Consultant seems ok with that. Testosterone now up to 5.5, so a little way to go with that but a good improvement none the less.
Still seem to need antidepressants but I have at least reduced the dose.

Phil

User
Posted 25 Sep 2020 at 23:39

Great results Pete.  

User
Posted 29 Sep 2020 at 00:02
Castrate level is generally thought of as 20 ng/dL or 0.7 nmol/L - normal levels are 250 - 1000ng/dL or 8.7 - 35nmol/L - a man of 65 could be in the lower half of the range rather than the upper half without anyone being concerned.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Feb 2021 at 12:58

So latest update ....consultation over phone this morning with nurse, not consultant.

PSA now up to 2.75 , was 1.2 in September with a lowest of 0.08 .

Testosterone now 8.8 which she says is fine.

She wants to keep an eye on the PSA so another test in 3 months ... Hoping it stays at that. Must admit I’m a bit worried now.

I also had what I thought was a water infection 4 weeks ago but antibiotics didn’t work and a test showed nothing up. It got a bit better but I am left needing to pass water more frequently- sometimes less than an hour between. Started needed to get up once in the night whereas before i slept right through. Also when I do go it’s a more urgent need than normal. Nurse is putting me back on Tamsulosin to see if that helps. 
Also got to get back to Kegel exercises as I found I can’t stop my flow much now whereas during my RT (July ‘18) I could release a cup full and go back to the waiting room ok when RT was delayed.

Hope everyone else is doing ok ?

Phil

 

User
Posted 04 Feb 2021 at 20:35

Sorry your PSA has risen Phil. Have they discussed what will happen if PSA rises again over next 3 months?

 

Ido4

User
Posted 04 Feb 2021 at 21:17

Sorry to hear your latest news Phil - stay positive.

My next PSA update is in March - beginning to think about it now.

 

 

User
Posted 04 Feb 2021 at 22:20
Phil , all best wishes to you. Thank you for all your support. Hope things come good and just keep living between results ok. That’s the most important thing for sure !

If life gives you lemons , then make lemonade

User
Posted 05 Feb 2021 at 00:37
Goalhanger was it a dip test at the GP practice or a proper test sent off to the lab? That doubling time is remarkably short for a cancer recurrence so my instinct would be deep seated infection or inflammation; the other symptoms would also point that way.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Feb 2021 at 15:47

Hi Phil,  

I’m sorry to hear about your PSA rising.  I’m keeping my fingers crossed that it’s because of your recent water infection that this has happened and think it’s too much of a coincidence for it not to be the reason.  Hopefully the Tamsulosin will get you back on track.

I know it’s easy for me to say don’t worry, but I wanted to let you know I’m thinking about you.

Take care and keep thinking positively.

Ange x

User
Posted 23 Mar 2021 at 19:35

Pete 

That is fantastic news. Long may it continue.

Thanks Chris

 

User
Posted 24 Mar 2021 at 14:29

Brilliant news Pete. Fingers crossed it stays that low for a long long time.

I’ve got to wait till May to find out if my PSA has levelled off or still rising .... seems like forever....

In hospital on Friday to investigate possible bladder damage from RT. Hoping a bit of medication and it will ease off.

Phil

User
Posted 24 Mar 2021 at 17:11
Best of luck Phil
User
Posted 25 Mar 2021 at 09:33

Great news Pete.

Ido4

User
Posted 29 Mar 2021 at 23:28
I don’t mind where the thread sits - I just can’t get overly excited about such trifling issues.
User
Posted 30 Mar 2021 at 22:52

Sorry to hear you’re still experiencing bladder problems Phil.  I hope the Solifenacen works for you.  

I’ll be keeping my fingers crossed for a good outcome of the camera investigation and also for a low PSA result in May.

Take care,

Ange x

User
Posted 01 Apr 2021 at 20:15

Life has a habit of throwing these curveballs when we least expect them.  Keith and I just take each day as they come now and try not to think about what damage the chemo and RT may have caused long term, although to be honest it crosses our minds every now and then but we try to stay positive, just like you do.

Keeping everything crossed for you Phil and hope this is a short term problem.

Ange x

 

User
Posted 01 Apr 2021 at 23:21
Best of luck Phil. Sorry I’ve not been posting but wrapped up in my own travels with this disease at the moment ! I should be grateful for 6 yrs with G9 T4N1 , but at the same time there is never an easy day I guess

If life gives you lemons , then make lemonade

User
Posted 02 Apr 2021 at 00:30

Sorry to read about the bladder damage. David seems to have got off fairly lightly,he has dull aches in his left side. He’s had scans and X-rays, but no answers, so he lives with it. He’s been advise it’s not damage from the RT, but who knows. Sometimes it bothers him and he takes pain relief but mostly he manages without. Otherwise he’s doing ok, PSA was 0.3 after last test in February. 
David will be 71 this year, he’s fairly active, enjoys the garden we are still growing all our own veg, and living the

“ good life” in out rural valley. 

Hope the meds work for you. 
All you young G9 lads are very special. 
Take Care

Leila 

 

User
Posted 26 Apr 2021 at 13:50

Hi Phil, just read your update.  It’s good to hear the meds are helping/working.  A visit to see your son in Jersey sounds like the best ‘pick me up’ and just what you need at the moment I’m sure.  Here’s hoping you receive good news on your PSA result whilst you’re there.

Enjoy being with your family and all the best.

Angex

 

User
Posted 26 Apr 2021 at 14:19
All the best Phil. I’m looking forward to a road trip next month also. Take my mind off things

If life gives you lemons , then make lemonade

User
Posted 15 May 2021 at 20:25

Sorry to hear that Phil.

Going back on HT can’t be easy either mentally or physically.

I wish you well.

 

 

User
Posted 15 May 2021 at 21:06
Sorry to hear this Phil really am. Maybe if you have to , put your foot down given your age and ask for a different HT. I insisted on Decapeptyl after other members comments and input. He wasn’t happy ( maybe cost ) but agreed. Nowhere near as bad as I thought tbh. Yes they all castrate you and have the same end result , but they are all different drugs and hence varying side effects. Good luck mate

If life gives you lemons , then make lemonade

User
Posted 15 May 2021 at 21:35
You are strong Phil -we all are, faced with adversity. I had 2 yrs of councelling to get me through childhood issues and it helped me immensely. And you may need more if you can afford it. I think it’s worth it tbh. Just for someone to offload to really

If life gives you lemons , then make lemonade

User
Posted 16 May 2021 at 12:05

Really sorry to hear your result Phil, what a blow!  It’s difficult knowing what to say but I did say an expletive when I read your post late last night.   You’ve  already shown you have great strength with all you’ve been through.... I understand your panic regarding how going back on HT may affect your mental health again but you have obviously fought hard to be where you are and it sounds like you are so much stronger now, so keep fighting. I sincerely hope, if you do need HT again, that you won’t be affected in that way.

All best wishes for your consultation.

Ange x

User
Posted 16 May 2021 at 18:17

Phil, sorry to hear this. I'm almost exactly a year behind you, also high risk, similar treatment, and can't help thinking what if...

I would ask for a PSMA PET scan before you go back onto HT. It might just find something which is still treatable with SABR/Cyberknife.

User
Posted 17 May 2021 at 10:18
Oh Phil, that’s hard. David is due his PSA this week, as you know he’s G9 too. So far he’s been wobbling between 0.1 & 0.3. Like you he’s fearful of going back on the dreaded HT

It is something that is always in the back of our minds.

Take care Phil, let’s us know what avenue you take. Don’t think you are not strong, you lads are amazing, all of you.

Leila x

User
Posted 17 May 2021 at 13:11

Phil, what male pill are you referring to?

With a PSA of 4.4, there's a good chance a PSMA PET scan will find it. Even an older/cheaper Choline PET scan has a good chance. Depending what facilities your treatment centre has available, you might need to be referred to another treatment centre.

User
Posted 17 May 2021 at 13:16
Hi Phil, the male contraceptive pill is still many years in the future mainly for the reasons you identify - a contraceptive pill would need to block testosterone and many men would not be willing to live with the side effects of that. One trial is looking at a hormone that blocks the testosterone production but also provides synthetic testosterone to reduce side effects.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 May 2021 at 08:55

Phil,

I just looked up how the gel works. It's a progestin (synthetic progesterone) plus testosterone.

Progestin does the same as the GnRH hormone therapy drugs (Zoladex, Prostap, Decapeptyl, Degarelix), but not as well and it's cheaper. This will shut down the two hormones produced by the pituitary gland which are used to signal the testicles:

Luteinising Hormone (LH) is used to tell the testicles to produce testosterone.

Follicle Stimulating Hormone (FSH) is used to tell the testicles to produce sperm.

(I cover this in detail in my How Hormone Therapy Drugs Work lectures.)

This will stop sperm production, but will also stop testosterone with all the associated symptoms we know only too well here.

So adding Testosterone too will will replace that which isn't being produced by the testicles anymore.

To answer your question, no this wouldn't be any use for prostate cancer treatment, as the added testosterone will mean the prostate cells are activated as normal. I also wonder how well controlled the resulting testosterone levels are. I could imagine some men using it to excess as a form of testosterone replacement therapy to boost their testosterone.

User
Posted 11 Jun 2021 at 09:40

Quick update: Had my cystoscopy yesterday to check for bladder damage or tumour. All clear so that’s good. Maybe I had a bladder infection as the Solifenacin and Tamsulosin seems to have helped.
Whilst in there the doctor told me my bone scan from Tuesday was all clear which was a relief . He also said my PSA from Wednesday had gone up slightly to 4.9 from 4.4 in 6 weeks. So the rate of increase is reducing. 
So I presume now my MRI today will see if I have recurrence in the prostate bed or lymph nodes. I did have the local ones zapped with the RT .

So I have a face to face on 24th when I will find out the next course of action. I presume if they don’t see anything on the MRI we will wait for another PSA test .

Phil

User
Posted 11 Jun 2021 at 11:22
Sounds like you roughly in the same boat now as I was ! Constantly rising PSA but scans and exams constantly came back clear , until they didn’t , and then got quite ill. I guess you get forced into a corner like I did where you have to have HT. You can do it earlier again , or hang on and enjoy QOL like I did. No easy answer

If life gives you lemons , then make lemonade

User
Posted 11 Jun 2021 at 13:18

That’s great news the HT is treating you well, long may it continue . I may ask about the one you’re on if that’s my next option.

Phil

User
Posted 30 Jun 2021 at 18:24

Cheers Chris, just a waiting game now I suppose. But I am pleased it’s not showing up in bones. 
Phil

User
Posted 22 Jul 2021 at 13:07

Oh Phil,

That’s not what you wanted to hear.  This bl##dy disease does not take prisoners does it. I hope the change of HT keeps the depression at bay..  one of my dearest friends had quite severe bouts of depression, she sometimes talked to about how she was feeling. I’m so grateful I’ve never experienced it, you are one brave man. David’s PSA is due next week, it was due last week, but he postponed it to recover from his heart attack and stent fitting. Hang in there Phil, you G9 lads have a lot of living to do. 
David is 71, he “celebrated” his birthday in hospital waiting to see if he was suitable for a stent. 
He was tentatively asked by a young junior Dr. If he wanted to sign a DNR David’s reply was no, I’ve got too much living and things to do, but thank you.   I’ll let you know if and when I’ve had enough of life. 
The Dr. Poor lad was uncomfortable and David said to him, my life is good and worth a lot to me and my family. I’m far too well to give in. Age should be celebrated, enjoyed and respected. 

Let us know how it goes Phil, you’ve been a great support to us….

Take cars

Leila 

 

 

User
Posted 22 Jul 2021 at 13:22

I really hate how this disease can raise its ugly head again. Sorry to read this, hope you get a good response with Zoladex and like others have said “many more years and lots of adventures still to be had”.

 

Ido4

User
Posted 22 Jul 2021 at 14:33
Arghh Phil so sorry to hear this , especially as you hated the HT before. We’ll hold hands and do it together ok. Strangely seems a replica of my spread apart from all the bones etc. I also have lymph’s up in abdomen , between lungs and near a collar bone :-(

Take care fella.

If life gives you lemons , then make lemonade

User
Posted 22 Jul 2021 at 16:08

So sorry to hear this Phil.  We hope the Zoladex is kinder to you than the Prostap and that you have many more years of happy times to come.

Ange & Keith x

User
Posted 22 Jul 2021 at 17:12

Thank you Ange, let’s hope we all have time for some more happy memories to be made 👍

Chris, I conjured up this picture of us 2 skipping off , holding hands and shouting ‘F*** Off Cancer ‘ 🤣🤣

Phil

User
Posted 22 Jul 2021 at 18:32
Haha made me laugh. We all need a crutch occasionally ( to coin a phrase ). Contact me anytime brother and we can share the woes

If life gives you lemons , then make lemonade

User
Posted 23 Jul 2021 at 14:25
Phil it’s a strange one. Outwardly no one would guess I was ill at all. Only 54 , 12 1/2 stone , quite well muscled , problems with my knees only. My back better than ever due targeted RT and now HT working.

All my other man-bits are still fine but I’d be a liar if I said my libido wasn’t fading. It is and it bothers me. And when we do I can’t orgasm mostly which is distressing.

Some days I’m on top of the world , busy and fixing up home and as many holidays as we can etc. Other days I just sit in the garden and inwardly weep as I’m not ready to die by a long way , but surely edging nearer.

Sometimes when I’m happiest the cloud comes heavier , because I know it can’t last. I’m sure you get it. Keep well and in touch

If life gives you lemons , then make lemonade

User
Posted 26 Jul 2021 at 10:00

Chris, I really understand the mental anguish. I’m still not sure how I’m gonna be after the Zoladex starts working. First injection 3rd August…….
I’ve finished counselling now and hoping I don’t need to go back. I’ve read the stories on here of the many very brave souls who went through wretched times towards the end and I’m not sure how I would deal with that.  Just gotta keep busy and my mind off that stuff.
Just sold our home of 38 years and living with MiL till we can move in our new house in mid August. But first, off to Jersey for our sons wedding ( they got married last year but they are re-doing it with all the guests this time) so plenty to think about for a while.

Take care buddy 👍 Nobody said it’d be easy 🤦‍♀️

Phil

 

User
Posted 26 Jul 2021 at 11:38

Hope the Zoladex treatment works well for you Phil.  Enjoy your Son’s Wedding celebrations in Jersey with your family and friends.

You’ve certainly got a lot to focus on with your house move too.  Keep looking forward and enjoy these precious times.

With best wishes,

Ange & Keith x

User
Posted 26 Jul 2021 at 13:41
Aww congratulations to your son - have a great time in Jersey.

You don't really need to know this yet (and hopefully won't need to know for many years) but not all PCa deaths are terrible - some men just slip gently away when the time comes.

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

User
Posted 09 Sep 2021 at 22:00
Hi Phil,

Please see my previous post where I was switched from Zoladex to Prostap by GP for their admin purposes. I reacted poorly and arranged to switch back to Zoladex.

I have to say it is now about a month since the return to the 3-monthly Zoladex and I feel much better!!

I don’t think it is psychosomatic!!

I suppose it shows how we all react differently to medication.

Hope it improves for you whichever one you end up on.

Chris

User
Posted 16 Sep 2021 at 15:17

Brilliant news Pete. 👍. Long may it continue. It’s so good to hear the treatments do work for most people, especially for the newly diagnosed.

I’m hoping they will come up with something new to deal with the mets in my lymph nodes 😬 🙏

Good luck for the future Pete.

Phil

 

User
Posted 16 Sep 2021 at 15:24

Excellent result Pete. Yes you're right PCa is always at the back of the mind.

I am wondering if this could be useful for people post treatment?

https://www.bbc.co.uk/news/health-58544874

Particularly for people who have had RT but not had surgery. We still have healthy prostate cells producing PSA, what we don't know is if we have cancerous prostate cells producing PSA. Though the intention seems to be to use this for pre treatment investigation, my thought is that this test would detect the presence of post treatment tumours so we would have a better idea of whether cancer remains. 

 

Dave

User
Posted 17 Sep 2021 at 15:00

Great news Pete.

Ido4

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User
Posted 07 Nov 2018 at 22:23

The point is that if you ever get to that stage, you will be incurable and will go back onto HT permanently (unless it stabilised dramatically and you can have the occasional hormone holiday) and all hormone treatments have a limited life span so they don't rush to start you back on them. Your onco says they would wait until 5.0 ... Some hospitals/ CCGs will wait until it is 10 or 20.

As you say, you are thinking about something that may never happen.

Edited by member 07 Nov 2018 at 22:24  | Reason: Not specified

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

User
Posted 08 Nov 2018 at 02:10
Thanks Lynn, your reply is very helpful.

I must admit that I do tend to look at worst case scenarios as inevitable, when maybe they are not.

User
Posted 08 Nov 2018 at 12:08

What I am unsure about is what stage the cancer would be at if PSA went to 5 or 10.

Do you think it would be metastatic by then ?

Edited by member 04 Jan 2019 at 05:24  | Reason: Not specified

User
Posted 19 Dec 2018 at 21:27

I’m having my last hormone injection in January so next year could be interesting.

I will finally discover whether or not my Radiotherapy earlier this year killed the cancer or not.

Could be a rollercoaster of a year and I’m hoping that I don’t find myself further down the slippery slope at the end of it.

Would appreciate the input of anyone else who ended HT and waited to see if anything happens.

For me it will be an interesting experience but scary I think.

Edited by member 04 Jan 2019 at 05:25  | Reason: Not specified

User
Posted 20 Dec 2018 at 10:09
pete,i had my last zoladex injection 4th april 2016 for t3b no mo,just had my 6monthly check up it is still 0.03,so not to bad.
User
Posted 20 Dec 2018 at 21:01

Good to hear Radar and thank you.

I hope I get a similar result.

 

 

 

 

User
Posted 28 Jan 2019 at 17:20

Had my last Prostap injection today.

It’s good for 12 weeks.

After that I will be in uncharted territory.

 

User
Posted 21 Apr 2019 at 21:04
Well it’s 22nd April tomorrow and exactly 12 weeks since my final hormone injection.

So from Monday I am treatment-free and flying without a parachute or swimming without a life vest.

I sincerely hope and pray that my cancer was killed off by the SRT I had last year but I am not holding my breath.

It came back before and it can sure come back again.

Another biochemical failure would be a massive disappointment but not a surprise.

My next PSA test is due in June and then again October when my Oncologist will reassess my situation.

It is going to be an interesting year and I hope an uneventful one.

User
Posted 22 Apr 2019 at 12:38

I’m in a similar situation, last injection 3/1/19, see my oncologist in July with PSA tested the week before.

Like you I really hope the ADT plus salvage radiotherapy has done its job.

Squeaky bum time......

Ido4

User
Posted 22 Apr 2019 at 20:40

Ido4, Please keep me updated on your progress and I will certainly reciprocate on this thread.

I must say that I felt a certain sense of security whilst on Prostap which is now gone. 

Let’s see what the future holds.👍

User
Posted 22 Apr 2019 at 20:58

For those of you who finished hormone treatment some time ago, do testicles recover in size, and is size linked to recovering testosterone levels?

8 months in to HT, mine are less than half the original volume and shrinking fast, and I'm wondering if that's a one-way street?

User
Posted 23 Apr 2019 at 19:28
I will let you know in due course about the time span for reversal of all HT side effects.

It might take a while though.

User
Posted 23 Apr 2019 at 21:31
Some side effects can be permanent - loss of penis length / girth, moobs (you may be entitled to breast reduction surgery on the NHS if they are large and distressing), hot flushes. Some are temporary - breathlessness, weight gain, muscle loss, tendon / ligament problems, etc. Testicles do tend to regain their original size and weight if your testosterone levels rise back to pre-treatment levels. Unfortunately, for some men the testosterone never gets back to normal.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Apr 2019 at 03:32

Thanks for your input Lyn.

User
Posted 10 Jun 2019 at 15:22

Got my latest PSA today which was the first test since my hormone treatment expired on April 22nd - 7 weeks ago.

PSA is <0.02 and testosterone is <0.1.

So all is well right now.

Next test scheduled for October.

 

User
Posted 10 Jun 2019 at 15:24

No sign of any side effects reversing yet.

User
Posted 10 Jun 2019 at 16:32

Great that your PSA has stayed low. I’m waiting on side effects abating too.

Ido4

User
Posted 10 Jun 2019 at 16:58

Thanks Ido4.

Not sure if side effects are reversing or not - I think probably not.

Although I have lost almost 9 kilos in excess weight since HT expired and my leg and back pain is gone.

User
Posted 11 Jun 2019 at 10:59

Originally Posted by: Online Community Member
Some side effects can be permanent - loss of penis length / girth, moobs

The thing about these is they're avoidable in most cases when due to HT.

Outside of this forum, I'm finding many patients not only don't know this is avoidable, they're usually not even aware it might happen.

User
Posted 11 Jun 2019 at 11:57

Good luck to you guys coming off the HT. My last injection is due October and I can’t wait. My PSA is currently 0.02 so I’m hopeful....

My counsellor is worried about the time coming off the Prostap as I haven’t dealt with it mentally very well. So we are trying to save sessions for that time. My need to get my head back overcomes my worry about the RT not having worked, although it’s still there at the back of my mind.

Please keep us posted on your journeys after HT.

And again , good luck to you.

Phil

User
Posted 11 Jun 2019 at 13:16
It seems a bit puzzling why the Specialists insist you should stick rigidly to the 90 day intervals between HT jabs when the drugs and suppressants appear to stay in the body for weeks/months even years after the final jab.
User
Posted 11 Jun 2019 at 16:38

The catch is, not everyone.
Tests show that with 4 Zoladex doses, in 91% of cases, it maintains castrate level (0 - 1.73 nmol/L) over 4 x 84 days.
In 4% of cases, it was only just over castrate level (< 2 nmol/L) .
In 5% of cases, it escaped castrate level for up to 14 days.
In one out of 160 cases, it didn't maintain castrate level at all.
(ref https://www.accessdata.fda.gov/drugsatfda_docs/label/2013/020578s034,020578s035lbl.pdf page 10).

I would expect that if you extend the dose period, you would see a growth in the 5% of cases which bob up above castrate level for some days.

The other factor is that it can take some time for testosterone production to kick in even after the horomone dose has gone, but again, this varies a lot between people. I would not assume this is due to any drug still being in the body.

User
Posted 11 Jun 2019 at 16:50

Andy62, the Testosterone level will likely be dependent also on age and what your level was before treatment started.

I am hoping mine will come back soon after HT stops 😳...

Phil

User
Posted 06 Sep 2019 at 21:43
Next PSA test now scheduled for September 11 so it is currently squeaky bum time.

Hairs are now growing back on my legs so I know the effects of HT are wearing off and side effects are reversing.

I feel as fit as a butcher’s dog but let’s see what the PSA test throws up.

User
Posted 12 Sep 2019 at 09:04

PSA test done yesterday.

Result < 0.02 so all good.

Last Hormone injection was in January and I appear to be still in remission.

When I was doing hormone treatment I had lots of aches and pains especially in my legs and back.

That’s completely gone now and I feel good.

Long may it continue.

Edited by member 12 Sep 2019 at 09:06  | Reason: Not specified

User
Posted 12 Sep 2019 at 09:28

I'm really pleased for you Pete. I'm following this thread because it will be good to see how long it takes to reverse the side effects.

Chris

 

User
Posted 12 Sep 2019 at 11:54

Well, as I mentioned before the hairs are growing back on my once bald legs so I guess testosterone is slowly coming back.

Can’t think of any other side effects reversing apart from the disappearance of leg and back pain.

User
Posted 12 Sep 2019 at 14:59

That’s good news. Long may the good news continue. I had my last PROSTAP 3 injection January 3rd, next PSA test 30/9 or beginning of October. 

Ido4

User
Posted 28 Sep 2019 at 21:21
Saw my Oncologist this morning who was very upbeat about my latest PSA being <0.02.

He also informed me that my testosterone reading was measured at 3.7 compared to only 0.2 three months previously.

I told him I kinda guessed that was the case because of leg hair growing back.

He was also pleased to hear that all leg and back pain has disappeared since finishing the hormone treatment.

He was very optimistic about my prospects going forward and said that if he had to put a number on it he was about 90% confident that I will not have a further recurrence.

I certainly hope he’s right but let’s wait and see.

Next appointment in March 2020 so all this stuff will now get parked at the back of my mind.

After more than 5 years of this I have learned to live with it and no longer fret about it too much.

I’m off to Dubai in 2 weeks for a few weeks of sun, sea and sand so this Pca stuff is definitely going on the back burner.

User
Posted 28 Sep 2019 at 22:35
That’s excellent news, Pete. Enjoy your holiday!

Best wishes,

Chris

User
Posted 29 Sep 2019 at 15:02

Great news. Enjoy the holiday.

Ido4

User
Posted 29 Sep 2019 at 16:05
Great news !! I don’t fret about it too much either over 4 1/2 yrs on , but tests and scans next month again. It’s like living my life in 6 month slots lol.

Have a well deserved holiday !

If life gives you lemons , then make lemonade

User
Posted 04 Oct 2019 at 06:18

Good response. Mine was down to 0.07 at that point (then 0.05) and my onco never gave a forecast.

i wonder if the response level does give an  indication of effectiveness depending on how low below 0.1 you go after RT?

Although my T levels were up to 14 at my first test so that may have a bearing.

Edited by member 04 Oct 2019 at 06:23  | Reason: Not specified

User
Posted 21 Oct 2019 at 15:09

Well I just joined the ‘last HT jab’ club. My PSA has stayed at 0.08 for the last 2 checks so I’m hoping all is good .

I’m counting down the days till I can feel the HT wearing off. I didn’t really get any physical side effects so I won’t have that to look out for. It’s my mind I want back please 😊. Don’t hear of many on here that get the mental issues with HT, or no one talks about it anyway.

Does anyone recall Mr Angry ? (Iain I miss you) He and I had similar childhoods and both suffered mental issues with HT so it seems its linked to how your brain is already conditioned by any previous trauma.

Iain did tell me that for him it got easier as the HT wore off so I’m hoping and keeping my fingers crossed as there’s no way I want to go back on this stuff....

I don’t think anyone comes out the other side the same as they went in 😳.

Good luck Ido4 and Pete5963, I’m watching your journeys closely 

User
Posted 21 Oct 2019 at 18:00

Hi Phil

Thanks for posting.

I am currently in Dubai soaking up the sun and sea, but still finding time to check out the PCUK forum.

You’re absolutely right about not coming out the other side the same as you went in.

I think this applies to all the radical cancer treatments and whilst I am not aware of any adverse mental issues, I have experienced pretty life changing physical issues. I am nowhere near the guy I was before this whole thing kicked off going on 6 years ago.

However thanks to the doctors and nurses of the NHS I am still very much alive and hope to stay that way for a long time yet.

 

 

User
Posted 21 Oct 2019 at 18:12
Best wishes Goalhanger with a very speedy improval post HT treatment. Mental Illness has affected me all my life really through childhood issues , so the thought of starting HT absolutely terrifies me. In fact any further change at all terrifies me if I’m honest. I’m not good with change. Will find out in one month after scans. Take care !

If life gives you lemons , then make lemonade

User
Posted 22 Oct 2019 at 10:43

You’ll be glad you are off the HT wagon. You are absolutely right no one comes out the other side of these radical treatments the same as they were. But I’m very grateful to still be here. I am still on fluoxetine which takes the edge off any anxiety (not completely, I still over react at times 😬). My mind is still not as good as it was pre HT but I have found in the last few weeks my sleep has improved significantly which is very welcome. There are times when I feel more energetic too but still have to pace myself.

Look forward to seeing your progress off HT. 

 

Ido4

User
Posted 22 Oct 2019 at 11:03

Oh Chris, so sorry how could I forget your Bi-Polar. 

I asked my counsellor if I’ll ever be normal, she said you weren’t normal before the HT and so the answer is no. She does say I am becoming more like the person I could have been had I not had my childhood issues. Not sure what that means but it sounds interesting 😳😳. I find the journey interesting, especially if I were just a bystander and not the subject ...

Apparently I have suppressed emotions from childhood and so I’m feeling very sensitive as for some reason the HT has caused me to be more emotional. I’m not used to these waves of emotion. I am going back through my childhood adding the emotions I didn’t really have at the time and it’s a journey I can tell you 😳😳.

So I’m hoping that I will come out in the end being more emotional than I was but not so sensitive as I am now. Does that make any sense.

Had to up the Mirtazapine to 45mg . I didn’t want to change anti-depressant so close to coming of the HT.

Also reduced the gap between counselling, which helps. I’m trying this new thingy where you flick your eyes one way. I think it’s for PTSD. We’re also gonna try Mindfulness next.....

The new ME 😆😆. I may be a monster or a pussy cat..........

Thanks for your input guys, much appreciated. None of us on the same road but running parallel to each other.

Shall I post updates on here or do I need to start a new thread ?

Phil.

 

 

User
Posted 22 Oct 2019 at 14:22
I would keep the updates all together on this thread; it helps everyone to check back to where you have been and where you are now.

I think it would be a rare man that is the same after as before - but then I guess that could be said of anyone diagnosed with a (potentially) life limiting disease.

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

User
Posted 04 Dec 2019 at 16:54

So just had hospital on phone and PSA still low at 0.07 so don’t need to go to consultant appointment tomorrow. I have 36 days till the HT officially starts wearing off and I’m seriously counting down the days....

They will start measuring testosterone from the next blood test which will be interesting.

Doctor told me that my PSA shouldn’t rise after the HT wears off but I was expecting it to go to some kind of normal level as I still have a Prostate????? Is that right ?

Still suffering badly mentally and only have 3 more counselling sessions left so hoping I will feel better when the HT wears off. 

I can’t think about not getting my mind back after HT. Wishing I’d had the opportunity to deal with childhood stuff when I was younger. Just burying it doesn’t work forever.

Ciallis 5mg still doing good but the wife going through the menopause and not interested at the moment. Not her fault but something I miss terribly 😢. So I’m lucky and unlucky 🙄.

Any updates on the journeys after HT guys ? Especially related to any mental issues...

Phil 

User
Posted 04 Dec 2019 at 17:17
General thinking seems to be that however long you were on HT, it'll take a roughly similar length of time for the effects to wear off. I finish my HT in two months, so I'll be interested in putting the idea to the test myself.

Very best wishes for the future,

Chris

User
Posted 04 Dec 2019 at 17:35

Cheers Chris , I read your other thread and I’m trying not to imagine your chest .....

I was quite quick to get my issues so hopefully quick to lose them ....

Fingers crossed for you too.

Phil 

User
Posted 04 Dec 2019 at 23:04

Originally Posted by: Online Community Member
Doctor told me that my PSA shouldn’t rise after the HT wears off but I was expecting it to go to some kind of normal level as I still have a Prostate????? Is that right ?

Doctor is wrong - you still have a prostate, some of which will probably start working again and generate normal levels of PSA. As long as your PSA doesn't reach your lowest measured level + 2.0, you are OK.

It is very good that they will be adding testosterone tests to the PSA tests when you come off HT. Without the testosterone level, you won't know when testosterone starts to return. Often that doesn't happen for some time, and then all of a sudden it will start climbing up. Reviewing your PSA level in conjunction with your testosterone level enables a much better understanding of the results, but it's not often done.

User
Posted 05 Dec 2019 at 09:06

Thanks Andy. I thought it would rise too.

I asked for the testosterone test to be added . They’ve not done it up to now.

Phil

User
Posted 24 Dec 2019 at 10:03

Merry Christmas to all and hope you have a Happy New Year too ...

I now have 16 days till my HT starts to wear off 😳.  Have a meeting with my counsellor on the same day. Still suffering in the head and still on 45mg Mirtazapine. Hoping I can wean off after the HT starts to leave my system.

Have stopped the Tamsulosin completely now and all seems OK ...

Hope you guys coming off are doing ok ?

Good luck to all.

Phil

User
Posted 25 Dec 2019 at 06:18

Merry Christmas Phil.

Everything fine with me and I feel good since my HT finished.

My last 3 month injection of Prostap was in January 2019 and I am now on 6 monthly check ups.

Nothing to report which is a good thing I reckon and my next review date is 1st April.

Hoping that the PCA will not take me for a fool that day !!

Pete

 

 

 

 

Edited by member 25 Dec 2019 at 06:21  | Reason: Not specified

User
Posted 28 Mar 2020 at 01:16

Had my 6 month PSA check on Wednesday.

Still good at < 0.02

So still in remission 5.5 years after RP, 2 years after the end of RT and 1 year after the end of HT.

I can now park PCA at the back of my mind for another 6 months unless the Corona Virus gets me first.

They were very strict at the GP surgery on Wednesday. The reception and waiting room were closed and I entered furtively by the back door where I was met by people in masks who thrust hand sanitiser at me and watched my every move.

Totally surreal.

My hospital Oncology appointment on Wednesday 1st April will now be a telephone appointment which is good because I don’t want to go anywhere near a hospital right now.

Take care everyone and stay safe.

Pete

 

 

 

 

 

User
Posted 28 Mar 2020 at 01:32
Great PSA result Pete
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Mar 2020 at 07:31

Great news Pete.

Ange

 
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