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After Hormone Therapy

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 05 Feb 2021 at 15:57

Thank you Ange. Got to be positive 👍.

Hope you and Keith are staying well , and safe of course ....

Phil

User
Posted 23 Mar 2021 at 19:19

Had my 6 months check up last week.

PSA still < 0.02 so all good.

I am now 3 years on from Salvage Radiotherapy and 2 years on from ending Hormone Therapy.

 

 

 

Edited by member 23 Mar 2021 at 19:20  | Reason: Not specified

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 10:24

How is this thread an "end-of-life issue"? Suggest moderator moves it.

User
Posted 29 Mar 2021 at 12:59

Short update to my Hospital visit last Friday regarding bladder frequency and urgency.

They did the usual tests , flow , residual etc and came to the conclusion it is likely radiation damage to bladder lining. Doesn’t seem to be any narrowing of the urethra. Now waiting for a date for the camera into the bladder to have a look round. In the meantime they gave me Solifenacin 5mg to try plus to increase my fluid intake. I can up to 10mg after a week if it’s not working. If it does work I could be on them for life. Side affects seems minimal so if it works I’m ok with that.

Also still got to wait till mid May to get my latest PSA results. Fingers crossed it’s steadied or even gone down ..... as always nervous but especially so when PSA has gone to 2.75 from 0.08 .

Phil

User
Posted 29 Mar 2021 at 13:43

Originally Posted by: Online Community Member

How is this thread an "end-of-life issue"? Suggest moderator moves it.

 

This thread has been sitting happily in the end of life folder since Nov 2018, when Pete discovered that he had yet another recurrence and was probably moving towards 'incurable' status. I guess what matters is where the original poster wants it to be?  

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

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 17:14

Thank you Ange. Had a weeks worth of the Solifenacen but doesn’t seem any different so they said double the dose to see if that helps. They are phoning me in a couple of weeks to check up on me ..
Just waiting for a date for the camera .

Not seen anything on this forum regarding bladder damage from RT. I only know it’s quite rare - trust me 🤷🏼‍♂️.

Phil

Edited by member 01 Apr 2021 at 17:15  | Reason: Not specified

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 11:14

Just a quick update : Doubled the Solifenacin and it seems to be working. So I’m now on Tamsulosin, Solifenacin, Tadalafil and Mirtazapine..... 

Hoping to ween of the Mirtazapine soon and in a few months I’ll try to reduce the Solifenacin down.  Waiting for an appointment for a camera to see what’s going on in the bladder, results of which may determine future pill popping...

PSA test soon and obviously result will determine if I need more HT or not. Not something I’m looking forward to ...

We are visiting our son in Jersey early May for a week and will get my results over the phone from my consultant/nurse while we are out there...

Take care everybody, 

Phil

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 26 Apr 2021 at 15:02

Thanks Ange, Chris. Always good to have something to look forward to. So easy to get out of that habit with things as they are.

We are lucky we’re allowed to fly to Jersey. Our son was on the phone as soon as Jersey States said it was ok 🤣.

Currently the flight is really quiet . Hoping it stays that way ....

Phil

User
Posted 15 May 2021 at 19:19

Latest update : PSA gone up to 4.4 now (2.75 last time). I emailed my s/nurse for my results and to move my consultation as we were in Jersey. She has re-booked for 2 weeks time. Not sure what my consultant will say. Possibly wait for another test before we do anything. But I suspect it’s back on the dreaded HT. Not sure what else there is left in the locker after Brachy and RT.

Its funny but I was just feeling like I’d got the HT from my system. Feel a bit gutted I have to say. I didn’t even get a good run of remission.

Phil

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 21:26

Can’t say I’m not sh*tt*ng myself about going back on the HT. I was reasonably lucky with the physical side effects but mentally I really suffered. My counsellor says I had so much crap from my childhood I hadn’t dealt with to sort out in my head that I won’t get next time so it should be easier on my mind. Hoping she’s right.....

I have to just wait now. I do expect my consultant will want another PSA test before anything is decided. 
I have a close friend who’s treatment didn’t work either and he’s dealing with it really bravely. Not sure I’m that strong ... we’ll see.

Take care guys. 
Phil

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 16 May 2021 at 19:28

Thanks Andy , I will investigate before my next consultation 👍.

I think at the moment I am in a bit of denial....

Phil

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 12:00

Thank you all for your kind words and thoughts. It’s so good to be part of this community, but I honestly didn’t think I would be on here talking about recurrence 6 months ago.

Andy, I see you’re quite knowledgeable on the Hormone Therapy treatment. I saw the other day that the male version of the pill stops Testosterone being produced. Does this not cause all the issues we know about with lack of testosterone or have they found a way round that ? I can’t imaging anyone taking it willingly if it had side effects.

I also looked up Cyberknife and I see you need to be able to ‘see’ the cancer for it to work. I imagine that for me that could be a way off yet as they often can’t find what’s causing the raised PSA until it gets higher.

Thanks again everyone 

Phil 

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 17 May 2021 at 15:38

Andy, Lyn, I think I saw it last week that they were trialing a gel you put on your shoulder. I wondered if it would be any help in PCa especially with synthetic testosterone to lessen side effects. That would be great for ‘lifers’ like I might be.

I wasn’t sure they would be able to see cancer from scans with a PSA of 4.4. Not sure of next steps . Will they do a scan to see if it’s actually spread to somewhere else? 
I didn’t do much research on recurrence or not destroying the damned PCa first time round as I was trying to be optimistic.

Thanks for listening 👍

Phil

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 22 May 2021 at 09:46

Thanks Andy, 

Good information , but obviously not for PCa then ....

Well hopefully they will come up with something better than Hormone Therapy eventually....

Phil

User
Posted 27 May 2021 at 16:33

Just come off phone with consultant. They are booking a bone scan and MRI of the prostate within the next week or 2. PSA test ASAP so I have results when they call me next in a month. Would like a face to face really, now things are a bit more serious.

But at least things are moving reasonably quickly now .
Makes my stomach flip a bit but it is what it is .....

Phil

User
Posted 02 Jun 2021 at 11:51

Have test dates now - Bone scan 8th June, PSA blood test 9th, cystoscopy 10th, MRI of prostate 11th. Consultant telephone call 24th , although I might ask my specialist nurse if they can do a face to face. Hearing your cancer had come back over the phone is pretty brutal.

Hope everyone is enjoying the weather ☀️ 

Phil

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 11:59

I just have to wait to see what my consultant says on the 24th. If the MRI shows nothing do you think I should ask for a PMSA-PET scan ? I heard that it’s more accurate. Don’t know if my hospital does them though.

So Chris, how are you doing on the HT now ?

Phil

User
Posted 11 Jun 2021 at 13:12
MRI are good. You are a candidate for sure for PSMA PET scan also so worth an ask. You may have micro mets like I did so undetectable even at high PSA.

HT is fine thanks. No real issues physically , mentally or sexually. Next bloods end July , so hopefully really really low PSA then just carry on ……

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 11 Jun 2021 at 23:30

I would if I was you Phil - Decapeptyl SR. I’ve done loads of research on a few forums and it seems the side-effects are less severe , so that’s why I asked for it. I was met with the ‘ they all do the same thing ‘ speech , and whilst I believe this is true , I also believe they are different chemical formulas which differ in side effects.
I don’t wish I’d started earlier as at the end of the day my QOL has fallen , and I don’t feel better , but my bloods tell me I am !! Last August my Onco told me I’d be very poorly in a year if I didn’t start HT. I thought last xmas may be my last genuinely. But here I am pushing that …..,,

Edited by member 11 Jun 2021 at 23:33  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 12 Jun 2021 at 09:25

Thanks Chris. I will definitely ask about it.

Let’s hope the HT keeps working for you for a long time yet.

Phil

User
Posted 30 Jun 2021 at 17:10

Yet another quick update : Saw my consultant on 24th June ( in person ) . He says nothing showing on bone scan or MRI but something is definitely going on or PSA wouldn’t be 4.9 and rising. So he’s ordered a Choline-PET scan plus a full body MRI and of course the obligatory PSA test. I meet up with him again on 22nd July after the tests and we’ll take it from there. 

Just sold our house and living with Mother in Law till our house is ready. Was quite a hectic move as it was 20 days from 1st viewing to completion. Tricky to get a removals firm for before end of June at short notice but we found one. 

Hope everyone is doing ok ?

Phil

User
Posted 30 Jun 2021 at 18:16
Hi Phil , good that scans are clear. You’re lucky you are getting MRI’s. I’ve just been obliterated with CT’s over the years ( possibly 12 now which is circa 60 yrs earth radiation, so I’m dead anyway ) ! Maybe you’ve just got a case like mine now where you have oligomets. The PSA keeps rising but they are too small to see. Good luck mate

If life gives you lemons , then make lemonade

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 11:56

Afternoon chaps, just got back from seeing my old mate the consultant…

 PSA up to 5.2 now and as I guessed ‘the little b******’ has spread around a bit. It is now in lymph nodes above my stomach and a very small one up between my lungs.

Consultant has suggested starting HT again immediately with the possibility of holidays in maybe a year. He says he may use Chemo at a later date.

He says I should have a good few years left yet……🤦‍♀️

Was expecting it but it’s still a blow.

We decided on Zoladex as I got bad depression from Prostap so we’ll see how that goes. My GP has to sign off the Zoladex so fingers crossed.

Take care guys,

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 13:17

Thanks Leila 👍

David is so right - so many more adventures to have and memories to make ….

Phil

 
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