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After Hormone Therapy

User
Posted 11 Jun 2021 at 14:12
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 ……

User
Posted 11 Jun 2021 at 14:18

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 12 Jun 2021 at 00:30

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 12 Jun 2021 at 00:33  | Reason: Not specified

User
Posted 12 Jun 2021 at 10:25

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 18:10

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 19:16
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
User
Posted 30 Jun 2021 at 19:24

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 12:56

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 14:07

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 14:17

Thanks Leila 👍

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

Phil

User
Posted 22 Jul 2021 at 14:22

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 15:20

Thanks Ido4 , fingers crossed for the Zoladex…

We just have to play with the cards we are dealt, can’t ask for a new deck 🤣🤣

Phil

User
Posted 22 Jul 2021 at 15:33
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.

User
Posted 22 Jul 2021 at 17:08

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 18:12

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 19:32
Haha made me laugh. We all need a crutch occasionally ( to coin a phrase ). Contact me anytime brother and we can share the woes
User
Posted 22 Jul 2021 at 19:34

Haha made me laugh. We all need a crutch occasionally ( to coin a phrase ). Contact me anytime brother and we can share the woes

👍

User
Posted 23 Jul 2021 at 00:27
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 23 Jul 2021 at 13:28

Did you not discuss Decapeptyl Phil ?

I say this cos my nurse said Zoladex is the hardest to give. It’s a pellet that is injected into the abdomen and big needle / bruising  etc. Good luck 🤞 

 

Edited by member 23 Jul 2021 at 13:32  | Reason: Not specified

User
Posted 23 Jul 2021 at 13:59

Hi Chris, must admit although I guessed what he’d say I was still a bit numb, especially when he said there’s too many places to zap with RT. But I said I wanted to try another type to Prostap and he said Zoladex as the Prostap had worked really well except for my mental issues.

My counsellor did say she thought I wouldn’t be so bad second time round . She says I was dealing with childhood stuff I’d never confronted properly and it took its toll. So hopefully I’ll be ok this time 👍.

Just come off the phone with a friend who’s  treatment didn’t work and he’s on HT Prostap for life now. He suffered at the beginning but he’s come out of it now. It’s certainly a different emotion to getting the initial diagnosis when you are full of confidence that you’ll be cured 🤷🏼‍♂️.

Anyways, how are you feeling Chris ? Making the most of this weather I hope 🤣

Phil

 
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