I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

PSA 67 pelvis lymph nodes and base of spine

Email this conversation Print this conversation
User
Posted 12 Oct 2024 at 11:11

Firstly what an amazing community this is! So glad I found it.

My husband and I went for all the results yesterday. His PSA was 67 (45ish in June 2023 but gp didn't inform us let alone make a referral!). 10 biopsies taken all positive, in pelvis lymph nodes and base of spine. Gleeson of 9 4:5.

Soo I suppose I would just like to reach out to anyone with similar results - how you are - what the treatment was.  I've been reading about Triplet therapy and I'm thinking that could be the route he'll be going down but he's very open to any new trial's - has anyone been on any trials?

Thanks so much Kathryn 

User
Posted 13 Oct 2024 at 02:52
Hi Kathryn , my husband was diagnosed in 2015 at the age of 55 . PSA 23 Gleason 4+5 spread to para aorta lymph nodes . Never in a million yrs did we think he’d still be here let alone still managing to hold down a manual job. A lot of new treatments are available now , Gary was given 6 rounds of early chemo then put on the stampede trial of Enzo and Abi combination. He is on life long prosap and still the Abi ,the Enzo was stopped after the trial determined that both drugs made no difference to taking both . Gary’s PSA is undetectable.

Yes our lives have changed ,he gets tired easily but we still enjoy life / holidays and at the beginning had no grandchildren we now have 7 ! Best wishes to you both with whatever treatment path is taken .

Debby x

User
Posted 21 Oct 2024 at 09:51

Update just back from the oncology apt. PSA down to 20💪 starting on either ENZA or ABI or one of the other 2 newish drugs. Radiotherapy early next year and she's keeping chemo 'up her sleeve'. Also taking part in new trial so will see the consultant every couple of weeks.  Feeling better - those weeks of waiting are horrendous!

User
Posted 12 Oct 2024 at 12:43

Hi Kathryn.

Sorry to see that you and your hubby have had to join the Club. Welcome to the forum.

I have no experience of the treatment, but if you put triplet in the search box, it'll come up with several posts on it.

Best of luck to you both.

User
Posted 12 Oct 2024 at 13:20

Hi Kathryn,

Welcome to the club that nobody wants to join, but now you are here you will find loads of support and information from the members.

I guess they will want to throw everything they can at this and although I hadn’t heard it called triplet therapy there are many on here who have been on ADT and ARPI. They would be much better to comment on it than me.

Your GP certainly need a good kick up the backside…that is dreadful that no action was taken when it was 45, because it was almost certainly Prostate Cancer.

Its a real shock at first but you will hopefully both come to terms with the diagnosis and I would imagine they would want to start treatment immediately the MDT has met and decided how to proceed.

I wish you both all the best on jour journey…try and stay active, busy and give yourselves lots of treats to keep some normality in your lives…I really believe it helps.

Derek

 

User
Posted 12 Oct 2024 at 13:54
Don't let the GP get away with that shocking oversight!!

Ask about radio therapy too, it won't be curative but trials have shown that treating the original tumour is beneficial.

User
Posted 13 Oct 2024 at 10:00
ABI is a "second line" hormone treatment that is now given up front in high risk cases like yours.

ENZA (using short names cos I can't spell!) is in the same group as ABI but is a newer drug that doesn't need added steroids.

The trial Debbie refers to is what proved the benefit of combining old and new second line hormone therapy drugs.

If your consultant is not considering the approach Debbie describes you must ask WHY...

User
Posted 13 Oct 2024 at 10:08

This is great thanks - I did just have a quick look. So can Enza be offered instead of Abi do you know - I think that would be preferable to having one with steroids due to the side effects of the steroids as well. And would chemo still be the first treatment?? Sorry for all the questions. Is this what they're calling Triplet therapy?? 

Thanks for your help 

Kathryn 

User
Posted 13 Oct 2024 at 10:32

To Kathryn,

ENZ stands for Enzalutamide and ABI stands for Abiraterone.  Both are second line antigen treatments (ADT)

which means Antigen Deprivation Treatment.  Hope this will clear the matter.

AC Strath

User
Posted 13 Oct 2024 at 12:31

Originally Posted by: Online Community Member
And there's a complaint going in re the GP.

GP's do get sued for failing to refer, and the payouts can be very substantial. Don't be surprised if they become defensive or go silent, and don't waive your rights to sue. However, it is important someone investigates what went wrong and gets it fixed - sadly that won't help your husband, but that GP practice may have missed lots of men who need referring.

User
Posted 13 Oct 2024 at 19:05

The main thing for us is an acknowledgement of the mistake at this stage, so I'll be putting in a complaint with the surgery.  Later down the line we might pursue things further (good friend is a partner with Med Negligence Firm) just not quite the right time just yet.

User
Posted 21 Oct 2024 at 10:46

Originally Posted by: Online Community Member
 Feeling better - those weeks of waiting are horrendous!

Hi Kathryn.

Thanks for you update. It's great news to see a drop in PSA. I'm pleased that you're feeling  better, the waiting is the worst part. Now you've got a treatment plan it will give you something positive to focus on.

Good luck to you both with the trial and further treatment. 👍 

Edited by member 21 Oct 2024 at 10:53  | Reason: Additional text

Show Most Thanked Posts
User
Posted 12 Oct 2024 at 12:43

Hi Kathryn.

Sorry to see that you and your hubby have had to join the Club. Welcome to the forum.

I have no experience of the treatment, but if you put triplet in the search box, it'll come up with several posts on it.

Best of luck to you both.

User
Posted 12 Oct 2024 at 12:55

Thanks Adrian 

User
Posted 12 Oct 2024 at 13:20

Hi Kathryn,

Welcome to the club that nobody wants to join, but now you are here you will find loads of support and information from the members.

I guess they will want to throw everything they can at this and although I hadn’t heard it called triplet therapy there are many on here who have been on ADT and ARPI. They would be much better to comment on it than me.

Your GP certainly need a good kick up the backside…that is dreadful that no action was taken when it was 45, because it was almost certainly Prostate Cancer.

Its a real shock at first but you will hopefully both come to terms with the diagnosis and I would imagine they would want to start treatment immediately the MDT has met and decided how to proceed.

I wish you both all the best on jour journey…try and stay active, busy and give yourselves lots of treats to keep some normality in your lives…I really believe it helps.

Derek

 

User
Posted 12 Oct 2024 at 13:54
Don't let the GP get away with that shocking oversight!!

Ask about radio therapy too, it won't be curative but trials have shown that treating the original tumour is beneficial.

User
Posted 12 Oct 2024 at 14:21

Thanks Derek - they started him on hormone treatment immediately before any tests or biopsies as they were sure it was cancer and they could feel the tumor - so at least that's something. His first injection was a week ago. Now just to see what else - his brother went through this a couple of years or so ago and also had radiotherapy - the one with the beads if that makes sense 🤣

Yep shocking negligence from GP even the hospital Dr apologised for him being in the position we're in now - whether or not it's made a significant difference I'm not sure, but a complaint is def going in.

User
Posted 12 Oct 2024 at 14:22

Thanks yes we will def be asking about radiotherapy. And there's a complaint going in re the GP.

User
Posted 13 Oct 2024 at 02:52
Hi Kathryn , my husband was diagnosed in 2015 at the age of 55 . PSA 23 Gleason 4+5 spread to para aorta lymph nodes . Never in a million yrs did we think he’d still be here let alone still managing to hold down a manual job. A lot of new treatments are available now , Gary was given 6 rounds of early chemo then put on the stampede trial of Enzo and Abi combination. He is on life long prosap and still the Abi ,the Enzo was stopped after the trial determined that both drugs made no difference to taking both . Gary’s PSA is undetectable.

Yes our lives have changed ,he gets tired easily but we still enjoy life / holidays and at the beginning had no grandchildren we now have 7 ! Best wishes to you both with whatever treatment path is taken .

Debby x

User
Posted 13 Oct 2024 at 09:19

Thanks so much Debbie. I'm so pleased to hear your husband is doing so well.  ❤️ 

I'm not sure what all the drugs are you mentioned? Do you mind explaining what they are - assuming they're hormone related but not sure.

 

Kathryn 

User
Posted 13 Oct 2024 at 10:00
ABI is a "second line" hormone treatment that is now given up front in high risk cases like yours.

ENZA (using short names cos I can't spell!) is in the same group as ABI but is a newer drug that doesn't need added steroids.

The trial Debbie refers to is what proved the benefit of combining old and new second line hormone therapy drugs.

If your consultant is not considering the approach Debbie describes you must ask WHY...

User
Posted 13 Oct 2024 at 10:08

This is great thanks - I did just have a quick look. So can Enza be offered instead of Abi do you know - I think that would be preferable to having one with steroids due to the side effects of the steroids as well. And would chemo still be the first treatment?? Sorry for all the questions. Is this what they're calling Triplet therapy?? 

Thanks for your help 

Kathryn 

User
Posted 13 Oct 2024 at 10:32

To Kathryn,

ENZ stands for Enzalutamide and ABI stands for Abiraterone.  Both are second line antigen treatments (ADT)

which means Antigen Deprivation Treatment.  Hope this will clear the matter.

AC Strath

User
Posted 13 Oct 2024 at 10:47

The steroid with Abiraterone is because Abiraterone stops your body from making some steroids (including Testosterone, which is the aim), but you do need some other steroids which are essential and missing, and it's replacing those. It's a low dose, and in theory not much more than you would have had naturally anyway.

User
Posted 13 Oct 2024 at 10:50

Thanks Andy - that makes sense.

User
Posted 13 Oct 2024 at 11:13
Thankyou all for explaining! I’m rubbish on the medication front . Yes Gary also takes the low dose steroid.

Happy to help any other questions,( might need others help as well !)

Debby x

User
Posted 13 Oct 2024 at 12:31

Originally Posted by: Online Community Member
And there's a complaint going in re the GP.

GP's do get sued for failing to refer, and the payouts can be very substantial. Don't be surprised if they become defensive or go silent, and don't waive your rights to sue. However, it is important someone investigates what went wrong and gets it fixed - sadly that won't help your husband, but that GP practice may have missed lots of men who need referring.

User
Posted 13 Oct 2024 at 19:05

The main thing for us is an acknowledgement of the mistake at this stage, so I'll be putting in a complaint with the surgery.  Later down the line we might pursue things further (good friend is a partner with Med Negligence Firm) just not quite the right time just yet.

User
Posted 13 Oct 2024 at 19:07

Thanks again Debby☺️

User
Posted 21 Oct 2024 at 09:51

Update just back from the oncology apt. PSA down to 20💪 starting on either ENZA or ABI or one of the other 2 newish drugs. Radiotherapy early next year and she's keeping chemo 'up her sleeve'. Also taking part in new trial so will see the consultant every couple of weeks.  Feeling better - those weeks of waiting are horrendous!

User
Posted 21 Oct 2024 at 10:46

Originally Posted by: Online Community Member
 Feeling better - those weeks of waiting are horrendous!

Hi Kathryn.

Thanks for you update. It's great news to see a drop in PSA. I'm pleased that you're feeling  better, the waiting is the worst part. Now you've got a treatment plan it will give you something positive to focus on.

Good luck to you both with the trial and further treatment. 👍 

Edited by member 21 Oct 2024 at 10:53  | Reason: Additional text

User
Posted 25 Nov 2024 at 19:48

Update - visited the consultant today the trial had been put on hold and we were told today that it was still on hold so a no go.  He's starting Apalutamide tonight, with radiotherapy in March everyday for a month.

Any one had experience of Apalutamide, good, bad side effects any info appreciated.☺️

User
Posted 03 Dec 2024 at 20:32

Originally Posted by: Online Community Member

Update - visited the consultant today the trial had been put on hold and we were told today that it was still on hold so a no go.  He's starting Apalutamide tonight, with radiotherapy in March everyday for a month.

Any one had experience of Apalutamide, good, bad side effects any info appreciated.☺️

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2025 Prostate Cancer UK