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

Notification

Error

Hello - made it to 5 years

Email this conversation Print this conversation
User
Posted 19 Dec 2021 at 00:49

Hello everyone
Just a quick update on my husband who was diagnosed in 2016 with a psa of over 6000 and widespread bone and lymph node mets. 
A (very lovely but pragmatic) oncologist said he thought 5 years was ‘very optimistic’ when I virtually begged him to tell me that my children would have their dad for that long. It’s been tough at times but I’m very pleased to say that he made that milestone.
Unfortunately numbers are starting to rise so not sure how much longer he will be able to stay on arbiraterone but we are very grateful for this time we have had. 
(Arbiraterone was started after original hrt failed following early chemo.


Sallyyy

User
Posted 19 Dec 2021 at 00:49

Hello everyone
Just a quick update on my husband who was diagnosed in 2016 with a psa of over 6000 and widespread bone and lymph node mets. 
A (very lovely but pragmatic) oncologist said he thought 5 years was ‘very optimistic’ when I virtually begged him to tell me that my children would have their dad for that long. It’s been tough at times but I’m very pleased to say that he made that milestone.
Unfortunately numbers are starting to rise so not sure how much longer he will be able to stay on arbiraterone but we are very grateful for this time we have had. 
(Arbiraterone was started after original hrt failed following early chemo.


Sallyyy

User
Posted 26 Dec 2021 at 20:19
My husband Gary diagnosed December 15 ,PSA 23 Gleason 4+5 N1 M1 early chemo then onto abi & Enzo combination for stampede trial .Still here and working 6 yrs later .
Hope this gives others hope .
Merry Christmas
Debby
User
Posted 26 Dec 2021 at 17:04

My husband did really well on arberatitone for 19 months and many more people do well for much longer. I don't know if it helps at all but my husband lived for almost 10 years after diagnosis and much of that time was really good and we did a lot.


I hope all goes well for a very long time. X

User
Posted 19 Dec 2021 at 17:32

Thanks for update. Best wishes to you and all the family.

Ido4

User
Posted 19 Dec 2021 at 22:03
Lovely to see you posting Sally and thrilled to know that OH is still well!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Dec 2021 at 02:29

Good news Sally, dare we hope for another five years? I guess we should take one day at a time, but who knows we have had people over ten years.

Dave

User
Posted 20 Dec 2021 at 06:13
Great post Sallyyy! Fingers crossed for another 5 years..
User
Posted 20 Dec 2021 at 15:10
Nice one, stay safe and let's hope for another 5

Good luck to everyone coping with the insidious big C

User
Posted 24 Dec 2021 at 23:00

Originally Posted by: Online Community Member


Hello everyone
Just a quick update on my husband who was diagnosed in 2016 with a psa of over 6000 and widespread bone and lymph node mets. 
A (very lovely but pragmatic) oncologist said he thought 5 years was ‘very optimistic’ when I virtually begged him to tell me that my children would have their dad for that long. It’s been tough at times but I’m very pleased to say that he made that milestone.
Unfortunately numbers are starting to rise so not sure how much longer he will be able to stay on arbiraterone but we are very grateful for this time we have had. 
(Arbiraterone was started after original hrt failed following early chemo.


Sallyyy



 


Sallyy thank you so much for sharing your husband's story.


I have recently been diagnosed with largely the same scenario, Gleason 9, Bones and lymphs compromised, but my PSA was 216.


My onco also thinks 5 years is pushing the envelope, but that is the number I am focusing on trying to reach.


Thankfully my PSA is already down to 3.8 after only 28 days from my first injection of Firmogen.


Although all the stories are important yours resonates with me and gives me hope that I can firstly get to 5 years and hopefully become a statistical aberration and go beyond!


I am only 53 and all organs are in full working order, plus I am up for the fight.


Good luck.

User
Posted 25 Dec 2021 at 04:16
Remember that Oncologists often use tables to make predictions and these are based on a few years back, so may not take account of more recent advances and refinements in treatment. There are/have been a number of men on this site who have surpassed the time their Oncologist suggested they might still have. So hope your man continues to hang in there Sally.
Barry
User
Posted 25 Dec 2021 at 12:07

Diagnosed 2014 psa was 65 Gleason 7 tb3 no mo still here good luck ,happy Christmas. 

Show Most Thanked Posts
User
Posted 19 Dec 2021 at 17:32

Thanks for update. Best wishes to you and all the family.

Ido4

User
Posted 19 Dec 2021 at 22:03
Lovely to see you posting Sally and thrilled to know that OH is still well!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Dec 2021 at 02:29

Good news Sally, dare we hope for another five years? I guess we should take one day at a time, but who knows we have had people over ten years.

Dave

User
Posted 20 Dec 2021 at 06:13
Great post Sallyyy! Fingers crossed for another 5 years..
User
Posted 20 Dec 2021 at 15:10
Nice one, stay safe and let's hope for another 5

Good luck to everyone coping with the insidious big C

User
Posted 24 Dec 2021 at 23:00

Originally Posted by: Online Community Member


Hello everyone
Just a quick update on my husband who was diagnosed in 2016 with a psa of over 6000 and widespread bone and lymph node mets. 
A (very lovely but pragmatic) oncologist said he thought 5 years was ‘very optimistic’ when I virtually begged him to tell me that my children would have their dad for that long. It’s been tough at times but I’m very pleased to say that he made that milestone.
Unfortunately numbers are starting to rise so not sure how much longer he will be able to stay on arbiraterone but we are very grateful for this time we have had. 
(Arbiraterone was started after original hrt failed following early chemo.


Sallyyy



 


Sallyy thank you so much for sharing your husband's story.


I have recently been diagnosed with largely the same scenario, Gleason 9, Bones and lymphs compromised, but my PSA was 216.


My onco also thinks 5 years is pushing the envelope, but that is the number I am focusing on trying to reach.


Thankfully my PSA is already down to 3.8 after only 28 days from my first injection of Firmogen.


Although all the stories are important yours resonates with me and gives me hope that I can firstly get to 5 years and hopefully become a statistical aberration and go beyond!


I am only 53 and all organs are in full working order, plus I am up for the fight.


Good luck.

User
Posted 25 Dec 2021 at 00:37

Best of luck Paul.


Even in that last five years more treatments and options have become available.


Thank you to everyone else for the messages. 

User
Posted 25 Dec 2021 at 04:16
Remember that Oncologists often use tables to make predictions and these are based on a few years back, so may not take account of more recent advances and refinements in treatment. There are/have been a number of men on this site who have surpassed the time their Oncologist suggested they might still have. So hope your man continues to hang in there Sally.
Barry
User
Posted 25 Dec 2021 at 12:07

Diagnosed 2014 psa was 65 Gleason 7 tb3 no mo still here good luck ,happy Christmas. 

User
Posted 26 Dec 2021 at 12:03

That’s great to hear Sally thanks for sharing and happy Christmas to you and yours. 

User
Posted 26 Dec 2021 at 12:56

Hope my Sid gets to 5 years. Oncologist won't commit to any time but says as his has already spread to his lungs and liver he doesn't want to say till after his last chemo in Jan followed by a CT scan. But his lung tumours have shrunk and his psa is less than 1 and he tolerates chemo really well. He wants to reach 80 less than 4 years but your husband and others give me hope and determination. Have a good New Year and keep fighting this sh*t disease.


Bridie

User
Posted 26 Dec 2021 at 17:04

My husband did really well on arberatitone for 19 months and many more people do well for much longer. I don't know if it helps at all but my husband lived for almost 10 years after diagnosis and much of that time was really good and we did a lot.


I hope all goes well for a very long time. X

User
Posted 26 Dec 2021 at 20:19
My husband Gary diagnosed December 15 ,PSA 23 Gleason 4+5 N1 M1 early chemo then onto abi & Enzo combination for stampede trial .Still here and working 6 yrs later .
Hope this gives others hope .
Merry Christmas
Debby
User
Posted 28 Dec 2021 at 07:16
Great news Sally.
User
Posted 28 Dec 2021 at 11:51

That’s brilliant news Sally. Fingers crossed you both get another five years. Xx

Debbie xxx
 
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