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User
Posted 11 Feb 2018 at 19:09
Hi all,

Struggling to come to terms with dad's Gleason 8 stage 4 diagnosis (psa 260). Sometimes I think be thankful, could be worse. And other times (most of the time) I'm terrified of what's ahead of us.

I'm petrified that it is so aggressive its going to take him away from us.

It's at an advanced stage and I know there's plenty of treatment but nothing can really determine if that treatment will work and how long for. He has been advised to start chemo along with his HT.

It's making every day very hard and I had expected once we knew what we were dealing with that things might be a bit easier to cope with but this hasn't been the case.

Please please provide me with some reassurance.

Thank you

Miffy
User
Posted 13 Feb 2018 at 18:51

Good news again. PSA remains undetectable all other blood results normal. Next appointment in May.

User
Posted 14 Feb 2018 at 11:09
A friend mentioned the STAMPEDE trial and I mentioned to the Onco who thought it had merit for me so we went for it! Been back on it for 3 days again now and it’s hit me a bit for 6. Just need to get used to being on it again
User
Posted 15 Feb 2018 at 13:04
Quote:
Miffy27;

I Can feel your daughters fear and I'm sure you're very proud of her for being so strong. It's a tough time for all involved. Hopefully dad's further treatment will start soon and we can all feel more at ease that he's going nowhere any time soon!

Thanks

Yes, I am immensely proud of her - and my wife and two sons. To my mind I was just dad who would help out wherever he could and have everybody’s eyes rolling at the “brilliant” jokes. It’s been extremely humbling to be shown how I’m much more than that.

I’m sure your dad feels the same way - and just wait until the hormone therapy starts messing with his emotions! And I don’t mean that at all in a negative way. I got emotional watching Early Man with my grandson yesterday!! 😀😀

Take care

Dave

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User
Posted 11 Feb 2018 at 22:08

The main issue will be whether it’s contained in the prostate or not. If contained then you’ve got lots of hope but, even if it’s spread, I understand that there’s lots of potential treatments (certainly hope so as mine is widespread through the bones). Good luck

User
Posted 11 Feb 2018 at 23:34

Unfortunately not it has spread throughout the skeleton but we were not told the details. No areas of weakness to particularly worry about we were told, and no pressure on spinal cord which is a positive.

Miffy
User
Posted 12 Feb 2018 at 19:36
I’m still fairly new to this but your Dad’s condition sounds similar to mine. Mine was widespread throughout the skeleton as well. Having seen other posts on here it seems that there are some men on here who’ve survived 10+ years with similar conditions. In my case I’ve had the Prostap injection and was scheduled for chemo but instead went on Abiraterone (mixed success as it’s made my liver go a bit daft so I’ve been on and off it). My PSA started at 129 and hasn’t been registerable for about 6 months now. I was given a best case/worst case prognosis and if things continue to go well I might just get to see my 4 year old Grandson become a teenager. Don’t give up hope
User
Posted 12 Feb 2018 at 21:51

Hi Miffy,

Be careful you don’t confuse things by changing your profile name and creating a different thread.

As I’ve said (when you were positivethoughts) I’ll happy to answer anything I know the answer to.

I know how difficult it is at this stage when treatment has only just started. You say you don’t have any details of where in the bones metastasis is. Are you accompanying dad to any appointments? If so just ask, or he can. That information will be available.

My own daughter was a tower of strength to my wife and I when I was first diagnosed even though she was very scared herself. It only natural that you are worried for the future but you probably won’t get the reassurance you need until you see your dad’s treatment working.

Take care

Dave

User
Posted 12 Feb 2018 at 23:02
Originally Posted by: Online Community Member
I’m still fairly new to this but your Dad’s condition sounds similar to mine. Mine was widespread throughout the skeleton as well. Having seen other posts on here it seems that there are some men on here who’ve survived 10+ years with similar conditions. In my case I’ve had the Prostap injection and was scheduled for chemo but instead went on Abiraterone (mixed success as it’s made my liver go a bit daft so I’ve been on and off it). My PSA started at 129 and hasn’t been registerable for about 6 months now. I was given a best case/worst case prognosis and if things continue to go well I might just get to see my 4 year old Grandson become a teenager. Don’t give up hope

Thank you for your reply. How did it come about that you were changed from chemo to Abiraterone? Dad was advised chemo but if there are other options to explore we would like to. Glad to hear you are doing so well and your PSA has stayed so low, long may it continue.

Miffy
User
Posted 12 Feb 2018 at 23:09
Originally Posted by: Online Community Member

Hi Miffy,

Be careful you don’t confuse things by changing your profile name and creating a different thread.

As I’ve said (when you were positivethoughts) I’ll happy to answer anything I know the answer to.

I know how difficult it is at this stage when treatment has only just started. You say you don’t have any details of where in the bones metastasis is. Are you accompanying dad to any appointments? If so just ask, or he can. That information will be available.

My own daughter was a tower of strength to my wife and I when I was first diagnosed even though she was very scared herself. It only natural that you are worried for the future but you probably won’t get the reassurance you need until you see your dad’s treatment working.

Take care

Dave

Hi Dave,

Yes we have accompanied dad to every appointment so far. I feel like we shouldn't ask for details like that in case he doesn't want to know himself. Sometimes ignorance is bliss and knowing where the spread is or how much of it there is won't change the fact that it's happening and may just make him feel worse.

I Can feel your daughters fear and I'm sure you're very proud of her for being so strong. It's a tough time for all involved. Hopefully dad's further treatment will start soon and we can all feel more at ease that he's going nowhere any time soon!

Thanks

Miffy
User
Posted 13 Feb 2018 at 09:35

I know what you mean about ignorance being bliss. I was told where the bone mets were when I was sat on the table waiting for the biopsy! And again at the first oncology appointment all without asking. When the consultant asked if I wanted to know what issues I would be likely to face in the future I drew the line at that. His reply to that was “that’s probably the right answer as I can’t tell you for sure”

I’m off to my three monthly review - if I can get through the snow - shortly so I can let you know how I get on if you want.

Dave

User
Posted 13 Feb 2018 at 15:07
Originally Posted by: Online Community Member

I know what you mean about ignorance being bliss. I was told where the bone mets were when I was sat on the table waiting for the biopsy! And again at the first oncology appointment all without asking. When the consultant asked if I wanted to know what issues I would be likely to face in the future I drew the line at that. His reply to that was “that’s probably the right answer as I can’t tell you for sure”

I’m off to my three monthly review - if I can get through the snow - shortly so I can let you know how I get on if you want.

Dave

Yes please, keep us posted. Good luck!

Miffy
User
Posted 13 Feb 2018 at 18:51

Good news again. PSA remains undetectable all other blood results normal. Next appointment in May.

User
Posted 14 Feb 2018 at 08:36
Absolutely brilliant! Thank you for the update.
Miffy
User
Posted 14 Feb 2018 at 11:09
A friend mentioned the STAMPEDE trial and I mentioned to the Onco who thought it had merit for me so we went for it! Been back on it for 3 days again now and it’s hit me a bit for 6. Just need to get used to being on it again
User
Posted 15 Feb 2018 at 07:35
Hopefully you get used to this quickly and it's effective for you. Thanks for your reply.

Are there any more positive stories for stage 4 advanced PC?

Miffy
User
Posted 15 Feb 2018 at 13:04
Quote:
Miffy27;

I Can feel your daughters fear and I'm sure you're very proud of her for being so strong. It's a tough time for all involved. Hopefully dad's further treatment will start soon and we can all feel more at ease that he's going nowhere any time soon!

Thanks

Yes, I am immensely proud of her - and my wife and two sons. To my mind I was just dad who would help out wherever he could and have everybody’s eyes rolling at the “brilliant” jokes. It’s been extremely humbling to be shown how I’m much more than that.

I’m sure your dad feels the same way - and just wait until the hormone therapy starts messing with his emotions! And I don’t mean that at all in a negative way. I got emotional watching Early Man with my grandson yesterday!! 😀😀

Take care

Dave

 
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