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Aftermath of the first meeting with oncologist

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User
Posted 23 Jan 2019 at 21:51

had a bit of a set back at first oncologist meeting today we had orginally thought the mets were only in his lower spine turns out theres mets on his shoulder, one rib and thora cic spine. 

 

they are giving him hormone treatment for 2 months before starting chemo, 

 

not really sure what to think of this, dads gleson score is 7. in my head this all sounds bad and then i read on  here  other stories on here and think dads isnt as bad as some who are now years after inital diagnose. 

A 

 

 

User
Posted 24 Jan 2019 at 20:52
Hi Amy ,my OH Gary has been on the stampede trial for nearly three years ,he was allocated arm j (abi/Enzo combination),as Davywls has said the extra monitoring is very reassuring. 4 weekly bloods and 8 weekly onco appointments. We are lucky as we live 10 mins from hospital and Gary’s work are great at allowing him the time off . I believe that if you choose the trial and decide later that it’s not for you or it doesn’t agree with you they will still monitor you for their records .

At the end of the day you’ve nothing to lose .

Gary’s PSA has been undetectable for 2 1/2 years and has lead an almost normal life .

Hope this helps

Best wishes

Debby

User
Posted 22 May 2019 at 23:58

Originally Posted by: Online Community Member

Hello

yes it’s really hard to hear news like that but the HT and chemo should have good effects on the mets. my hubby is a gleason 10 with spread to lymph and bone and was diagnosed more than eight years ago. The progress of this disease is individual but there is hope and if your dad is reasonably healthy he will surprise you.

Sorry to barge in. I have been trying to convince the admin that there is problem when trying to edit my own profile.  I now find, purely by accident,  that I can edit someone else’s post though.  That can’t be right!

Dave

 

please let us know how you all get on.

love Devonmaid xxx

 

Edited by member 23 May 2019 at 00:08  | Reason: To show there is is something wrong with the website editing procedures

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User
Posted 24 Jan 2019 at 08:04

Hi Osullivan, I am sorry to read there are a few more mets than originally thought.

It is common to get mpre information at these appointments snd it can take us by surprise but your Dad’s oncologist seems right on top of things.

Your Dad’s treatment plan is still the right one and the best way to tackle his prostate cancer.

Best wishes, 

Ian

Ido4

User
Posted 24 Jan 2019 at 09:01

Hello

yes it’s really hard to hear news like that but the HT and chemo should have good effects on the mets. my hubby is a gleason 10 with spread to lymph and bone and was diagnosed more than eight years ago. The progress of this disease is individual but there is hope and if your dad is reasonably healthy he will surprise you.

please let us know how you all get on.

love Devonmaid xxx

 

User
Posted 24 Jan 2019 at 11:05

Hey 

 

thabks for the response . i think you are correct his treatment plan is still the best for this time. I think for us it was more the shock of more information having just got our head around the first set of information . 

 

Amy 

User
Posted 24 Jan 2019 at 11:07

Hey 

 

wow. thats amazing to hear how your hubby is doing, its stories like that we need just now. 

Will take you updated on what happens next. 

 

Amy 

User
Posted 24 Jan 2019 at 13:28

Dad has also been offered a place on the stampede trial for the metaformin arm, i feel he has nothing to lose by doing this , hes undecided , anyone on hear had a decison like this to make? 

 

amy 

User
Posted 24 Jan 2019 at 20:12

Hi,

Yes I have been on the Metformin trial for just over two years. I am in Arm A, that is the control group so I’m not taking Metformin. I get regular check ups, extra blood tests, saliva tests and a questionnaire to fill out every three months.

If your dad decides to volunteer for the trial there will be a few extra tests (bloods and physical condition) and if he is eligible the selection for which group is done by computer and is split roughly 50 - 50.

I’m happy to answer any other questions I might know the answer to.

Dave

Edited by member 24 Jan 2019 at 20:17  | Reason: additional text

User
Posted 24 Jan 2019 at 20:52
Hi Amy ,my OH Gary has been on the stampede trial for nearly three years ,he was allocated arm j (abi/Enzo combination),as Davywls has said the extra monitoring is very reassuring. 4 weekly bloods and 8 weekly onco appointments. We are lucky as we live 10 mins from hospital and Gary’s work are great at allowing him the time off . I believe that if you choose the trial and decide later that it’s not for you or it doesn’t agree with you they will still monitor you for their records .

At the end of the day you’ve nothing to lose .

Gary’s PSA has been undetectable for 2 1/2 years and has lead an almost normal life .

Hope this helps

Best wishes

Debby

User
Posted 22 May 2019 at 23:58

Originally Posted by: Online Community Member

Hello

yes it’s really hard to hear news like that but the HT and chemo should have good effects on the mets. my hubby is a gleason 10 with spread to lymph and bone and was diagnosed more than eight years ago. The progress of this disease is individual but there is hope and if your dad is reasonably healthy he will surprise you.

Sorry to barge in. I have been trying to convince the admin that there is problem when trying to edit my own profile.  I now find, purely by accident,  that I can edit someone else’s post though.  That can’t be right!

Dave

 

please let us know how you all get on.

love Devonmaid xxx

 

Edited by member 23 May 2019 at 00:08  | Reason: To show there is is something wrong with the website editing procedures

User
Posted 23 May 2019 at 09:22
Thanks Lyn, I realised that as soon as I posted it.

What happens is that I get two boxes, one each for bio and latest news. They are in editable format but only the first few lines are visible and I am unable to scroll to access the rest. Carol from admin sensibly suggested clearing cache or trying a different browser. I have done that and used a different device as well but to no avail.

I can’t help thinking if it’s something simple that I haven’t cottoned on to.

Cheers

Dave

User
Posted 23 May 2019 at 10:17
Okay - best to move the conversation off osullivan's thread as it isn't relevant to him.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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