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User
Posted 14 Apr 2017 at 11:56

Hi,

I've only just found this site - so, here goes.

Diagnosed February 2005 (psa 70 ish - Gleeson 9 so highly aggressive).  Prognosis was not good - 50% chance of surviving 5 years, 10% chance of 10 years.  Casodex initially, then RT, then HT (Zoladex implant quarterly).  PSA held very low (0.05 typical) for many years - currently PSA is around 0.2ish.  About 5 years ago, Bicalutamide was added as a daily pill.  I was retaining urine so about 8 years ago started nightly self cathetarising  - 3-400ml.  Prior to using catheters I was up 3, 4, 5 or even 6 times a night - now nil.  We moved to Devon about 2 years ago so, a new GP.  He changed the Zoladex to Prostap (cheaper) - WOW.  Red, swollen, tender injection site and nightly catheters were around 8-900ml.  GP changed back to Zoladex after 3 months - everything returned to normal.  Still on Zoladex, Bicalutamide and catheters. 

Currently living a good, enjoyable life (70 now) with no real side effects (got sweats and tiredness when on Prostap).  PSA remains low - so, OK 12+ years on and currently beating the prognosis.  I try to treat every day as a blessing and try to enjoy it as much as possible (don't always achieve this but, such is life - at least I'm still here).  Sex is a distant memory - but with no desires, it doesn't really bother me - I just feel sorry for my wife - I try to make up for it in other ways - she says she's fine about it.

In the early days (when I had no acceptance of it - "why me") I researched alternatives.  The only one that seemed to me to have a chance of being "right" was B17 (or laetrile or amigdalin).  The history looked right with the incidence of cancer in the Hunza valley, apricot kernals, etc..  The operation of it (how it "works") again looked feasible (confirmed by a doctor friend and one of my daughters who is a vet).  Also, the almost vitriolic comments about it on the Cancer Reasearch UK web site rang alarm bells - why so vitriolic?.  CRUK now have a much more moderate comment on B17.  So, I started taking one 500mg pill per day (I couldn't afford to take the then recommended 4 per day) and I've been taking them ever since.  Now, I make no claims for B17.  The pills MAY be a contributing factor to me still being around 12 years on.  It may be that they have been efficacious, or it may just be that they have given me hope (a bit scarce with cancer).  The Oncologist seemed curious about my survival so, about 4 years ago, he had an MRI done.  In his report on the MRI to me he told me that I had a highly aggressive cancer of the prostate that was behaving as if it were benign - he could offer no explanation for this.  I told him - "I can live with that".

So, the point of me coming onto this forum is to encourage others - some people DO live a long time with an agressive cancer - it is NOT all doom and gloom.  Statistics are just that - some do better, some worse - you could be one who does better.  So, don't give up - try to be positive - live as good a life as you can.  Also, spare a thought for your wife, partner, significant other, children, etc.  They have to live with the thought of losing you and they seem to get little sympathy or concern for this - all the sympathy and concern goes to the one with cancer.

My wife, children and I know that I may start to deteriorate next month, or whenever, but I've tried to live as good a life as I can and I've enjoyed most of it.  May you do likewise.

Mike (Micol)

User
Posted 14 Apr 2017 at 11:56

Hi,

I've only just found this site - so, here goes.

Diagnosed February 2005 (psa 70 ish - Gleeson 9 so highly aggressive).  Prognosis was not good - 50% chance of surviving 5 years, 10% chance of 10 years.  Casodex initially, then RT, then HT (Zoladex implant quarterly).  PSA held very low (0.05 typical) for many years - currently PSA is around 0.2ish.  About 5 years ago, Bicalutamide was added as a daily pill.  I was retaining urine so about 8 years ago started nightly self cathetarising  - 3-400ml.  Prior to using catheters I was up 3, 4, 5 or even 6 times a night - now nil.  We moved to Devon about 2 years ago so, a new GP.  He changed the Zoladex to Prostap (cheaper) - WOW.  Red, swollen, tender injection site and nightly catheters were around 8-900ml.  GP changed back to Zoladex after 3 months - everything returned to normal.  Still on Zoladex, Bicalutamide and catheters. 

Currently living a good, enjoyable life (70 now) with no real side effects (got sweats and tiredness when on Prostap).  PSA remains low - so, OK 12+ years on and currently beating the prognosis.  I try to treat every day as a blessing and try to enjoy it as much as possible (don't always achieve this but, such is life - at least I'm still here).  Sex is a distant memory - but with no desires, it doesn't really bother me - I just feel sorry for my wife - I try to make up for it in other ways - she says she's fine about it.

In the early days (when I had no acceptance of it - "why me") I researched alternatives.  The only one that seemed to me to have a chance of being "right" was B17 (or laetrile or amigdalin).  The history looked right with the incidence of cancer in the Hunza valley, apricot kernals, etc..  The operation of it (how it "works") again looked feasible (confirmed by a doctor friend and one of my daughters who is a vet).  Also, the almost vitriolic comments about it on the Cancer Reasearch UK web site rang alarm bells - why so vitriolic?.  CRUK now have a much more moderate comment on B17.  So, I started taking one 500mg pill per day (I couldn't afford to take the then recommended 4 per day) and I've been taking them ever since.  Now, I make no claims for B17.  The pills MAY be a contributing factor to me still being around 12 years on.  It may be that they have been efficacious, or it may just be that they have given me hope (a bit scarce with cancer).  The Oncologist seemed curious about my survival so, about 4 years ago, he had an MRI done.  In his report on the MRI to me he told me that I had a highly aggressive cancer of the prostate that was behaving as if it were benign - he could offer no explanation for this.  I told him - "I can live with that".

So, the point of me coming onto this forum is to encourage others - some people DO live a long time with an agressive cancer - it is NOT all doom and gloom.  Statistics are just that - some do better, some worse - you could be one who does better.  So, don't give up - try to be positive - live as good a life as you can.  Also, spare a thought for your wife, partner, significant other, children, etc.  They have to live with the thought of losing you and they seem to get little sympathy or concern for this - all the sympathy and concern goes to the one with cancer.

My wife, children and I know that I may start to deteriorate next month, or whenever, but I've tried to live as good a life as I can and I've enjoyed most of it.  May you do likewise.

Mike (Micol)

User
Posted 14 Apr 2017 at 15:43

Hi Micol,

Welcome to this forum and the encouraging news you give about your case. What you say about Zoladex and Prostrap is interesting. Certainly, men can react differently to these drugs which work to achieve the same end in different ways. This has been raised previously here when whether for cost saving, ease of administering or both, there was a general change from Zoladex to Prostrap. Good that you reverted to Zodadex which for you has less severe side effects. http://community.prostatecanceruk.org/posts/t10008-Zoladex-v-prostap#post120972

Not sure about your non prescribed medication but it doesn't appear to be doing any harm and may be helping, so as the old adage goes ,'don't change a winning game' (if/until you are forced to).

Edited by member 14 Apr 2017 at 15:49  | Reason: Not specified

Barry
User
Posted 17 May 2017 at 08:03

Debbie,

You mention not being sure of future life - or whatever you said.  Actually, nothing has changed - we never did know when we are going to die.  The cancer has just given us a reminder that we're not immortal - we are going to die sometime.  We seem to live as if we are immortal - I know I did.  Now each day is precious - so you could argue that the cancer has given us an advantage over non-cancer people in that we really value the life we have, or try to.

Wow!  Not much positive comes out of having cancer, but maybe this is a little positive thing in a world that can be very dark.

Keep hanging on in there.

Mike

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User
Posted 14 Apr 2017 at 14:03
Hi Mike

Welcome to this brilliant site. Just want to say how much I enjoyed reading your inspiring post. It really did make me feel so much better about our situation. My Husband was diagnosed almost a year ago with Gleason 9 highly aggressive prostate cancer and we have been and are still on a rollercoaster ride. However with all he has been through he remains so positive and gets on with his life, enjoying each day while he is feeling well and long may this last. You are right about the rest of us in the family, myself and our children and grandchildren we are all affected and have to live with the not knowing what's going to happen in the future. Hope you continue to do well for many years to come.

Debbie x

User
Posted 14 Apr 2017 at 14:37

Hi, Micol.

Thanks for your generosity.

Sharing your story shows the kind of person you are. Not only do you deserve the victory of winning this fight but you are also going to succeed. After so many years on this journey you know how to drive and I feel you are still going to be telling beautiful things to people around you and enjoying life. As the consultant first said to OH, "you will die from any other thing than this". You will die from life itself, as everyone does, years from now.

I'd like to be able to describe all the feelings inside me but my English is not good enough, so I'll just say, COME ON, MICOL.

I wish all the best to you.

Hug,

Lola

User
Posted 14 Apr 2017 at 15:02

Thank you for posting your story Micol.

It is bound to be reassuring to others on the site (as our two ladies above have told you)

We try to tell new people that it isn't always doom and gloom, even when incurable, but if you aren't a member in that category then you don't have the necessary history to prove the point.

You do and you've done it in spades.

Long may it last for you

We can't control the winds - but we can adjust our sails
User
Posted 14 Apr 2017 at 15:43

Hi Micol,

Welcome to this forum and the encouraging news you give about your case. What you say about Zoladex and Prostrap is interesting. Certainly, men can react differently to these drugs which work to achieve the same end in different ways. This has been raised previously here when whether for cost saving, ease of administering or both, there was a general change from Zoladex to Prostrap. Good that you reverted to Zodadex which for you has less severe side effects. http://community.prostatecanceruk.org/posts/t10008-Zoladex-v-prostap#post120972

Not sure about your non prescribed medication but it doesn't appear to be doing any harm and may be helping, so as the old adage goes ,'don't change a winning game' (if/until you are forced to).

Edited by member 14 Apr 2017 at 15:49  | Reason: Not specified

Barry
User
Posted 15 Apr 2017 at 09:28

HI mike and welcome ,my OH is also Gleason 9 with node spread and after 6 sessions of chemo and continued hormones has seen his PSA drop to undetectable for the last year .We try to live a positive life and reading posts such as yours really helps .
Thankyou and best wishes for all our futures
Debby

User
Posted 16 Apr 2017 at 23:12

Hi Micol,

That's a great post and as a fellow Gleason 9 gives me lots of cheer! I believe, despite all, that with all the progress with treatments and dx 2 years ago that I intend to live a full and long future, for me and my girls! Lots of lumps and bumps along the way but that's life! Thanks for the post!

User
Posted 17 Apr 2017 at 00:38
Hi Micol

Thanks for info. All the best

Gordon

User
Posted 17 May 2017 at 08:03

Debbie,

You mention not being sure of future life - or whatever you said.  Actually, nothing has changed - we never did know when we are going to die.  The cancer has just given us a reminder that we're not immortal - we are going to die sometime.  We seem to live as if we are immortal - I know I did.  Now each day is precious - so you could argue that the cancer has given us an advantage over non-cancer people in that we really value the life we have, or try to.

Wow!  Not much positive comes out of having cancer, but maybe this is a little positive thing in a world that can be very dark.

Keep hanging on in there.

Mike

 
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