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User
Posted 16 Oct 2016 at 18:49
It's been a couple of months since I last left a message. My dad had just been diagnosed with advanced aggressive prostate which has spread to his bones 4:5 score and we are all scared as hell! Although since that day we have just been taking each day as it comes dad started on hormone injections and a monthly infusion to help with his bones. However he seems to be suffering as we expected with serve hot flushes and mum said she's found him crying a couple of times which is so, distressing to see as he is such a strong man and always there for us all. I guess this is also a side effect of the hormone treatment, feeling low. What I guess we want to know and no one can tell is what is the outlook our oncologist wouldn't comment just said you could go out tomorrow and get run over by a bus. But dad seems to be going down hill we have our meeting in a couple of weeks to see how things stand. I just want to make it go away. I try not to think the worst but it's always on my mind. I keep positive in front of dad, but I wish there was something more I could do. Any ideas?

Any one been in the same boat high Gleeson aggressive and got a positive story to tell, any comments gratefully received,

Manda x

User
Posted 16 Oct 2016 at 21:08
Hi Manda,

I hope you can take a positive from our story , Trevor was diagnosed in May 2013 with a high PSA of 13000 our road has been rocky with many ups and downs he has multiple bone mets so the prognosis was fairly dire and I won't lie it still is buts that my point it still is . We have had various HT treatments and he is now hormone restistant and on Abbiraterone and just about to move onto Raduim 223 .

The point of my response is we are 3 -and half years on from our doom diagnosis . So never despair there is so many new treatments out there . Look out for my thread on Turmeric.

Stay strong

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 Oct 2016 at 18:49
It's been a couple of months since I last left a message. My dad had just been diagnosed with advanced aggressive prostate which has spread to his bones 4:5 score and we are all scared as hell! Although since that day we have just been taking each day as it comes dad started on hormone injections and a monthly infusion to help with his bones. However he seems to be suffering as we expected with serve hot flushes and mum said she's found him crying a couple of times which is so, distressing to see as he is such a strong man and always there for us all. I guess this is also a side effect of the hormone treatment, feeling low. What I guess we want to know and no one can tell is what is the outlook our oncologist wouldn't comment just said you could go out tomorrow and get run over by a bus. But dad seems to be going down hill we have our meeting in a couple of weeks to see how things stand. I just want to make it go away. I try not to think the worst but it's always on my mind. I keep positive in front of dad, but I wish there was something more I could do. Any ideas?

Any one been in the same boat high Gleeson aggressive and got a positive story to tell, any comments gratefully received,

Manda x

User
Posted 17 Oct 2016 at 01:57
Hi Manda,

Yes Trevor does still have hot flushes and he still has the Zoladex implants every 12 weeks the hot flushes are not as frequent as they were in the beginning . Trevor also has other health issues heart attacks and a stroke to add in the mix if you click on ours or others pic or avatars our story's and bios will come up .

Trevor's PSA has been down to 15 at its lowest and is now back 2340 but as I said there are so many new treatments available .

All is not lost for you I remember those early days and how scared we were , but that was over 3 years ago and Trevor is still doing the school run twice a day and functioning very well. Ok not running marathons like Kevin but he couldn't do that prior to be diagnosed . 😉

BFN

Julie

NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 Nov 2016 at 20:37
Hi Manda,

Firstly, sorry to hear about your news. Like yourself, my dad was diagnosed with metastatic prostate cancer with spread to lymph nodes and bones, he also had an incidental finding of tumour on his lung during the scans, this all began June this year. He had an operation to remove the tumour he then started on hormone injections and now chemotherapy.

I wanted to write to you to say that strangely, with all going on it does get easier to cope with it but at the same time, it's okay to have those down days, they make the better days all the more worth while!

When we found out and got our heads around it, as a family we all just said '' we are entering a journey now, take each day as it comes and hang on to any positive news you will receive along the way''

A positive mind set and the support off wonderful family and friends is enough to keep anyone high in the lowest of moments.

I send your dad, yourself and your family so much strength and positive thoughts and I hope you find some strength from this forum also.

There's so many wonderful staff at the hospitals and so many more treatments which have developed over time and no doubt things will keep on developing. He's in wonderful hands. Keep posting.

''You matter, we care, you are not alone''

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User
Posted 16 Oct 2016 at 21:08
Hi Manda,

I hope you can take a positive from our story , Trevor was diagnosed in May 2013 with a high PSA of 13000 our road has been rocky with many ups and downs he has multiple bone mets so the prognosis was fairly dire and I won't lie it still is buts that my point it still is . We have had various HT treatments and he is now hormone restistant and on Abbiraterone and just about to move onto Raduim 223 .

The point of my response is we are 3 -and half years on from our doom diagnosis . So never despair there is so many new treatments out there . Look out for my thread on Turmeric.

Stay strong

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 Oct 2016 at 21:19
Thank you Julie it's good to hear and I wish you both well. It's not easy for anyone concerned but being there for one another is important and staying positive I just worry it may of spread quicker than we thought as we were told it's aggressive. And of course just the thought of going back into the room you heard those words, again. Did your husband suffer the hot flushes etc for all the time he was on it or did his body get use to it?

Thank you for taking the time to reply

Best wishes

Manda x

User
Posted 16 Oct 2016 at 21:26

Hi Manda, I am so sorry to read about your Dad.
I was diagnosed Gleason 9, 2 years ago, spread to my lymphs T4 n1m1a. In the first year I had chemo and radiotherapy, I was started on hormone injections that I still carry on with now. I cried a lot and still do a bit but not so much, I am not sure if it is the hormone injections or just sad about my shorter future. Hot flushes are the norm for most men and will stay forever however one gets used to them a bit and better at wearing the right things to minimise the effect.
BUT there is lots of good things that still happen and whilst there are no guarantees I hope my story can be shared to give you all hope.
I ran 2 marathons whilst in chemo, since then I have run a 257 kilometre race accross the Sahara plus many other long distance multi day races. I have a positive outlook and life is in many ways normal and in some better than pre cancer, my bad days mentally get less as time goes on and I love and enjoy each day as it comes. My treatment got my PSA from342 to the current 0.19, my lymphs shrank back to pre cancer levels having been 5 times bigger on diagnosis and there is no reason to believe I will not have more good time ahead.
The hardest thing for you all right now is to believe in any future but for most men there is time even when you start from where your dad is now.
They know so much now to slow and reduce the cancer on diagnosis , he should be discussing early chemo ( docetaxl) with his oncologist now as this is proven to work better for most men. Whilst chemo is not great fun the negative effects are short lived and there is no reason to believe that most days will be generally normal whilst on it.
There are many men here Gleason 9 with bone spread who have been going well for years. The stats that you can read are all based on historic data, times have moved on so well now.
Keep posting, perhaps try to get dad to as well as the support here is amazing, it's great to be able to ask questions, rant or cry depending on how you are at the time, it has helped me on so many occasions and I am so much stronger now than I was 18 months ago thanks in part to the forum.
My thoughts are with you and your family but please do not give up.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 16 Oct 2016 at 21:35
Thank you so much for your kind words and encouragement. It's such a dark place to be and although one wants to look forward, they dar'nt think they are allowed. I make sure I go to all the appointments and will certainly mention about the chemo although dad seems so week at the moment I don't know if he could face it.

But as you say one must look to the future and reading such wonderfully inspirational stories such as yours gives one hope.

With best wishes and thanks

Manda x

User
Posted 17 Oct 2016 at 01:57
Hi Manda,

Yes Trevor does still have hot flushes and he still has the Zoladex implants every 12 weeks the hot flushes are not as frequent as they were in the beginning . Trevor also has other health issues heart attacks and a stroke to add in the mix if you click on ours or others pic or avatars our story's and bios will come up .

Trevor's PSA has been down to 15 at its lowest and is now back 2340 but as I said there are so many new treatments available .

All is not lost for you I remember those early days and how scared we were , but that was over 3 years ago and Trevor is still doing the school run twice a day and functioning very well. Ok not running marathons like Kevin but he couldn't do that prior to be diagnosed . 😉

BFN

Julie

NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 Oct 2016 at 12:29

Hi Manda,

I was dx last year with Gleeson 9 with mets in bones and have gone through the HT and chemo and in April confirmed in was in remission and had a PSA of 4.7, down from 294.

Its a rough journey and on the run up to chemo would fine myself in a quiet place having a wee weep which can come on unexpected. I found that talking about it to my OH and family a great help and would try not to bore them, although they never would. Its always worth speaking to him about it, nothing major but just even the wee things. Hot flushes are always happening and mood swings with highs and lows can come and go, but everyone around me was very understanding! OH always knew when to make a joke of it when I needed it. I've had a couple of friends with various cancers over the last year and you know once treatment starts and continues, it focus's the mind for the better.

Good luck

Steven

User
Posted 17 Oct 2016 at 20:29
Thank you Steven

It's a hard place to be for all concerned it sounds like dad you are lucky to have a supporting family and friends. I guess taking each day is the only way to go but so easier said than done. Good wishes to you and your family keep strong and thank you for taking the time to reply.

Manda x

User
Posted 17 Oct 2016 at 20:39

hmm hot flushs I have been using sage leaf tablets to help me, wasn't sure until I stopped them for awhile and the hot flushs returned, now using them again and they have got less

regards

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 31 Oct 2016 at 18:02

Hi Manda
My husband was diagnosed nearly a year ago with a Gleason score of 10 T4 N1 m1 aggressive PC spread to lymph nodes neck of bladder bones etc hearing the outcome was awful you think that's it but nearly a year on he's had 6 rounds of chemo and is on 3 monthly hormone injections his starting PSA was 93 and it's now down to 0.088 which is fantastic he took 6 months off work he went back in June and is now back doing his three shifts mornings afternoons & nights he's doing really well so don't give up hope he will be 60 in November
Yorkshire lass

User
Posted 01 Nov 2016 at 20:37
Hi Manda,

Firstly, sorry to hear about your news. Like yourself, my dad was diagnosed with metastatic prostate cancer with spread to lymph nodes and bones, he also had an incidental finding of tumour on his lung during the scans, this all began June this year. He had an operation to remove the tumour he then started on hormone injections and now chemotherapy.

I wanted to write to you to say that strangely, with all going on it does get easier to cope with it but at the same time, it's okay to have those down days, they make the better days all the more worth while!

When we found out and got our heads around it, as a family we all just said '' we are entering a journey now, take each day as it comes and hang on to any positive news you will receive along the way''

A positive mind set and the support off wonderful family and friends is enough to keep anyone high in the lowest of moments.

I send your dad, yourself and your family so much strength and positive thoughts and I hope you find some strength from this forum also.

There's so many wonderful staff at the hospitals and so many more treatments which have developed over time and no doubt things will keep on developing. He's in wonderful hands. Keep posting.

''You matter, we care, you are not alone''

 
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