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Positive stories please!

User
Posted 24 Jan 2018 at 16:08
Hi, my dad was diagnosed with prostate cancer in December due to extremely high psa of 276. He has since had mri, bone scan, and this morning a biopsy. Dr confirmed today that it was what he initially thought. Although we don't have results yet we are worried for the future. Thoughts of spread to bones and possibly organs are haunting me. Any stories of advanced prostate cancer success stories would be much appreciate during this horrible wait for results.

Thanks all.

Edited by member 24 Jan 2018 at 18:02  | Reason: Not specified

Miffy
User
Posted 28 Jan 2018 at 22:46
Hi ,

I don’t look in as often these days but sometimes a thread catches my eye or my heart I am not sure which .

Ok so bad news for us is that Trevor passed away in Nov ( you can click on peoples avatar to read there stories ) the more positive news is he survived and not just survived but lived a good and fulfilling four and a half years after diagnosis .

His initial PSA was 13000 with spread to his whole torso , so even when the news is bad it’s not always the end , sometimes it’s a new beginning.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 26 Jan 2018 at 18:54
Hi , sorry you are here.

You don't say how old your dad is or how active he is so I may not be comparing apples with apples but I was diagnosed with advanced prostate cancer in November 2014 age 49.

Once I got over a couple of months emotional denial I decided to push myself and make the most of it. I came to the conclusion that no matter how justified, a day feeling sad was a wasted day.

I turned my energy into running, raising money for Prostate Cancer UK ( the charity whose forum we use and benefit greatly from), spreading awareness and trying to let people understand just how important living for the day is , cancer or no cancer.

I ran two marathons on chemotherapy, have completed the marathon des sables (250k across the Sahara)twice plus a bunch of similar races and in 5 weeks am off to the arctic for a 380 mile race unsupported pulling a sledge, it will be -50c or more at times ( then back to do the MDS, +50c, for a third time 2 weeks later).

So whilst everyone does not have the ability to do what I do, it is possible to do so much even with advanced prostate cancer, I never ran that far before I had cancer.

You will of course know more when you get dads results but before and after that don't let a preconception of prostate cancer stop your dad doing anything.

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 27 Jan 2018 at 08:40

Hi, my husband on diagnosis was aged 61 in 2006 Gleason 9. T3B and had spread to the seminal vesculars. he is 74 this year , he has had RT and has been on and off hormones ever since. he goes to the gym 3 times a week and golf twice a week, his cancer is uncurable but he has never been "ill" with it in all that time. Stay positive and good luck.

all the best Barbara

User
Posted 24 Jan 2018 at 21:28

It is good to remain positive and we have had men with advanced PCa on this forum who have been with us for many years. This possibility is increased by further down the line treatments that are being introduced or being trialed. Meanwhile, much depends on how Dad responds to his treatment(s) which varies from man to man. Hope it goes well for Dad.

Barry
User
Posted 25 Jan 2018 at 09:54

Just a quick reply for now but will be happy to pass on any info if you want. I was diagnosed with advanced prostate cancer in July 2016 with mets to upper spine and right hip. I am on HT and had early chemotherapy. When discussing my situation and treatment plan my consultant said that the aim was for me to have a long and reasonably healthy life. Nearly 18 months on I get a bit tired at times and am not as strong as I was but otherwise life is good. I hope you can take this as some of the positive you are looking for.

All the best to you and your dad.

Dave

User
Posted 26 Jan 2018 at 09:22

Another of my consultants comments regarding the spread to my bones was that although it was bad news inasmuch as it wasn’t what I wanted to hear it was not a disaster.

Have you been made aware that if the cancer does shows up in other areas then the treatment that your dad is given will treat those areas as well?

Dave

Edited by member 26 Jan 2018 at 09:23  | Reason: Not specified

User
Posted 26 Jan 2018 at 18:23

Ask to view the scans. That will force the consultant to go through the instances of spread and give you the time to ask questions about treatment options.

AC

User
Posted 27 Jan 2018 at 01:00

Hi
It's a worrying time I know.
I was diagnosed in December 2014 and by the time I was staged and told that the PCa had spread to my hip the psa had risen to 235.
I was put onto Ht (prostap) and told I could not have RT or surgery because of the spread.
Then in February 2015 I joined a Stampede trial of enzalutamide.
I'm still on both drugs and my psa has been around .05 for about 33 months.
I feel ok, I go hiking and am trying to get back into running again. I ride a motorcycle as well. Exercise and diet are so important. Life is still good.
I hope all goes ok with your Dad
Keep in touch.
Paul

Edited by member 27 Jan 2018 at 01:01  | Reason: Not specified

User
Posted 27 Jan 2018 at 14:06
Originally Posted by: Online Community Member

Hi, my husband on diagnosis was aged 61 in 2006 Gleason 9. T3B and had spread to the seminal vesculars. he is 74 this year , he has had RT and has been on and off hormones ever since. he goes to the gym 3 times a week and golf twice a week, his cancer is uncurable but he has never been "ill" with it in all that time. Stay positive and good luck.

all the best Barbara

What a positive result for your husband and all the family. Initial diagnosis is so scary and the wait for results is like nothing I've ever experienced but hearing stories like yours fills me full of faith in the treatments that are available. Its fantastic that he keeps active and has been doing well for such a long time after diagnosis. Thanks for your reply.

Miffy
User
Posted 28 Jan 2018 at 08:04

Hi 2 years on and being diagnosed incurable PSA 23 Gleason 9 ,spread to lymph nodes .Gary has had early chemo which luckily gave him very few side effects and he continued to work as he still does now .it was the oncologist who offered him the stampede trial and he was lucky enough to get abi / Enzo arm j which again he has been fortunate to have manageable side effects ,mainly fatigue and loss of strength .PSA has been undetectable for over 18 months (app on tues ,so fingers crossed) even if your OH doesn’t get the arm of the trial he would like ( it’s up to a computer ) it’s worth being on it just for the extra monitoring,Gary has blood tests every 4 weeks and oncologist every 8 weeks .even if after being on trial for a few weeks and find it’s not for him they would still monitor him as if he was .
Best wishes
Debby

User
Posted 28 Jan 2018 at 19:52

I can obviously only speak for my own treatment centre (Beatson West Of Scotland Cancer Centre) but they brought the subject of trials up as soon as I started treatment so it was a case of me being asked rather than the other way around. I’m on the control group for Arm K which is looking at whether Metformin (used for diabetes) will be any benefit. So although I don’t Metformin I do have regular blood tests and checkups.

User
Posted 29 Jan 2018 at 08:39
Originally Posted by: Online Community Member
Hi ,

I don’t look in as often these days but sometimes a thread catches my eye or my heart I am not sure which .

Ok so bad news for us is that Trevor passed away in Nov ( you can click on peoples avatar to read there stories ) the more positive news is he survived and not just survived but lived a good and fulfilling four and a half years after diagnosis .

His initial PSA was 13000 with spread to his whole torso , so even when the news is bad it’s not always the end , sometimes it’s a new beginning.

BFN

Julie X

Hi Julie,

So sorry to hear of your loss. Thank you so much for taking the time to get in touch. Everyone on here is so helpful and I appreciate each and every reply. It is comforting to hear your stories and your wonderful positive outlooks. Its so easy to get weighed down with the worry that it takes someone like you to come along and look at things from a different perspective.

Thank you

Carly x

Miffy
Show Most Thanked Posts
User
Posted 24 Jan 2018 at 21:28

It is good to remain positive and we have had men with advanced PCa on this forum who have been with us for many years. This possibility is increased by further down the line treatments that are being introduced or being trialed. Meanwhile, much depends on how Dad responds to his treatment(s) which varies from man to man. Hope it goes well for Dad.

Barry
User
Posted 25 Jan 2018 at 09:54

Just a quick reply for now but will be happy to pass on any info if you want. I was diagnosed with advanced prostate cancer in July 2016 with mets to upper spine and right hip. I am on HT and had early chemotherapy. When discussing my situation and treatment plan my consultant said that the aim was for me to have a long and reasonably healthy life. Nearly 18 months on I get a bit tired at times and am not as strong as I was but otherwise life is good. I hope you can take this as some of the positive you are looking for.

All the best to you and your dad.

Dave

User
Posted 25 Jan 2018 at 13:14

Hi Dave,

Thanks for your reply. I know it's impossible to call until we get all of the results but the possibility of high Gleason and spread to other areas is very worrying. It'll be a long 2 week wait but hearing stories like yours definitely helps. Glad to hear you are keeping well. Hopefully continue to do so for many years!

Thank you Barry for your words of support.

Miffy
User
Posted 26 Jan 2018 at 09:22

Another of my consultants comments regarding the spread to my bones was that although it was bad news inasmuch as it wasn’t what I wanted to hear it was not a disaster.

Have you been made aware that if the cancer does shows up in other areas then the treatment that your dad is given will treat those areas as well?

Dave

Edited by member 26 Jan 2018 at 09:23  | Reason: Not specified

User
Posted 26 Jan 2018 at 09:43
We are aware of that but only through what we have been reading. The consultant didn't shed much light on it to be honest, we were kind of told and then left to take it in. We haven't seen him since that day back in December so don't even know for sure where it is. My dad has an appointment in a couple of weeks which we will all be attending and I'm hoping then that we will get some reassurance. Treatment is very effective on the spread as well then, that is good to know! Thank you.
Miffy
User
Posted 26 Jan 2018 at 18:23

Ask to view the scans. That will force the consultant to go through the instances of spread and give you the time to ask questions about treatment options.

AC

User
Posted 26 Jan 2018 at 18:54
Hi , sorry you are here.

You don't say how old your dad is or how active he is so I may not be comparing apples with apples but I was diagnosed with advanced prostate cancer in November 2014 age 49.

Once I got over a couple of months emotional denial I decided to push myself and make the most of it. I came to the conclusion that no matter how justified, a day feeling sad was a wasted day.

I turned my energy into running, raising money for Prostate Cancer UK ( the charity whose forum we use and benefit greatly from), spreading awareness and trying to let people understand just how important living for the day is , cancer or no cancer.

I ran two marathons on chemotherapy, have completed the marathon des sables (250k across the Sahara)twice plus a bunch of similar races and in 5 weeks am off to the arctic for a 380 mile race unsupported pulling a sledge, it will be -50c or more at times ( then back to do the MDS, +50c, for a third time 2 weeks later).

So whilst everyone does not have the ability to do what I do, it is possible to do so much even with advanced prostate cancer, I never ran that far before I had cancer.

You will of course know more when you get dads results but before and after that don't let a preconception of prostate cancer stop your dad doing anything.

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 26 Jan 2018 at 21:04
How inspirational! My dad is a young 65, has always enjoyed walking although I think a marathon across the Sahara might be pushing it! 😁 it's great to hear you are still enjoying life years after being diagnosed. These are the kinds of stories I'm looking for! How advanced was your diagnosis if you don't mind me asking and where was the spread?

Thanks so much to you all for replying, it's definitely a help.

Miffy
User
Posted 27 Jan 2018 at 01:00

Hi
It's a worrying time I know.
I was diagnosed in December 2014 and by the time I was staged and told that the PCa had spread to my hip the psa had risen to 235.
I was put onto Ht (prostap) and told I could not have RT or surgery because of the spread.
Then in February 2015 I joined a Stampede trial of enzalutamide.
I'm still on both drugs and my psa has been around .05 for about 33 months.
I feel ok, I go hiking and am trying to get back into running again. I ride a motorcycle as well. Exercise and diet are so important. Life is still good.
I hope all goes ok with your Dad
Keep in touch.
Paul

Edited by member 27 Jan 2018 at 01:01  | Reason: Not specified

User
Posted 27 Jan 2018 at 08:40

Hi, my husband on diagnosis was aged 61 in 2006 Gleason 9. T3B and had spread to the seminal vesculars. he is 74 this year , he has had RT and has been on and off hormones ever since. he goes to the gym 3 times a week and golf twice a week, his cancer is uncurable but he has never been "ill" with it in all that time. Stay positive and good luck.

all the best Barbara

User
Posted 27 Jan 2018 at 14:02
Originally Posted by: Online Community Member

Hi
It's a worrying time I know.
I was diagnosed in December 2014 and by the time I was staged and told that the PCa had spread to my hip the psa had risen to 235.
I was put onto Ht (prostap) and told I could not have RT or surgery because of the spread.
Then in February 2015 I joined a Stampede trial of enzalutamide.
I'm still on both drugs and my psa has been around .05 for about 33 months.
I feel ok, I go hiking and am trying to get back into running again. I ride a motorcycle as well. Exercise and diet are so important. Life is still good.
I hope all goes ok with your Dad
Keep in touch.
Paul

Hi Paul,

This is so good to hear! How do we go about trials? Does the urologist suggest this or is it something we need to chase up ourselves? I'm hopeful whichever treatment he receives works as well for him as yours has for you! Its great to hear you feel ok as well as I just want my dad to be able to enjoy life as normal as possible. Thanks for your reply. Much appreciated. Keep in touch.

Miffy
User
Posted 27 Jan 2018 at 14:06
Originally Posted by: Online Community Member

Hi, my husband on diagnosis was aged 61 in 2006 Gleason 9. T3B and had spread to the seminal vesculars. he is 74 this year , he has had RT and has been on and off hormones ever since. he goes to the gym 3 times a week and golf twice a week, his cancer is uncurable but he has never been "ill" with it in all that time. Stay positive and good luck.

all the best Barbara

What a positive result for your husband and all the family. Initial diagnosis is so scary and the wait for results is like nothing I've ever experienced but hearing stories like yours fills me full of faith in the treatments that are available. Its fantastic that he keeps active and has been doing well for such a long time after diagnosis. Thanks for your reply.

Miffy
User
Posted 27 Jan 2018 at 17:48
Hi , my Gleason score was (is?) 9, the spread was to my lymph glands but outside of the pelvic area.

I would be lying if I didn't say I feel a bit more tired nowadays but to put it in perspective, I have just done two 9 hour back to back training sessions so I guess that's a good excuse!

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 27 Jan 2018 at 18:23
When I was originally diagnosed I was with a urologist.

He said that I might be able to join the stampede trial on one of the arms.

I accepted to join and was lucky enough to get the arm with the enzalutamide (+HT)

From then on I've only seen the oncologist.

There are a number of trials available and you need to ask your urologist.

Hope this helps

Paul

User
Posted 28 Jan 2018 at 08:04

Hi 2 years on and being diagnosed incurable PSA 23 Gleason 9 ,spread to lymph nodes .Gary has had early chemo which luckily gave him very few side effects and he continued to work as he still does now .it was the oncologist who offered him the stampede trial and he was lucky enough to get abi / Enzo arm j which again he has been fortunate to have manageable side effects ,mainly fatigue and loss of strength .PSA has been undetectable for over 18 months (app on tues ,so fingers crossed) even if your OH doesn’t get the arm of the trial he would like ( it’s up to a computer ) it’s worth being on it just for the extra monitoring,Gary has blood tests every 4 weeks and oncologist every 8 weeks .even if after being on trial for a few weeks and find it’s not for him they would still monitor him as if he was .
Best wishes
Debby

User
Posted 28 Jan 2018 at 19:52

I can obviously only speak for my own treatment centre (Beatson West Of Scotland Cancer Centre) but they brought the subject of trials up as soon as I started treatment so it was a case of me being asked rather than the other way around. I’m on the control group for Arm K which is looking at whether Metformin (used for diabetes) will be any benefit. So although I don’t Metformin I do have regular blood tests and checkups.

User
Posted 28 Jan 2018 at 22:46
Hi ,

I don’t look in as often these days but sometimes a thread catches my eye or my heart I am not sure which .

Ok so bad news for us is that Trevor passed away in Nov ( you can click on peoples avatar to read there stories ) the more positive news is he survived and not just survived but lived a good and fulfilling four and a half years after diagnosis .

His initial PSA was 13000 with spread to his whole torso , so even when the news is bad it’s not always the end , sometimes it’s a new beginning.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 29 Jan 2018 at 08:39
Originally Posted by: Online Community Member
Hi ,

I don’t look in as often these days but sometimes a thread catches my eye or my heart I am not sure which .

Ok so bad news for us is that Trevor passed away in Nov ( you can click on peoples avatar to read there stories ) the more positive news is he survived and not just survived but lived a good and fulfilling four and a half years after diagnosis .

His initial PSA was 13000 with spread to his whole torso , so even when the news is bad it’s not always the end , sometimes it’s a new beginning.

BFN

Julie X

Hi Julie,

So sorry to hear of your loss. Thank you so much for taking the time to get in touch. Everyone on here is so helpful and I appreciate each and every reply. It is comforting to hear your stories and your wonderful positive outlooks. Its so easy to get weighed down with the worry that it takes someone like you to come along and look at things from a different perspective.

Thank you

Carly x

Miffy
User
Posted 01 Feb 2018 at 11:46

Hi, my husband too is on Stampede Trial Arm J and has been since November 2014.  He is doing very well, bit tired sometimes, but still working aged 72, 3 days a week.  His PSA was 772.5 back then and is still now zero which is fantastic.

User
Posted 01 Feb 2018 at 16:27
Originally Posted by: Online Community Member
Hi, my husband too is on Stampede Trial Arm J and has been since November 2014. He is doing very well, bit tired sometimes, but still working aged 72, 3 days a week. His PSA was 772.5 back then and is still now zero which is fantastic.

Hi there, this is great to read. Such great results and lovely to hear he is still working and able to keep things relatively normal! Had your husbands cancer spread outside of the Prostate or was it contained?

Thanks for replying x

Miffy
 
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