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Adjusting to a new normal of advanced prostate cancer

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User
Posted 18 Oct 2017 at 23:41
I'm new here...and adjusting to our new normal...in 2013 my husband was diagnosed Gleason 10 with a PSA of 28...no symptoms just a high PSA ...it was out in the seminal vesicles and we chose calypso radiation and two years of hormone treatments. Things quieted down and psa's stayed low. Then this past June his PSA went to 7...then ...18...28...scans and tests were done all summer (one bone scan which is just a clinical trial in the states but fully approved in Europe) and it was found in the shoulder bone and a lymph.
We are told there are treatment choices but no cure. 18-36 months. I scour the internet reading about trials, immunotherapy, there has to be something more??? Currently he is being injected once again with lupron with one month shots working up to three month shots. Chemo is on the horizon ( zytiga) --clinical trials aren't offered I'm told until he "fails" at the hormone treatment but I can't help but believe that a trial could be more effective with less cancer raging so why do we wait... are we stuck in protocol?
I share tonight because I'm horribly sad at this moment. I know I'll bounce back up by morning and be optimistic for him and joyful in the life we have, but now tonight as the sun sets I'm simply sad and venting to this amazing community of people who unfortunately "get" this and I don't feel so alone for the moment. There has to be an answer...there has to be a cure around the bend...not just treatments...I just don't want to accept this new normal as our dr stated we are now in... thanks for listening...I'm quite battle weary tonight.
User
Posted 19 Oct 2017 at 06:39
Hi Marye

Sorry that you find yourself here, we all understand the worry and dark thoughts that you must be having, I think most of us will have/are having/have had them.

I am no expert but in the uk the current protocol for most men is early chemotherapy (once the cancer has spread and becomes incureable) which does what you are suggesting i.e. Bash it at the start. Then if PSA increases either enzaclutamide or abiraterone (not usually described as chemo). Along the way injections of zoladex/prostap every 3 months to deter the hormones. There is another drug, biclutamide that is sometimes prescribed although most men don't seem in it for long with advanced pc from what I can see.

I was told maybe only two years but that is nearly 3 years ago, I had early chemo (docetaxl), zoladex every three months , biclutamide (briefly) and then started abiraterone Jan 2016. Touch wood it's still doing its stuff , last PSA 0.11 so lowest ever. Side effects, plenty of niggly ones but nothing that has stopped my love or ability to enjoy life.

Though this perhaps sounds strange , my life has been more fulfilling, I have done more for others, had some amazing experiences, met people who I would never have met all because I have prostate cancer. Don't get me wrong, I wish I never had it but to date the prostate cancer cloud has had a silver lining as it was a wake up call to chase my dreams. I know I am a bit younger than many in this site so am potentially more able but I have run so many races in amazing countries that I would never have been to and also I am told have inspired many to not give up. A day one spends sad, no matter how understandable, is a wasted day that you won't get back so I try so hard every day to do something positive and most days , but not all, manage it.

Keep searching for a silver lining every day

Kev

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 18 Oct 2017 at 23:41
I'm new here...and adjusting to our new normal...in 2013 my husband was diagnosed Gleason 10 with a PSA of 28...no symptoms just a high PSA ...it was out in the seminal vesicles and we chose calypso radiation and two years of hormone treatments. Things quieted down and psa's stayed low. Then this past June his PSA went to 7...then ...18...28...scans and tests were done all summer (one bone scan which is just a clinical trial in the states but fully approved in Europe) and it was found in the shoulder bone and a lymph.
We are told there are treatment choices but no cure. 18-36 months. I scour the internet reading about trials, immunotherapy, there has to be something more??? Currently he is being injected once again with lupron with one month shots working up to three month shots. Chemo is on the horizon ( zytiga) --clinical trials aren't offered I'm told until he "fails" at the hormone treatment but I can't help but believe that a trial could be more effective with less cancer raging so why do we wait... are we stuck in protocol?
I share tonight because I'm horribly sad at this moment. I know I'll bounce back up by morning and be optimistic for him and joyful in the life we have, but now tonight as the sun sets I'm simply sad and venting to this amazing community of people who unfortunately "get" this and I don't feel so alone for the moment. There has to be an answer...there has to be a cure around the bend...not just treatments...I just don't want to accept this new normal as our dr stated we are now in... thanks for listening...I'm quite battle weary tonight.
User
Posted 19 Oct 2017 at 15:06

Whilst irun is right to talk about early chemo as the protocol now, I arrived at an advanced diagnosis with bony metatestes in Jan 2012 before that was in place so wasn’t offered it. 5 and a half years on I’m still here having been sustained by HT and steroids. I had a couple of years just on prostap then a year on bicultimide, over s year on dexamethosone, low dose steroid, and recently started enzalutimide. My reason for telling my story is to indicate there remains choices in the way you can handle this disease. If you have mets in the bone or soft tissues it is incurable but it can take quite a while to get there. The individual variation is as much as the variations in the 27 types of PCa. I still have options to go too. So find out the best route, stay positive and come back for support here as it is a great place to get that.

User
Posted 19 Oct 2017 at 07:30

Lovely words Kev to inspire us all and give hope

User
Posted 19 Oct 2017 at 17:58

Marye, you are right about the new "normal" but wrong to believe predictions of life span. Nobody knows.

All we survivors aim to live long and well and trust that as year succeeds year, with more treatments becoming available, we shall have lived fulfilling lives and prove the doomsayers wrong. Ten years ago, it was thought I might make five years. I reckon to be good for a few more yet!

I predict that your husband will experience a variety of treatments and ups and downs in PSA readings over the years. I suggest his chances will be so much better if he stays fit, eats healthily (no fads, just a well balanced diet) but above all, with your help uses the power of positive thinking to sustain him in your journey ahead.

Good Luck

AC

User
Posted 19 Oct 2017 at 08:15

Putting the chemo to one side for a moment, there are no 'trials' that I can think of that you are missing out on. The new drugs that have arrived recently or are being tested at the moment tend to be for the stage after where you are now e.g. for when the HT fails and he becomes hormone resistant. Enzalutimide and Abiraterone are two examples and there are others as well.

You could ask the onco why your OH is not being offered early chemo (perhaps it is not approved in the US the way it is here now) - important to understand that until very recently chemo was only given to men in the final stages of PCa because it does not kill prostate cancer. The recent research found that chemo can make the HT work better and for longer though so worth asking. It may be that other health issues make your man unsuitable for chemo though? You could also ask whether there is any protocol or trial in US about taking aspirin with HT.

No cure but lots of things to try even after the HT fails.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 19 Oct 2017 at 06:39
Hi Marye

Sorry that you find yourself here, we all understand the worry and dark thoughts that you must be having, I think most of us will have/are having/have had them.

I am no expert but in the uk the current protocol for most men is early chemotherapy (once the cancer has spread and becomes incureable) which does what you are suggesting i.e. Bash it at the start. Then if PSA increases either enzaclutamide or abiraterone (not usually described as chemo). Along the way injections of zoladex/prostap every 3 months to deter the hormones. There is another drug, biclutamide that is sometimes prescribed although most men don't seem in it for long with advanced pc from what I can see.

I was told maybe only two years but that is nearly 3 years ago, I had early chemo (docetaxl), zoladex every three months , biclutamide (briefly) and then started abiraterone Jan 2016. Touch wood it's still doing its stuff , last PSA 0.11 so lowest ever. Side effects, plenty of niggly ones but nothing that has stopped my love or ability to enjoy life.

Though this perhaps sounds strange , my life has been more fulfilling, I have done more for others, had some amazing experiences, met people who I would never have met all because I have prostate cancer. Don't get me wrong, I wish I never had it but to date the prostate cancer cloud has had a silver lining as it was a wake up call to chase my dreams. I know I am a bit younger than many in this site so am potentially more able but I have run so many races in amazing countries that I would never have been to and also I am told have inspired many to not give up. A day one spends sad, no matter how understandable, is a wasted day that you won't get back so I try so hard every day to do something positive and most days , but not all, manage it.

Keep searching for a silver lining every day

Kev

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 19 Oct 2017 at 07:30

Lovely words Kev to inspire us all and give hope

User
Posted 19 Oct 2017 at 08:15

Putting the chemo to one side for a moment, there are no 'trials' that I can think of that you are missing out on. The new drugs that have arrived recently or are being tested at the moment tend to be for the stage after where you are now e.g. for when the HT fails and he becomes hormone resistant. Enzalutimide and Abiraterone are two examples and there are others as well.

You could ask the onco why your OH is not being offered early chemo (perhaps it is not approved in the US the way it is here now) - important to understand that until very recently chemo was only given to men in the final stages of PCa because it does not kill prostate cancer. The recent research found that chemo can make the HT work better and for longer though so worth asking. It may be that other health issues make your man unsuitable for chemo though? You could also ask whether there is any protocol or trial in US about taking aspirin with HT.

No cure but lots of things to try even after the HT fails.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Oct 2017 at 15:06

Whilst irun is right to talk about early chemo as the protocol now, I arrived at an advanced diagnosis with bony metatestes in Jan 2012 before that was in place so wasn’t offered it. 5 and a half years on I’m still here having been sustained by HT and steroids. I had a couple of years just on prostap then a year on bicultimide, over s year on dexamethosone, low dose steroid, and recently started enzalutimide. My reason for telling my story is to indicate there remains choices in the way you can handle this disease. If you have mets in the bone or soft tissues it is incurable but it can take quite a while to get there. The individual variation is as much as the variations in the 27 types of PCa. I still have options to go too. So find out the best route, stay positive and come back for support here as it is a great place to get that.

User
Posted 19 Oct 2017 at 17:58

Marye, you are right about the new "normal" but wrong to believe predictions of life span. Nobody knows.

All we survivors aim to live long and well and trust that as year succeeds year, with more treatments becoming available, we shall have lived fulfilling lives and prove the doomsayers wrong. Ten years ago, it was thought I might make five years. I reckon to be good for a few more yet!

I predict that your husband will experience a variety of treatments and ups and downs in PSA readings over the years. I suggest his chances will be so much better if he stays fit, eats healthily (no fads, just a well balanced diet) but above all, with your help uses the power of positive thinking to sustain him in your journey ahead.

Good Luck

AC

 
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