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43yr old, stage 4 metastatic prostate cancer

User
Posted 13 March 2017 21:30:36(UTC)

Hello,

I was diagnosed with the above in December 2016 which had already spread to the bones.

I have now had 2 of 6 intravenous chemo sessions, along with monthly Zoladex hormone injections.

I currently feel lucky as I have minimal side effects, mainly 4/5 urine stops every night…!?!

I have been told to my face, the horrible words of inoperable, incurable and terminal.

I would ideally like to have a chat or have some contact (publicly on here or privately) with those of a similar age with the same diagnosis for comparison, advice and support, with regards to the condition and ongoing treatment etc. 

It would be really nice to hear from people.

Steve

User
Posted 27 October 2017 17:01:41(UTC)
Dear Emma, I am so sorry to read of your loss. Steve and I had a brief exchange of messages earlier this year, I know from this that he thought the world of you and was sad that his mood swings landed on your shoulders, you clearly were very important to him. I wish you every bit of strength for the future.
Kev
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
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User
Posted 23 March 2017 21:37:32(UTC)

Originally Posted by: Online Community Member

next Tuesday will be my 3rd of 6 intravenous chemo sessions which are now leaving me with badly bruised wrists from the cannula which seem to take weeks to heal…??? Do others find / found this…???

Yep I had this as well and then a chemo nurse told me to press the dressing that covers the cannula site down firmly for at least two minutes using a thumb. Do this as soon as the cannula is removed. Since following this advice I've had only minor bruising.

Thanked 1 time
User
Posted 23 March 2017 22:21:17(UTC)

If you look at the march for men adverts that pop up on Facebook if you like the PCUK pages there is a bio of a guy called Lloyd. He is in a very similar position to you. He has replied to comments made on the add and may reply to you too if you commented.

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User
Posted 13 March 2017 23:18:53(UTC)

Hope someone will soon give you a reply.

Some people here have had terrible diagnosis and still there. Don't get into despair.
The best to you,
Lola

User
Posted 14 March 2017 05:49:30(UTC)
I have pm you
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
User
Posted 14 March 2017 06:45:47(UTC)

Hi Steve , being diagnosed at any age is devastating but at such a young age more so .my OH was 55 so a bit older PSA23 Gleason 4+5 and lymph node spread .gary was diagnosed a year before you and has undergone the 6 sessions of chemo .luckily he had very few side effects and the PSA level dropped quite quickly .gary worked throughout and is still working everyday in quite a manual job maybe a bit slower but still managing overtime when needed.
It does get easier not thinking about it everyday but the main thing is to stay positive and talk about how you feel rather than bottle it up .this site will bring lots of advise and encouragement ,
We're looking forward to holidays and a third grandchild and many more years together
Best wishes
Debby

User
Posted 14 March 2017 07:06:20(UTC)

Hello Steve so sorry to hear your news. It's becoming more common it seems that young men have this cancer. I am 50 this year but was diagnosed at 48. Click my picture and read my profile. I was offered and had surgery but they had missed really that I was G9T4N1. I had 5 lymph nodes cancerous and margins on bladder so I was locally advanced. My post op figures were bad and went on a year of HT. I rejected RT as they said it wouldn't be curative. Now off HT figures are climbing again. They suspect advanced and we will soon find out via a very snazzy PSMA PET scan at London in roughly 4 weeks time.
I can chat anytime you like ok if you want to. I've had a bad time getting through the surgery and ED at such a young age, and indeed the mental torture. Stay strong and best wishes
Chris




If life gives you lemons , then make lemonade
User
Posted 14 March 2017 08:10:15(UTC)

hi steve

my profile may look a bit like yours only I am 20yrs older, if you click on avatars you can read about what others have been through and still going through, not sure on how many men we have of your age on here

but am here if you need any help

 

regards

nidge

run long and prosper

'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 14 March 2017 21:08:03(UTC)
Wow Steve , yes you are young to be diagnosed with stage 4 and my heart goes out to you your story just goes to show that this is most certainly not an old mans disease.
My advise would be hang in there and yes stay positive and trust me I know how crazy that phrase sounds but there are others on here going through a similar diagnosis and going through chemo please look up Irun he is around your age and is an inspiration.
Keep posting.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 March 2017 20:38:45(UTC)

Hello all again, here is my 2nd post so be gentle with me…!?!

I’d just like to thank everyone who has replied to my 1st post, no matter how long or short the response, even just to wish me the best, it’s a great help to hear from you all.

I can only apologise for not answering some people’s questions and especially to those who have messaged me privately for not responding back sooner. I find everyday continues to be an overload of information and my daily “to-do” lists just seem to get bigger and bigger…!?!

To those who have asked, when hospitalised in December last year my PSA was 539, (Gleason equivalent of 8/9/10), my lungs partially collapsed and I had a bleed within the brain lining. I now continue to celebrate my PSA of being down to 87 from my January test and enjoy daily exercise with my local walks…!?!

I am still having monthly Zoladex hormone injections and next Tuesday will be my 3rd of 6 intravenous chemo sessions which are now leaving me with badly bruised wrists from the cannula which seem to take weeks to heal…??? Do others find / found this…???

Not that I want to start a debate, but does sugar feed cancer…???

Is anyone on a crash diet with zero sugar and if so, how hard has it been…???

I’m not sure I’d be able to make the sacrifice myself / quality of life etc…

I seem to be living in a 2-day cycle at present, a highly positive mood one day with encouraging feedback and news, followed by a manically depressed mood the next day, reading the detail and accepting the realisation of my condition and life expectancy.

I have great people around me, I attended a Support Group last month and you guys are amazing so please continue to write on here. I think I’m blabbing now so I better go…

Steve

User
Posted 23 March 2017 21:37:32(UTC)

Originally Posted by: Online Community Member

next Tuesday will be my 3rd of 6 intravenous chemo sessions which are now leaving me with badly bruised wrists from the cannula which seem to take weeks to heal…??? Do others find / found this…???

Yep I had this as well and then a chemo nurse told me to press the dressing that covers the cannula site down firmly for at least two minutes using a thumb. Do this as soon as the cannula is removed. Since following this advice I've had only minor bruising.

Thanked 1 time
User
Posted 23 March 2017 22:21:17(UTC)

If you look at the march for men adverts that pop up on Facebook if you like the PCUK pages there is a bio of a guy called Lloyd. He is in a very similar position to you. He has replied to comments made on the add and may reply to you too if you commented.

Thanked 1 time
User
Posted 29 June 2017 10:50:38(UTC)

3rd post - June 2017

3 weeks ago I finished the 6th of my 6 intravenous chemo sessions and am more than happy their over…!?!  In the scheme of things I think I ‘got away with it’ on the side-effects front with only the multiple wee’s every night (up to 6 on some occasions) although they lessened a week or so after a treatment.

I can’t believe at the bear minimum I didn’t get the excessive fatigue that I continue to read that most others seem to get.  I also kept waking up early, 3 or 4am for a toilet break and then found it incredibly hard to get back to sleep but again, I never then needed an afternoon siesta the next day which I found strange.  Eventually though, it would catch up with me and I’d very suddenly be zonked out one afternoon and need a solid sleep to catch up…!?!

However, I am now suffering in a really bad way on the morale front.  I’m extremely moody, down, depressed and my girlfriend of 14 years is finding me very hard to live with right now.  The strange thing though, is that I don’t know what it is, apart obviously from my diagnosis.  Some days I’m fine all day, then she comes home from work and I go ultra-moody which naturally makes her feel bad, (and me) as if it’s her coming home that’s caused it.

I also have major fatigue “now”, after the end of chemo and having stopped taking Prednisolone so I’m hoping it’s just my body trying to re-adjust…??

I continue to get out every day, exercise, walk, mix with different people when it suits me and attend a local Support Group once a month to keep myself active but just can’t seem to shift the low morale.  I’ve also enlisted to speak to a specific ‘cancer’ counsellor but annoyingly they are overbooked and aren’t taking on any new patients until at least mid-July, ahh the NHS…!?!

I have since contacted Macmillan to speak to one of their people, they sound so helpful and supportive and I am waiting for a call-back so they can match me up with a relevant councillor.  Looking ahead though, I see the 1st question being “so what do you want to talk about” or “what do you want to get out of these sessions”…??? And my response being “I don’t know”…!?!

Anyway, it’s been nice typing this, maybe this could be a route out of the hole I’m in, putting more of my thoughts down in text…?!

Steve

User
Posted 29 June 2017 15:43:37(UTC)

Hi Steve,
glad to hear that you have got through the Chemo reasonably well, it must be really tough. I'm sure that the fatigue will pass and that you will start to feel better, just remember your body has been through a lot.
The hormone injections could also be sapping some of your energy and perhaps contributing to your mood.
Unfortunately the diagnosis and treatment is tough on all involved and I know that sometimes I get the rough end of the stick from my husband. I think it's because he's been trying so hard to be normal with every-one else he just lets his guard down and i get whatever it is he's been bottling up all day.
Has your girlfriend ever considered counselling, I got 4 free sessions through my employer early on in my husband's diagnosis and found it really helpful, not for anything specific but just as a safe place to go and vent, talk openly about how I was feeling.
Also for you does your employer offer any free counselling sessions, it might be a way to get something quicker than waiting on the NHS ones.
I see you've already tried McMillan, is there also a Maggies near you, they may have something too. Also you really don't need to have any particular goal in mind, whoever you see will talk with you and you'll get to that when you are ready.

Anyway, chin-up you are doing great and keep talking.

Julie

User
Posted 04 July 2017 08:49:46(UTC)

Hi all... I saw the Oncologist 10 days ago...

Regrettably my PSA has now risen from 25 to 32 (it was 563 last December) but he say's it's not uncommon for this reading to be false as my body hasn't 'got back to normal' yet.  Another PSA test in 3 month’s time should give a more accurate reading after the 18 week phase of chemo, but my god, that feels like years away...

Er, I'm gutted to be honest, I'm devastated in fact, after all that slog of chemo, to have a slight increase... but all other indicators are positive apparently... eg "my bloods are where they want them to be...???"

Personally I'm not seeing it but I'll "try" and keep positive for those around me...!?! 

User
Posted 04 July 2017 08:59:00(UTC)

You and me both Shawshank. I'm at a similar post chemo stage to you and have also seen the first post chemo bloods show a rise in PSA. I haven't seen my Oncologist as yet so we'll see if she says something similar to yours.

User
Posted 04 July 2017 19:17:16(UTC)

Chemo does not kill prostate cancer so it is not expected to make the PSA drop. That's why until recently chemo was only given to men in the last stages of the disease to buy a bit of time. The research that led to the 'early chemo' protocol was exciting because it was realised that hormone treatments, Abiraterone, enzalutimide etc are much more efficient after chemo (not always but mostly)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 04 July 2017 21:06:41(UTC)
Hi Steve sorry you are feeling despondent after the rise in your PSA I can fully understand as my hubby went through chemo last year after which he had breast cancer and stomach cancer and unbelievably his PSA stayed at 0.25 until today when its risen to 0.89 his mood has completely changed and he's feeling very deflated to say the least even though his oncologist says he's not too concerned about this until it gets to 4 then they will arrange for scans so he has to wait for three months for next blood tests. I'm trying to stay positive but to be honest as it's the first time there has been a rise I'm not sure what to think. It's such a worry. Hope you can stay positive. Good luck on your journey.
Debbie x
User
Posted 12 July 2017 09:21:08(UTC)
Hi Steve, I'm 51 so not too much older than you. In a similar position though a few months behind you treatment wise as my chemo not due to start until end of July. Be good to keep in touch with updates either on here or by PM. I have a wife and son (19). Still trying to get my head around it tbh

Alan
User
Posted 26 October 2017 17:09:56(UTC)

Hello everyone, 

I thought I would update this post, I am Steve's partner Emma.  Steve unfortunately passed away on the 2nd October, 9 months after diagnosis.  Treatment never quite worked.  Although the initial hormone therapy took his psa down from 537 to 23.  As soon as chemo stopped at the end of May it started to rise again.  23 to 32 to 50 then to 444 the week before he died.  They took it again the day before he died and it had gone to 544 (so within 6 days of the 444 reading).  This was obviously growing extremely fast.  I think his body could not take anymore.  Took him to hospital on Sunday 1st and his oxygen levels were low.  He was on maximum oxygen and morphine.  but sadly passed away.  Thank you for all who supported Steve with your comments,  I wish you all the best in your journeys and if you would like any help from me, please d not hesitate to contact me xxxx

 

User
Posted 26 October 2017 18:39:43(UTC)

Emma, I am so sorry to hear this - it does seem that young men are more likely to have a very aggressive form that does not respond to any treatment. I hope that you have good support networks around you and that in time, you will be able to draw on happy memories rather than the last 9 months.

Sleep peacefully, Steve

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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User
Posted 26 October 2017 18:46:42(UTC)
Accept my condolences, Emma.
I hope you soon get some relief to your sorrow.
Xx
Lola
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User
Posted 26 October 2017 18:58:08(UTC)

Shocked and saddened to hear this news 

 

RIP Steve

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User
Posted 26 October 2017 19:56:53(UTC)
Terrible news Emma

Please accept my condolences.

Clare
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User
Posted 26 October 2017 20:19:02(UTC)

Gosh what a shock Emma. I’m so very sorry and sending strength to you. I don’t really know what to say other than what a tragic loss at such a young age. Take care of yourself x




If life gives you lemons , then make lemonade
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User
Posted 26 October 2017 23:42:01(UTC)

So very sorry Emma - you must be reeling from the speed with which this bloody disease took hold. My heart goes out to you. It's a tough journey ahead; do hope you are getting support from friends and family, and from professionals. There's also the Macmillan bereaved partners site which can help you feel less alone and less overwhelmed - I've found it a lifeline.

Love and empathy

Ruth x

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User
Posted 27 October 2017 17:01:41(UTC)
Dear Emma, I am so sorry to read of your loss. Steve and I had a brief exchange of messages earlier this year, I know from this that he thought the world of you and was sad that his mood swings landed on your shoulders, you clearly were very important to him. I wish you every bit of strength for the future.
Kev
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
Thanked 2 times
User
Posted 27 October 2017 21:59:02(UTC)

So unlucky, so very sad. My sincere condolences.

Barry
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User
Posted 27 October 2017 23:46:04(UTC)

Dear Emma I am so sorry. Sending you love x

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User
Posted 28 October 2017 14:53:35(UTC)
Devastating. Peace and love to you, Emma.

Ulsterman
User
Posted 28 October 2017 17:44:51(UTC)
So so sorry to hear this devastating news Emma., my sincere condolences.
Look after yourself
Debbie x
User
Posted 29 October 2017 08:24:11(UTC)
I'm so sorry to hear of your sad loss. Life can be so unfair at times. The love and support you gave him would have meant so much to him. Treasure the memories of the time you had together. Steve xx
User
Posted 29 October 2017 12:17:43(UTC)

So sorry , thinking of you at this sad time
Debby

User
Posted 29 October 2017 12:47:10(UTC)

Hi Emma

My sincere condolences.  Take care. 

Gordon

User
Posted 29 October 2017 15:33:08(UTC)

Hi Emma

 I am so sorry for your loss I wish I could say something to help you but words are not enough.

best wishes 

barbara

User
Posted 29 October 2017 22:02:55(UTC)

Emma, so very sorry to read this sad news. My thoughts are with you and your family.
Julie

User
Posted 30 October 2017 18:52:11(UTC)
Oh Emma,
I am only just catching up with others posts I am so sorry to read this . Please accept my condolences.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 31 October 2017 21:27:36(UTC)
Oh no Emma
I am so sorry to read this devastating news. Please accept my condolences

With Love
Devonmaid xxx
User
Posted 01 November 2017 16:03:37(UTC)

Dear Emma .. so sorry for your sad loss. If it's any consolation, Steve is now longer suffering and your memories of all the happy times you had together will be with you for ever.
Tom xxx

User
Posted 01 November 2017 19:36:35(UTC)

Dear Emma ,

I'm so sorry for your loss, please think of the happy times together .x

User
Posted 29 November 2017 17:59:32(UTC)

Dear Emma -

How sad. Life Is often very cruel. As a PC sufferer myself, it’s those closest and dearest to us who we give the hardest time. What was very clear in Steve’s well-chosen words was that he loved you very much, Emma. Stay with that thought and hopefully happy memories will eventually overcome your grief.

 
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