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Getting my head in the right place

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User
Posted 09 May 2022 at 17:33

Back home from holidays again and on the trip to Sunderland for the Enza clinic, got my January results down 0.2 ish down to 0.106 in March followed by todays result of 0.069, talk about being over the moon, letter being sent to doctors to prescribe zoledronic acid and vitamin D and something else by this time I was on cloud nine and not taking much in


Now a discussion starts about should we reduce the dose down from 4 tablets to 3 or stay as is, I honestly couldn't give an opinion, I'll be guided by people who know better than me so far Doc Pearson has been spot on.

User
Posted 09 May 2022 at 18:55
EPIC news 👍👍
User
Posted 09 May 2022 at 19:04

Excellent news, David starts Apalutamide next week, he is concerned about the side effects, his PSA has already dropped to 0.3 on the prostrap, so he is hopeful of a further drop.
David feels well and he’s very active, and hopes this continues.


Leila  

User
Posted 10 May 2022 at 10:32

Hi Liela, Best of Luck with Apalutamide hope David gets on with it, with my change onto Enza it took a couple of months to settle with the side side effects, but feeling a more comfortable now

User
Posted 10 May 2022 at 10:52

Thank you, both medications seem to have a good report. 

User
Posted 11 May 2022 at 17:09

Great news. Very happy for you.

Ido4

User
Posted 07 Jul 2022 at 12:09

Well just back from the July Enza clinic, my PSA has dropped again down to 0.051 so I'm a happy chappie, also I've been asked to drop down to 3 tablets a day instead of the current 4 (but if anything changes I can go back to four) and it should help with the tiredness a little, hopefully it stays stable for a while!

Edited by member 07 Jul 2022 at 14:12  | Reason: wrong month

User
Posted 07 Jul 2022 at 12:46

That’s great news , and hope the 3 tablets carry on doing the job . 
Phil

User
Posted 07 Jul 2022 at 12:55

Great news hopefully it will help with the tiredness 👍

User
Posted 07 Jul 2022 at 14:04
Great news 👍👌💪
User
Posted 07 Jul 2022 at 15:00

Great news 👍

User
Posted 08 Jul 2022 at 19:19

That’s fantastic news. Thanks for update.

Ido4

User
Posted 09 Jul 2022 at 02:11
🎉🎉🎉
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Jul 2022 at 17:59
Quick note to myself even though I tried drinking water and red wine after dinner then conscience shut down and decided on another wine without water, ended up with me being bad, its my own fault I know I couldn't drink to much with the tablets even though if I took it steady I thought I could get away with it, my own fault but the crack was good and I enjoyed it
So yes I've learnt but cannot say it won't happen again it still seemed a good idea today
User
Posted 15 Jul 2022 at 18:48
Doesn’t bode well for me in the future sadly. I love a drink or three of wine and once that’s taken away as well 🥲
Keep well and strong 💪
User
Posted 18 Jul 2022 at 14:45
Hi Chris just to put your mind at rest i would have been bad even without PC the glasses seemed to get smaller and smaller as the time went by, must admit to having a wobble walking home.
Cheers
User
Posted 28 Jul 2022 at 21:39

Hi airyarris


Read your profile it fills me with joy for you and hope for me that your doing so  well I have recently started my journey and my condition is similar to yours and reading your story has given me hope.


Thankyou 

User
Posted 29 Jul 2022 at 19:23

Hi Chris


Also read your story..wow and what a story it is,you've had a roller coaster of a ride 👏 bravo and keep the faith and I'll join you with a glass of vino this evening.


 

User
Posted 29 Jul 2022 at 19:48
Lets all have a drink to each other tonight just 'cause we deserve one, whether its a cup of tea, beer, wine or even water.
Cheers to all and our suffering partners
User
Posted 22 Aug 2022 at 16:39
2 month's have gone by since last PSA test since reducing the Enzalutamide from 4 tabs to 3, the result is another fall to 0.04, and a bone scan as it has been 2 years since the last one, and I've had more niggles from bones recently
User
Posted 22 Aug 2022 at 21:15

Great news on PSA. Hope bone scan provides reassurance alongside low PSA.

Ido4

User
Posted 27 Aug 2022 at 20:11

Hi. 
I am in the same boat ; just diagnosed.


PETscan and start hormone tablets this week .


In a terrible state mentally : assume I will be dead inside two years.


I am not dealing with this at all and have reached out to this community forum for help support and advice.


Thanks.


 

User
Posted 28 Aug 2022 at 01:07

Hi SCM, well you will probably live more than two years, in fact we have people who have been here for five, ten, fifteen years with advanced cancer. But it is also true we have people whose disease has progressed quite fast in two years, so I don't think there is much point in making predictions about your future yet.


Once you have got over the shock you will find everything goes back to being quite mundane. Try and get on with living and enjoying your life. If the treatments stop working then start planning your funeral, but until they stop working plan your life.

Dave

User
Posted 28 Aug 2022 at 07:16

I cannot face this horror without a few beers every day. Simple as that; I just can’t.


is it worth considering suicide,

User
Posted 28 Aug 2022 at 08:49

The only answer I can give to that is of course definitely not SCM.


This is the worst part just being diagnosed and all the waiting for results. Many on here have felt very similar to you at some point but things do get better and life does carry on. I go to a local cancer centre and speak to a counsellor there…maybe check if there is something similar in your area. There are also Maggie’s centres, MacMillan nurses and also the prostate cancer nurses on here. It’s really good to be able to chat to someone about how you’re feeling.


I can’t see any details about your diagnosis. What was your PSA, Gleason score etc??


Prostate cancer research is a constantly changing world. There is so much that is being done and so so many successful treatments being rolled out that have completely changed for many what prostate cancer means. It is constantly evolving and new treatments appearing all the time. Never give up hope that everything will be ok. Make as many positive changes in your life to feel fit and well and also to be able to enjoy life as much as possible. 


I don’t have prostate cancer like my husband but I still have no idea what the future holds, so in a lot of respects I’m in no different position to him. I know life can be a bit different when under going treatment but it certainly doesn’t mean it all has to be bad. 


Please speak to someone, it could really help. And never give up….you can do this! Best of luck SCM and keep up posted on here x

User
Posted 28 Aug 2022 at 09:11
Hi SCM, Elaine has summed it up very very well.. Gently suggest you start your own thread and give some details of your diagnosis etc.. Tx number, PSA etc etc
User
Posted 28 Aug 2022 at 13:31

Just sent you a private message, basically fill in your bio and talk to the specialist nurses and or your doctors

User
Posted 28 Aug 2022 at 14:13
Thanks mate; I read your message but cannot work out how to reply.
You are very kind and understanding.
I am just so utterly depressed and terrified of the future.
User
Posted 28 Aug 2022 at 14:54

Thanks Elaine.


my wife has been treated for lymphoma fir the past three years and has no COVID immunity; we have been stuck at home all the time since the start of lockdown so life has been Hell. 
she is getting worse now so for me to be struck down with APC is the last straw; it’s tipped me over the edge.


I work from home full time now but due to my wife’s shielding situation I haven’t met anyone socially or anything except medical professions in two and a half years.


 Yep 

User
Posted 29 Aug 2022 at 09:03

Hi SCM


I am 53 diagnosed with advanced prostate cancer with a PSA of over 2000!and kidney failure at 19%.


I was exactly the same as you my world had fallen apart and I thought I wouldn't be around in a year or so.


6 months on I am responding well to treatment PSA 1.9 and kidneys back to 70%,feeling better about life and feeling more positive,there is hope 🙏 be strong 


All the best phil


 

User
Posted 25 Oct 2022 at 11:21
Well back home again after a little of bit sun and it’s back to reality, hospital appointment for bloods and collect tablets plus results of bone scan which showed no change from last scan and no particular hotspots, with a PSA of 0.4. and its also 3 years since I joined this club!!
So I’m a happy chappie just taking three tablets a day seems to be keeping me stable. yeah
User
Posted 09 Nov 2022 at 15:49
What a difference a few days makes form being on top of the world to what the heck hit me, picked up a sore throat and cough, checked not corvid, so treat as a cold, Wrong ten days later rang surgery, doc rang back come in the next 20 minutes need to listen to your chest, now on antibiotics! I never realised what a weakened immune system meant till now, also didn't realise how energy I had before honest I won't complain of lack of energy due to meds
User
Posted 09 Nov 2022 at 15:59
Get well soon Airy
User
Posted 09 Nov 2022 at 18:38

Great news Phil and airy news like this lifts everyone 👍

User
Posted 18 Feb 2023 at 16:36
Back again for Bloods and collect Enzalutamide, they actually found a vein at the elbow, the last few have had to be taken from my hand, still carrying a cough it's looking like another trip to he Docs if it doesn't improve on its own. Being sent for a flow test sometime and unusually didn't get a call with my PSA results presuming they okay but I'll have to ask in 2 months
User
Posted 18 Feb 2023 at 16:36
Back again for Bloods and collect Enzalutamide, they actually found a vein at the elbow, the last few have had to be taken from my hand, still carrying a cough it's looking like another trip to he Docs if it doesn't improve on its own. Being sent for a flow test sometime and unusually didn't get a call with my PSA results presuming they okay but I'll have to ask in 2 months
User
Posted 28 Feb 2023 at 13:17
Just had a phone call from urology my Feb PSA result is no change really 0.044 so I'm a happy chappie still, that cough is still being an irritation two more lots of penicillin booked in for an X ray at weekend, hopefully getting to the bottom of the problem
User
Posted 01 Mar 2023 at 15:48

Great PSA result, hope you get the cough resolved soon.

Ido4

User
Posted 01 Mar 2023 at 16:09

Great news 👍 but hope they can get your cough sorted out x

User
Posted 01 Mar 2023 at 16:44

Great result, keep it up 👍


Phil

User
Posted 24 Jun 2023 at 17:11
This week has been a week in two halves Monday bloods etc at Sunderland last appointment two months ago, PSA result was 0.032 the lowest ever for me, over the moon, Friday 24 week Decapeptyl injection and PSA results from last Mondays blood test 0.052, that came as a shock! Okay my glass is still half full it’s still low and it cannot keep going down, also it was the last 1/3 of the 24 week Decapeptyl injection cycle so some tail could be the cause, but the main bit I’m still feeling well able to go for a red wine or two etc, so forget about PSA till next appointment. Honest
User
Posted 24 Jun 2023 at 17:32
We all worry , naturally , but that’s a gnats f**t tbh. Probably a machine blip or the tester had eaten salt or vinegar crisps. All epic mate and keep up the wine. It’s working for me
User
Posted 24 Jun 2023 at 17:39
Thanks Chris for the humour the thought ot lab techies eating salt and vinegar crisps has tickled me
User
Posted 24 Jun 2023 at 23:00

Red wine works for us too….. every day is a good one 


Leila 

User
Posted 11 Sep 2023 at 17:00
My PSA last blood test is still below 0.1 but, Well how can I put it on Sept 17 2019 I was told an incurable cancer which I would die with it or because of it, and like an idiot in my now I asked for a prognosis which was 40% chance of surviving 4 years as I had an allergic reaction to chemo
Well wind on four years and I’m glad I didn’t have chemo as other people I know who had chemo. had a lot of other side effects which Did not affect me. only thing is now I‘ve hung onto that date like an anchor, now it’s here and I’ve got to reassess and start to think that whatever happens will happen when ever, and boy that is a difficult mindset to change. Everyone says I am looking well but they only see me when I feel good and want to be out, has anyone had a similar experience and do you have any coping ideas that I could take on board and adapt to suit me and my lifestyle, any comments would be welcome? I am getting a lot of help from my Gp’s, and other services but if other members have been thro’ this lucky position any advice would be great.++++
User
Posted 11 Sep 2023 at 19:25
Hey Airy , I’m now past 8 yrs of a T4 diagnosis after surgery. I picked my own path of treatment. Maybe naively but it has worked so far touch wood. My Onco grits his teeth when he sees me as I turn his advice upside down. I kind of expect to croak it in the next 2 yrs as reaching the 10 yr club is kind of difficult. I’m just 56 yrs old. I too get told each day I look so well and tanned and healthy. I make people happy and smile and laugh but inside I’m crumbling tbh. My saving grace has been learning to fly model planes and go fishing. New hobbies mean the world and stop that horrible nagging noise in my head of doom and gloom. Yes it’s going to happen but I’m too busy to be worrying about it if I’m honest. It’s easy to be lazy and not get moving , but try to find something you like and push yourself ok. You won’t regret it 👍
User
Posted 11 Sep 2023 at 19:36
Great post, Chris.
I love and will steal that line: 'Yes, its going to happen, but I'm too busy to be worrying about it'.
I think I am through the current version of my PCa, but I have just lost my son at the unreasonable age of 38. It's ever so easy to give in, but : Live it or lose it....
User
Posted 11 Sep 2023 at 21:48
So very very sorry to hear of your loss. Humbles us doesn’t it. Stay strong and may your prognosis continue.
User
Posted 12 Sep 2023 at 12:58

Airy Harris,


people are very good at saying how well you look. I had a former nurse tell me I didn’t look like a cancer victim and a month later I had a high grade recurrence going on!


I agree with Chris, find things you enjoy doing and “lose yourself “ in them.


It calms the noise down for a lot of the time.


All the best,


 

Ido4

User
Posted 03 Oct 2023 at 13:56
Here we are again back home from sunny Sunderland weight, BP fine, bloods okay but PSA still going up at present but still nothing to worry about but 0.067 yesterday, (Chris hope that techie finishes his salt and vinegar crisps soon)
 
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