What a whirlwind.....

User

Posted 15 Feb 2021 at 13:56

Well I had a PSA test back in 2018 as my Dad had Prostrate Cancer and I thought at the young age of 53 it was a good idea. PSA was 1, no symptoms and I felt great. In 2019 my mum died so life was manic for a while and it did not settle until the December and then Covid hit us.

In December 2020 I asked the GP for a PSA test as I was finding it hard to maintain the flow and start but felt physically great, so I had a PSA test on the 30th Dec. On the 5th Jan 21 I was in A&E with bladder retention as my prostrate had decided to strangle my pipes. The PSA test from the December came back as 10.7, a digit exam in A&E was a concern so I came away feeling a little worried. 5 days later an MRI scan, 6 days later a biopsy, four days after that a full body bone scan and then three days later a Flex-cystoscopy.... credit to the NHS and Addenbrookes for fitting me in so quick.

My consultant phoned me Friday 12th Feb with the news I have Prostrate Cancer in 14 of the 15 biopsy's, it was not in my bladder :-) but in my pelvic bone :-( . Due to cancer being in my pelvic bone the only treatment is hormone treatment - which they put me on when in A&E just in case and I had my first hormone injection last Wednesday ( repeated very three months). I was told there is no cure for me, just management and if the cancer behaved and my body worked well with the hormone treatment then I have years not months..... I have my CT scan this Wednesday to check my thorax, pelvis and stomach and then I get to see the Oncologist. I have three specialist Nurses assigned to me which is great.... not sure I need three but heck happy to oblige.

My wife has been on the journey with me from the start and she has been amazing. My daughters live with my ex-wife so we told them on Friday afternoon and my in-laws and brother on Saturday...... Head is all over the place and to be honest I did not expect to be here at the age of 55...... but then again who does....

BUT.... we have a journey to go on and no matter how long or short, it will be filled with fun, a positive attitude and some serious steaming dollops of good humour. There are times I find it hard..... times I worry for my wife and daughters and times I just say the F word a lot....... seems to help although my dogs do look at my funny.

Anyway.... here to help anyone I can and keen to hear your updates, journeys and who know's, if anyone is around Cambridge way and we are allowed, meet up for a beer or three - medication allowing :-)

Please take care and be safe.

User

Posted 27 Jul 2023 at 18:33

Well it has been a while since I was last on the site and time has flown by :-)

So what is the news ? Well since the last post the body has got used to the Enzalutamide and it is no longer effective and the PSA was starting to rise a little quick. So they have taken me off the Enza and I started Chemo about 9 weeks ago and just had my third session last Friday. Chemo was not too bad and I was fine until the Monday morning when I felt like a truck had hit me - rushed into A&E and them to the Chemo assessment unit and on AV due to an infection - they are not joking when they say your immune suppressed.... after a night in Chemo Assess all fine and allowed home. Since then they have reduced the Chemo does and all has been good. Well good may be a strong word.... I now have a pain in the left hip which means I need a stick to help me walk and I get so tired..... BUT..... I am still walking the dogs three times a week, still clay shooting ( and I beat my brother in-law for the first time last week) so I can not complain. Was told off by the DR for not taking pain meds as I was in pain so now I am taking two paracetamol when needed.... honest I am :-) I have been put forward for some new treatment which we are waiting to hear back on and I am also on some bone treatment - I call it skele-grow (Harry Potter) as I can never remember the name... something acid. ANYWAY.... still working, still causing trouble and still living life to the full. EVERYDAY is a blank page and it is up to me to fill it as best I can..... and that is what I do :-)

CHEMO side effects..... for those who are interested - and these are what I had..... you have none :-)

1. Learn to inject yourself post chemo with anti-bionics for a few days - no big deal - under the skin and easy

2. Taste - my taste buds have gone bonkers and everything tastes different - not bad just different - all bar Monster Much (Beef flavor) they still taste the same.

3. Tiredness - when the brain is busy and I am working then I am fine... then I stop and before I know it I am sleep on the sofa and it is 1am.... I have watched the same film three times now and still have not seen the end... cant be that good a film... something about a bird box and Barcelona.....

For anyone who is just joining the journey..... ignore the dark clouds and bloody live life to the full. Two weeks time I am off to the Greek islands for a weeks holiday with my daughters.... I'll also take my fire fighting gear just in case :-) I can not sit in the sun, I can not drink beer or wine but I can enjoy the time I have :-)

Will try and post more often...... BE GOOD - STAY SAFE and most of all ..... HAVE FUN.

User

Posted 24 Feb 2022 at 18:03

It has been a year since I was diagnosed with Stage 4 Advances Prostate Cancer with a G score of 9/10 - the only test you want to score low in and I get a 9/10 !!!!!!

Well the year has flown by and I must admit at times I have been sh*t scared and others totally at peace with it all. Telling the family was the worst bit and my girls (24,21 years old) still have the odd wobble even now. Grace has Williams Syndrome so her comprehension is not so great and there are times when she does not want too stay the weekend if her sister isn't in case something happens and Sharon my wife is not present. But we talk and cry and hug and I think we are getting there. The wife has been great, the initial side effects of the hormone treatment hit us hard and took a lot of getting used to. But we soldier on and we keep ourselves busy and the evenings are now a fun game of who falls asleep in front of the TV first - always used to be the wife but now it is a tight race.

Keeping busy is the key and keeping positive... I take the dogs walking 3+ miles every morning and just getting back into running - when the wind stops. I still work, have all my hobbies like shooting, fly fishing but had to call an end to the being shot out of a cannon as the Oncologist was not happy with that :-).

I myself feel fine, the odd joint pain, teeth are a little sensitive and I get tired a lot but the PSA has been going down and down although yesterdays PSA was up .07 but I guess that is not a real issues - I hope.

I guess my message to all out there who may be facing a similar diagnosis is DON'T GIVE UP...... SOLDIER ON and yes things will change a little but there is always hope and much depends on YOU. Keep positive, keep living life to the full. Living life is not about the end state but how we get there and what we do on the way..... We ALL will end up at the end state eventually but it is how we get there......

Be strong, have fun and smile and enjoy life..... we only have one :-)

User

Posted 31 Mar 2021 at 11:35

@DAVE - Showing my age is not far off it - these bloody meds mean I feel the cold, feel tired and have to eat more....... well I blame the meds anyway.

To be honest Fly Fishing is a great way to zone out as is distance rifle shooting - focussing on the moment and the rest of the world disappears..... great for the stress... not so much for the Trout and little bunnies.

Yes the table is the Tamsulosin Lyn.

BUT.... drum roll please...... the good news..... is .........

My latest PSA is 2.35 !!!!!!!!!!!! 🤡 OK so it is still a little high.... well higher than I had hoped BUT it is heading in the right direction and Dr Rebecca 👩‍⚕️ is happy..... so time for a cuppa and a cake to celebrate. 🥛🍰

ALSO.... yes there is more........ I walked 450,000 steps for #Marchthemmonth, raised £3.5k for Prostate Cancer UK and encouraged 32 blokes to get a PSA test of which two are under observation.

Now all I need to do is get Boris to reply to the email I sent him so we can engage him and get regular testing as standard for all men over 50....... :-). But that may take a little longer..... 😀

User

Posted 15 Feb 2021 at 13:56

Please take care and be safe.

User

Posted 15 Feb 2021 at 15:35

Hi Nick,

A nice refreshingly upbeat post. I am a bit luckier than you in that mine should be curable (we never know for sure). Life would be better without cancer, but sometimes we have to just accept what life throws at us, but at least we can choose whether to be miserable or happy.

I know there will be difficult times ahead, but good luck keep posting, a positive attitude like yours can help uplift other people in a similar situation.

I'm looking forward to a draught beer, fed up of bottles.

Dave

User

Posted 15 Feb 2021 at 19:34

Hey Nick....I'm another Nick who has been recently diagnosed and started HT at the start of Dec (with a view to RT to try and wipe it out......though still got all options open with that, I'm doing a lot of digging (espec. on here) and have quite a few q's for my specialist nurse once she touches base again!), and had the 28 x tablets, 1 monthly and 1 3 monthly injection so far.....how is your HT going ? I'm having quite a few hot flushes and aches, particularly in the shoulder area, and also elbows ?! Weird. Other than that its going OK to date !

All the best and keep us updated......and agreed we really, really need some proper draught beer when allowed again ! (though the Exmoor Gold and Wychwoods 'Dry Neck' are keeping me going OK at present...)

Cheers!

Nick

User

Posted 18 Feb 2021 at 22:44

Here is a post from about a year back. It is now a bit disjointed because some replies from "Andrew" have been deleted, but you will still see the general optimism from some of the contributors.

https://community.prostatecanceruk.org/posts/t23226-It-s-not-a-big-deal---is-it

So all I can say is keep enjoying life, no point in being miserable well not unless the beer runs out.

Dave

User

Posted 30 Dec 2021 at 15:45

Aw Nobby, what a great post - happy Christmas and a very healthy & lively 2022 to you!

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

User

Posted 05 May 2022 at 11:13

Morning folks and I hope find everyone well and being positive 😬

After a consult in Feb I was told to keep an eye on the blood pressure and purchased one of those home machines. Turns out the meds can give you high blood pressure so now on 5mg of Amlodipine to reduce it. Never had high blood pressure before and a recent reading of 201/101 was high'ish - now down to 165/85 which is a little more reasonable 😎

The PSA is not being very good. Jumped up again to 1.51 from .85 so waiting for a call from the consultant to see what we can do about this but they did warn me that after a year the body adjusts and they may have to tweak things. Not sure I like the idea of being "tweaked" but heck its been so long since anything tweaked it may be a nice experience. I know we can all fixate on numbers and what if's and I am no different. It scares us when the number go the wrong way and we get upset which is not a bad thing and totally understandable..... but don't let it consume you. We all know life is precious so let's live it, enjoy it and get out there and have fun.

QUESTIONs

How many of you who are of working age are still working ?

Anyone receive PIP ? I ask as given I have a terminal diagnosis I should get it but only in the last six months... but when do I know the last six months start!!!!!!! Any advice welcome.

Remember guys.... talking helps..... living life is even better and keep a stiff upper lip... even if it is above a loose flabby chin.

User

Posted 05 May 2022 at 12:10

Hi Nobby nice and upbeat as usual. Good for you and you’re a role-model to us all.

When you say terminal do you mean incurable ? As they are different matters I think. At the moment you are incurable until all options run out yeh ? When they run out and you become poorly they then term it terminal.

I’m 54 and incurable. I was medically retired so on a nice pension. But since retirement I’ve been a healthcare assistant , a kitchen hand , a full time infant school caretaker and now a roughty- toughty farm hand. It helps me immensely mentally to feel strong and occupied and as normal as can be given the future. Best wishes and stay well

User

Posted 05 May 2022 at 12:28

Hi Nobby my specialist cancer nurse suggested a couple of years ago that I should consider claiming PIP under the DS1500 process, 6 months to live malarkey. I think the six months business is now 6-12 months according to some NHS literature I read online recently.

Anyway I downloaded a claim form, it's a points based benefit. First question was how far can you walk, I'd just completed a coast to coast walk in 6 days so I just felt stuffed by that question. I only got 2 points for having difficulty putting my socks on as I always sit in the stairs to do that, not sure how I'd cope in a bungalow. Anyway I sacked off the PIP claim and I'm too old to claim it now.

Apparently Citizens advice or McMillan's will assist if you can bag a few points, can't remember now but think I needed 15 for a Lexus.

Keep going mate👍

User

Posted 05 May 2022 at 13:05

Nobby I was a marine engineer officer for 6 yrs then 23 yrs as a process leader on an oil refinery. They let me go early.

At one point I was given 12 months before I started HT and I had the palliative RT instead. When I started HT they said the median time was 3 to 5 yrs. I guess I’m 15 months into that already !!!

My psa had risen to 990 and I was still working and well except breathlessness which turned out to be the rib mets. All very scary isn’t it but I mostly try to forget it and crack on working and being a father to my 12 yr boy. No tests for me for 4 months so I’ve shelved it for now.

Good luck

Show Most Thanked Posts

User

Posted 15 Feb 2021 at 15:35

Hi Nick,

I know there will be difficult times ahead, but good luck keep posting, a positive attitude like yours can help uplift other people in a similar situation.

I'm looking forward to a draught beer, fed up of bottles.

Dave

User

Posted 15 Feb 2021 at 15:46

Thanks Dave - Yes it is not great being on this flight path but I am where I am so lets try and enjoy the journey as best we can. And I totally agree a good pint of draught ale is far better that a bottled beer :-)

Nick

User

Posted 15 Feb 2021 at 19:34

Cheers!

Nick

User

Posted 18 Feb 2021 at 09:50

Well we are certainly having an “interesting” time with daily letters from the specialists and updates on results.

So the biopsy results are not good.... 14 of the 15 taken had cancer and were G4 or G5..... bugger. So my total score is 9.... double bugger..... the only time I score high in a test and I don’t want to !!!!! Weirdly my PSA in Dec 20 was 10.7 and in 2018 only 1.......

It is still only showing in my pubic bone and nothing in bladder. The CT scan last tonight was interesting as they where scanning my throat and pelvis but the contrast they used created a lovely warm glow all over..... even the nethers where glowing :-)

I have been on the Tamsulosin (?) since 5th Jan, the Bicalutamide for 21’ish days, the three month hormone jab last Wednesday and the only negative is the lead in the pencil.... labido...... sex drive...... the littler man does not want to stand to attention....... no hot flushes..... no pains and aches..... physically I feel great.

Then again then again the more people ask me “how do you feel” the more I start to wonder if I am missing anything and is that ache in the hip anything or the throb in my foot anything....... if only it was a throb somewhere else :-)

Anyway we have to smile as crying does nothing and a smile takes less energy. My wife is my rock and although it is hard for her to watch and be powerless at least we can hug and she can still moan at me :-) My daughters who are 21 and 23 where great when I told them. One has severe learning difficulties so a lot of things in life for her are very black and white but she lost her uncle to cancer a few years ago and her grandad two years ago. But she took it very well..... my eldest is very much like me..... brave on the outside and emotional whirlwind inside.... but she is doing ok and they have their mum - my ex-wife - who has been great.

So..... any tips are welcome..... any humour or beers are very welcome and if I can help YOU then let me know ..... I may not have the answer but I do have two very good ears .....

Be safe :-)

Edited by member 18 Feb 2021 at 12:29 | Reason: Spelling :-)

User

Posted 18 Feb 2021 at 11:47

Sorry to read your Gleason Score is a total of 9.

Your positive attitude is wonderful and writing style uplifting!

Thanks for update.

Ido4

User

Posted 18 Feb 2021 at 12:59

Well the postman’s been and another letter...... or two.

A lovely letter introducing my two new specialist nurses M and N and given it is a letter and not a proper face to face meeting it was nice to get....

And a letter with the date for my telephone Urology / Oncology consultation 10th March .......

Well at least we seem to be progressing along the journey with some degree of rapidity... just want to get my teeth into what the plan is..... how are we going to manage it..... I know it can’t be cured or cut out but what else can we do to give me as long as possible......

Guess we will have to wait and see ;-)

User

Posted 18 Feb 2021 at 22:44

Here is a post from about a year back. It is now a bit disjointed because some replies from "Andrew" have been deleted, but you will still see the general optimism from some of the contributors.

https://community.prostatecanceruk.org/posts/t23226-It-s-not-a-big-deal---is-it

So all I can say is keep enjoying life, no point in being miserable well not unless the beer runs out.

Dave

User

Posted 28 Feb 2021 at 15:55

Well, all is very much the same here. I have my first Urology / Oncology consultation over the phone on the 10th so until then I just take the tablets and try and get on with stuff.

Weird that I feel no different, since taking the Tamsulosin the waterworks are fine and back to the way they where when I was 18.... four more days of the hormone tablets and then I am off them as on the three monthly hormone jab.

I have signed up for the #MarchtheMonth and will be doing 11,000 steps and so far have raised £1.6k which is not bad in less than 48 hours.

Wishing you all well and remember when given Lemons we make lemonade .... not easy at times but a good dollop of humour always make things better...... :-). BE STRONG.

User

Posted 27 Mar 2021 at 09:35

How time flies......

Well I have immersed myself in the #MarchtheMonth campaign and have been walking 11,000 steps a day and raising money and awareness and I must admit it has been fun. Having two dogs I walk them every morning anyway so 11,000 steps is not that much more. I went public via Facebook and LinkEdin with my storey and MarchtheMonth activity and raised over £3k, encouraged over 40 men to go and have a PSA test of which. two are being followed up....

As for me.... well the last PSA was up from 10 to 17.6 which given it was done three days after my biopsy I was not surprised so we had another test two weeks ago and well get those results soon. Still on the tablet a day and a hormone jab every three months.... still feel the cold more than I used to... still get hot flushes but not so bad now and still get worried every time I get an ache or pain. Touch wood not bone pain.... but then I have no idea what that would feel like anyway.... I feel much the same bar a few muscle aches from all the extra walking. The next phone consult is next Wednesday so we will see what they have to say.

Sold the motorbike and taken up fly fishing..... well practising in the back garden but hope to get on the water this coming Friday. The motorbike was sad but any time I need to get away I will with the wife and kids and if I need to be on my own then i'lll go fishing or shooting......

The key thing is not to think too much and to take each step as it comes.... yes it don't look good but then a lot of things don't. Heck tomorrow I could win the lotto or drop dead from a freak accident.... today is precious so make it count.

User

Posted 27 Mar 2021 at 10:20

Nobby, you mention still taking a tablet every day - do you mean the tamsulosin or are you still taking bicalutimide?

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

User

Posted 27 Mar 2021 at 15:38

Sold the motorbike: took up fly fishing. You're showing your age. Lol

Dave

User

Posted 31 Mar 2021 at 11:35

@DAVE - Showing my age is not far off it - these bloody meds mean I feel the cold, feel tired and have to eat more....... well I blame the meds anyway.

Yes the table is the Tamsulosin Lyn.

BUT.... drum roll please...... the good news..... is .........

ALSO.... yes there is more........ I walked 450,000 steps for #Marchthemmonth, raised £3.5k for Prostate Cancer UK and encouraged 32 blokes to get a PSA test of which two are under observation.

Now all I need to do is get Boris to reply to the email I sent him so we can engage him and get regular testing as standard for all men over 50....... :-). But that may take a little longer..... 😀

User

Posted 31 Mar 2021 at 23:34

Great to hear the positive news re psa going down. Its such a relief. Well done on the fundraise and promoting the prostate testing to your friends etc. Totally agree that national prostate screening/testing must happen. Well done 👏👏

User

Posted 01 Apr 2021 at 01:34

Originally Posted by: Online Community Member

Now all I need to do is get Boris to reply to the email I sent him so we can engage him and get regular testing as standard for all men over 50....... :-). But that may take a little longer..... 😀

I constantly nagged and beseeched a friend in his fifties to get a base-line PSA test, “next time you go to the doctor’s”.

As he is an ex-Para and an ‘I don’t do doctors,’ kind of a guy, it was two or three years before he had to attend the surgery for something.

His bloody dopey GP sent him away with a PSA information leaflet, rather than a blood test form!

Cheers, John.

Edited by member 01 Apr 2021 at 01:35 | Reason: Not specified

User

Posted 01 Apr 2021 at 09:48

Because we have two sons, our nurse told us to get the doctor to start testing their psa in their 40s. If men are struggling to do so in their 50s, I fear they will be banging their heads against a wall in their 40s :(

User

Posted 01 Apr 2021 at 16:03

Good PSA result Nobby and well done on the fundraising. 450000 steps, go you!

Ido4

User

Posted 30 Apr 2021 at 17:57

Well had the second Hormone jab yesterday (oner every three months) and a PSA test so we can do them at the same time. The bugger PSA has risen to 11. So was 1 in 2018... then 10 in Jan..... up to10.6 in Feb down to 2.6 and now 11.... Feel absolutely fine and don't feel any discomfort but getting that phone call has taken the wind out of the sales a little.

The GP is not worried and said they can go up and down but I kind of prefer the down and not up.

Now starting to wonder if the sore hip is from the gardening last weekend or something else......

Well, it is what it is and we just have to get on with things. No point letting it get you down.....

Thank the lord for this site as at least her eI can vent a little and share my worries :-)

User

Posted 08 May 2021 at 15:33

Hi nobby, sorry to here that psa result. Cancer does not usually get hormone resistant in a few months. I guess next test is in three months I guess I would wait for that, but others might recommend another test in a few weeks.

Dave

User

Posted 16 May 2021 at 07:10

Another PSA test but due to lack of nurses it had to be close to my latest hormone jab so no real time for the hormones to take effect.... unless they work immediately. Anyway the PSA was down from 11.45 to 10.3 which in a week I guess is good? The downside is the left hip now aches whenever I sit down and when I lay prone - I do a lot of shooting - the pubic bone is really painful.

Guess the bone cancer is on the march but we have a full body bone scan on Mondays and a consult on the phone on Wednesday so we will know more then. I will be honest and say I am scarred but trying to keep positive. Keep having stupid thoughts like do I buy a new car or iPhone or is it worth it as I may not have long and it is another thing for the wife to sort out.... stupid I know....... Started on the Will as that is always good to do no mater what as the Pandemic has taught us anyone could be taken at short notice and a will is essential. Five months from diagnosis and a whirlwind of a journey. So much to learn, remember, process and at the same time trying not to think about no seeing my daughter get. married or holding my grandkids.... do I plan the I mean. who is to even say she will get married or have kids..... she is 23 so the this not such a daft thought. The wife is taking it harder as she sees me wince when I stand and to top it all, she is now under threat of redundancy.... Several days of tears and what does she do and after 16 years show had hoped she would still be there while we went through this illness. I went through the it is a positive thing... new start, new beginnings and opportunity to meet new people...... and a part of me was thinking when I go who the hell is going to keep her positive. We got her a new horse trailer to replace her rusty old lorry to cheer her up :-).

I did have a good meeting with the local MP on Friday about getting men being screened for PSA by the NHS as a formal programme and it turns out this was something he looked into 20 years ago. It was then viewed by the NHS and consultants that the screening process was not worthwhile and not accurate enough. He did say he will get in touch with Prostate Cancer UK and raise the question again. I notified Prostate Cancer UK he would be in touch and it seems the tests are still not accurate enough for a formal programme of screening. So, all we can do as men with Prostate Cancer is keep spreading the word and get men toast for the test.

Well chin up chaps.... I will install the stiff upper lip above my loose flabby chin and march on. I don't often get down so forgive the negative vibes. Off now to walk the dogs - 8 miles and then get ready for a clay shoot with my brother in-law and some of the guys.

The great man once wrote "Nothing in life is good or bad but thinking makes it so". Well he never tried my wife's cooking :-)

User

Posted 16 May 2021 at 11:14

My PSA dropped from 990 to 14 after just 3 months of HT. Hoping it goes to zero. I have extensive spine spread and needed palliative RT before I took the HT plunge. I’m just a year younger than you. I hope HT gets control and maybe you could have your hip zapped ?

User

Posted 16 May 2021 at 11:54

Hi nobby,

The hormone injection is a pellet that dissolves over a three month period. The drug it releases blocks some receptors (I think in the pituitary gland) as long as you have even a small amount of the drug in your body 100% of these receptors are blocked. So as long as the next injection is before the pellet has fully dissolved 100% will be blocked, and even when you have the next injection and the drug may be double the concentration in your blood, it is still 100% that are blocked. So in short your PSA tests will be accurate irrespective of how close they were to a hormone injection.

I think a testosterone test may be a good idea. We need to establish whether the injections are not bringing your testosterone to castrate levels, or that they are and the cancer is castrate resistant. I have never heard of the injections not bringing the testosterone down, but also I have never heard of the cancer being castrate resistant within a matter of months rather than a couple of years.

If your GP won't do the testosterone test you can order one online.

The Will is very sensible. I really hope no one will be reading it for a few years. With advanced prostate cancer one usually goes through a progression of more agressive treatments starting with HT, and then various other things such as chemo. I would have hoped you would be around for at least five years if not fifteen.

I hope they find some treatment to hold the cancer back.

Dave

User

Posted 16 Jun 2021 at 12:39

Well I was in for a treat today as I had a face to face meeting with the Addenbrookes Oncology team !!!!!

The bone scan was fine and no new areas so still just in the Pubic bone in one small section. The PSA is now down to 6 but still a little high.

The bone pains have gone and I feel amazing..... that is the thing.... I have cancer yet I feel great...... not complaining....

So we will keep the Tasmsulosin going and the three month Hormone injection but now getting the Enzalutamide as well...... I'll rattle soon.... Also going for a Bone Density scan and another CT scan.......

Never taken meds before so can anyone recommend a good app to remind me to take them ?

Anyone else on ENZALUTAMIDE and had any side effects ? I have read all the blurb and it sounds scary 1 in 10 had X and 1 in 10 had Y and 1 in 100 got Z....... that means 9/10 didn't or 99/100 didn't......

Anyway, time for some lunch - grilled trout - and to do some more work.

Be safe and keep well.

Nick

User

Posted 16 Jun 2021 at 12:59

I'm glad things are stable for you.

Originally Posted by: Online Community Member

Never taken meds before so can anyone recommend a good app to remind me to take them?

I'm not great at taking medicine. Setting an alarm on the phone helps. Problem is if I have to postpone it, I then forget completely.

Dave

User

Posted 16 Jun 2021 at 17:35

Hi Nick,

Eight months on Enza now and 3 monthly decapeptyl jabs for nearly a year. The Enza has made my hot flushes worse especially at nights and I get tired but it could be a combination of both that has increased the tiredness. Find I am out of breathe more often and my resting heart rate has gone up from 59 to 68 over the course of the year.

Cheers

Jay

User

Posted 12 Jul 2021 at 14:04

Well two weeks on the Enzalutamide(?) and I feel fine - hot flushes are about the same..... and have found a great app for the iPhone called Medisafe which not only recognises the meds but allows me to set the times to take them and reminds me....

It has to be said two after starting Enza I was diagnosed with a Kidney stone and Kidney infection and have been in and out of hospital with the a rather nice 7mm stone..... Had it zapped this morning so hopefully it will be gone in a few days and I can focus on the up and coming Radiology.

Hope all are well and keeping safe.

User

Posted 09 Oct 2021 at 20:18

Well firstly sorry for not keeping things updated but it has been a bit of a whirlwind.

20 Radio Therapy sessions - 5 times a week and they where not that bad. I was not a candidate before but as everything was kind of in the same place they put me forward and only in the last week did I start to feel any real side effects. Three days after Radio Therapy ended I was back in but this time to have the kidney stone removed. Day surgery to remove a 43mg stone which in itself was ok but having a stent in place for a week hit me hard. I felt weak, was up five times a night and just drained. Two week on and I am getting there - hot flushes are still regular 2am, 11am 6pm and 9pm but it may be linked to when I take the Enzalutamide.

Next Phone Consult is this coming Wednesday and I went for a Drive Through blood test on Friday and had the results already and the PSA has dropped again to 1.17 from 2.34. No side effects from the Enzalutamide bar the hot flushes and all the bone pain has gone. I feel great... yes some joints ache but this could be from the drugs...... DEXA next week will tell us more the state of the bones but if they are as in good condition as I feel then no worries.........

The app Medisafe keeps me taking the meds on time and tracks how many I have and is a great app.

Keep safe guys and ill try and post more often.......

User

Posted 10 Oct 2021 at 00:22

Hi Nobby,

Good to hear from you. Actually a long break between posts is good, it means you are getting on with your life and finding better things to do than post here. Mind you a break of a year or more is worrying then we assume you dropped down dead.

Hot flushes at regular times is unusual, when I had them they were unpredictable, but hot weather was never good.

Dave

User

Posted 10 Oct 2021 at 14:24

Cheers Dave,

The consultant believed the regularity of the hot flushes was related to the regularity of the meds I take and when I eat. With the animals we look after and work we tend to eat at the same time to could be why the flushes are so regular.... or just could be because I'm me.....

:-)

User

Posted 30 Dec 2021 at 14:30

A belated Merry Christmas to one and all and an early Happy New Year..... yes Happy..... we may not feel it but we are still here and that is a major thing.

Since my last post I have had a DEX scan for bone density and another blood test and another virtual consultation.

DEXA was normal -... me normal...... well that is a good thing.

PSA Test - down by 50% again so from 1.78 to .712 ... ok it is more than 50% but who is quibbling about small numbers. So the Enzalutamide(?) seems to be working and bar to hot flushes it all seems to be good.

Consultation conclusion..... don't want to talk to me for another three months..... well that is nice and I thought we were so close! They also do not want to repeat the DEXA for another three years....

Forgive the somewhat flippant tone I have at times but that is my coping mechanism. Like Hawkeye in MASH - yes I am that old - I tend to to use humour to deflect..... work well. The good news is they think I may be here in another three years which given in Feb 21 I was given 18 months is good news.

It is not all good news and sun flowers. Yesterday when shooting I had a mega HOT FLUSH but could not take my jacket off and felt like I was overheating..... lost concentration due to being so hot and had to stand down from the drive to try and cool down. Lesson learnt..... always dress so you are able to cool down yet not get too cold..... HOT FLUSHES at NIGHT...... sleep with the bedroom windows open with your feet not covered...... I still get hot flushes but not as bad and seldom have to get up. DRINK..... water..... I drink 3ltr a day and when I don't I feel it feeling sluggish and heavy..... I also drink my two coffee's or two tea's but make sure these are Artisan brews so special and I make a real deal out of them so they are special. WEIGHT..... with the reduction of testosterone I seem to put weight on very easily and although I walk 6-8 miles every day it does not seem enough so diet and exercise are key....... SLEEP..... I am still working full time and although from home I still find it hard by the end of the week and most evenings find myself dropping off on the sofa in front of the TV. I am trying not to drop off in front of the Sofa but going to bed and making sure the sleep I get is good quality....... but not too much.... I force myself to do things and keep busy both physically and mentally......

LASTLY...... What will be will be.... try not to think about it but when the emotions surface as they will let them..... have a bloody good cry and get it out of the system. We are only human and bottling up stuff does not help.

Anyway.... enough prattling on from me.....

HAPPY NEW YEAR....... and be safe :-)

User

Posted 30 Dec 2021 at 15:45

Aw Nobby, what a great post - happy Christmas and a very healthy & lively 2022 to you!

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

User

Posted 30 Dec 2021 at 22:10

Good news Nobby, happy new year.

Dave

User

Posted 31 Dec 2021 at 16:46

Great post Nobby.

All the best to you and yours for 2022.

Ido4

User

Posted 24 Feb 2022 at 18:03

It has been a year since I was diagnosed with Stage 4 Advances Prostate Cancer with a G score of 9/10 - the only test you want to score low in and I get a 9/10 !!!!!!

Be strong, have fun and smile and enjoy life..... we only have one :-)

User

Posted 24 Feb 2022 at 18:06

Great post, Nobby - stay well!

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

User

Posted 24 Feb 2022 at 18:20

What a wonderful attitude. Keep well

User

Posted 24 Feb 2022 at 18:32

Keep moving forward us G9ers must keep battling great post nobby 👍

User

Posted 24 Feb 2022 at 21:01

Lovely post ! My mantra also. Stay well and best wishes

User

Posted 24 Feb 2022 at 21:03

Originally Posted by: Online Community Member

had to call an end to the being shot out of a cannon as the Oncologist was not happy with that :-)

Bitterly disappointing loss I imagine. Great post NOBBY, thanks.

Jules

User

Posted 24 Feb 2022 at 23:44

Good to see some of the same people posting updates which gives me faith and hope.

Keep safe guys and gals and keep that still upper lip up, even if it is above a loose flabby chin :-)

We should all have a mass get together - Summer gathering :-)

User

Posted 25 Feb 2022 at 12:15

Originally Posted by: Online Community Member

I like that analogy “flight path” 👍

User

Posted 25 Feb 2022 at 12:26

How uplifting Nobby! Keep going. My OH is due to have RALP at Addenbrokes on 22nd March. No two days the same (sometimes no 2 hours). It is an emotional rollercoaster! Keep well x

User

Posted 26 Feb 2022 at 13:04

Hi Nobby, glad things are going OK. I'm looking forward to the better weather and hopefully a summer with less pandemic restrictions.

Dave

User

Posted 05 May 2022 at 11:13

Morning folks and I hope find everyone well and being positive 😬

QUESTIONs

How many of you who are of working age are still working ?

Anyone receive PIP ? I ask as given I have a terminal diagnosis I should get it but only in the last six months... but when do I know the last six months start!!!!!!! Any advice welcome.

Remember guys.... talking helps..... living life is even better and keep a stiff upper lip... even if it is above a loose flabby chin.

User

Posted 05 May 2022 at 12:10

Hi Nobby nice and upbeat as usual. Good for you and you’re a role-model to us all.

User

Posted 05 May 2022 at 12:28

Apparently Citizens advice or McMillan's will assist if you can bag a few points, can't remember now but think I needed 15 for a Lexus.

Keep going mate👍

User

Posted 05 May 2022 at 12:29

Chris - I get your point.... "incurable" in the sense there is not treatment for me just drugs to delay. When I talk to the consultants about the prognosis they always talk in "many months" which is fine but would prefer years but heck I'll take the "many" 😀. They did give me 18 months but given I am on month 15 and still feel the same I am not sure who's date system they are using 😆

I am lucky in that I work for Hotel Chocolat and have a great boss so work is desk based and although stressful at times - you have no idea how hectic it gets in the run up to Easter and Christmas but in the main it is ok.

What where you doing before you retired ? Would love to medically retire and work on the family farm but not sure how to do this.....

Just had a chat with one of the nurses and they are not concerned about the PSA rise but appreciated my concern - great team at Addenbrookes Hospital - so just got to sit and chill and wait for the consult in a weeks time.

User

Posted 05 May 2022 at 12:39

Hi Jasper.... I walk the dogs every morning for 5 miles and while walking I feel great. Afterwards the joints ache like mad and sitting down is not comfy so have a standing desk for work. I will have a look at the PIP process and give the form a try and see how well I score :-)

User

Posted 05 May 2022 at 13:05

Nobby I was a marine engineer officer for 6 yrs then 23 yrs as a process leader on an oil refinery. They let me go early.

At one point I was given 12 months before I started HT and I had the palliative RT instead. When I started HT they said the median time was 3 to 5 yrs. I guess I’m 15 months into that already !!!

Good luck

User

Posted 27 Jul 2023 at 18:33

Well it has been a while since I was last on the site and time has flown by :-)

CHEMO side effects..... for those who are interested - and these are what I had..... you have none :-)

1. Learn to inject yourself post chemo with anti-bionics for a few days - no big deal - under the skin and easy

2. Taste - my taste buds have gone bonkers and everything tastes different - not bad just different - all bar Monster Much (Beef flavor) they still taste the same.

Will try and post more often...... BE GOOD - STAY SAFE and most of all ..... HAVE FUN.

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.

Notification

Join the online community now.