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User
Posted 03 Nov 2018 at 21:52

Hello folks

Thought it only polite to introduce myself as a new member of The Naughty Walnut Club.

I'm Chris, 59 years old and 2 months into a diagnosis of advanced Prostate cancer and feeling ok . Check my profile out for  dx details etc, I plan to update it on a regular basis keeping a positive light hearted slant on developments for as long as I can. Excelent forum by the way, some of the experiences on here have raised my spirits no end.  Thanks to all , catch up soon.

User
Posted 03 Nov 2018 at 21:52

Hello folks

Thought it only polite to introduce myself as a new member of The Naughty Walnut Club.

I'm Chris, 59 years old and 2 months into a diagnosis of advanced Prostate cancer and feeling ok . Check my profile out for  dx details etc, I plan to update it on a regular basis keeping a positive light hearted slant on developments for as long as I can. Excelent forum by the way, some of the experiences on here have raised my spirits no end.  Thanks to all , catch up soon.

User
Posted 04 Nov 2018 at 05:25
Hi Chris

I'm on a similar path to you, diagnosed with metastatic PC in August with PSA of 14. PSA now 3.35 after prostap and 2 bouts of chemo.

I'm 4 years older, main problem for me at the moment is irregular sleeping patterns, dog tired at 8pm but wide awake at 4am, driving my poor wife crazy. Think its down to the prednisolone steroids.

My next target is a holiday in March once I've got the 6 Chemotherapy sessions under my belt. Since I got diagnosed I'm classifying this as life number 2, certainly not as much fun as life number one but making the best of it.

Good luck mate.

User
Posted 04 Nov 2018 at 12:55

Hi Chris,

Welcome to the club that nobody wants to be in but here we are,I used to love Walnuts before 2016 but can't look at them with any interest.

It's nice to see your up beat attitude to your diagnosis and i do think it helps not only you but other members on here too.I think you will get a lot of support on this site as i did when i joined in 2016.I may have had a better start to the diagnosis as mine was picked up during a medical for the renewal of my 7.5 ton driving license that i had to pay for and may have given my doctor more incentive to take notice of microscopic blood in my urine sample as i had no other symptoms of prostate cancer and after what i thought was a low PSA of 2.19 he decided to take it further.

Good luck with your future treatment and keep use all in the loop.

Regards John.

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User
Posted 04 Nov 2018 at 04:02
Hi Chris,

Sorry you have ‘a little difficulty down below’.

It’s encouraging to read your positive outlook and ‘concentration camp humour’ which is shared by myself and a few others on this forum. Others however are more disheartened, which I suppose is only to be expected when given a cancer diagnosis.

Best of luck with your treatment, and I hope you get your pension and free telly licence, but the pension age will probably have increased to 70 by the time you’re 66!

Naughty Walnut Club - mine is probably pickled somewhere down Guildford way!

Cheers, John.

User
Posted 04 Nov 2018 at 05:25
Hi Chris

I'm on a similar path to you, diagnosed with metastatic PC in August with PSA of 14. PSA now 3.35 after prostap and 2 bouts of chemo.

I'm 4 years older, main problem for me at the moment is irregular sleeping patterns, dog tired at 8pm but wide awake at 4am, driving my poor wife crazy. Think its down to the prednisolone steroids.

My next target is a holiday in March once I've got the 6 Chemotherapy sessions under my belt. Since I got diagnosed I'm classifying this as life number 2, certainly not as much fun as life number one but making the best of it.

Good luck mate.

User
Posted 04 Nov 2018 at 06:08

Good morning and thanks for the reply.

As you can see by the time of posting , I'm having the same problem regarding sleep !  Also the first in the family to get this awful condition. Hope it goes ok this week mate , keep your chin up.

Chris.

 

User
Posted 04 Nov 2018 at 09:49

Hi John,

Thanks for the welcome. I hope to keep a glass half full tilt on things as they progress while also respecting that other fellow survivors will be in a darker place. 

When I got my dx a few months back I was numb with shock, being told it was wide spread in the bones was awful. As others have posted before me, the first few weeks to get your head around it all is really hard. Once my onco team put a plan in place It picked me up and I decided fight the bugger head on and take each day at a time.  I've joined a "young prostate group" at my local Maggies center to support and share stuff with others and Im doing a course, again at the Maggies which over  a period of weeks covers diet, fitness, diagnosis , erectile problems plus other topics. This is well attended by guys who are better and worse off than myself , this has given me a better prospective of the illness and taste of the hard times ahead. 

Chris

User
Posted 04 Nov 2018 at 12:55

Hi Chris,

Welcome to the club that nobody wants to be in but here we are,I used to love Walnuts before 2016 but can't look at them with any interest.

It's nice to see your up beat attitude to your diagnosis and i do think it helps not only you but other members on here too.I think you will get a lot of support on this site as i did when i joined in 2016.I may have had a better start to the diagnosis as mine was picked up during a medical for the renewal of my 7.5 ton driving license that i had to pay for and may have given my doctor more incentive to take notice of microscopic blood in my urine sample as i had no other symptoms of prostate cancer and after what i thought was a low PSA of 2.19 he decided to take it further.

Good luck with your future treatment and keep use all in the loop.

Regards John.

User
Posted 08 Dec 2018 at 10:12

Just a monthly update folks. I've started my 3rd session of abiraterone and steroids, all blood and lft results normal with my psa lowering again to 0.38 , (14 @ dx). Still feeling ok and am returning to work next week on reduced hours to see how I get on. In my mind I feel it is important to achieve some normality, work banter and sense of " bringing home the bacon " so to speak.  This will help my mental state Im certain , which is half the battle with this bloody ailment !   Body wise I have continued to use an excersise bike to get the heart going a bit and light weights to maintain muscle. My only problems I have are tiredness early evening and shortness of breath now and again.. Heart and lungs have beed checked.. all good , Dr reckons it could be the weight Ive gained (16lbs) pushing on the diaphram squashing my lungs !! At least I know the cause of the gain... the biscuit tin ambushes me in the afternoon and force feeds me chocolate digestives ! Hope being back in work will shift a bit of blubber. See you all in a months time.

Edited by member 12 Jan 2019 at 06:37  | Reason: Not specified

User
Posted 08 Dec 2018 at 11:09

Hi Chris  Great news that things are going so well for you. A positive attitude always helps. Enjoy Xmas and make sure you make it a good one. We all need to try our best to ignore this b*****y disease at times and get on with living.

 

Best Wishes

Ann

User
Posted 08 Dec 2018 at 12:05
Good response so far. Decapeptyl can cause breathlessness.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Dec 2018 at 21:19

Thanks for the reply Lyn. I had my 1st decapeptyl injection in September and my 2nd is due 17th December to last me 6 months. The breathless thing has only started a few weeks ago. This may seem like a daft question but as you get near your topping up date so to speak , does the effect/ strength of the drug weaken , so symptoms , good or bad alter ? 

 

Kind regards

Chris.

User
Posted 12 Jan 2019 at 06:51

Hello all,

Just a monthly update. Had a 6 month triptorelin injection a few weeks back and a blood test last week. Results good apart from psa. Down from 0.38 last month to 0.34 now. Every other monthly result shows a reduction by around 50%.. does this mean it has leveled out to my "norm" ?  Or after only 3 months the Abi is starting to fail ? 

I will ask my onco at the end of January of course just wondered what you guys think. Im back at work full time and feeling good and have a  scan booked next week to see how the bones and lungs are doing after 3 months of treatment.

Chris.

 

 

User
Posted 12 Jan 2019 at 08:05

Originally Posted by: Online Community Member

Thanks for the reply Lyn. I had my 1st decapeptyl injection in September and my 2nd is due 17th December to last me 6 months. The breathless thing has only started a few weeks ago. This may seem like a daft question but as you get near your topping up date so to speak , does the effect/ strength of the drug weaken , so symptoms , good or bad alter ? 

 

Kind regards

Chris.

chris, i am due my 4th Decapeptyl injection 23rd January. i notice no declining effect of the HT as it falls due. i attended an ED clinic last  week and asked my specialist assigned nurse just that question and she said that it can with Decapeptyl, as its an intra muscular suspension, although this could be affected by age and weight. she said Zoladex didnt fade in her experience as its a sub  cutaneous pellett.

User
Posted 12 Jan 2019 at 08:14

Thanks for that Alan, 

Thats one less thing to worry about .

Chris.

User
Posted 12 Jan 2019 at 17:15
Chris, far too soon to worry about whether the abi is failing. With your fantastically low numbers just be happy with that!

AC

User
Posted 12 Jan 2019 at 17:44

Well with your past record my friend , any advice , in my eyes anyway, is as good as a top Doc !!

My scan next week may settle the old nerves , get the results of that and just see. I can live with the bone twinges I get now and again but I will feel happier when I can see any positive change in the lung. If its shrunk or not grown I guess that it is prostate related and the abi etc is working. If not ?  Its a waiting game. Thanks again  AC.

Chris.

User
Posted 10 Feb 2019 at 06:47

Another monthly update . Had a meeting with my onco for scan results. The old bones are recalcifying so the meds are putting up a good fight and he is not concerned about the spot on my lung. It isnt growing or shrinking so the thinking is its benign. All my other blood stats have come back normal so he is just going to monitor me through monthly blood tests. Psa has leveled out at the 0.35 mark so thats my norm. Still at work , feeling weary around 6 or 7 in the evening and feeling the odd twinge , but I will talke that all day long.  Out on the motorbike the other day , " just going to put some air in the tyres love " ! An hour and a half later back home with a big grin. Just thought I would throw that info in for any potential abi users.. works for me so far, enjoy life why you can. 

User
Posted 10 Feb 2019 at 18:48
Chris, brilliant! The benign lung spots are commonplace. I had oncos worried about one in my lungs years ago, but the fact is we old folks breathe in all sorts of crap over the years and it can scar the lungs. Harmless, mostly though. We do our best to take care of ourselves but car and lorry exhausts, industrial output, dirt and grit in the air in cities etc can cause damage beyond our control.

AC

User
Posted 10 Feb 2019 at 19:57

Funny you should mention that AC .  The urologist asked if I had ever worked with chemicals in the past. I have actualy been employed for over 20 years in the food additive and chemical industry , has there been any research into a possible link regarding prostate cancer I wonder ? Thanks for the reply by the way my friend.

User
Posted 10 Feb 2019 at 20:55
When we did a rather non-scientific dip test across the forum membership about 4 - 5 years ago, the most-oft recurring themes were:

- working in aviation

- working with chemicals / oils

- motorbikes

- having had a vasectomy

I can't remember what the others were :-/

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

User
Posted 10 Feb 2019 at 21:32

Wow ! Thats 3 out of 4 for me. Chems, bike and the snip. I will dig deeper on this , thanks Lyn. 

User
Posted 10 Feb 2019 at 21:35

I worked in heavy diesel goods vehicle servicing  and maintenance for 25 years, working in nylon overalls and up to wrists in used  engine oil, probably loaded with carcinogens.

 

 
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