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Chris J's Journey

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User
Posted 26 Apr 2021 at 15:21

So glad that life is still here in a generally good way Chris. I reread your posts from the last year or so and they gave me great hope that when life can look so bad one should never give up because you had no idea that you would be here now.

look forward to reading your posts for years to come (for both our sakes)

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 26 Apr 2021 at 21:51

We are pleased for you 👍🏼

User
Posted 13 Jul 2021 at 17:43
Hi all , not posted on my own thread for 3 months but very good news I think. I’ve been on Decapeptyl now for 6 months and my psa has dropped from 990 to 14 and now to 4.1 which I’m chuffed with ( I think ). Not had official zoom yet but as you know I rejected early Enza re quality of life. All other bloods ok , but randomly my doc wants me to start minimal dose statins as total cholesterol is 8.6 but not been tested in 5 yrs ( and it was 7.3 then ) ! Not sure if I want even more meds if my prognosis isn’t that good anyway …..

I seem to be tolerating Decapeptyl really well with the only real bothersome effect being hot flushes but still tolerable. Maybe 4 lbs weight gain , no moobs nor soreness , aches and pains and fatigue still bothersome but not worse. A bit of brain fog for sure. Definite reduction in libido but not gone completely. EF is superb still and on demand due to regular pump and daily Cialis , but orgasm is very elusive lol. Doesn’t stop me wanting to try.

I do feel at times very negative because there is only one way an incurable prognosis can go , but mostly I keep my chin up and carry on and enjoy what I can.

Love to you all x

User
Posted 13 Jul 2021 at 18:22

Hi Chris, your PSA drop is really good. Sounds like you are doing well, thanks for update. 

Ido4

User
Posted 13 Jul 2021 at 19:45
Good news that your feeling positive most of the time Chris especially with your views on QoL v treatment. EF must play a part in that.

Long may it continue

Cheers

Bill

User
Posted 13 Jul 2021 at 20:33
Great to hear the PSA has dropped so far Chris and your QofL hasn’t been compromised as much as you feared. Keep at it mate

Take care

Bri

User
Posted 13 Jul 2021 at 20:52

Great news Chris.  Long may it continue 

Arthur

User
Posted 13 Jul 2021 at 20:55

Great news Chris. PSA and your QoL .

So pleased it’s working out for you 👍

I will definitely consider Decapeptil if I have to go back on HT. PSA test yesterday and full body MRI today, PET-CT last week . Consultant next week….

Phil 

User
Posted 13 Jul 2021 at 21:07

Great news, keep u the good work. xx

 

regards barbara

User
Posted 13 Jul 2021 at 22:07

Hi Chris,

Great news . All the very best. My chloresterol always c. 5 to 6 ish. I'm substituting cheese and eggs for red wine rather than meds .

Regards Gordon

 

 

User
Posted 13 Jul 2021 at 22:10
Great response CJ x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Jul 2021 at 00:29

Aaaah Chris that is such good news. 

Enjoy every minute you can.

Leila xx

User
Posted 14 Jul 2021 at 01:01

Cholesterol was the only one of my bloods which was a little high, the GP wasn't surprised and said it was the HT, there is a link between testosterone and cholesterol. As I was coming off HT he didn't suggest any treatment.

I don't know if statins have side effects, they were in the news a few years ago but I think blind trials showed placebo had the same side effects, nocebo it is called.

If I were offered statins I would probably decline them, but I guess there is no harm in trying them. You can always stop them if you don't like them.

I'm hoping you have a long life, your cancer is hormone naive, those little b*****rd cells, don't know what's hit them, let's hope it takes five or even fifteen years before they, wake up. 

Dave

User
Posted 14 Jul 2021 at 08:11

CJ 

Good news, keep going mate.

Thanks Chris

 

 

User
Posted 15 Jul 2021 at 02:06
Re the statins - something to talk to the oncologist about. NHS website says that 1 in 50 people taking statins will avoid a serious heart attack or stroke in 5 years - to be honest, a few months ago we would have been seriously doubting whether you would still be here in 5 years but I guess you have responded to the HT so well that it may still be feasible. Dying of a massive heart attack might be preferable to dying of prostate cancer but the prospect of a serious stroke is scary.

On the other hand, I have a deep suspicion that GPs are being paid to put people on statins. They suggested it to John and they hadn't even bothered to do a cholesterol test first to see if he actually needed them :-/

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

User
Posted 15 Jul 2021 at 19:35

Nice to hear 💪🏼👍🏼

User
Posted 16 Jul 2021 at 05:10

Chris, the response to HT is brilliant, and it seems you are in the 20% who can still get erections on HT.

My cholesterol was just over the normal range and statins offered if I wanted. This was a month before my PSA of 58 was discovered, and I deferred starting statins for 6 months to avoid starting them with all the PCa meds, so I'd know which side effect was which drug. I didn't get any side effect from the lowest dose statin I was on, and it halved my cholesterol, leaving me in the middle of the normal range.

HT can push up cholesterol, blood glucose, and blood pressure, so it's a good idea to keep an eye on all these. It is known that lack of testosterone increases the chances of death due to cardio or vascular events via this route.

Wishing you all the best in the circumstances, and keep it up, as they say...

User
Posted 16 Jul 2021 at 16:18
Onco zoom went well and he was so pleased we are going to leave it 4 months till next review ( and to help preserve my sanity ). He’s going to contact surgery re it being so difficult to organise my appointments and blood tests etc. He too feels statins is a best bet so starting low dose 10mg Simvastatin tonight with regular liver function tests as I’m on a lot of meds in general and like my wine 🍷😆

Cheers everyone

User
Posted 20 Jul 2021 at 08:50

Glad your Onco appointment went well and he was pleased with progress.

Fingers crossed the low dose statins work well and you can still have the odd tipple …

Phil

 

User
Posted 20 Jul 2021 at 10:02

Glad oncologist was pleased with your progress Chris. The 4 month gap till next review is good. 

Ido4

User
Posted 22 Jul 2021 at 13:01

So glad things are going ok, hope 4 monthly is a regular gap for you . Take care.

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 22 Jul 2021 at 23:34
I hope the GP surgery takes the onco's comments on board CJ - it is difficult enough having cancer without ongoing battles about appointments. Dad's GP practice has just been taken over on a temporary basis following an unannounced CQC visit which they apparently failed dismally - partly for refusing to see any patients during the pandemic and (I am guessing) expecting 85 year olds with no internet to do Zoom appointments. I am told that a staff member whistleblew to CQC - well done them, I say 👏
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Nov 2021 at 07:06
Hi , all ! Not using the forum much these days as you are aware , mainly for my mental state. I’m 9 months into injectable Decapeptyl hormone therapy now and it seems a success and long may it last. Most importantly my PSA has dropped from 990 to 14 to 4 and just recently 2.2.

I’ve picked up a dream job at a surgeons farm as general labourer and handyman. I feel stronger and fitter than I did this time last year ( mainly my back not giving me grief ) , and never think of cancer while I’m there , yet at the same time plenty of encouragement and inside info haha.

Main side-effects still hot flushes and evening tiredness , but I’ve actually lost weight , no moobs or soreness , but if memory fog , arms and legs weight routines keeping me strong , some low days and moods. Still use daily Cialis and my pump 3 times a week out of habit. Libido not gone , just need more encouragement these days , but function still reliable. I’ve set my test intervals at 4 months to help concentrate on life and not cancer. Holidays and road trips galore. I opted out of early Enza though offered !

Hoping you all ok and a Happy Xmas to you all

Chris x

User
Posted 16 Nov 2021 at 07:59

Hi Chris,

After all the ups and downs you’ve been through these are wonderful results. Pleased that you are feeling better in yourself as well both physically and mentally.

Long may it continue.

Best wishes, Arthur 

User
Posted 16 Nov 2021 at 08:40

Hi Chris, great the HT is working and without too much detriment to your living life to the full 👍

Long may it continue.

Phil

User
Posted 16 Nov 2021 at 08:41

These sound like fantastic results Chris. So pleased and long may it stay this way . Sounds like lots to be really positive about which is great 👍🏽 

User
Posted 16 Nov 2021 at 08:48

CJ 

Good to hear from you again, things sound quite positive. I am probably not far off making the decision on HT. 

Keep going mate.

Thanks Chris

 

User
Posted 16 Nov 2021 at 10:17

So good to hear from you and things seem to be progressing well.

Keep enjoying life Chris.

Roy

User
Posted 16 Nov 2021 at 10:49

Chris,

This is good to hear, and long may it last.

Andy.

User
Posted 16 Nov 2021 at 10:55

Great to hear from you Chris. So good to read how things are for you at the moment. Enjoy many road trips and holidays.

 

Ido4

User
Posted 16 Nov 2021 at 12:36

Love to hear good news. So pleased for you and your family. Getting a job with inside info is a good idea 😉

Have a good rest of year.
Leila. 

User
Posted 16 Nov 2021 at 12:57
Brilliant news Chris, have a great Xmas may see you on a Soton cruise in 2022.
User
Posted 16 Nov 2021 at 14:15
Great update Chris..
User
Posted 16 Nov 2021 at 14:19
Great update , happy Xmas to you and your family .

Debby

User
Posted 16 Nov 2021 at 17:29
Really pleased to see your update CJ - stay well x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Nov 2021 at 17:53

Glad you're back you have a massive fan club here. I reckon you have more fans than Britney Spears.

Dave

User
Posted 16 Nov 2021 at 19:24
Glad to read your still enjoying the QoL Chris, long may it continue.

Cheers

Bill

User
Posted 16 Nov 2021 at 20:15
Great to hear things are going in the right direction Chris

Bri

User
Posted 16 Nov 2021 at 22:25
Great to read Chris. Very inspirational. Thanks for sharing. Clare
User
Posted 16 Nov 2021 at 22:25
Great to read Chris. Very inspirational. Thanks for sharing. Clare
User
Posted 23 Nov 2021 at 15:38

Hi Chris, 

How lovely to hear from you, especially with some good news!

Am so please you've managed to find a dream job that offers you some sanctuary and solace!!

May the good news continue, and wishing you and your loved ones a Happy Christmas!

Big man hugs, Pablo

User
Posted 24 Nov 2021 at 05:58

Such good news and a new job as well., have a lovely christmas xx

 

User
Posted 09 Mar 2022 at 17:32
Hi everyone , I had a full MOT on Monday with full bloods then full body CT and then full body Nuclear Bone scan. A very long stressful day but I rose to the challenge better than normal. I won’t get full results of bloods and scans for a couple of weeks , but VERY happy to report my psa has dropped even further from 2.2 to 1.3 after 15 months on Decapeptyl HT. So a constant fall from over 990 at start.

Despite this awful disease , given my G9T4N1 diagnosis at the start I’ve been dealt a lucky hand I feel so far. In June it will be my 55th birthday and 7 yrs since surgery.

What can I say about HT ?? I’m glad I put it off so long and enjoyed those couple of extra years of normality. The effects are accumulative for sure and catch up on you over a year. But my mind-set is good still. I exercise each day , work hard as a farm labourer , and walk the dogs. I paint and make model planes also - anything to occupy me. People say I look so well and fit and essentially I am !!

Bothersome side-effects are still mainly hot flushes , fatigue and sloping libido ( but it’s not gone yet 😀 ). Not a pound in weight put on , and since deciding to quit daily 5mg Tadalafil my back and knees seem to be improving. Still use the pump 4 times a week and there’s life in the old dog yet ! Fingers crossed the scans are ok and then I can get insurance and have a few holidays.

Best wishes and love to all x

User
Posted 09 Mar 2022 at 17:39

CJ,  really pleased to hear the PSA has at least gone down. Hope your scans prove to be good news. 

Take care thanks Chris

User
Posted 09 Mar 2022 at 17:40
Great news , long may it continue

Debby

User
Posted 09 Mar 2022 at 18:01
Glad to read that!

Bravo for your PSA.

Ready for the springtime work in the farm I guess. What are you going to sow and plant?

My OH started HT a month ago and soon will go for radiation as he had BCR (0.33 PSA) and PSMA showed a spot in a seminal vesicle bed and in one iliac lymph node. Hope it works!

No side effects so far. Too soon. I'm afraid they'll be about to appear. I wonder how he'll cope. Scared.

I'm happy that you're doing well.

The best for you, Chris.

User
Posted 09 Mar 2022 at 18:27

Hi Lola , a mainly fruit farm but a massive barn renovation also ! I’ve planted maybe 800 daisies and daffs and lilies , mow the 5 lawns , painting barn after re -rendering , kitchen garden maintenance, It’s just full on but in the middle of nowhere. Music on , fresh air , hard graft , and a well deserved pint on the way home 😀

Edited by member 09 Mar 2022 at 18:28  | Reason: Not specified

User
Posted 09 Mar 2022 at 18:28
Good news. Shows that the HT is still working well!

All the best,

Chris

User
Posted 09 Mar 2022 at 18:51

Great news. I don't know if you fly those model aircraft. Anyone I know who fly's them ends up sweeping them into a box at the end of a flight and taking the scrap home for a rebuild.

Dave

User
Posted 09 Mar 2022 at 18:58
Hey Dave no these are model jet-fighters made by Revell. I do fly a drone in private though and have 4 superb 1/10 scale RC cars which are big fun
 
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