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After Hormone Therapy

User
Posted 28 Mar 2020 at 09:02

That’s great Pete. Hope the oncology telephone appointment on Wednesday goes well. I can’t see why not with a PSA if 0.02 . 
How are you feeling in yourself, do you feel the HT has left the system now ?

Phil

User
Posted 28 Mar 2020 at 09:13

I feel good thanks Phil.

Doing lots of exercise - mainly on my treadmill and feel fit.

I do get tired in the early evening but maybe that’s an age thing and I do get out of bed around 5am every morning - so not entirely surprising.

Still waiting on my testosterone score - I’m guessing it’s still low because my previously hairy legs only have a little bit of hair now. So maybe the effects of HT are either permanent or slow to reverse.

Not sure but at this stage I’m not complaining.

 

 

User
Posted 28 Mar 2020 at 09:15
I will find out the testosterone score next week and will let you know.
User
Posted 28 Mar 2020 at 09:32

Glad your feeling ok and will be interesting to hear your T score.

Mine was 0.7 last time - I was hoping for more 🤣🤣. Nurse wasn’t surprised and said it could take a year, and won’t measure T level for another 6 months. I asked her to add in 3 monthly PSA tests which she did.

Will be good to get the full Libido back etc. etc.....😉

Also feel that the HT has really affected my mind and I’d like that back too. Although as many have pointed out we are never the same after this journey.

Good luck on Wednesday.

Phil

User
Posted 28 Mar 2020 at 11:28

That’s true, we are permanently changed both mentally and physically after the radical cancer treatments and all the agonising.

My T score was 0.2, 9 months ago and 3.7, 6 months ago.

So it is definitely on the move and it will be very interesting to see the latest score.

I must admit, every time I get a good PSA result it feels like a further 6 months reprieve.

The alternative  is a second biochemical recurrence which would put me on a much feared slippery slope.

 

Edited by member 28 Mar 2020 at 11:34  | Reason: Not specified

User
Posted 01 Apr 2020 at 13:22

Hi Guys

Had my telephone Oncology appointment this morning.

T Score was 8.7, up from 3.7, 6 months ago.

This is now about 1 year after the end of HT which I was on for around 18 months,

As previously mentioned PSA remains negligible.

Doc was happy and said that rising T Score with negligible PSA is a good sign although still early days.

I will certainly take that and wait a further 6 months for my next check up.

All good.

 

 

 

 

 

 

 

Edited by member 01 Apr 2020 at 13:23  | Reason: Not specified

User
Posted 01 Apr 2020 at 13:34

That’s great news ..👍

I see your T has taken a year to get back to 8.7 and was 0.2 at around the 3 month mark. So my 0.8 isn’t so bad at 3 months since HT was due to start diminishing.

Looking forward to my next PSA and T scores in 6 months. I do have a PSA only booked for 3 months but not sure if they’ll still do it due to restrictions , if any at the time.

Hope you can relax now all the signs are good. Keep safe.

Phil

User
Posted 01 Apr 2020 at 19:40

Thanks Phil.

Yes at this time I am quite relaxed about my Pca.

I’m more focussed on the Coronavirus crisis for the time being.

User
Posted 31 Aug 2020 at 14:00
Hey hey Guys and Lyn, I am a Newbie to the site. Ex UK and now living in Victor Harbor, South Australia, where it is currently the last day of Winter and … cold as!

Health-wise I am not too far down the road behind you guys [see my profile]. And most of my issues ( such as muscle wastage; now-tiny ttcles (like marshmallows); a shortened/narrower/often-hiding JT; breasts; flushes; sweats on exercise; mental fog and etc) have been covered by your previous discussions.

Anyway as grim - albeit laced with hope and optimism - as it is, there is comfort in knowing - as Government surveillance would put it - ‘You are not alone’. And hopefully for my part I can inject a bit of humour now and then, such as: Recently someone said to me: ‘Oh well, you’ll probably live to be 90+ ‘ … And I replied: ‘So you’re assuming I want to go shopping three times a week for the next thirteen years.’

Cheers all stay as well as you can be.

Regards, Julian

User
Posted 31 Aug 2020 at 15:36

Welcome Julian. 
Sounds like the HT hit you hard physically. I was very lucky with the physical issues but had a hard time mentally. My last injection October ‘19 so still leaving my system for a little while. Hoping my counsellor will start seeing people soon as I am missing the sessions.

Next PSA & T test in 2 weeks and telephone with specialist nurse or consultant in 3 weeks......🤞

Always a worrying time, especially as one of my close friends Seed Brachy hasn’t worked and he’s looking at a life on HT now...

Take care and chin up 👍

Phil

User
Posted 31 Aug 2020 at 17:58

Hey Phil

Got my 6 month PSA booked for 23 September.

Getting nervous now - it’s been nearly 18 months since HT finished.

Pete

 

 

User
Posted 31 Aug 2020 at 18:01

Best of luck Pete. Always a nervous time and I suppose always will be .......

Phil

User
Posted 07 Sep 2020 at 11:33

Good of you to respond Goalhanger.  ( I think I may have played against you in a few Park games where there is no referee! )  You seem to indicate that you were less physically affected by HT [I’m on Eligard] than myself;  and good luck to you for that.  I avoided mentioning anything about my mental state because it’s early doors and I just don’t know where I’m at in that regard.  As reassuring as a best ever PSA of 0.06 is,  there is a backdrop of mental anguish caused by what I perceived to be my muscles turning to mush.  I’m now an ex-mesomorphic athlete progressively shedding good quality and tastefully apportioned body-hair;  and who doesn’t even walk with the same previous co-ordination,  due to muscle wastage,  which I had life-long taken for granted.   Basically at this stage where statistically I have a 30% 5yr survival potential I am kind of optimising my chances,  but without any optimism if you get my drift;  and this a projection I make,  not begrudgingly,  on behalf of my 5yr old German Shepherd rescue dog.  If I said that currently life doesn’t seem very much worthwhile living it is more an appreciation of fact than an attitude.

’To treat or not to treat?  That was the question.  Whether ‘twas dumber in the mind to suffer the HT and IMRT etc etc … thereby taking arms against the BigC;  Or by not opposing,  end it?   The fascinating hypothetical that all advanced PC sufferers are obliged to consider.

There you are you see,  I said I was a bundle of fun,  didn’t I?

Cheers,  stay as well as you can be....
Julian

Edited by member 07 Sep 2020 at 11:35  | Reason: Not specified

User
Posted 07 Sep 2020 at 14:12

Hi Julian. Everyone seems to react differently to the Hormone Therapy , plus it’s also the fall-out of being diagnosed with a possible life limiting disease. 
I feel I am only just starting to get my head back 7 months after it should have started wearing off. 
I have no idea if I personally suffered more than ‘normal’ due to having some childhood issues rear their ugly head, but I certainly don’t want to go back on it. Fingers crossed I won’t have to but if the PCa comes back I suspect my family will want me to fight back with all the weapons at my disposal.

There are a few on this forum who have fought a brave battle with as little intervention as possible. As with most decisions in life no one knows what the outcomes would be had one chosen a different path.

Only 7 days till my next PSA and T tests ...and getting nervous. Then a telephone appointment with consultant or nurse. Much prefer a face to face but I suspect they’re not doing those now.

Phil

User
Posted 10 Sep 2020 at 09:17

It’s incredible what this thing does to you.

I am on 6 month reviews with my oncologist and that is happening in a couple of weeks.

For most of the 6 month period I don’t give much thought at all to my condition and I live in relative peace and harmony.

Yesterday I called my GP to tell him that I am getting very sharp pains in my right side when lying in bed and if I move the wrong way it can be extremely painful.

He has now ordered another radioactive  bone scan and an MRI scan for me.

So I now have  an upcoming PSA test, 2 scans and an oncologist appointment within the next few weeks.

And this morning I was suddenly filled with an overwhelming sense of dread.

Hopefully, all will be well and in a month from now I hope I can return to peace and harmony.

Until the next time !

 

 

 

 

 

 

 

User
Posted 10 Sep 2020 at 09:22

Best of luck Pete. Fingers crossed it’s something else and simple to fix.

Phil

User
Posted 10 Sep 2020 at 09:31

Cheers Phil - we all live in hope.

User
Posted 10 Sep 2020 at 11:14

Good luck Pete. Hopefully the pains are not cancer linked.

The dread you describe is so recognisable to me and I’m sure many others.

Ido4

User
Posted 10 Sep 2020 at 14:30
Gosh, your GP is a bit trigger happy! Fingers crossed but I am sure all will be well.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Sep 2020 at 16:05

I guess he is just covering his derriere.

He did a similar thing a couple of years ago when I had a bad back.

 

User
Posted 25 Sep 2020 at 08:32

So, my latest 6 months results are PSA < 0.02 and Testosterone 9.2.

This is 2.5 years after salvage RT and 1.5 years after the end of HT.

Very happy with this and thankful.

Now in year 7 since diagnosis.

 

 

User
Posted 25 Sep 2020 at 16:01

That’s great Pete , long may it continue. I’m now 11 months after my last HT injection. Had my 6 monthly telephone consultation. PSA now 1.2 , up from 0.97. Consultant seems ok with that. Testosterone now up to 5.5, so a little way to go with that but a good improvement none the less.
Still seem to need antidepressants but I have at least reduced the dose.

Phil

User
Posted 25 Sep 2020 at 23:39

Great results Pete.  

User
Posted 26 Sep 2020 at 00:04

Good to hear your T results are progressing well Phil and that your Consultant is ok with your PSA result.  Hope you can relax a little for the next six months.  Sounds like you’re doing well managing to reduce your anti depressant dose.  Good luck going forward 😃

Keith will have his PSA test soon and then a phone consultation on the 15th October.  We are starting to feel anxious now as this will be his first PSA since completing his RT.  Hoping it’s good news.  He has had a lot of aches and pains, especially in his right hip, hopefully just the effects of the ongoing HT.  

All the best,

Angex 

User
Posted 26 Sep 2020 at 04:04

Hi Ange

Regarding aches and pains, I have them perpetually in my back , hips and side of my abdomen.

There have been times when I got scared because I thought they might be cancer related but I try to convince myself that they are due to a combination of over- exercising and advancing age.

My GP is supposed to have organised some scans to check but I am still waiting on a date for these.

l hope all goes well for Keith.

Edited by member 26 Sep 2020 at 04:05  | Reason: Not specified

User
Posted 26 Sep 2020 at 04:08

Good news on your results Phil.

Keep hanging in there.

User
Posted 26 Sep 2020 at 09:44

Great result Pete. 

Ido4

User
Posted 26 Sep 2020 at 16:22

Hi Pete,

Yes it’s very scary, every ache and pain we tend to think is related to the PCa.  When Keith was first diagnosed in August 2019 his bone scan revealed a lesion on the right hip.  Following the Team meeting his Oncologist decided to do chemo treatment first, which took place in March 2020.  On completion of 6 chemo sessions, and a further bone scan, his Oncologist was of the opinion, and the Team agreed, that as they could see no change to the lesion they were ALMOST certain it was not a met.  Keith then had RT to the prostate and now awaits a PSA test and consultation with Onco on 15th October.  So early days into this disease in the scheme of things, but we are still very suspicious about the hip!!  Holding our breath for the PSA result.  We are keeping our fingers crossed that he won’t have to stay on HT for life, he’s experienced twelve months of it and taken all the side effects in his stride and I think he’s been amazing.

Your latest results are great 7 years on and I can imagine how happy you are after all you’ve been through, really pleased for you.  Hope your GP can arrange your scans soon so you can have further peace of mind and keep moving forward. Like you, Keith keeps active and always has some sort of project on the go so we keep saying it’s only muscle aches and advancing age.

We’re all fighting this disease as best we can and trying to keep positive.

Good luck to all xx

User
Posted 28 Sep 2020 at 10:53
Hi All … and very good news Pete!
User
Posted 28 Sep 2020 at 11:12

Thanks Ange and Pete.

Fingers crossed for Keith’s PSA and consultation in October. As you say there’s always the worry that any ache and pain is PCa related.  
My consultant wants to see me in 4 months which I thought was odd but it will coincide with my year from when the HT should have started wearing off. ( last injection October’19).

Phil

User
Posted 28 Sep 2020 at 11:26

A simple question —— what is the normal T level for a 65 year old ? Dr Google only seems to show it measured on a different scale...

User
Posted 29 Sep 2020 at 00:02
Castrate level is generally thought of as 20 ng/dL or 0.7 nmol/L - normal levels are 250 - 1000ng/dL or 8.7 - 35nmol/L - a man of 65 could be in the lower half of the range rather than the upper half without anyone being concerned.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Sep 2020 at 10:02

Thanks Lyn,

So my 5.5 is ok at 8 months since my HT started to wear off.

Phil

User
Posted 29 Sep 2020 at 14:59

Mine is only 9.2 and that is 18 months after the end of HT.

It falls within the range though and was described as normal.

Not that there is anything remotely normal about all this.

Edited by member 29 Sep 2020 at 15:01  | Reason: Not specified

User
Posted 30 Sep 2020 at 10:10

Pete, looking forward to getting the T back up 👍...

Good luck on your journey too.

Phil

User
Posted 30 Sep 2020 at 13:48

Originally Posted by: Online Community Member
Castrate level is generally thought of as 20 ng/dL or 0.7 nmol/L - normal levels are 250 - 1000ng/dL or 8.7 - 35nmol/L - a man of 65 could be in the lower half of the range rather than the upper half without anyone being concerned.

Your normal range doesn't agree with the lab my tests go to, which lists the NHS normal as 6.7 - 25.7 nmol/L, and yes, it drops linearly from age 25.

The tests for the GnRH Agonists that I've looked at regard ≤1.2 as castrate level, although all the actual measurements I've seen from people I know on GnRH Agonists are <0.5 (mine is 0.2).

User
Posted 30 Sep 2020 at 17:21
Isn’t it a bit of a vicious circle though Phil ?

Prostate cancer feeds on testosterone, so the higher the T score goes, the higher the likelihood of future problems if there are some cancer cells still lurking around ?

User
Posted 30 Sep 2020 at 17:47

Personally, at the moment I just want to get back to as close to normal again as I can. I can’t worry about the PCa coming back as it would consume my mind and mess up what future I have.

The HT was a journey that’s for sure.

But saying that I really do not want to go back on - I don’t know if I could deal with it all again...

Lets hope that the scientists can find a better way to deal with this dreadful disease in the future.

Take care

Phil

Edited by member 30 Sep 2020 at 21:46  | Reason: Not specified

User
Posted 11 Oct 2020 at 22:01

Hello! 2004 surgery to renove prostate, 2010 radiotherapy, 2016 Zoladex and Eligard. Now I have doubling PSA at 11.4 and PSA at 1,30 with HT. What should I do? Go with chemo? Any advice? Regards

User
Posted 12 Oct 2020 at 16:51

Hi gcf1942. You are on a completely different pathway to me so have no experience or knowledge of the chemo treatment. Hopefully someone will see and offer their experience and knowledge.

Good luck

Phil

User
Posted 12 Oct 2020 at 18:16
Hi gcf, what do you mean by doubling PSA at 11.4 and PSA at 1.30? the two numbers make no sense, possibly it is reported in a different way in your country?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Oct 2020 at 18:34

His profile says doubling time 11.4, but does not specify weeks or months.

Thanks Chris

Edited by member 12 Oct 2020 at 19:32  | Reason: Not specified

User
Posted 12 Oct 2020 at 20:16

Also, Zoladex and Eligard ( = Prostap)?
Together?

User
Posted 12 Oct 2020 at 21:51
It's Brazil 🤷‍♀️
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Feb 2021 at 12:58

So latest update ....consultation over phone this morning with nurse, not consultant.

PSA now up to 2.75 , was 1.2 in September with a lowest of 0.08 .

Testosterone now 8.8 which she says is fine.

She wants to keep an eye on the PSA so another test in 3 months ... Hoping it stays at that. Must admit I’m a bit worried now.

I also had what I thought was a water infection 4 weeks ago but antibiotics didn’t work and a test showed nothing up. It got a bit better but I am left needing to pass water more frequently- sometimes less than an hour between. Started needed to get up once in the night whereas before i slept right through. Also when I do go it’s a more urgent need than normal. Nurse is putting me back on Tamsulosin to see if that helps. 
Also got to get back to Kegel exercises as I found I can’t stop my flow much now whereas during my RT (July ‘18) I could release a cup full and go back to the waiting room ok when RT was delayed.

Hope everyone else is doing ok ?

Phil

 

User
Posted 04 Feb 2021 at 20:35

Sorry your PSA has risen Phil. Have they discussed what will happen if PSA rises again over next 3 months?

 

Ido4

User
Posted 04 Feb 2021 at 21:17

Sorry to hear your latest news Phil - stay positive.

My next PSA update is in March - beginning to think about it now.

 

 

User
Posted 04 Feb 2021 at 22:20
Phil , all best wishes to you. Thank you for all your support. Hope things come good and just keep living between results ok. That’s the most important thing for sure !

If life gives you lemons , then make lemonade

User
Posted 05 Feb 2021 at 00:37
Goalhanger was it a dip test at the GP practice or a proper test sent off to the lab? That doubling time is remarkably short for a cancer recurrence so my instinct would be deep seated infection or inflammation; the other symptoms would also point that way.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Feb 2021 at 09:21

Thank you for all your support guys, and gals. Much appreciated.

Firstly, she never mentioned what we will do if the PSA goes up again. It wasn’t a consultant it was some kind of support nurse. I was expecting better news or I would have thought the consultant would have spoken to me ...

I suspect it means more HT ??? She didn’t seem overly concerned whereas my head just started spinning and didn’t think to ask about future treatments. 

The water infection test was sent away but to be fair it was getting slightly better by then. I will try the Tamsulosin for a month and see what happens.

With regard to the PSA I just have to wait and hope it doesn’t go up anymore ....

I must admit when it went to 1.2 I got worried  as I read most of those that had RT/Brachy had their PSA stay fairly low.

Must try not to worry now , easier said than done .....

Forgot to mention best of luck Chris, hope the Bicalutimide and Decapeptyl both work well, and Pete good luck with your PSA test in March. 

Take care all

Phil

Edited by member 05 Feb 2021 at 10:21  | Reason: Not specified

 
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