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After Hormone Therapy

User
Posted 11 Jun 2019 at 10:57

Good luck to you guys coming off the HT. My last injection is due October and I can’t wait. My PSA is currently 0.02 so I’m hopeful....

My counsellor is worried about the time coming off the Prostap as I haven’t dealt with it mentally very well. So we are trying to save sessions for that time. My need to get my head back overcomes my worry about the RT not having worked, although it’s still there at the back of my mind.

Please keep us posted on your journeys after HT.

And again , good luck to you.

Phil

User
Posted 11 Jun 2019 at 12:16
It seems a bit puzzling why the Specialists insist you should stick rigidly to the 90 day intervals between HT jabs when the drugs and suppressants appear to stay in the body for weeks/months even years after the final jab.
User
Posted 11 Jun 2019 at 15:38

The catch is, not everyone.
Tests show that with 4 Zoladex doses, in 91% of cases, it maintains castrate level (0 - 1.73 nmol/L) over 4 x 84 days.
In 4% of cases, it was only just over castrate level (< 2 nmol/L) .
In 5% of cases, it escaped castrate level for up to 14 days.
In one out of 160 cases, it didn't maintain castrate level at all.
(ref https://www.accessdata.fda.gov/drugsatfda_docs/label/2013/020578s034,020578s035lbl.pdf page 10).

I would expect that if you extend the dose period, you would see a growth in the 5% of cases which bob up above castrate level for some days.

The other factor is that it can take some time for testosterone production to kick in even after the horomone dose has gone, but again, this varies a lot between people. I would not assume this is due to any drug still being in the body.

User
Posted 11 Jun 2019 at 15:50

Andy62, the Testosterone level will likely be dependent also on age and what your level was before treatment started.

I am hoping mine will come back soon after HT stops 😳...

Phil

User
Posted 06 Sep 2019 at 20:43
Next PSA test now scheduled for September 11 so it is currently squeaky bum time.

Hairs are now growing back on my legs so I know the effects of HT are wearing off and side effects are reversing.

I feel as fit as a butcher’s dog but let’s see what the PSA test throws up.

User
Posted 12 Sep 2019 at 08:04

PSA test done yesterday.

Result < 0.02 so all good.

Last Hormone injection was in January and I appear to be still in remission.

When I was doing hormone treatment I had lots of aches and pains especially in my legs and back.

That’s completely gone now and I feel good.

Long may it continue.

Edited by member 12 Sep 2019 at 08:06  | Reason: Not specified

User
Posted 12 Sep 2019 at 08:28

I'm really pleased for you Pete. I'm following this thread because it will be good to see how long it takes to reverse the side effects.

Chris

 

User
Posted 12 Sep 2019 at 10:54

Well, as I mentioned before the hairs are growing back on my once bald legs so I guess testosterone is slowly coming back.

Can’t think of any other side effects reversing apart from the disappearance of leg and back pain.

User
Posted 12 Sep 2019 at 13:59

That’s good news. Long may the good news continue. I had my last PROSTAP 3 injection January 3rd, next PSA test 30/9 or beginning of October. 

Ido4

User
Posted 28 Sep 2019 at 20:21
Saw my Oncologist this morning who was very upbeat about my latest PSA being <0.02.

He also informed me that my testosterone reading was measured at 3.7 compared to only 0.2 three months previously.

I told him I kinda guessed that was the case because of leg hair growing back.

He was also pleased to hear that all leg and back pain has disappeared since finishing the hormone treatment.

He was very optimistic about my prospects going forward and said that if he had to put a number on it he was about 90% confident that I will not have a further recurrence.

I certainly hope he’s right but let’s wait and see.

Next appointment in March 2020 so all this stuff will now get parked at the back of my mind.

After more than 5 years of this I have learned to live with it and no longer fret about it too much.

I’m off to Dubai in 2 weeks for a few weeks of sun, sea and sand so this Pca stuff is definitely going on the back burner.

User
Posted 28 Sep 2019 at 21:35
That’s excellent news, Pete. Enjoy your holiday!

Best wishes,

Chris

User
Posted 29 Sep 2019 at 14:02

Great news. Enjoy the holiday.

Ido4

User
Posted 29 Sep 2019 at 15:05
Great news !! I don’t fret about it too much either over 4 1/2 yrs on , but tests and scans next month again. It’s like living my life in 6 month slots lol.

Have a well deserved holiday !

If life gives you lemons , then make lemonade

User
Posted 04 Oct 2019 at 05:18

Good response. Mine was down to 0.07 at that point (then 0.05) and my onco never gave a forecast.

i wonder if the response level does give an  indication of effectiveness depending on how low below 0.1 you go after RT?

Although my T levels were up to 14 at my first test so that may have a bearing.

Edited by member 04 Oct 2019 at 05:23  | Reason: Not specified

User
Posted 21 Oct 2019 at 14:09

Well I just joined the ‘last HT jab’ club. My PSA has stayed at 0.08 for the last 2 checks so I’m hoping all is good .

I’m counting down the days till I can feel the HT wearing off. I didn’t really get any physical side effects so I won’t have that to look out for. It’s my mind I want back please 😊. Don’t hear of many on here that get the mental issues with HT, or no one talks about it anyway.

Does anyone recall Mr Angry ? (Iain I miss you) He and I had similar childhoods and both suffered mental issues with HT so it seems its linked to how your brain is already conditioned by any previous trauma.

Iain did tell me that for him it got easier as the HT wore off so I’m hoping and keeping my fingers crossed as there’s no way I want to go back on this stuff....

I don’t think anyone comes out the other side the same as they went in 😳.

Good luck Ido4 and Pete5963, I’m watching your journeys closely 

User
Posted 21 Oct 2019 at 17:00

Hi Phil

Thanks for posting.

I am currently in Dubai soaking up the sun and sea, but still finding time to check out the PCUK forum.

You’re absolutely right about not coming out the other side the same as you went in.

I think this applies to all the radical cancer treatments and whilst I am not aware of any adverse mental issues, I have experienced pretty life changing physical issues. I am nowhere near the guy I was before this whole thing kicked off going on 6 years ago.

However thanks to the doctors and nurses of the NHS I am still very much alive and hope to stay that way for a long time yet.

 

 

User
Posted 21 Oct 2019 at 17:12
Best wishes Goalhanger with a very speedy improval post HT treatment. Mental Illness has affected me all my life really through childhood issues , so the thought of starting HT absolutely terrifies me. In fact any further change at all terrifies me if I’m honest. I’m not good with change. Will find out in one month after scans. Take care !

If life gives you lemons , then make lemonade

User
Posted 22 Oct 2019 at 09:43

You’ll be glad you are off the HT wagon. You are absolutely right no one comes out the other side of these radical treatments the same as they were. But I’m very grateful to still be here. I am still on fluoxetine which takes the edge off any anxiety (not completely, I still over react at times 😬). My mind is still not as good as it was pre HT but I have found in the last few weeks my sleep has improved significantly which is very welcome. There are times when I feel more energetic too but still have to pace myself.

Look forward to seeing your progress off HT. 

 

Ido4

User
Posted 22 Oct 2019 at 10:03

Oh Chris, so sorry how could I forget your Bi-Polar. 

I asked my counsellor if I’ll ever be normal, she said you weren’t normal before the HT and so the answer is no. She does say I am becoming more like the person I could have been had I not had my childhood issues. Not sure what that means but it sounds interesting 😳😳. I find the journey interesting, especially if I were just a bystander and not the subject ...

Apparently I have suppressed emotions from childhood and so I’m feeling very sensitive as for some reason the HT has caused me to be more emotional. I’m not used to these waves of emotion. I am going back through my childhood adding the emotions I didn’t really have at the time and it’s a journey I can tell you 😳😳.

So I’m hoping that I will come out in the end being more emotional than I was but not so sensitive as I am now. Does that make any sense.

Had to up the Mirtazapine to 45mg . I didn’t want to change anti-depressant so close to coming of the HT.

Also reduced the gap between counselling, which helps. I’m trying this new thingy where you flick your eyes one way. I think it’s for PTSD. We’re also gonna try Mindfulness next.....

The new ME 😆😆. I may be a monster or a pussy cat..........

Thanks for your input guys, much appreciated. None of us on the same road but running parallel to each other.

Shall I post updates on here or do I need to start a new thread ?

Phil.

 

 

User
Posted 22 Oct 2019 at 13:22
I would keep the updates all together on this thread; it helps everyone to check back to where you have been and where you are now.

I think it would be a rare man that is the same after as before - but then I guess that could be said of anyone diagnosed with a (potentially) life limiting disease.

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

 
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