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Effects of coming off Hormone Treatment

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User
Posted 26 Feb 2019 at 18:42

Hi,

In 2016 I was diagnosed with PC - Gleason 5+4=9; PSA 84; T3 but fortunately only Locally Advanced.  Have had TURP plus Bladder Neck resections to repair cancer damage and had 37 RT sessions followed by 3 years of Hormone suppression using Zoladex.

In January the Zoladex finished.  PSA is thankfully undetectable but of course with the end of hormone treatment am now "flying without a parachute" as no-one knows for sure what will happen when the HT protection wears off!  (Of course, far, far better than flying without an aeroplane as most feel early on in diagnosis and I have every sympathy with everyone on the journey.)

I've had pretty much all of the side effects of HT (although my oncologist did a good job of protecting my nether parts from atrophy using Tadalfil, and avoiding osteoporosis with calcium and Vitamin D supplements).  These include weight gain of 2 stones (despite dieting and exercise), aching joints esp, hips, tiredness and lethargy and lack of concentration - to name a few.

I haven't been able to find much in the way of advice/ observation on how coming off HT goes - other than the medical caution that it can take a long time - 12 to 18 months - or "Never" as a possibility.

Can anyone give advice from experience please?

Many thanks and happy to share my experiences if anyone wants 

Norby

 

 

 

 

 

 

 

 

 

 

 

 

User
Posted 26 Feb 2019 at 21:03

Fantastic that your PSA is undetectable. Can’t answer your question but I’ve had my last PROSTAP 3 injection 3/1/19 so am interested in answers to this too.

Ido4

User
Posted 26 Feb 2019 at 21:44
For me the advice I had which turned out to be correct was sometimes it will feel like you're going backwards, don't worry about it. The first 12 months saw the most improvement to the point pretty much back to normal - circa 80% The following good 4 years gave improvement mainly in bursts - ie one week you hadn't got the energy to do something then no problem the next.

Ray

User
Posted 26 Feb 2019 at 21:50
Generally speaking, they say that if your side effects developed soon after you started HT, they will disappear quite quickly whereas if they developed over an extended period, they will take an extended time to wear off.

Not many of the SEs are permanent - moobs and hot flushes most commonly.

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

User
Posted 27 Feb 2019 at 08:48

I've been off HT for a year: I noticed an improvement in energy levels within about three months, I've been able to lose weight (I'm now below what I was at diagnosis), and hot flushes  - which reduced over the three years anyway - have got even less frequent (but still annoying!). Libido is very low, but over the last couple of months has risen above zero, and function is pretty much zero. A discrepancy there that could become frustrating. We'll see.

User
Posted 27 Feb 2019 at 09:46
had my last zoladex jab 4th april 2016 still undetectable,its the no testesterone that effects me more with only being a small guy,i am too thin now but at least im still alive .
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User
Posted 26 Feb 2019 at 21:03

Fantastic that your PSA is undetectable. Can’t answer your question but I’ve had my last PROSTAP 3 injection 3/1/19 so am interested in answers to this too.

Ido4

User
Posted 26 Feb 2019 at 21:44
For me the advice I had which turned out to be correct was sometimes it will feel like you're going backwards, don't worry about it. The first 12 months saw the most improvement to the point pretty much back to normal - circa 80% The following good 4 years gave improvement mainly in bursts - ie one week you hadn't got the energy to do something then no problem the next.

Ray

User
Posted 26 Feb 2019 at 21:50
Generally speaking, they say that if your side effects developed soon after you started HT, they will disappear quite quickly whereas if they developed over an extended period, they will take an extended time to wear off.

Not many of the SEs are permanent - moobs and hot flushes most commonly.

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

User
Posted 27 Feb 2019 at 08:48

I've been off HT for a year: I noticed an improvement in energy levels within about three months, I've been able to lose weight (I'm now below what I was at diagnosis), and hot flushes  - which reduced over the three years anyway - have got even less frequent (but still annoying!). Libido is very low, but over the last couple of months has risen above zero, and function is pretty much zero. A discrepancy there that could become frustrating. We'll see.

User
Posted 27 Feb 2019 at 09:46
had my last zoladex jab 4th april 2016 still undetectable,its the no testesterone that effects me more with only being a small guy,i am too thin now but at least im still alive .
User
Posted 27 Feb 2019 at 14:22

It will be good to compare notes if you want.  With Gleason 9 I was happy for the drugs to starve any outliers!

User
Posted 27 Feb 2019 at 14:35

I think "undetectable" is the new term for very low.  Quite why I'm not sure but certainly not complaining.  I guess the TURP gave some benefit as it removed inner tissues of the prostate which might otherwise give some PSA.

User
Posted 27 Feb 2019 at 15:04

Most helpful. Main problem for me has been joint stiffness and aches - hips in particular.  I guess this could be related to losing muscle & strength which I have.  Not helped by being  3 years closer to 70 (thankfully!)

User
Posted 27 Feb 2019 at 15:07

Not good news on the moobs then!  Still we're used to counting blessings rather than worrying about little things (no pun intended).  Thanks

User
Posted 27 Feb 2019 at 15:54

Originally Posted by: Online Community Member

I think "undetectable" is the new term for very low.  Quite why I'm not sure but certainly not complaining.  I guess the TURP gave some benefit as it removed inner tissues of the prostate which might otherwise give some PSA.

 

'Undetectable' on the results printout means the pSA was lower than the lowest level the machine can test to. 

 

'Undetectable' when said by your onco or nurse usually means 'under 0.1'

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

User
Posted 27 Feb 2019 at 16:40

Originally Posted by: Online Community Member

Not good news on the moobs then!  Still we're used to counting blessings rather than worrying about little things (no pun intended).  Thanks

Were you on Tamoxifen?

I asked for it when I first felt breast growth, and it reversed it very quickly.
(I asked because I'd read widely around ADT side effects - it wasn't offered. Indeed it was refused as a prophylactic.)
From what I've read, it can work on growth within the last year, but can't reverse growth which has been there more than a year as it can't reverse fibrous tissue formation. Might be worth considering if you've had growth within the last year, although it's not without risk of DVT, and probably wouldn't be given to anyone who'd had DVT. Tamoxifen's success rate in stopping/reversing breast growth on ADT is reported to be around 70%. It's cheap too.

What's not clear to me (never seen it described in detail) is if it only works on breast glands (buds), or if it can also work on breast fatty tissue.

Edited by member 17 Apr 2019 at 15:00  | Reason: Not specified

 
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