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What is your experience with HT?

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User
Posted 28 Mar 2024 at 10:18

I was talking with a very senior prostate cancer oncologist. They don't have much control over which GnRH agonist (Zoladex, Prostap, Decapeptly) is used. If their hospital administers it, the hospital decides based on cost. Oncologist can only change this if it isn't working for a particular patient.

Similar story with your GP surgery, if you're injected there. If your surgery is a moderate size in terms of numbers of patients, they may buy one of them in bulk which reduces the cost for that one, but makes the others relatively even more expensive. Even if they don't buy in bulk and you collect from a pharmacy, they may still have a strong preference due to staff familiarity with administering it. Again, oncologist can override this if the preferred one isn't working.

Having said that, I asked my GP why they used Zoladex, and they said it was because it caused the fewest injection site issues, but yes, they buy it in bulk to get lower price. (For some unknown reason, I wasn't included in the bulk purchase, and mine was prescribed via a pharmacy, which also made it easy for me to pick it up and do my own injections.)

User
Posted 28 Mar 2024 at 12:30
Quote:

Originally Posted by: Online Community Member

In many ways, yes - however, moobs and breathlessness are more likely with bical than with injected HT. On the upside, the bical leaves the body far quicker so temporary side effects tend to disappear quickly as well. OP above was lucky that the moobs have decreased; for many men, if these develop they are permanent :-(  If he is going to have bical, ask whether your hospital will agree to tamoxifen or, if not, a bit of RT to the breast buds before he starts taking the tablets.   

really helpful Lyn thank you 

User
Posted 28 Mar 2024 at 18:26
Hi all - so back from the oncologist who had the time for a long chat to explain everything.

To start with they do not prescribe Bicalutamide in France - he said that there was no clinical evidence of efficacy which seemed very weird when it is the go to in the UK. He gave me a choice of injectable hormones so I chose Decapetyl with 3 month injections instead of the 6 month one.

I asked about Moobs and so he has given me a prescription for Tamoxifen with strict instructions to ONLY take it if I feel tingling in the breasts after the hormone injection.

He also prescribed Serelys which is a non-prescription medicine to relieve hot flushes - had to pay for that so I hope it was €30 well spent LOL

So I now have my appointment for a prelim CT scan on 6th May and RT treatment starts on 22nd May with 33 daily treatments giving a total dose of 66 thingimajigs.

Now I have to translate all the docs he gave me regarding emptying of bowels (no enemas), drinking 1.5L of water, having a pee, drinking 0.5l of water 10 minutes before the RT and holding it. Oh and the list of about 30 potential side effects (CYA)

Anyway, all good and I'm scheduling the first hormone injection for Friday am along with the testosterone blood test.

User
Posted 28 Mar 2024 at 18:57

Hi Steve,

{He also prescribed Serelys which is a non-prescription medicine to relieve hot flushes - had to pay for that so I hope it was €30 well spent LOL}

I'll be interested to know if "Serelys" helps with the hot flushes. My Oncologist did suggest some medication for hot flushes but I didn't take note (waiting for her to send letter to my GP).

Good luck with the RT, nothing quite like squirting enemas up the backside each day and holding quantities of water etc 😄 

Cheers

Spongebob

 

User
Posted 28 Mar 2024 at 19:24

Hi Steve 

sounds like a good plan- interesting about bical through. Did the oncologist talk about how long you will be on Decapetyl? 

User
Posted 28 Mar 2024 at 20:26
Yes, 6 months although he joked(?) that I could stop after 3 months if the Testosterone was below 0.5 - not sure if he was joking or not - he was French but studied in New York so not sure how to take it. I'll be talking to him again before the next injection is due.

Spongebob - no enemas allowed - he says they irritate the rectum and cause more problems so I have to follow the no fibre diet and try and evacuate before the session.

User
Posted 28 Mar 2024 at 21:01

{Sponge-bob - no enemas allowed - he says they irritate the rectum and cause more problems so I have to follow the no fibre diet and try and evacuate before the session.}

DOH! Sorry I miss-read your original post. I’m losing it or more probably the enema trauma has messed with my brain. 
Good luck

Spongebob

User
Posted 29 Mar 2024 at 11:18
LOL - I used the enemas before the biopsy and sometimes before my perineal physio that uses the anal probe - I like the clean and empty feeling they give and the fact that the probe comes out completely clean rather than embarrassingly not. But the onco said no so I'm taking his advice on this one.
User
Posted 29 Mar 2024 at 22:04

Steve 86,

Very best wishes to you.  Hope it all goes smoothly.

JedSee.

User
Posted 30 Mar 2024 at 08:20

Hi Steve,

Glad you’ve got a plan in place and 6 months on HT doesn’t sound too bad at all. The worst of my side effects (joint pain) didn’t start until around 9 months on the poison and got steadily worse, so hopefully you will avoid this. Unfortunately I think loss of Libido kicks in very quickly but again it varies from one person to another.

Good luck!

Derek

User
Posted 30 Mar 2024 at 13:11

The libido issue might be an 'issue' as I was concerned as to whether masturbation and intercourse might influence my testosterone levels - my thinking was that regular activity might increase my T levels when I start the hormone injections (now Tuesday as the nurse forgot about Easter LOL)

Much to my surprise I found a scientific articles that demonstrated that a 3 week abstinence from masturbation INCREASES testosterone.

"These data demonstrate that acute abstinence does not change the neuroendocrine response to orgasm but does produce elevated levels of testosterone in males."

Now if the hormones decrease libido then I am going to have to force myself to take things in hand methinks.

This is the article

Edited by member 30 Mar 2024 at 13:12  | Reason: Add article link

User
Posted 30 Mar 2024 at 13:24

Do it for science Steve. 

For the greater good. 

Enjoy!

User
Posted 31 Mar 2024 at 21:49

That's an interesting article Steve but surely if you are on HT then you are going to stop producing testosterone regardless of what you do or don't do?

User
Posted 01 Apr 2024 at 00:12
Chris is correct. While on HT, there is no testosterone being produced so masturbation or abstention will make no difference at all.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Apr 2024 at 11:47
What was confusing was that the onco said that if T was down to < 0.5 then it might be possible not to have the second 3 month injection - that sounded like the hormone injection would slowly reduce the T down to a target figure - a bit like PSA testing.

My thoughts were that if not masturbating during the HT were to increase T then would that not make it harder for the hormone therapy to meet that target of <0.5?

I didn't realise that HT would immediately stop production of Testosterone.

Deffo a learning curve :)

User
Posted 01 Apr 2024 at 12:04

I’m learning too - my head is scrambled- so bicalutamide is not HT as in ADT - rather it stops the uptake of testosterone but not the production of testosterone? Have I got that right? 

User
Posted 01 Apr 2024 at 13:15

The hormone therapy injections (and Relugolix - not available on the NHS) stop Testosterone production by the Testicles. Sometimes a particular drug is not as effective as it should be in a particular individual or it wears off sooner than it should, in which case (if anyone notices), they'd swap you to another one.

Small amounts of Testosterone are also produced by the adrenal glands, and the hormone therapy injections don't stop those (Abiraterone does).

Bicalutamide is an anti-androgen which blocks androgen receptors so that they can't use Testosterone. It's inclusion under the term ADT is not consistent - often it is included.

User
Posted 01 Apr 2024 at 13:44

Originally Posted by: Online Community Member

I’m learning too - my head is scrambled- so bicalutamide is not HT as in ADT - rather it stops the uptake of testosterone but not the production of testosterone? Have I got that right? 

 

Think of your cancer as a car engine, with testosterone being the fuel goes into you petrol tank, from your balls. The hormone therapy injections (Zoladex Prostap etc) are like valves that control the flow of fuel from your balls to your petrol tank and reduce the flow to very low levels. But sometimes these valves might not work efficiently and might need replacing, so mechanics might swap and change them for different ones.

But, BUT, there's also a small amount of fuel coming from another source, like a petrol reserve tank. The hormone therapy injections don't affect this reserve tank. 

So, your engine has receptors that need fuel to function. Bicalutamide is like a lock that's placed on these receptors, preventing them from using the fuel, from ANY source. It's like putting a lock on certain parts of the engine to temporarily stop them from working. It's often used alongside the valves (hormone therapy), with the intention of completely stopping the engine.

Hopefully that’s helped rather than confused you even more.

Edited by member 01 Apr 2024 at 13:52  | Reason: Not specified

User
Posted 01 Apr 2024 at 13:58

Well my Fuel tank is completely empty!🤣🤣🤣🤣

User
Posted 01 Apr 2024 at 16:26

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

I’m learning too - my head is scrambled- so bicalutamide is not HT as in ADT - rather it stops the uptake of testosterone but not the production of testosterone? Have I got that right? 

 

Think of your cancer as a car engine, with testosterone being the fuel goes into you petrol tank, from your balls. The hormone therapy injections (Zoladex Prostap etc) are like valves that control the flow of fuel from your balls to your petrol tank and reduce the flow to very low levels. But sometimes these valves might not work efficiently and might need replacing, so mechanics might swap and change them for different ones.

But, BUT, there's also a small amount of fuel coming from another source, like a petrol reserve tank. The hormone therapy injections don't affect this reserve tank. 

So, your engine has receptors that need fuel to function. Bicalutamide is like a lock that's placed on these receptors, preventing them from using the fuel, from ANY source. It's like putting a lock on certain parts of the engine to temporarily stop them from working. It's often used alongside the valves (hormone therapy), with the intention of completely stopping the engine.

Hopefully that’s helped rather than confused you even more.

Goose that’s a very clear explanation ! Thank you- love the car metaphor :) 

 
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