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Hormone therapy ending?

User
Posted 15 May 2020 at 07:47

I had my final Goose injection, 3 months ago - what side effects will I probably have? I'm still on a 5mg Tadalafil. It does feel a bit odd already.

Any experiences of others, much apriciated.

Bob

User
Posted 15 May 2020 at 20:31

Hi Bob,

Can't say I've heard of a Goose injection.  It doesn't sound very pleasant.  Sorry I can't advise on side effects.  

Regards
Peter

User
Posted 15 May 2020 at 23:42
Ha ha - goserelin was changed to goose by auto correct!

Sometime in the next few months you should start to get your testosterone back, or at least some of it. You may start to feel more randy, chest and facial hair may grow more and if you were affected by fatigue that should be starting to improve.

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

User
Posted 16 May 2020 at 06:37

Puberty Mark II ?

I hope to be following you in a year or two, so watching eagerly.

User
Posted 16 May 2020 at 19:33

Originally Posted by: Online Community Member
Ha ha - goserelin was changed to goose by auto correct!

Sometime in the next few months you should start to get your testosterone back, or at least some of it. You may start to feel more randy, chest and facial hair may grow more and if you were affected by fatigue that should be starting to improve.

Yes, Goserelin ! - thanks for the info, I've been getting a bit achy - feeling more like a man after the ladies, would be a vast improvement - my lady says😄 Thanks for the tips, further ones welcomed. 

User
Posted 16 May 2020 at 20:10

I guessed that Goose was meant to be goserelin, but I genuinely thought, this must be street slang. A bit like speed for amphetamine.

Anyway my last goose (see I'm getting down with the kids) injection was 3 Feb, so I reckon I'm about three weeks ahead of you. Anyway I've not noticed any changes yet. If and when I do get a spontaneous erection, I will be shouting it from the roof tops. 

Dave

User
Posted 18 May 2020 at 08:55

Originally Posted by: Online Community Member

I guessed that Goose was meant to be goserelin, but I genuinely thought, this must be street slang. A bit like speed for amphetamine.

Anyway my last goose (see I'm getting down with the kids) injection was 3 Feb, so I reckon I'm about three weeks ahead of you. Anyway I've not noticed any changes yet. If and when I do get a spontaneous erection, I will be shouting it from the roof tops. 

Thanks, the Tadalafil helps with the latter problem, though I think it can cause Heartburn.

User
Posted 18 May 2020 at 09:33

Yes I've tried three types of pde5 inhibitors, they all gave me heartburn. I think there are four, so I have one more to try.

A side effect of coming off maybe emotional problems. Prior to ADT I was a bit of an ice cube emotionally, during ADT I melted a little, this last week I have been boiling. There are other things going on in my life, but maybe the change in hormones is affecting me more than I thought. 

 

Dave

User
Posted 18 May 2020 at 17:40

They are likely to all have the same effect. Most of the PDE5 inhibitor side effects are due to them inhibiting other PDE's too, and given this varies between the drugs, switching drugs can often resolve it.

However, the heartburn is caused by inhibiting PDE5 itself, which is also used by the smooth muscle of the esophagus and lower esophageal sphincter. It causes them to relax (like it does the smooth muscle around the arteries in the penis). However, in some people, that's enough to allow acid reflux, and for food to be swallowed more slowly and not always completely.

There are some things that may help.

The effect is very dose-specific. See if a smaller dose works for erections, and maybe doesn't cause heartburn.

You could try leaving it long enough after eating for your stomach to have cleared, e.g. 2 hours. (PDE5 inhibitors work best on an empty stomach anyway.)

You could try taking them with an indigestion tablet, although beware that long term acid reflux can cause esophageal cancer.

Do try the forth one, but I don't hold out a lot of hope. Trying smaller doses of all of them might be worth a try too.

By the way, I've not yet come across anyone who's tried Spedra/Avanafil, although it should be available to prostate cancer patients on the NHS if the others don't work. It's the most expensive, as it's the only one still on patent (until September, anyway).

Edited by member 18 May 2020 at 18:36  | Reason: Not specified

User
Posted 18 May 2020 at 20:10

Thanks Andy, I got a packet of spedra on prescription, having tried tadanafil and cialis. I took one tablet and once more got the indigestion. I often get acid relux so anything which will make it worse is a bad idea. With being on ADT I was always fighting a losing battle anyway, so I have quite a few half used packets of pde5 inhibitors lying around. Once the ADT has been out of my system for a few months I will try them again and see if I can get a dose that works. 

Dave

User
Posted 18 May 2020 at 21:14
Maybe just push for injectable ED therapy. Nowhere near as scary as it sounds.
User
Posted 18 May 2020 at 22:43

Dave 

Don't forget stimulation will be required and probably more than before.

I resisted sticking a needle in my penis for five years, as CJ says nowhere as bad as it sounds.

Thanks Chris

User
Posted 18 May 2020 at 23:31
OK, I can see the sense of going for injections, get to the root of the problem. I've only been off ADT for a matter of weeks so I think I will wait a few months before I go for more aggressive ED treatment. Things do still function down there with a lot of stimulation so I'm hopeful once testosterone recovers I may be able to do something with it.

Dave

User
Posted 19 May 2020 at 08:36

Thanks Andy - I'll try cutting back to one every other day - let you know if that helps.

I'm now taking it every other day, & a good improvement in the Acid indigestion. Thanks Andy.

Also, so far - no problem, with ED !

Edited by member 28 May 2020 at 09:07  | Reason: Not specified

User
Posted 01 Jun 2020 at 10:18

Originally Posted by: Online Community Member

They are likely to all have the same effect. Most of the PDE5 inhibitor side effects are due to them inhibiting other PDE's too, and given this varies between the drugs, switching drugs can often resolve it.

However, the heartburn is caused by inhibiting PDE5 itself, which is also used by the smooth muscle of the esophagus and lower esophageal sphincter. It causes them to relax (like it does the smooth muscle around the arteries in the penis). However, in some people, that's enough to allow acid reflux, and for food to be swallowed more slowly and not always completely.

There are some things that may help.

The effect is very dose-specific. See if a smaller dose works for erections, and maybe doesn't cause heartburn.

You could try leaving it long enough after eating for your stomach to have cleared, e.g. 2 hours. (PDE5 inhibitors work best on an empty stomach anyway.)

You could try taking them with an indigestion tablet, although beware that long term acid reflux can cause esophageal cancer.

Do try the forth one, but I don't hold out a lot of hope. Trying smaller doses of all of them might be worth a try too.

By the way, I've not yet come across anyone who's tried Spedra/Avanafil, although it should be available to prostate cancer patients on the NHS if the others don't work. It's the most expensive, as it's the only one still on patent (until September, anyway).

Thanks for your help Andy, as I posted above - I've been taking 5mg every other day & that has virtually eliminated the Heartburn & Reflux that I was getting, I'm going to ask Doc to prescribe 2.5mg version, if taking it every other day has other problems....

These problems that are sent to try us...... Bob

EDIT - I spoke to the Forum Nurse this morning, she said now I'm off the HT & it is leaving my system, she thought that the Tadalafil's effect was being reduced by the HT, so I need a lower Tad dose, anyway.
Interesting POV. Yes, cutting pill in half, might be an option....
Thanks Andy.

Edited by member 01 Jun 2020 at 11:32  | Reason: Not specified

User
Posted 01 Jun 2020 at 10:36

Oh, excellent.

You could try breaking them in half, although they are film coated and I don't know why. (I have occasionally chewed one up hoping to make it work faster, without any ill effect I'm aware of.)

The 2.5mg tablets are same price as 5mg tablets, so breaking 5's in half works out half the price (to the NHS).

Edited by member 01 Jun 2020 at 10:37  | Reason: Not specified

User
Posted 01 Jun 2020 at 11:10
I came off HT (bicalutimide) in mid February, so a little over 3 months ago. I have noticed in the last few weeks that my body odour is definitely returning, so that's certainly a change, but no sign of spontaneous stirrings from the old man yet 😄.

Cheers,

Chris

User
Posted 01 Jun 2020 at 11:27

Originally Posted by: Online Community Member
I came off HT (bicalutimide) in mid February, so a little over 3 months ago. I have noticed in the last few weeks that my body odour is definitely returning, so that's certainly a change, but no sign of spontaneous stirrings from the old man yet 😄.

Cheers,

Chris

Perhaps you need some DVD inspiration - EG Sarah Young, for example!!

User
Posted 01 Jun 2020 at 13:08

Hi, 

Things returning to normal after HT can take quite a while. 

It was nearly 10 months before the effects left my system but when they did, it was worth the wait! 👍😄👍

Edited by member 01 Jun 2020 at 13:09  | Reason: Not specified

User
Posted 01 Jun 2020 at 13:12
I don't have any problems in that department after a little physical assistance, but it's not yet happening without that. Hopefully that'll change as time goes on 🙂.

Cheers,

Chris

User
Posted 02 Jun 2020 at 08:48

Originally Posted by: Online Community Member

Hi, 

Things returning to normal after HT can take quite a while. 

It was nearly 10 months before the effects left my system but when they did, it was worth the wait! 👍😄👍

Thanks Steve, gives me something to look forward to.
Just seen Bill Turnbull on TV, he seems to be coping well.

User
Posted 03 Jun 2020 at 00:04

For those of you on HT can I ask how long you had been on it for please, and if your coming off it etc is this a permanent thing or just a HT holiday. I understand my partners cancer will never be cured hence the HT but we do wonder if he will be able to get a HT holiday. Covid has meant like many others his appointment with oncologist and urologist have been cancelled so the chance to get more information than we got in February has been missed. 🙂

Some days you just have to create your own sunshine...... 

User
Posted 03 Jun 2020 at 01:48
Is he still on bicalutimide Annie or have they moved him onto an injection version (Zoladex or Prostap, for example)? That may make a significant difference.

The proper name for HT holidays is intermittent HT or IHT, if you want to search here for old posts / threads on it. Generally speaking there are conditions that the oncologist will want to see met, such as

- very low, stable PSA for a sustained period (often 2 years)

- no symptoms of active cancer

- an oncologist & a patient who both have some appetite for risk (some oncos refuse to even consider IHT no matter how well the patient is doing)

I have never seen IHT offered to a man on bical on here - but it is rare for someone with incurable PCa to only be on bical anyway. I suspect the reason IHT is more suited to injected HT is that it takes much longer to leave the body & for testosterone to start being produced and so the PSA takes much longer to start rising. With bical, the testosterone is there in his body so as soon as the tablets are stopped, the PSA may start rising.

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

User
Posted 03 Jun 2020 at 07:50

Originally Posted by: Online Community Member

For those of you on HT can I ask how long you had been on it for please, and if your coming off it etc is this a permanent thing or just a HT holiday. I understand my partners cancer will never be cured hence the HT but we do wonder if he will be able to get a HT holiday. Covid has meant like many others his appointment with oncologist and urologist have been cancelled so the chance to get more information than we got in February has been missed. 🙂

He should be able to get a phone appointment with both. This has been my experiance with West Suffolk Hospital, in Bury st Edmunds.

User
Posted 03 Jun 2020 at 09:36

Yes Lynne he is still on Bicalutamide and all things considered he is doing really well. Of course with the cancelled appointments he hasn’t had another psa test yet since the one in March which was six weeks after starting it.

The urologist said at the time he would stay on this until it stopped being effective which as you know is uncertain. 

He had a few weeks where he was in a dark place at times but thankfully the weather has been lovely so he has spent the last few months gardening which has helped he was a navvie in a former life I think 🙂

 

Some days you just have to create your own sunshine...... 

User
Posted 03 Jun 2020 at 09:41

Hi Bob, thank you. I expected that he would get a call a week or two back at the time of the cancelled appointment but nothing as yet. I will get him to ring GP or hospital secretary. Would be good to get another PSA done and more importantly get an idea of when he will get to see the urologist as he had a stricture operated on in 2018 and thats now causing pain again on passing urine. With regards to the Bicalutamide as i said to Lynne he is doing really well with only a few side effects. 🙂

Edited by member 03 Jun 2020 at 09:42  | Reason: Not specified

Some days you just have to create your own sunshine...... 

User
Posted 03 Jun 2020 at 10:23

Originally Posted by: Online Community Member

Hi Bob, thank you. I expected that he would get a call a week or two back at the time of the cancelled appointment but nothing as yet. I will get him to ring GP or hospital secretary. Would be good to get another PSA done and more importantly get an idea of when he will get to see the urologist as he had a stricture operated on in 2018 and thats now causing pain again on passing urine. With regards to the Bicalutamide as i said to Lynne he is doing really well with only a few side effects. 🙂

I had to rattle a NHS cage or two myself. Some hospitals, are utterly dominated by Coronavirus considerations - folks can get very sick from other things, they need to be reminded of this. I'm having a blood test myself Thurs Morning, at the Doctors surgery - had to organise that myself.

I take the view, "If they are disorganised, organise them yourself"

BTW I've had it confirmed from 3 medical sources + a very helpful FM here,, that Tadalafil is often the cause of Heartburn & acid reflux, & if this happens, take it every other day.... Works for me!!

Bob

User
Posted 12 Jun 2020 at 16:55
Update, has my Oncologist phone appointment this morning, PSA now 0.02 - next appointment in 6 months. He expects it will rise a bit, as the Hormone therapy loses it's strength & my own Testosterone picks up. He says, it should not rise above 2.
User
Posted 12 Jun 2020 at 16:56
👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Jun 2020 at 17:00

Great news 🙂 my partner has psa test booked for Monday and telephone appointment for Weds morning so fingers crossed his is still going down.  

Some days you just have to create your own sunshine...... 

User
Posted 12 Jun 2020 at 18:04

Originally Posted by: Online Community Member

Great news 🙂 my partner has psa test booked for Monday and telephone appointment for Weds morning so fingers crossed his is still going down.  

Thanks Annie. Naturally I'm pleased & my GF also had good news today, her Mamogram test was OK.
I also managed to replace the brushes on her Henry Hoover & get that working!!

All we need now, is the Euro numbers to come up.😂

User
Posted 12 Jun 2020 at 22:01

Aww that really is good news 🙂 and a big yey for Henry lol 

Some days you just have to create your own sunshine...... 

User
Posted 13 Jun 2020 at 08:13

Originally Posted by: Online Community Member

Aww that really is good news 🙂 and a big yey for Henry lol 

As you say, good old Henry, Anne.

I am having problems with ED, I guess with the Artificial Hormone fading away, there is a gap until my own Testosterone wakes up & gets going?? My GF, is not impressed.......

User
Posted 13 Jun 2020 at 18:24
I was on HT (150mg bicalutimide) for 18 months, Annie. I came off it in the middle of February. Permanently (fingers crossed!).

Cheers,

Chris

User
Posted 13 Jun 2020 at 23:56

We are on early days really in the grand scheme of things. We seem to have gotten our heads around his diagnosis and the loss of our sex life now and to be honest its actually brought us closer together. Its still tough at times absolutely, but its getting easier as time goes on 🙂

Some days you just have to create your own sunshine...... 

User
Posted 16 Jun 2020 at 16:56

PSA done yesterday ready for telephone consultation tomorrow it was 1.3 in April and todays is 0.6 so it seems the Bicalutamide is still doing its job. 

Some days you just have to create your own sunshine...... 

 
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