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Hormone therapy ending?

User
Posted 02 Jun 2020 at 07:48

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 02 Jun 2020 at 23:04

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 00:48
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 06:50

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 08:36

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 08:41

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 08:42  | Reason: Not specified

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

User
Posted 03 Jun 2020 at 09:23

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 15:55
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 15:56
👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Jun 2020 at 16:00

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 17:04

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 21:01

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 07:13

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 17:24
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 22:56

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 15:56

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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