Ending hormone therapy after Radiotherapy

User

Posted 24 Sep 2018 at 06:57

Phil, I am on anti depressant called Mirtazapine, for me it has worked very well and also helps me sleep. It takes a couple of weeks to kick in.

https://www.medicines.org.uk/emc/files/pil.531.pdf

Ask your GP about possible benefits for you

alan

User

Posted 24 Sep 2018 at 07:03

Thanks Alan i will mention that to my GP.

Oops i saw HT and thought you were on the good old Prostap but you are taking the Triptorelin. I suppose the main effects are the same as its all down to the loss of testosterone.

It would be interesting to see the reasons most of us are put on these instead of the Testosterone blockers like Bicalutimide...

Phil

User

Posted 24 Sep 2018 at 07:18

I asked my oncologist why he was putting me on bicalutamide (the plan is I'll be on it for three years) rather than one of the drugs that stop testosterone production, and his reply was that, in his view, the results are just as good and the quality of life significantly better.

Chris

User

Posted 24 Sep 2018 at 07:25

Hmm interesting , i wonder if they consider switching half way through https://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-smile.gif.

I wonder what the 'official' line would be for deciding which to use??

Phil

User

Posted 24 Sep 2018 at 07:50

One issue with bicalutamide is that, in a small number of men, it can cause liver damage, so my oncologist was very keen that I have a blood test to check liver function after having been on it for a month. Thankfully it's come back as OK. Not entirely "normal" but not so abnormal as to cause concern.

Chris

User

Posted 24 Sep 2018 at 08:47

I am similar in that I have always lead a very sporty life. I had RP, then started HT (Bicalutamide 150mg daily) quickly followed by 23 doses of RT. The intention was to stick with HT for 2 years, but the onco agreed to 18 months, which is to match the life of the RT effects. As it happens, I stopped after 14 months, as the side effects were destroying me. I had put weight on, muscles had wasted, my brain had melted (which I very needed for work), no libido whatsoever, breast growth, and extreme fatigue. Working full time and being a parent of a young child took everything out of me, and the side effects just kept getting worse. I had no real option other than to stop.

Three months on after stopping, my PSA is <0.003, my head works again, I have energy, and fitness is resuming - although that is taking an unreasonable amount of effort! Was it the right call? I guess time will tell, I'll keep my fingers crossed for the 6 month PSA test in December...

I know all men respond differently to different treatments, and I know that I have always reacted strongly to any meds, but that felt far too much to me. Maybe it'll work out better for you.

User

Posted 24 Sep 2018 at 09:40

Ah so Graham , it sound like you still got similar side effects from the Bicalutamide even though still producing Testosterone.

I was expecting the libido and ED to be OK on this drug, but maybe not. And also possibly the mental issues suffered by so many on Prostap and Casodex wouldnt be so bad - sounds like i was wrong.

As you say everyone is different but its a big thing to change mid-term if its just going to be more of the same.

There are quite a few on here that have opted out of completing the course, which must say something to the consultants that we need something better than the sledgehammer that is HT.

Phil

User

Posted 24 Sep 2018 at 13:32

I should add, Phil, that I too have had a complete and utter removal of libido since being on bicalutamide. The "mechanism" still functions, but the desire is completely gone.

If things stay as they are for me now, though, I'd have no problem staying on it for three years. As yet at least I've not experienced any hot flushes, and no sign of nipple sensitivity or breast growth (I'm on 20mg weekly Tamoxifen to prevent that).

Chris

Edited by member 24 Sep 2018 at 13:35 | Reason: Not specified

User

Posted 24 Sep 2018 at 14:00

Oh i see i was expecting the opposite. You see i'm on the Prostap and still have the libido but a touch of the old ED is not good.

I have many of the mental problems and slight hot flushes , i've lost a stone in weight and i'm doing OK with the weights in the gym. No sore nipples or anything else. Not even fatigue during the RT .

Its not a pleasant journey and i know that i have been particularly lucky so far - in that having PCa is in any way lucky of course.

Phil

User

Posted 25 Sep 2018 at 09:34

Alan , i have today got a prescription for Mirtazapine. I am finding I am just surviving every day which isn’t good enough for me or my family so I saw my GP today.

i hope it will help me keep those dark thoughts away and sleep better.

thanks for the heads up on the Mirtazapine as my GP agreed it will be the best for my circumstances.

Phil

User

Posted 25 Sep 2018 at 09:56

Originally Posted by: Online Community Member

Alan , i have today got a prescription for Mirtazapine. I am finding I am just surviving every day which isn’t good enough for me or my family so I saw my GP today.

i hope it will help me keep those dark thoughts away and sleep better.

thanks for the heads up on the Mirtazapine as my GP agreed it will be the best for my circumstances.

Phil

It will take up to two weeks to kick in properly

as i found out. But I haven’t had an emotional breakdown since I started the tablets and I do find I sleep better so good luck My friend

User

Posted 25 Sep 2018 at 10:56

Thanks Alan,

When i first started this journey i didn't get the mental issues and even when it kicked in i thought i was unusual ( because of my difficult childhood memories ) but i now see its more usual to get these issues especially if you are in the 'younger' age bracket. I was determined to not go down this route but although i have a good counselor its not enough at the moment.

I hope you can also find the correct decision for you and i must admit i would give anything to come off this sh*t. Without the HT i would be completely OK with no side effects at all and just waiting with fingers crossed for the future (as we all do ) .

I asked my consultant about HT for 18 months only and he said no . He told me it can take 2 years for any microscopic cancer cells to die whilst without the testosterone. I had never heard this before ( or since) so don't know if he was just bullsh*tting me .....there are so many conflicting pieces of information. I do know that we need something much better that HT to keep the PCa at bay.

The very best of luck with whichever route you choose. None of us deserves this and sometimes it can feel unfair but we don't have a choice so we battle on https://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-laughing.gif

Phil

User

Posted 26 Sep 2018 at 12:01

Have followed this conversation with interest and having been on Zoladex for two months now, can advise my current experiences on Zoladex:

Hot flushes, loss of libido, muscle aches and pains – especially in hips, worsening erectile dysfunction to the point that now I cannot get an erection and worst of all nocturia which started about one week after first Zoladex injection. Going to the toilet every hour to hour and a half at night. Did see the GP about this and checked for infection (full urinalysis at hospital) – no infection present. Decided against trying any further medication for this as previous use of medication for nocturia has resulted in no improvement and given me severe headaches. It's not an issue of weak / low flow in the night, rather the fact (I believe) that the hormone therapy is interfering with the relevant brain signals to the gland(s) controlling night time urination.

I’m also experiencing some slight moments re short term memory loss, like putting things down and forgetting where I’ve put them. Hopefully these things won't get worse.

Overall i'm tolerating the side effects quite well so far.

I also saw my onco for my first follow up appointment yesterday and discussed the reasoning behind putting patients primarily on a LHRH agonist such Zoladex as opposed to an anti androgen such as Bicalutamide pre radiotherapy treatments. She advised it was because of an evidence based approach that the LHRH agonists are more effective pre-radiotherapy. However she did also advise that post radiotherapy anti androgens are just as effective and that would be an option for me if post radiotherapy I wanted to change. One thing of note that she did say that if I did go down this route, the Bicalutamide dosage would be double that of the dosage related to the 28 day cycle used pre and post first LHRH injection to prevent tumour flare.

Edited by member 27 Sep 2018 at 08:28 | Reason: Spelling.

User

Posted 26 Sep 2018 at 12:11

Thanks Jon

i did not experience the awful side effects on Triptorelin that you are having on zoladex.

i can achieve erections with help from wife of 45 years, albeit needing more work! Ihave dry ejaculations that feel a lot different.

i had no urinary frequencry issues. After speaking to my oncologists she did tell me that some memory problems are caused by hormone therapy as the loss of testosterone causes a lack of acuity in the brain

im not sure but I have read A lot of medical documents about hormone therapy for prostate cancer patients and in all the documents I read Triptorelin came out the best. But of course what is most important is that we are all different and you could’ve got the same reactions if you were on triptorelin as you are getting from Zoladex

User

Posted 26 Sep 2018 at 12:37

Interesting to hear the different stories if Zolodex, Triptorelin against my own with Prostap.

i , like Alan had few side effects from my HT , in fact none bar depression, anxiety and insomia and the dreaded ED . I can only get halfway there although my mind wants to ...

i have just started on Mirtazapine yesterday so we’ll see what happens next ...

i am so glad I’m only on the HT for another 18 months and I feel for those on it lifelong .

A better medication needs to be found for Quality of life for sure.

Phil

User

Posted 16 Oct 2018 at 20:37

I have read many and varied studies from well respected sources on the subject of 18 months Vs 3 years (the so called gold standard) of HT therapy.

The outcome in nearly all cases was about a projected 4 to 5% reduction in life expectancy. Of course there are so many variables involved and we are all different, in make up and age, but I found the articles interesting and compelling reading.

Testosterone recovery in the <18 months Vs the >18 months was quite marked, with recovery after stopping HT at 18 months coming out well.

QoL is for me paramount and I have made my decision in advance of my post RT review early in November that I will tell my Oncologist I will be stopping HT at 18 months.

User

Posted 17 Oct 2018 at 05:41

I’m putting it off and off and off. Been REALLY enjoying last 18 months , but Psa expected over 100 next January. I think I’d end up topping myself on HT at 51 yrs old

If life gives you lemons , then make lemonade

User

Posted 17 Oct 2018 at 07:20

Chris, i must admit i feel like that too if i , for some reason cant finish the HT after 2 years. I am going to try out the meds' etc. but this is not a nice place to be and i am 63 so a lot older than you.

But...i feel that i mustn't think like that for the sake of my family. i have started the Mirtazapine ( as recommended by Pallance https://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-smile.gif), but not sure the 15mg is working well as initially it seemed to help but my restless sleep has come back and i don't feel any better (happier).

Still seeing counselor but i'm not sure where that's going as i'm still having a lot of thoughts from a difficult childhood and i feel i really should be concentrating on the future more but i can't. I seem to want to reassure myself that i did the best i could with my life !!

On a happier note I am keeping up the gym work and i appear to still be able to build muscle albeit at a slower rate than maybe before the HT. Weights are going up and the running is getting easier ( and faster ). Still no fat gain and no man boobs , in fact i need a new wardrobe as i have lost weight around the middle and my middle aged belly has now gone ......

Anyway, at the moment its a day by day process .

I wish you all the best, its good to know you're not alone but also sad that we still put on a brave face for everyone outside our private circle and even the 'celebrities' don't mention the 'personal' difficulties. which reinforces the view that we have the 'best' cancer you can get so we should be happy !

Phil

User

Posted 17 Oct 2018 at 10:04

I pay to see a councilor each week and she is amazing. She has helped so much with my bipolar , and yes we’ve worked through a very unhappy childhood too , but essentially mentally I’m in the best place I’ve been in many years. And fit and healthy and continent and with erectile function. And a lovely caretaker job now occupying me. I feel I had the operation for my family’s sake nearly 3 1/2 yrs ago. Hardest decision ever and taken me 2 yrs to recover. Not sure I want to go on HT or anything. Just keep going.

If life gives you lemons , then make lemonade

User

Posted 17 Oct 2018 at 10:53

Hi Chris , I have told my counsellor that if I run out of time on the NHS I will pay privately. Just had a month gap and I’m feeling it.

you have a lot of courage to take your strategy and hope it pays off for you .

We all seem to have different ways of dealing with this and good to hear other ideas and beliefs.

keep well and good luck,

phil

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