I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Prostap to Degarelix

User
Posted 31 Jul 2018 at 17:47

Hi , i am 6 months into this journey and need some advice.


have locally advanced PCa Gleason 9, PSA initially 26.5. I have been on Prostap since February and am having serious mental issues. I’ve had Brachy and now 3 sessions from end of Radiotherapy . I’m seeing a really good counsellor now as I have found the Prostap has re-opened issues I have from childhood. I had a difficult time the first few sessions but 6 down and we are getting there. I have have very little other side effects. My nurse and consultant think I can go to monthly instead of 3 monthly injections and change from Prostap to Degarelix .


any ideas if this will help or maybe I should stay as I am and work with the counseller to get my head sorted?


as I say I’m happy with the Prostap other than lack of libido and mental issues. I have just 1year till my last injection.


 


thanks


phil

Edited by member 01 Aug 2018 at 07:25  | Reason: incorrect gleason

User
Posted 20 Sep 2018 at 21:51
I don't read PMs - I disagreed with them being introduced to the forum on the basis that if someone gives incorrect information / poor advice privately, there is no opportunity for everyone else to intervene and put it right.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
Show Most Thanked Posts
User
Posted 31 Jul 2018 at 20:40

Hi Goalhanger


My advice is to take the best medical advice on treatment you can and work on the mental health issues based on whatever that gives you, not the other way around. It may be that the offered option os just as good risk wise but if not, you need to think really hard. You can work on your mental health with a tough treatment but a second tier treatment will be harder to dig out of health wise even if it eases the mental symptoms.


You have a counsellor. Great. Are you on any MH meds? If not, I suggest you discuss with your counsellor and GP to see if short or long term they can help.


I would also suggest visiting Maggies or similar to talk to the staff there and join any groups they have.


I fully understand and sympathise with this opening up the past. It will be tough but at least these issues are starting to present and you can work on them.


Be patient and kind to yourself and look after your diet and do some exercise.


Cheers


Pete

Carpe Prostatem

User
Posted 31 Jul 2018 at 20:55

Thanks Pete, I am leaning to this as well .


i think I need to deal with the issues the way I’m doing now. It’s not easy and the first couple were very traumatic to say the least as I really thought I had put the lid on years ago.


i am doing weight training and I am lucky enough to have minimal physical symptoms. 


Obviously some of the fears if the future and long term side effects are worrying but initially I was overcome by the past . I think that is changing now .


I will speak to the consultant and doctor about the one month injection only and see what they say.


 


thanks


phil


 


 

User
Posted 01 Aug 2018 at 07:51
Hi Pete,

Its funny what you say as that's what my counsellor says 'you're too hard on yourself, be kinder to yourself' . And i was quite adamant i don't want to go on meds.
I also was contacted by someone at Hull University who are looking into the training for cancer treatment. I mentioned that the one-stop clinic i had back in July 2017 showed i was fine except high PSA they suspected due to a water infection. I had another PSA done a couple of months later and then things moved very fast when they saw it was the same. So the clinic was a waste of time and they should have done an MRI .
I also told her that there isn't enough mentioned of the possible mental issues with HT . I suspect this is linked to age and maybe initial Testosterone levels and probably how strong you already are mentally. I have spoken to several fellow sufferers at hospital and they only mention the hot flushes as the worst effect - if only that was the case for everyone !

So, Pete, what was your survey for and is it too late ?

Thanks,
Phil
User
Posted 01 Aug 2018 at 10:53

I have been on PROSTAP since December 2016 and have been prescribed Sertraline for depression/anxiety.


It has definitely help me.


 

User
Posted 01 Aug 2018 at 11:37
Hello Ido4 i am pretty adamant i dont want any meds although i am pleased it works for you. I was on Citalopram for a while a few years a while back and hadnt known before the affects on your sex drive, so i quickly got off that. I really dont need that on top of the HT as my actual sex drive is only diminished not destroyed ( so far )...
I think i need to address my issues through the counsellor if i can , mostly it is do with my past and i know initiated by the thoughts of the future with the PCa but i do feel i can get to a much better place permanently through the counselling.
At the start i was told 2 years on the Prostap but the other day in my care discussion after Radiotherapy session she mentioned i could plan to finish the injections at 18 months ( 1 year to go ) which was a bonus as i am seriously counting down the days.
I feel i should be grateful to be given a chance of a full life but i think as i was told right at the beginning i was curable so i didn't think like that and just focused on the possible issues for the future, and also whilst on the HT . Bit selfish of me i know, and i don't want my wife to suffer any more than she has to . My counsellor says i need to think more of myself and be kind to myself as she feels i am too hard on myself.
So, i am considering going monthly instead of 3 monthly but i am leaning towards staying on the Prostap as other than the mental issues ( exacerbated by my past issues ) i am doing pretty good on it. I have no physical issues really , i have actually lost half a stone and only get mild hot flushes.
Anyway we will have to see . It may be i have the same old worst effects after every injection even with a lower dose. Gotta suck it and see i suppose.
So all the best to you .
Phil
User
Posted 09 Aug 2018 at 07:51
OK decided on sticking with the 3 monthly Prostap as better the devil you know. Now 6 days since i finished 23 RT sessions and no side effects at all, well maybe i can be slightly more urgent occasionally. I had no side effects from the Brachytherapy so far so i suppose i am a lucky bunny.
I still have a number of counselling sessions left and i am dreading when that finishes and might even ask if she does private work .
Cheers
Phil
User
Posted 20 Sep 2018 at 20:48

Ok so saw my consultant today and my PSA has dropped to 0.37 . That sounds good to me 7 weeks after RT and the consultant was pleased . I was told another 18 months on HT so have to get on with it ...


i didnt realise that 2 years is the optimal time that the HT can still kill off left-over cancer cells . I thought it was just buying time . 


I am struggling with the HT as you will see from my other posts but I am aiming to stay alive for a bit longer yet and even enjoying my time left ! 


Still continuing with counselling, which I think is necessary with the HT especially for me anyway. And hope to come out the other side fighting fit .


Good luck to all out there, I now fully understand the battle we have ,and I have been incredible lucky with most side effects unlike a lot out there but I have suffered with the mental side of things , and still am but think off you all.


Anyway we don’t have a choice , and we have to think of our families going through this along with us . I raise a glass to them.


Celebrating a PSA of 0.37 . Fingers crossed for the future for all of us .


Cheers


Phil


 

User
Posted 20 Sep 2018 at 21:21
Really pleased for you :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Sep 2018 at 21:26

Thank you very much Lyn .


Did you see my pm ?

User
Posted 20 Sep 2018 at 21:51
I don't read PMs - I disagreed with them being introduced to the forum on the basis that if someone gives incorrect information / poor advice privately, there is no opportunity for everyone else to intervene and put it right.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Sep 2018 at 22:17

Ok understand but some times we are not able to share with the whole world. I am not strong enough for that. So I won’t expect a reply unless I put in normal post . Understand and ok with that .


thanks anyway .

User
Posted 20 Sep 2018 at 22:42
:-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Sep 2018 at 07:35
Was back reading this thread in light of my recent medication experiences and just wanted to drop my ha'penny worth about anxiety and depression medication.

Although there have been a lot of reported issues with axiety and depression medications over the years, they are not de-facto "a bad thing". It is often down to what medications you are on and other surrounding circumstances not the drugs in general.

If you are on anxiety or depression medications and are not getting on with them, go and talk to your GP about dosage or alternatives. They may be able to offer something else in the same family of medications or from a different family of medications. This gives you more options than just stopping them.

If you are one of those people who won't consider them but are struggling with anxiety or depression, think about having a talk to your GP (and counsellor if you have one) about trialling them (bearing in mind the above paragraph about beinbg able to change them if you encounter issues). Yes, there are sometimes side effects but sometimes the benefits outweigh the drawbacks. If you do not have a counsellor, getting one may help too as a longer term thing.

The key thing here is informed choice.

We need everything on the table to fight this "bandit" (as one of my peers on another site calls it).

Cheers

P

Carpe Prostatem

User
Posted 21 Sep 2018 at 10:53

Hi Pete,


Yes i am considering the medications now and do see a counselor regularly, which is really helping. Its just i don't want to go 'fuzzy' headed. A consequence of this situation and HT combined is that i have seen my life slightly differently and i don't want to lose that. I suppose we all can get a bit complacent when we get older and i have now seen that and i don't want to go back to the 'old' way.


On a slightly different tack - one thing i hadn't thought about was that with highly aggressive type of cancer (5+4) i stand more chance or recurrence . So was a question to my consultant yesterday ( actually it was a locum consultant ) and he said it was around 80% chance of non recurrence , so 20% chance of it recurring . I am hoping that the fact i have no symptoms from the Brachy or RT is a good sign.


Also wasn't sure if 0.37 PSA was good for where i am in the timeline , the consultant said it was .


 


Blimey , there's always questions isn't there .......


 


Cheers,


Take care , its a dangerous world out there !


Phil

User
Posted 21 Sep 2018 at 11:25

Hi GH


What I found was halving the dosage mafe a huge difference to tiredness and fuzzy head whilst still giving benefits. It is all about tuning.


Sounds like you had good feedback on your recurrence chance (assume from a nomogram?). My surgeon called the initial chance 50/50 IIRC and my curent onco flatly refuses to give odds. Either he is as cautious as the come or he knows I am totally rubber ducked and doesn't want to make me panic. Hey ho.


Good luck!!


P

Carpe Prostatem

User
Posted 21 Sep 2018 at 11:28

I think a PSA of 0.37 7 weeks post RT is fantastic.


Really pleased for you.


Ian

User
Posted 21 Sep 2018 at 12:27

Thanks guys , wasn't really sure how good the number was except the consultant was pleased.


Re Meds . I am going to give it a week or so and if i have to will go see my GP . My counselor has also said it might help just taking something for a year or so while on the HT .


Will keep you posted ..........


Phil

User
Posted 28 Sep 2018 at 14:36

Hi Guys,


Well I just started on the Mirtazapin , 15mg, 2 days ago and definately sleeping better and i think maybe i'm a little calmer ....we'll see in a week or so. Not what i wanted to do but needs must...


My GP did say i could double the dose if it's not working too good in 10 days . I really don't want to do that.


Regarding my 80/20% chance of non-recurrence , i didn't see the consultant refer to anything he just came out with those numbers for 10 year survival  (i don't like those words i'm having to use nowadays). No idea if he used a nomogram or not , i didn't ask.


I suspect some consultants are more cautious about giving odds - it is a bit of a lottery after all. I do now understand that with the aggressive nature of my PCa ( G9 - 5+4) that i have a higher chance of recurrence. I don't think i really got that at first , or i just didn't listen! i suppose i should have realised as the timing of my treatments was all pretty quick from diagnosis compared to some.


At the moment i am very lucky so i'll take that thank you ....


Take care,


Phil

 
Forum Jump  
©2018 Prostate Cancer UK