Prostap to Degarelix

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

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

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

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

Thank you very much Lyn .

Did you see my pm ?

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 .

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

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

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

Just a very quick update for anybody that's interested.

My last PSA was 0.2 at the end of '18, from a starting point of 26 Dec '17, I see my consultant in June for my next reading ...fingers crossed. Last Prostap injection in October - Yippee.....then the long wait 😬

Luckily still no real side effects. from the Brachy. and RT, and carrying on with the fitness training although i had a setback with an arthritic shoulder joint, but back into it again now. Tough Mudder early May (so far raised nearly £600 for PCa UK) and hopefully more to come...Tough Mudders and sponsorship ..

5mg Tadalafil is doing the trick , thank you very much 😉. Although i never really lost my libido completely anyway. Don't know if i'll always need it but presumably I will find out when the HT wears off.....Still not friends with my 'Sonya' -SomaErect, we just don't get on !

Still suffering in the head department but my counselor is doing her best bless her ! My mind does not work normally apparently (my wife could have told her that 😀) ! I tried the 'safe place' thing to deal with my past traumas but it didn't work for me. So we are now trying a new idea where when i get down i think of all the things that used to give me a 'buzz' when i was younger. They were the things that made me feel alive as i suppressed a lot of my emotions growing up and I needed the adrenaline to feel anything. At school that would have been chatting up girls on Southend seafront & winding up the Greabo's, and later going fast on my motorbike and boat. Anyway it seems to work better that the safe place 'doo dah' - sitting on my hands and breathing slowly really wasn't for me. I did also up the Mirtazapine to 30mg which might have helped. I do at least sleep like a baby.

Also took a knock back Wednesday when i got 2 weeks notice from my job ( re-org). I am a consultant (have been since 1978) and quite specialised in what i do so probably pretty stuffed now unless i travel which i don't want to do. I don't have a work place pension and no severance so it was a bit of a blow . Anyway we have options going forward but it just could have been timed a little better. Looking forward to seeing my counselor again in a couple of weeks ! Where's that 'safe place' when you need it .....feels more like a kick in the teeth than it might have been before the PCa.

Not ready for the pipe and slippers just yet - if ever. I'm just not like that and i know there are others on here like me too.

Anyway, keep on battling through guys and gals, 

Phil

Thanks Lyn,

I find it good to write stuff down. It helps to find a perspective about everything, otherwise you are in a bubble on your own. Also helps to read what some other people are going through to understand sometimes how lucky I am !

I wrote a short story of my childhood for my counselor to read and i found it really therapeutic and helped me to balance up everything that happened to me. Made her laugh anyway 😄 but did lead onto many more questions....

Take care,

Phil

Thanks, Paul and Lynn. 

I wasn’t sure how low the PSA can get on HT alone...

Being back on 3 month checks feels better though.

Phil

Just a quick update : I have 116 days till my last Prostap injection and it can’t come soon enough. 81 days till I see my consultant again and 10 days till I see my counsellor again ......

Since just before the last HT injection I have been feeling very low. I just want to sob my heart out but I’m trying so hard not to. I know I’ve been lucky but try telling my head that. I can’t wait to see my counsellor again. This is so hard on my other half .

I don’t think the consultants understand what this stuff does to you mentally. I know I have to battle it out to give me a better survival chance but I hate it so much.

I know I have some childhood sh*t I have to deal with but I was ok with that before I had these damned injections (or I should say it was well hidden at the back of my mind ).

I understand not everyone suffers like this and don’t want to put anyone off the HT if they have to have it but do realise what it can do to you and be prepared .

Good luck to those suffering like this , I know there are some who have their dark days , and likely a good few who will say ‘count your blessings you’ve been given a chance’. Yep , I agree , won’t stop me counting down the bloody days though .....

Thanks for listening, just needed a rant 🙄

Phil