Hormone Treatment

Hi Goggie sorry to hear your OH is still having problems. Last time we spoke he was half way in his RT, so I am pleased to hear you got through to the end and his PSA is now low.  I wasn’t quite sure what you meant by ‘ill tired’ but it sounds like fatigue is a problem which most of us seem to get in varying degrees. I don’t know how fit your OH was at the start, but fatigue seems to get worse with less exercise and that becomes a tricky spiral to break.  Also, thinking about cancer/death all the time doesn’t help your mental health, so things to take your mind off it are good.  We all have our bad days but I can honestly say that I have had many more good than bad in my years since diagnosis.  My suggestions would be to try and eat well, exercise (but listen to your body), do things to take his (and your) mind off it and try and be positive.  Please come back if you have any questions, best wishes, David

Hi !

First of all, so sorry that his treatment is making him have side effects.

Do I understand it correctly that hi has had prostatectomy and now he have had salvage radiation treatment to prostate bed? He was put on Bicalutamide but you don’t mention any additional hormone therapy so does it mean that it’s Bicalutamide only he is on?

When it comes to hormone therapy in any form it’s a really big field of potential side effects with fatigue, hot flashes, lost libido and etc. The spectrum is wide from mildly affected to a total caos. Many side effects can decress or go way and the best help for fatigue / tiredness is to work out as much as possible and in any form and also eat well, more balanced.

If only on Bicalutamide, have’nt the MO / medical team wanted to put your husband on a standard hormone therapy drug together with Bicalutamide? Bicalutamide is a ’inhibitor’ which means the testicles still produce Testosterone but Bicalutamide blocks the prostate cancer cell from being able to use Testosterone as ’fuel’. Hormone therapy medications stops testicles from being able to produce Testosterone; e.g. Chemical castration

I think your questions is relevant and I know for a fact that there are many persons on this community that can provide you with very own experiences when on HT or have been on HT

Best wishes - Ulf

I know the feeling - about 30 months in from the start of hormone treatment (Zoladex) completed after 24 months, and 16 months on from RT 5x fractions (PACE - NODES trial). I was very healthy prior to diagnosis, managing a conservation group - cutting down/moving trees, mowing large swathes of grassland, litter picking, etc. But now, I can't do any of it!

I'm always tired, averaging 16 'hot flushes' in any one 24 hour period, very limited sleep, suffering from erectile dis (NON) function, bowel problems, massive mood swings and so 'down' because I can't get any help - been to the GP and told 'there's nothing she can do'.

I'm at the wrong end of giving advice - which, for me, has been 'Go and talk to Maggies/MacMillan' which hasn't worked. I just feel ill.

Good luck, but be aware... it can be horrible!!!

Hi !

I think that what you AndyK is describing is actually the ’proof’ that side effects from hormone therapy is NOT ’One size fits all; it really can be awful as you describe it, for some it’s very mild and then for the most of us it’s something in between and can go up and down when you’re on hormone therapy.

But AndyK makes a really important point that HT and serious side effects can be real.

But in the end, not using it when recommended carries risks of treatment not working, recurrence and a cancer that progresses out of control so, in the end a personal choice of what is most important.

AndyK, so really sorry to hear what you’ve gone through and is going through and hopefully it stabilizes to a better QoL

Best wishes - Ulf

This may, or may not, have any bearing on your thoughts, but it was instructive for me. 

I attend a chiropractor monthly fair a completely different problem. 

I was having a minor winge about hot flushes which are occurring a lot at the moment. 

He said he would take it as a win! He then said that at least I had some evidence that the treatment was doing something. 

I hadn't thought about that before. 

You need to pester people about the congested chest. 

This illness is, though, a mental battle was well as a physical one. 

It is really hard to get the word "cancer" out of your head. Sometimes I am bowling along, and then I am suddenly reminded. 

I have found out things I can do tho help, and I do them. 

For example, it is recommended that you call with the fatigue by increasing exercise. I thought "That's stupid!" - but I did it anyway. 

I now go to the gym 3 times a week. I have gone from hating it to only disliking it, but it is working. 

Having said all that, the congested chest is something to tackle. There needs to be a discussion with your medical advisors. The discussion may need to get a bit pointed. 

Steve

Today, the ultimate insult from my partner - because of my cancer and associated problem, she hasn't been able to have the holiday(s) that she deserved over the past 30 months. I've told her to organise whatever holiday that she wants as I can live on my own for as long as I want, so she's going to look for a holiday or two away from me. What I have determined is that she can go on holiday without me, sleep with whoever she wants, but just don't expect me to be here when she returns - am I jumping the gun

Hi and thank you all so very much for your time and your replies.,

It can be quite hard being the spouse of someone who is going through this illness 

I feel so sad for my husband as had it all been acted on by the GPs when his PSA came back as 4.4 up from 1.9 … and instead of waiting to have another test insisted on by him and it was 7.6 ( still regarded as non urgent then maybes he might be on a different path. Statuary data should be from 4.0 as in the US not 4.9 as it is here 

He is struggling with the hormone treatment but is grateful for it at the same time.. As you have all said it is the way of things. 
Thank you again just reached a point I needed to reach out 

Goggie 

Hello Andy, I know that you ask this question of Ulfhbg , but I felt I just had to respond from a 'wife's point of view'.

My husband can't travel at the moment due to another health condition. We have had two lovely holidays since he was diagnosed 2 years ago but would have travelled more had we been able to managed to keep our annual travel insurance going without it being continually suspended for that other condition and the PC. That insurance question however also would depend on my being able to honestly declare that I don't have a close family members with a health condition that might necessitate curtailing a holiday to return home because of a known illness. So, essentially, both partners become UK bound by the health status of just one.

I'm really sorry to hear that your relationship is still floundering, that you feel the side effects so badly and that you can't get the help and support that you are asking for. My husband did not cope too well with the HT either. He stopped taking it 6 months ago and just today he told me he is beginning to feel that he is beginning to feel as if he is emerging from the side effects. I am wondering whether your oncologist would let you have a break from the HT so that you can get a bit of respite and hopefully get your relationship back on track? I think some people avail themselves of this?

Take care and best of luck