Low point.. something missed.. why don't they listen to the patient?

Hi Andy

Have you ever thought of trying a different hospital ? Or going to the top guy and wanting a few answers, I found with a number of persistent phone calls, being as polite as possible things happened.

About your tiredness and fatigue, I’m on prostap to have been for five years, I’m on other medication but it can play with your head although I think the enzalutamide has something to do with that.

Stay safe

Joe

Hello Joe,

Thank you for reply. I am under the 'top man' for my area, I did some checks on him and found this out. I have considered asking for transfer to another hospital but he is the top man there as well. However his nurse is really good and very helpful and will give me information that I have forgotten or remembered incorrectly.

I read on another site that someone had moved their three monthly Prostap jab to eight weeks and that had made a difference. My GP nurse and I have moved my injection to ten weeks to see if there is good reaction to that, next blood results will be proof of that. There is a side effect, the sweats are horrendous, but if it stops the increase then I will put up with that. And if it doesn't work we are looking at moving it to eight weeks.

As for Enzalutamide, I detest what it does to me. It destroyed my skin and my memory. Once the oncologist realised just how bad I was it was removed from my treatment. Sadly, I am aware that I may have to go back on it but was told by another oncologist that if I did, it would be a last resort and I would be dead within three months because my PCa had spread agressively.

My father died of Dementia and people are begining to tell me that I remind them of him and how he couldn't remember things from the immediate past but the long past was clear as day; well the things i liked as child and teenager mean more to me now than the things that I valued last year.

Hey ho maybe its a depression and once the review is in, and I am fine, I will be better in my mind.

Cheers

Andy

Hi Andy

I might ask about the prostap injections see if mine can be narrowed as so to say. When I go for my check ups ( three monthly ) they look at my blood results PSA etc, always ask how I’m doing, because I’m on enzalutamide I ask what’s the next step, of which I’m told, chemotherapy maybe radiotherapy, plus there’s some new trials, my wife does not want to hear that’s it, so whatever it takes as long as it does not kill me, I will try them all.

I have the memory thing to, although it’s short span, as in leaving a light on, going to a cupboard and looking inside trying to figure out what I want, or maybe some words that are everyday use but gone, although I have a great past memory,  strange that.

Stay safe

Joe

Hello Joe,

Before I answerrt all the points you raised and continue our discussions, I have to tell you there is a big Thank You coming your way.

Are all your reviews face to face? I ask because so many of mine are telephone consultations / reviews and sadly my hospital was a main covid treatment hospital for a wide area. As a result I haven't been able to see my figures for myself. And I don't think that would have changed if it hadn't been for the in crease in PSA.

If its not too personal a question, are you being treated for Prostate Cancer or metatastic prostate cancer, I had my prostate removed two years ago in August but it had spread by then - sadly that was an operation delayed by covid, it should have been in the April. Also because of my asthma, I am unable to have the chemo etc.

I am interested in new trials and I read in a paper that there maybe a treatment for Prostate Cancer in its ordinary form, that is potentially going to be a game changer, to the point of potentially offering long term relief or possibly a cure. Sadly metatastic isn't that easy. I have a letter from Prostate Cancer UK, which I haven't read yet, that is about new trials, like you if there is a way to be positive sand not get killed in the process, I will take it.

Yes ask about the shortening of the injection times, maybe it will get you off Enzalutamide because what you describe about your memory is exactly how I was on Enzalutamide. I am not that bad these days. Though I am easily distracted, (came upstairs for a tape measure this morning, looked on my table at a letter and went back down with the letter that required answering but not the tape measure. I got downstairs and then remembered the tape measure.)

I find the words that are missing tend to be more when I am under pressure, especially when people ask me questions, so conversations can be awkward and people have to interpret what I mean. I can describe something but cannot remember what it is. But if I am left to work through thiings at my own speed or it is a case of procedure, I am quite happy. it is partly why I prefer to work from home instead of the office, I relax and the work gets done. So you might try some time off enzalutamide, so long as it doesn't affect your PSA and see if there is a difference. I will tell you what I did but it wasn't deliberate, it just happened. as i said in earlier mail, I was having skin problems but the kicker was this: I was talking to my oncologist and he was filling in a form on line for me when I just stopped. it took him a few seconds to realise I had stopped and then he looked at me. All I could say was 'I am sorry, I have forgotten what I am saying,' he asked me if this was frequent and I said yes, this is an Enzalutamide side effect with me. I have to work like this. If you tell me what I was saying I can pick it up again. He then asked me if this was frequently and I answered, 'daily, a lot.' and that was it, Enzalutamide gone. If you like Me 1 Enzalutamide 0.

And now the big Thank You. Our conversations have started to make me feel positive, so much so that I have booked a holiday in Scotland. It is only a few days but I decided that having read your words it was time to stop feeling sorry for myself and become positive again. I am going back to my favourirte hotel in Edinburgh from where I can have a couple of days out but rest in between times. As I say, a big Thank You.

Andy

Hello Andy

I’m really pleased about you being positive again, it’s been hard over the past few years with covid and stuff, going to your favourite place is a big thumbs up, ( hope it’s not this week with the storms ) I like Scotland lovely place.

I get more forgetful by the day, not seriously, just small things. As I write books it’s a good job I have spell checker, but doing thin keeps my mind ticking over.

When I first took enzalutamide I was on metformin ( diabetes medication) as well four of each tablet flowered me, I spoke to my diabetes doctor and the oncologist and had my tablets reduced to two of each, then built up enzalutamide back to four not metformin though, as my diabetes is under control at the moment. Being seventy this year I know a few brain cells are bound to fade, just have to live with that.

Thank you for the message, I do my utmost to help people on here, if they’ve been through or about to have the same treatment as I did, then I’m able to to give information help put their mind at rest and hopefully their families to.

Enjoy your relaxing holiday you deserve it.

Stay safe

Joe