6 yrs alzheimer’s and now prostate with solitary bone L3

Hi Outinthecold - that’s a tough gig you’re on. I have no personal experience in Stage 4 management (I’ve noted bone involvement at L3 lumbar).  For what it’s worth, I think you’re doing the right thing as POA.  Hormone therapy isn’t technically invasive and it will most certainly slow things down (albeit with associated fatigue, hot flushes etc as side effects). We have several regular contributors on this site who have the required personal experience of Stage 4.  They will help you out of those darkest places, I’m sure.  Stay with us.   AW

Thanks Alpine wanderer . It’s a lonely place when your best pal isn’t there to talk to when the advice needed is about him ! What a thing, we are 43 yrs married so it’s a real shocker to try and deal with . I’ll come back on here once I’ve had  the telephone consultation.

Yes, come back after the consultation and we may be able to clarify what you will have been told.  Write everything down at the consultation! Incidentally, my wife and I have been married 42 years so I can empathise on that score!  Don’t be worried about the consultation - take it slowly and stay calm.  Tel, the consultant that you’re writing the key points down.  AW

Hello and welcome Outinthecold . My husband has been on the stage 4 journey since July 2020 but doesn't have the added complication of dementia or Alzheimer's. I noticed that your consultation is with the Urologist and not the oncologist who might have a better insight into the different therapies available. There are different types of hormone therapy which work in different ways but fatigue seems to be a common side effect and the best way to counter it is with exercise so encourage your husband to do as much as he can. With a single bone met is it worth asking about a short course of radiotherapy - whether it is feasible would depend on your husband being able to lie still for a few minutes.

I have tagged Liz johnam in as she has experience with Alzheimer and Dementia patients so might be able to point you in the direction of where to get help with this side of your husbands life.

Please use us as a sounding board, ask any questions and we will try and help. We are also here if you just want a rant or if you just want a chat about anything. Let us know what the consultant says.

Good morning Outinthecold 

I hope you are ok . I understand how anxious you are with the phone call but be ready with questions you need answers too . 

are you in UK? You can ask for help to support you both via your local GP  / CPN services .

If you need any support to signpost you to other services . Please just ask . I had well over 30 yrs in social work working with older adults who had dementia . 

huge hugs and we’re all here for you and your husband 

Liz & OH xx

Gosh thankyou all for your great support and the consultation wasn’t anywhere near as testing as I expected mostly because we’d already had a copy of the diagnosis letter sent to GP following the MDT team review. There has been dementia and oncologist input too and i’d already asked for that.  

It’s a clinical diagnosis because he couldn’t cope with biopsies , MRI, Radiology due to the Alz. His mobility is failing gradually and until 2020 was active with pilates and stuff but he has no energy for more than brief walks which is so hard! And the hormones make his already diminished energy a greater  challenge. 

I’ll follow up on all your suggestions and advice and keep coming back. 

They said as far as we know we are expecting years unless a kidney issue emerges or if the dementia takes hold . It’s a balance dealing with 2 conditions 

yes. UK , we’ve got a great rural alliance practice … very luck x 

Hello Outinthecold 

A belated warm welcome to the group from me although I am so sorry to find you here under these circumstances. I am away on holiday at the moment and being where I am I can't add links to my post - I do have some help for you - however, if you contact our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) they should be able to give you some additional help and support.

Feel free to use the group for any questions or just for a chat - we are a decent bunch and are happy to help - however trivial the question.

Best wishes - Brian.