Dad’s prostate cancer spread to bones and liver

Hi Everyone,

My dad (now 79) was diagnosed last July with locally advanced prostate cancer (Gleason Score of 9 (4+5)), at test time we were told it had spread to his lymph nodes but no spread to bones. Was on Bicalutamide then Prostap injections. Had 7 weeks of radiotherapy from Jan to March this year. Had some acute urine retention and is catheterised now. Given his age, he didn’t opt for chemo.

He has a couple of nasty water infections and then started feeling more unwell in June, got worse in July - aches and pains in ribs, back and neck and then started losing weight and muscle mass.

Our worst fears were confirmed a couple of weeks ago - it has spread to his spine, neck and ribs and there’s a small patch on his liver (not had biopsy but they obviously think it’s cancer). 

I know it’s not curable and, although no one has told him definitively, I fear we’re looking at weeks, maybe months,

Given that the hormone therapy clearly wasn’t working - although his PSA level has remained low, which seems to have surprised his oncologist - i asked about Abiraterone but they said he’s not strong enough for it. They’ve put his on liquid steroids (for a month) and that does seem to have helped with his energy/appetite and he’s currently on Oramorph and Fentanyl patches to help with the pain. He’s also back on Bicalutamide. He had a dose of palliative radiotherapy to his spine/neck.

Has anyone had a similar situation? Any advice - dad just seems so shaken by the quick deterioration and is struggling to process it. St Luke’s are involved and, despite no one telling him how long he’s got left, they’re asking him about “end of life” plans, so he now thinks he’s only got a few weeks at best.

Im struggling to know what to say to him to try and help with his mood. Can anyone recommend any complimentary medicines - I know he can’t be cured but just to help him feel better. Has anyone used CBD oil, would they recommend it and if so, can they advise where to purchase it safely from?

Thank you

Keeley 

  • I am so sorry to hear this.  No one knows how long your Dad has left with you and it is not necessarily easy to say.  Do you have a keyworker at the hospital or a Macmillan Nurse you can speak to to help you?  Do you have a Maggies Centre at the Hospital or another Hospital or another such Cancer Self Help Group you could go to to ask for advice and support?  Do look a Self Help Group up as they can be invaluable for the sufferer and their families.  Maggies has been a great help to us even though my cancer seems to have been cured I still go and see all the men in the Prostate Cancer Group once a month or so and it is so good to chat with them and their wives and families.

    CBD can be purchased from some pharmacies.  I would ask your pharmacist if he can reccommend either a pharmacist who can help with that or somewhere that  is reputable.  Holland and Barrett do sell it but am not sure if they would sell the higher strength which maybe what is needed - though it might be a good idea to start your Dad off on the lower strength to see if he can take it before finding a source for a stronger one.  Always check with a pharmacist and Doctor on whether it is OK for your Dad to take this as he may be on other drugs which may be affected by the use of CBD oil.  I know many men who use it and swear by it helping to keep their PSA low and others who use it for pain etc and everything is worth a try.

    All the best to you at this dreadful time.

    Des

  • Hi Des

    thank you for your kind words. We’re all just devastated at the moment. We’d been so helpful that the radiotherapy and hormone treatment would keep it at bay; I think dad now feels it was all for nothing and it was a lot to go thru for him, at his age.

    i’m just hoping that we can get him feeling stronger and that they might be able to slow down any further spread. 

    keeley 

  • I spent £1000's on the best CBD OIL for my dad, DON'T WASTE YOUR MONEY!. Tried various brands all the best money can buy. May as well donated the cash Macmillan. All crap all a scam. Buy organic foods eat tomatoes and green leaf salads. Keep him moving keep him motivated MIND over MATTER. Good luck wish we had some!.

  • Hi Ja32,

    ive purchased some CBD from Holland & Barrett, not v strong and not that expensive, on the basis it can’t hurt and might help.

    He does eat lots of tomatoes but generally now he’s just wanting sweet stuff, so not much hope of getting his diet all that healthy, unfortunately.  I bought some good quality protein powder in the hope that might get some vitamins and minerals in him.

    i keep trying to get him to have a few minutes walk round the house/gentle exercise, but he’s resistant to all encouragement at the moment - I’m hoping his mood lifts and I can get him up a bit more.

    thanks and lots of best wishes to you too

    keeley

  • like others have said it's worth a try but don't get your hopes up. I had to try like you, we will try anything just don't go mad like me wasting £1000's. Still what's money at a time like this. 

  • At his age, and with (probable) liver metastases, your estimate of weeks/months is probably right, particularly as a damaged liver rules out many treatment options.

    It seems to me that your priority should be his comfort and well being, rather than the worrying about the disease. The hospice team are the best people to help you at this time. Most hospices have outreach/home centred care as an option, and they really are the experts in symptom control - and that includes low mood or depression.

    Obviously, it's also a time for him to be getting his affairs in order, and for you to be creating as many good memories with him as you can!

    - - -

    Heinous

    A healthy-looking decrepit, 69-year-old male, mentally alert but forgetful. I no longer have an urge to choke people who say "all you need to beat cancer is the right attitude" - better to smile and move on.

  • Thank you for taking the time to reply. His pain has lessened, it’s just the weakness and fatigue that’s difficult to deal with.

  • Dear Keeley

    I am so sorry to hear of your Dad's rapid deterioration.  Exactly the same thing happened with mine earlier in the year, and we lost him on 19 March, aged 85.  The physical issues he is experiencing sound extremely similar to what my own father experienced.

    End of Life plans can be difficult for a family to discuss, but for us it was absolutely the right thing to do and it gave us certainty that we were doing what DAD wanted.  The biggest thing for him was that he wanted to be able to die at home, and having made that decision we found our GP was just incredible.  Everything was done to support Dad staying in his home, even though we had to turn it upside down to make it happen.  He had his bed in the dining room, which we kept as a dining room, so there was as much normality for him as possible.  We could not have had better support from the GP surgery, district nurses or carers.  My parents also discussed and arranged the DNR for Dad with the GP, so there was no fear for anyone that should the worst happen and he was pulled into hospital, his wishes would be followed.  I don't know what kind of relationship your father has with his GP, but would it be helpful for them to talk to one another?  Dad was also shaken by the estimate of time, but that assessment gave him the ability to say, right, I need to make sure X is done; I need to say this to Y...and for my mother, brother and me it also confirmed our own private thoughts and let us come to terms with the idea.

    We have always been fairly open about that kind of thing - my parents were both nurses, which helps - so the conversations were easy enough for us.  Moreover, I found it easy to talk to my Dad about how he was feeling.  I would ask him how he was feeling, was he afraid, if so, of what? It helped him to know he could talk about exactly what he was feeling to us and it gave him comfort. 

    The speed of his deterioration was difficult to deal with, because of the dramatic weight loss.  He had very little appetite and he also found that his taste buds were affected - nothing tasted right except for apple and pear juice and ice cream - so we gave him whatever he wanted, whatever he fancied.  His legs had been badly affected for some time, but then just gave up completely. Dad didn't want to do anything and was constantly exhausted, and beat himself up for being so tired.  The only consolation for us, was that if he did not want to do things, then he didn't feel even worse because of his physical inability.  I can truly empathise with what you are seeing happen to your father, and it is deeply painful.

    I don't know if any of this has helped you, but  this is what worked for us, and I sincerely wish you and your family all the love, strength and support you need at the moment.

    Eilidh

  • Hi Eilidh 

    thank you so much for your response - as you say, our situations (sadly) sound v similar.

    my dad is still at the angry/bitter stage - and who can blame him, especially given the pain and exhaustion - which I think he’s using to hide his natural fears. I have tried to talk to him but, for the moment at least, he doesn’t want to talk about the difficult stuff.

    its the fatigue and realisation he’s not getting stronger that’s hitting him (and us) hardest - the weight/muscle loss is frightening for me to see, so I can’t imagine what it’s like for him to see in himself.

    im just trying to be there for him and to try and support him thru it all.

    keeley 

  • Hi Keeley

    I remember Dad going through that terrible stage.  Terrible for him and for  us to see him going through.

    Just keep being there, keep doing what you are doing.

    Be kind to yourself. 

    Eilidh