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Lorraine is a nurse specialist and sex therapist and here to answer your questions...
Hi Ellie, so sorry to hear about your Dad, its just awful. My Dad has prostate cancer which has spread to his bones too and I suspect has spread further but he hasnt been tested as to where. He cant have chemo as his platelets are too low and he has just been reluctantly prescribed a new drug but it could make him worse. I too would rather know how long he has as would my sister as she lives in Florida and doesnt know whether to come home or not as he is now very weak and has lost such a lot of weight and is virtually not eating, he is 69 and its only been a year since diagnosis. Its like an awful waiting game. Love to you X
Hi Ellie - Ive just sent you a friend request, hope you dont mind, its just so we can speak privately. The drug my dad was given yesterday is Abiraterone, it has fab reviews for bone cancer, apparently it forced the marrow back into the bones thus pushing out the cancer cells, obviously its not a cure but it can greatly improve life quality and give them more time. Im not sure if its too late for my Dad but Im praying so, he has gone downhill so rapidly in the last 6 weeks its frightening. Why dont you enquire about it for your dad, its only just been available from NHS so it may not be offered routinely. My Dad also shrunk, just looked tiny sitting there in his chair whereas a few months ago he was healthy looking, tanned and still out and about. Its only in the last two weeks that he has stopped eating, I just dont understand why but he dreads mealtimes and in the last few days he hasnt eaten anything and my Mum said this morning he had terrible trouble just getting the tablets down. I hate this suffering. He can get out of bed with help from Mum but then just manages to sit in a chair for the day other than trips to the loo thats it. Its his hips and pelvis he feels most of the pain in. How is your dad dealing with the mental side of it? Mine is completely depressed and just sits staring into space. Its hard too as I have 3 young children who just adore him X
Of course it is, I will post back publicly to this one though as I want people to be aware of another new drug called MDV3100, it works differently to Abiraterone, (dont ask me how, I dont understand the science). I don't want to upset you but my Dad got Abiraterone and it didnt work which was very disappointing as it is marketed as some kind of miracle, that said, it seems to work for most people, my Dad was just unlucky I guess.
My Dad feels most of his pain in his back, he is currently in hospital and bed bound, for a while he had to use a bedpan but the last two days they have got him sitting up in a wheelchair which bless him he was very excited about. His mood has improved as a result of being out of bed but it was never that bad, he chats away etc., he is very religious and I think that helps him a lot. I cant face the fact that he is going to die, Im not married yet and dont have kids so he's going to miss all that. It must be hard on you that your Dad is so down.
I just read on the interent, wikipedia that once you get spinal chord compression, 12 weeks is the average time, that may not be true, I hate this not knowing. xx
Hi Ellie We are in much the same position. Dad is in hospital with spinal cord compression and also cant walk. It is 4 weeks since he was admitted and is now in a hospice. We were told today that dad probably has weeks possibly months but he is deteriorating fast, fatigue has taken over his body. Everyone is different though so I cant answer your question regardning prognosis. I wish you luck on this awful journey xxx
Hi Ellie, I think it may be too late for Abiraterone for my Dad anyway, maybe if he had been given it earlier but who knows. I will write to you properly once you are "my friend". Hope your dad remains as cheerful that is so lovely to hear at such a terrible time X
So my Dad was told last night by the doctor he wont ever walk again, I bloody wish Id done more research on advanced prostate cancer and discovered the spinal chord compression then I would have told him to get to an A&E much sooner than he did.
It may not be too late for Abiraterone for him, it is supposed to be a really great drug, my Dad was just especially unlucky. Im dying to get my hands on some MDV3100 which is now called something else but I was researching it today and FDA are going to approve it "urgently" which is apparently 6 months! I may not know Dad's prognosis but its not that long.
My Mum is due to have her hip replaced in two weeks so she wont be around which is v worrying as he's very dependent on her. He wants her to go ahead with it as does her doctor.
Thanks for taking the time to reply to me, Im very sorry to hear about your Dad, I have been reading your older posts and it seems your poor Dad has had an awful time of it. At least in an Hospice he is getting the best of care.
please be wary of the prognosis that some doctors give you - they are based on out of date statistics ( and they are statistics and not always right ! ) and based on old treatments.
But the best place for these standard prognosis in my view is the cancer research page:http://cancerhelp.cancerresearchuk.org/type/prostate-cancer/treatment/statistics-and-outlook-for-prostate-cancer
Spinal chord compression does not necessarily mean the end - many men i have chatted to on the Porstate Cancer Chaity forum have been successfully treated for it and have continued ok. But as always with cancer - there are so many different ways this disease can work - so we cant generalise.
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