steroid use in palliative care

My dad was prescribed steroids about 5 weeks ago and they helped enormously, with all of his symptoms and his mood, energy levels etc. It's been like giving him his life back again. However we know this is temporary and now that the dose has been decreased to the minimum I am wondering what to expect next. I dread the comedown when his symptoms return and worry so much that he will give up mentally. He has mouth cancer which is not being treated, so his care is palliative and we don't know his life expectancy, except for being told it would be "months" when we decided against treatment, over 6 months ago. Has anyone any similar experience to this?

  • Hi there, not much help I'm afraid however I just wanted to message you say I am in a similar journey with my dad. He was diagnosed with advanced lung cancer and only given palliative care. He also was out on steroids 6 weeks ago and I got my old dad back! I always knew this would mask the cancer however, to have hime back smiling and eating was a blessing.

    his about to have round 2 of immunotherapy so no longer on steroids and his litrally dying before my eyes. He hasn't been sleeping or eating for three days. We just fear the end is in sight let alone having the strength to make it to treatment on Monday. 
    I hope things go ok with your dad and it's such a cruel illness. 
    thinking of you and your family 

  • Hi [@Dolphin23]‍  just wanted to ask how your dad is doing? My dad is coming off the steroid Dexamethasone tomorrow that he has been on for the past month (two weeks with two tablets daily and two weeks with one tablet daily). I'm just wondering if we'll see a big difference on Friday once he isn't taking them?

     

    x

  • My Dad is also in palliative care and has just come off a course of steroids. The slump is very extreme I'm adfraid. He's back to falling asleep on the hour, less energy, low moods and very  subdued. The steroids definitely gave him a new lease of life, laughing, joking, optimistic & much more energy! Such respite for him & all of us. Such a pity he can't take them long term! 
     

  • Hi my mum has been prescribed 14 days of steroids and she feels and looks like a new women. No pain, reduced dizziness, she is awake all day, is able to move about freely, increased appetite, her blood pressure has gone from very low to normal. The list goes on. I am praying the doctor will prescribe more. Did  you ask for another prescription?

    my mum has oesophageal cancer that has spread widely. 

  • Hi

    I understand this post was some months ago, and your loved ones story will  have moved on, but can I ask What did happen after steroids were stopped?  It seems almost cruel to give the patient and the family a glimpse of what was, to then knowingly take it away again

    My husbands lung cancer has spread very agressivly and he was given steroids last week to help with the side effects of the spread. He's had a fab few days eating well, no mucus, still issues breathing but the lack of mucus and the eating is just great to see.  Even went to Sundday lunch!!   I'm already starting to worry that its all a sham and next week he'll be bad again, or even worse

    Apologies if making you relive this is too hard  xx

  • Hi Snoopy - I find myself in the same situation right now re. the steriods with my dad. He's improving enough that we hope he comes out of hospital soon and into hospice or our care - although this won't change his prognosis of having weeks left. 

    I feel like I am grieving before he's even passed away. I have never known heartbreak like this - it's terrifying. 

    How did you husband get on? x

  • Hi Jofra

    It is like grieving before they are gone,  and it's awful

    We don't know how long Pete has, other than     its rapid      which means nowt!    Hes still working his IT job at home each day but is only able to do a few steps at a time 

    Stairlift being installed this week.     Down to one steroid now so waiting to see if that has any big effect but not so far, he's still full of beans in the morning! 

    Sorry your dad only has weeks   When will they decide on leaving hospital?     

     

    Snoops

  • Hi Snoopy 

    I hope your husband is doing ok and the stair lift was sucessfully installed. It's good that he is still mobile. How has he been with the reduced steriods? Still full of beans I hope. 

    My dad will be coming out of hospital early next week, they've just reduced his steriods so waiting to see what happens. It doesn't help that he feels extremely low (which is understandable) and I wonder how much this will increase any deterioration. 

    Life can be so cruel!

    Jofra x