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Steroids with terminal illness

Sadie0909
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I have searched high and low through the forum but cant find the answer to my question so was hoping i may find it here.

 

My Mum was diagnosed in February 19 of cancer of her oesophagus, spread to her liver and finally her lungs. We were told in September that she had three months and i feel that since she had that news she has gone down hill quite quickly. 

She has developed anaemia due to having chemo for 9 months (which i have been told is common) so she has been very tired and had a few blood transfusions. The blood seemed to perk her up for a week or two but then i noticed her getting very tired again. 

 

She has been given steroids which i feel have had zero affect on her. They have been upped twice now and she is now on 2mg 4 times per day (or can take all 4 tablets at once in the morning if need be) but again i feel like there has been no change in her. She has only been on the new dosage for one day so maybe i am being a bit premature in writing this.

 

I just read so many people raving about steroids saying they got their appetite back and some energy, i havnt seen this happen with my Mum. Is this because she is too close to dying and they just wont help her now? Is it becasue the dosage is too low still? Or is it because shes still anaemic and she needs another blood transfusion.

 

When i ask these questions the nurses seem to say the good old 'just see how she goes with this new dose' but i just cant understand why the steroids arent touching her.

 

I was wondering if anyone else had experienced something similar?

  • Offline

    Unfortunately my Mum didn't respond well to steroids either, they made her feel very ill and she refused them. 

    Lost my mum 9th August. Keep fighting for her. 

    Big hugs. 

  • Offline

    Hi Sadie,

    So sorry to read about your Mum. 

    I’m no expert, just a patient and son, but I do know that steroids have little impact on some people. I was given them late in my chemo treatment and they had no discernable effect but my Mam was given them a few weeks before she died and she did perk up noticeably. 

    The doctor who prescribed them probably thought they were more likely to do good than harm and it may take a while for any benefits from the higher dosage to kick in.

    Best wishes

    Dave

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    Hi Sadie, 

     

    I am in the same boat as you, my mum has the same cancer and has been told there is nothing further the doctors can do. Like you, I feel my mum has started to slip away since we got this news. My mum was on 5mg per day of steroids and until a couple of weeks ago, managed to get out and about quite well. The hospice nurse then wanted to wean her off the steroids as apparently they can have some side effects if people are on them too long. Since then, my mums appetite has faded and her energy levels have dropped considerably. Today we phoned the nurse and she suggested doubling the dosage again to see if that helps. Nothing seems urgent to them and that is really hard when it's us that have to see the ones we love without energy or unable to do the things they want to. How is your mum now? I'm really hoping that mine will notice a difference with the steroids as she desperately just wants to feel better and get a little bit of normality, especially because I am due my first baby in a few weeks. I now it's killing my mum to think she can't be there for us in the way she normally would and that is too much to even bear.

  • Offline in reply to Jrod1

    Hi Jrod1

    So sorry to hear you, your Mum and family are going through the same as us. It’s a horrific disease. 

    My Mum is currently in hospital at the moment as it turned out she had dangerously high calcium levels in her blood which they think is why she was basically comatose. She has since had plenty of drips and a drug called Bisphosphanate which will apparently assist the fluids in flushing out the excess calcium. I have noticed her appetite return after only a day which is great but she still seems quite sleepy to me. She is due to come out of the hospital today. 

    Has your Mum had a blood test recently? It may be worth checking in on her bloods to see if she is suffering with the same as my Mum. Remember, it’s  important the doctors don’t just write her off just because she has a terminal illness, you want to squeeze as much quality of life out as you can in these last few months. 

    My sister recently fell pregnant through IVF with her first child which we don’t think my Mum will ever see, so I understand the difficulties surrounding the pregnancy too.  Life can be so very cruel.

    Please feel free to message me anytime x

  • Offline in reply to davek

    Thank you Dave. It seems high calcium was the culprit so she’s having some fluids. Then hopefully the steroids may work. 

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