Glioblastoma -Stage 4

Good evening, 

I am hoping someone could give me a bit of advice about stage 4 glioblastoma.

 

My lovely mum was diagnosed with having a stroke at the beginning of the year, due to a previous brain haemorrhage she was unable to have an MRI and her symptoms worsened. She was then diagnosed as having a tumour and was given a biopsy which resulted in her being readmitted to hospital as she had a reaction/swelling following the biopsy. 
 

This happened three weeks ago, and she was diagnosed with stage 4 glioblastoma- and given three months to live which is devastating news for us. She was discharged home and is now under the care of the palliative care team who are fantastic. She has been on 16mg of dexamethasone for the last three weeks, and has been very confused and anxious about not being able to remember things. Due to the length of time on the high dose of steroids, we have been informed today they want to start reducing it to 12mg from tomorrow. 
 

I just wondered the reducing of steroids will result in a fast decline in her health, as I am trying to prepare myself for how difficult the next few weeks and months will be. It is already as though she has what I can only describe as dementia like symptoms and the decline we have already seen since the biopsy three weeks ago is fast. 
 

I would really appreciate any advice anyone could give me on what effect reducing steroids does.

 

Thank you. 

  • Hi Km,

    I am deaply sorry to read about your Mum. It's such a devastating illness. 
    Unfortunately my Passed away in September from this illness he was 62, we looked after him at home.

    I cannot comment on the Medication question but my Dad lost his short term memory which at the start was completely devastating and upsetting, he actually forgot about his illness and we decided we wouldn't tell him anymore. As time went on he actually forgot that he was forgetting so it no longer upset him or in a way us either,( if that makes sense) it was when he was aware of it it was tough. The doctors were right with their timeline prediction on when dad would pass away.

    I was so frightened of what was to come, take comfort in that there is was no pain, and we could keep him happy at home. I remember thinking of lots of things that might happen and when it does it's not as scary as you might think. Take each day as it comes, play your mums favourite music and talk about the good times. 
     

    Happy to answer anything if I can. Best wishes Sarah