Steroid Nightmare

Hi everyone,

My mum's a stage 4 melanoma patient. She had a positive scan in late January showing that all the tumours in her body and brain had reduced in size, then four days later she was given an emergency scan which showed that she had severe inflammation in the brain. Her oncologist mistook this for a new brain tumour at first and we had an appalling weekend thinking the worse, then three days later we found out it was actually an old tumour that had been gamma knifed and was now reacting badly to treatment. We've been told by my mum's oncologist and the specialist gamma knife team that they're pretty confident this is just treatment related side effects.

I was wondering if anyone has had any experience of being on a high dose of steroids and how it made them feel. My mum was put on 16mg of Dexamethasone at the start of Feb; she then reduced over a couple of weeks to 8mg, then had to go back up to 10mg because of increased side effects. We've had to go into the assessment unit literally every week of February for one thing or another. First, just because she had a generally bad feeling and thought she'd lost weight - she hadn't lost weight and they said the feeling was just steroids. Next week Mum thought she had steroid induced diabetes - she actually was just really dehydrated and they gave her a fluid bag and sent her away. Next time it was a cough she's had for a couple of weeks and feeling spaced out in her head - they gave her antibiotics and told her not to worry. Today we've gone in because she started having muscle spasms in her hands - this time she's dehydrated again, and all her electrolytes are off so they've adjusted her medication, but they think it might be just because she had immunotherapy on Wednesday.

It's so difficult to know what is the effects of inflammation vs steroids, my mum's mental health which is just dreadful, or potentially the cancer progressing again. Her current symptoms are: spaced out feeling, weak legs, chesty cough, some mild dizziness, muscle twitching feeling in hands (that's only been two days), increased urination, increased appetite, poor sleep, swollen face and swollen ankles.

It's so awful seeing my mum going through what she is, and at this point I'm not sure what to do. I don't know whether I should push them to scan her again to put her mind at ease - her last MRI was four weeks ago and her last CT on her body was eight weeks ago.

Sorry for this very long post. If anyone has had any similar experiences on these steroids it would be so helpful to know, just so I could maybe set Mum's mind at ease.

Thanks