MRI shows a ‘marked improvement’ and responding to treatment

Hi Jacqui79,

I am so sorry to hear your husband is so poorly. 

My husband was given stronger cortisone when he was in more pain or had less movement in his arm and leg. 

2mg  dexamethasone sounds quite low. The Dr and palliative cares nurses would up the dose to 12mg, then 8mg and downwards when he was bad 

. He had to take Septrin as his defences were lower and he was on cortisone for several months 

It helped the pain but does make you more emotional so he didn't like them but I see in retrospect it kept some symptoms at bay. 

I had an older friend who had more experience of cancer and she said whatever happens a person with cancer should not need to suffer pain as there is medication to help.

Can you get any home visit from the Dr or nurse so they can advise?

I think it's all so complex as there is the tumour and surrounding area which if swollen also complicates so could be a reason why your husband isn't visibly any better even though they say the tumour is responding

I hope you can get some home medical visit soon for more support as I am just commenting from  our experience and I am. not a Dr.

(Details of my husband's illness experience are in my profile.) 

Hi Jacqui70

sorry to hear about all that you are going through. Your husband's CNS or doctor would be the one best placed to advise on how this are going. Everyone here is unique and these tumours impact people in so many different ways.

My husband was diagnosed with his GBM4 in Sept 2020 and things remained fairly stable until Sept this year when a new growth area was identified. When we saw the oncologist in Nov, it was actually two new active tumour areas plus two potential areas. I asked him what I needed to watch out for and he said  fatigue and physical weakness on the one side (in my husband's case the right) plus the usual nausea, headaches and seizures.

if you can't speak to the CNS perhaps you can reach out via your GP for further guidance. There is also the Ask an Expert section on here and the helpline for further support.

Hope you get some reassurances soon. This is a scary emotional rollercoaster ride.

Please take care of yourself too here. 

love n hugs

Wee Me xx

Thank you. You’re right. This whole situation is complex and relentless. 

Thank you. I will contact the helpline tomorrow and hopefully they can explain the contradiction  between the scan and how he is feeling