Hi everyone ,
My dear beloved mum has today opted for whole head radiation . Im now concerned it’s prolonging the inevitable and to succumb sooner would be a release . Mums had two recent surgery’s , which she coped with incredibly well. , But sadly within two months the brain has developed two tumours and multiple dots .
Since presenting with a brain haemorrhage her speech has returned , she’s very very tired . There’s a delay with response to a conversation and she doesn’t remember where her every day items are . However she can complete crosswords and use her iPad and phone . She’s 78 , she already has mobility issues .
Dexamethasone was on 6mg and Mum was very quiet and general malaise .
Shes now down to 4mg . The oncologist said the steroids should be helping mun with energy levels . So I guess it’s the sarcoma that’s causing it already. She was only diagnosed 18 days ago …
The oncologist was at a loss as she was shocked mum has dropped so fast after such a strong fast recovery’s for two separate surgeries . A mastectomy and a lung lobe removed .
Any advice wound be grateful .regarding full head radio therapy and also dexamethasone side effects
many thanks .
Hi Lisanne
a warm welcome to the group. So sorry to hear about your mum.
My experience is of supporting my husband with his stage 4 glioblastoma and so there's a limited amount I can answer here. He was on dexamethasone for a while. I can;t say we noticed it altering his energy levels but it did alter his mood. He was a tad bad tempered while taking it. He did take it upon himself to stop taking it without telling me. He was binning the pills instead of taking them laterally. When his CNS found out (yes I told tales on him) she gave him a right "mummy" lecture as its dangerous to come off it too quick and he could have caused organ damage.
If you have concerns though, talk to your mum's medical team. It helps to write the questions down as they come to you. Take those notes with you to the appointments and it'll help to keep you on track. It's so easy to feel overwhelmed at these appointments
His experience of radiotherapy was targeted and not whole head radiation. He tolerated it well. At the time it was combined with oral chemo over a 6 week period and he did become really fatigued by about week 4. That fatigue lasted about a month after the treatment cycle finished. He did initially seem more confused while going through the 6 weeks of treatment but that cleared once he'd recovered from it.
I hear what you say about prolonging the inevitable. That's exactly what he was doing and now has said he wishes he'd taken a different approach. He declined all further treatment after the 6 weeks. He was only 50 when he was diagnosed in Sept 2020 and the diagnosis in his case was terminal from the start. That said, he's still physically very fit. His symptoms are all mental and are now similar to early stage dementia. It's so hard to watch.
I hope this has helped a little. This group is a safe supportive space so I'm sure someone with more experience will be along shortly to lend their support. Please reach out anytime though as there's always someone around to listen who gets it, someone to hold your hand and someone to offer that virtual hug when its needed
It’s always good to talk so please remember you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
For now though I'm sending you a huge virtual hug. Stay strong.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
