So I’m guessing some of you will know about Methylated and Unmethylated!
My question is (and yes I will ask my oncologist nurse tomorrow about my husbands diagnosis).
if it’s Unmethylated and chemo won’t react as well as someone who is methylated why do they continue with treatment? My guess is keep trying as everybody is different and responds different but also statistics show that that’s not always the case (maybe I read too much!)
Anyway I will ask tomorrow see what our nurse tells us.
thank you for reading even if it doesn’t make sense ( I’m all over the place)
HI jacjac74
That's a good question and one I struggled to get my head round when I was supporting G with his GBM journey.
I found this article that focuses on Glioblastoma but does explain the methylate/unmethylated bit within it
Glioblastoma Multiforme (GBM) | Treatment and Prognosis | Brain Tumour Research
It's also covered in this article too Biomarker tests | The Brain Tumour Charity
At the end of the day they best people to ask are your husband's medical team as they will be able explain his situation with better clarity.
I hope the appointment goes smoothly
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Thank you 
️
I’m sure I will get answers tomorrow, just really not sure what’s what right now, my heads all over the place!
that's totally understandable. Be gentle with yourself. It's all such a lot to process.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hello Wee me
when your darling husband was diagnosed, was he put into palliative care straight away, unfortunately they cannot remove the tumour with R as its bi frontal lateral,
i’m just trying to get my head around all this I know everyone’s different, R is doing ok walks with the dog and my son, walks with a stick due to having seizures but he’s seizures have calmed as his medication has been upped, I am taking day by day, they have also got a hospice nurse in but she comes every 3 weeks or when needed is this what your husband had? How did you cope? I’m looking into doing yoga and Art, I love crafting so I will most probably do that whilst I care for my husband.
thank you for reading 
HI
G wasn't moved to palliative care until the end of Feb 2023. For the first 2 years or so he remained under the care of the oncologist and had 3 monthly maintenance MRI scans with a follow up video appointment. Possibly partly due the pandemic conditions at the time, we never saw a doctor face to face from Sept 2020 until Nov 2022. Not ideal. When he was passed to the local palliative team it was scary but in hindsight it was the best thing that happened throughout the journey. It meant we had local support, a number I could call 24/7 if we needed help and most importantly we got to know both the community nurses and the local community hospice team. When the end of the journey was approaching it made a difficult time easier as we were surrounded by people we knew and who knew us. It's those little things that make a big difference.
You'll surprise yourself with how you cope. My key coping mechanism was journaling. I'm an indie-author so words are my thing but I found journaling to be a huge help, You can write out all that is worrying you/scaring you and somehow when you see the words down on paper it takes some of that fear/worry away. It's also a good way to vent. I have a journal where one page is entirely covered in the F word- that was a rough day! I practice yoga most days using YouTube classes. I also try to get out for a walk daily. A while back I wrote a few community blogs for MacMillan and a couple of them were on coping. Here's the links-
“I’m fine”: how do you really cope as a carer? - Macmillan Online Community
Coping with the last celebrations with your loved one - Macmillan Online Community
Please ask or PM me if there is anything else I can support you with here.
sending love and light and hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
