Grade 4 Glioblastoma

[RobN]

After 12 months of not feeling right and an initial diagnosis of a Cavernoma it took a seizure to realise there was something more serious than a Cavernoma on the brain, surgery within days of the seizure revealed the Cavernoma was actually part of a tumour growing in another part of the brain whereby a biopsy was taken and sent around the world for molecular testing as it was found to contain an NTRK gene fusion and diagnosed as a Grade 4 Glioblastoma (not ideal but "it is what it is"). Fortunately for me this provided more options for treatment and we are now 4 months into a targeted therapy drug and bi-monthly MRI's with one coming up in 3 weeks so scanxiety is starting to kick in. Biggest challenge for the past 5 weeks is getting the balance of anti seizure medication right with 5 seizures in 2025 so far.

[joseph_CCNSW]

Hi RobN.  Hello and thank you for joining and posting here. This forum is a wonderful space and hopefully you will find care and support from others who share their experience.  You may also find it helpful to search Cancer Council NSW's  website or to call Cancer Council's 13 11 20 line for information on dietary options. They can also talk with you about the range of services available to support you.   Kind regards ... Joseph_CCNSW

[Cindi54]

Hi @RobN ,

I answered another post of yours just then on another part of this forum, but I see now you ARE on treatment, oh I hope so much that your next MRI shows the tx ( treatment) is working.

I can also imagine it'd be hard balancing the anti seizure meds.

Please keep up the posts,

thinking of you and sending positive thoughts your way,

Cindi xo