Astrocytoma grade 3 idh1 mutant cdkn 2a/2b deletion post op

  • 5 replies
  • 19 subscribers
  • 427 views

Hi I’ve put this in the welcome page but though I’d put it copied in here and my progress. 
Hi all, just a greeting and to see if there are any diagnosis similar to myself. I have a grade 3 astrocytoma cdkn2a/2b. I discovered or should I say symptoms began last year during covid.jan 2022. I woke up ( having only a mild covid sniffles) in the night for my ( I’m 46 ) mid night pee; and went to bed waking up 15 minutes later numb all down my left side and then began to /seizure fit. I was lucid/aware all through it. A and E visit was to be honest useless. Being diagnosed with influenza. So a second happened. I chose not to go to hospital from the experience as I did recover after a couple of hours. Then in my new job I had my 3rd seizure which I was taken again to AandE. They have a CT after much complaining where they found what they called an arachnid cyst (easy to remove they said but I’d have to wait until November 2022 for more information. I decided to go private which took a few weeks at spire to see a consultant. He said I’m afraid that’s a G2 tumour. I referred me straight away to Walton, in the mean time having 30 other focal seizures in my left arm and face ( I’ll explain more if anyone’s interested). So due to strikes and having a kidney stone 5mm and rushed surgery. I had my tumour out in jan 2023. Unfortunately only 60% was removed and it was diagnosed as a grade 3 strocytoma cdkn2a/2b. I have had radio therapy and am now on chemo tablets. So please ask anything as I’ve typed loads lol