Hi all,
I have had the above condition since 17.12.2012 and want to draw people’s attention to it.
I spent the best part of 2012 in and out of A&E with debilitating headaches only to be fobbed off with “it’s just migraines .” Eventually we got a scan and the results were in - a mass had been found in the front right hand side temporal lobe - I think.
Anyway, I had surgery and the doctors removed as much of it as possible. No radiotherapy as I was considered too ill at the time for it. When I’d recovered a bit, they put me on a full strength course of temozolomide for the next eight years.
It wasn’t until my old NO retired that a new one came in and really did me a favour - instead of keeping me on the TMZ, he took me off it and hey presto! Another area of interest was found in the periphery of the original.
So surgery, radiotherapy and chemotherapy (PCV) of which I have a further two cycles left.
What made me write this? If you get a GBM4 diagnosis just ask for a second opinion - apparently about 15% of all TMZ dx’s are misdiagnoses - I was lucky, mine was within the 15%. You never know, yours might be too.
Wishing you all the luck in the world,
Stu.
