July Update
a few things to discuss this month, some good, some not so good.
I went back up to London this week to meet a neurologist who specialises in low grade gliomas. it was 10 hours on a train for a 10-15 minute meeting. thats not anybodies fault its just what we deal with our appointments because we chose london. my coccyx is still sore today from all that sitting.
so the discussion was to be about my genetics primarily but everything else came up in discussion too. he pointed out the area in my cavity in which he believes all the residual tumour is left. i knew that there would be some, but actually looking at it still there in my brain made a difference in my mind as to how real it all still is, because in between appointments i don't really think about brain cancer at all. i did all the research as to what i want to do about it as far as lifestyle changes goes and i have been doing it long enough now that they have become habit without really thinking about why i'm doing them.
we also talked about genetics, regarding my 10q deletion. or the PTEN gene as its more commonly known. he said loss of heterozygosity on the 10q gene is normally something associated with grade 4 brain tumours. there is little research done on 10q in low grade gliomas but that which has been done indicates a survival decrease over the norm. however, there isn't enough studies done for him to say that's the case for certain.
the last thing we discussed was the seizures i've been having which concluded with me increasing my keppra to 1500mg per day rather than 750mg, although i will increase the dose slowly over time.
Now onto the good news, thanks to Nevill Hall Radiology department i have booked a trip the to Arctic Circle this christmas :) we are going up the norweigan coast by boat up into the arctic circle, which i am very excited about, hopefully we will see the northern lights, but if not it will still be a very nice trip.
Hope you're all well.
I went back up to London this week to meet a neurologist who specialises in low grade gliomas. it was 10 hours on a train for a 10-15 minute meeting. thats not anybodies fault its just what we deal with our appointments because we chose london. my coccyx is still sore today from all that sitting.
so the discussion was to be about my genetics primarily but everything else came up in discussion too. he pointed out the area in my cavity in which he believes all the residual tumour is left. i knew that there would be some, but actually looking at it still there in my brain made a difference in my mind as to how real it all still is, because in between appointments i don't really think about brain cancer at all. i did all the research as to what i want to do about it as far as lifestyle changes goes and i have been doing it long enough now that they have become habit without really thinking about why i'm doing them.
we also talked about genetics, regarding my 10q deletion. or the PTEN gene as its more commonly known. he said loss of heterozygosity on the 10q gene is normally something associated with grade 4 brain tumours. there is little research done on 10q in low grade gliomas but that which has been done indicates a survival decrease over the norm. however, there isn't enough studies done for him to say that's the case for certain.
the last thing we discussed was the seizures i've been having which concluded with me increasing my keppra to 1500mg per day rather than 750mg, although i will increase the dose slowly over time.
Now onto the good news, thanks to Nevill Hall Radiology department i have booked a trip the to Arctic Circle this christmas :) we are going up the norweigan coast by boat up into the arctic circle, which i am very excited about, hopefully we will see the northern lights, but if not it will still be a very nice trip.
Hope you're all well.
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