I haven't been active on this site for a while - things with my husbands GBM have been challenging but manageable. Three weeks ago he began having seizures & since then downhill rapidly (he was diagnosed in April 2010) The dilemma now is the time has come to use Avastin. Given its a high cost drug we are appealing to our health insurance company as to whether they will fund as we have been indicated at $4800 per dose of which there are 2 doses monthly. The doctor mentioned that the drug company may cover costs if we get to dose 4 - gosh what do people do if they can't afford it ? Would be very grateful for fellow members to share their view ... View more

Hello friends in the great CC forum. Just looking for some info if any one has experienced something similar or even just opinions :-) I know we (myself being the partner) don't have the medical degrees so I am not backward in coming forward with questions when I see our specialist with my husband. Since diagnosis, I have maintained a medical record for our GBM journey. Part of these records are MRI written reports. We are currently having MRIs completed every 12 weeks and the last few have remained 'stable' - all great news as in our case it seems the chemo is doing the job it is meant to for the moment. For whatever reason I was flicking through theses reports recently and happened to compare the last 2 - February & May, where report had been listed as stable. What I don't understand is that the diameter of the tumour in May has increased on the size reported on in February - to me this is not 'stable' as it has obviously changed ! I have tried to process my thinking , maybe the scans were looked at at different depths, but if so, how can they be compared ???? Also maybe a different person was responsible for reports - but no, same doctor, same imaging centre ???? This is really puzzling me and I will bring it up with our oncologist when I see him in the next few weeks. I look at my husband and he is coping - small steps every day but he is also slowly just finding everything that little bit more challenging. It is often so hard to see this when you are with a person everyday though as Im sure many of you understand. At least the fight is still happening for now 🙂 ... View more

Coming across this website has been one of the great positives in this cancer journey - in so many ways it just helps, so thank you to all who are part of it. I just wonder where life will lead at times , but as I sit here typing , things seem ok in our world at this moment. David, my husband, has just passed his 2 year anniversary of GBM4 diagnosis. 'Yes' our lives have changed, 'yes' he has changed - but then again so have I probably ! We have just enjoyed a great two weeks away in the sunshine - but always lurking in the background is the tumour. Some days I just think I can't stand another moment and others it all just becomes routine - and thats from the carers perspective - I still can't imagine how he is coping with it all. But like everyone here , I just on on with it and so does he. ... View more