In my case, a 'focal' seizure means only part of my body is affected. I remain fully conscious during seizures. They can last for anything from about 3 minutes to 8 minutes.
After a seizure my right side is more or less paralysed for quite some time, and each time one occurs, I end up with less mobility permanently. For this reason my right arm has been useless for most practical purposes, and my right leg joints are weakening rapidly.
Control of seizures is thus of paramount importance. They occurred 8-10 times a month until the use of Avastin began in September 2010, and since having been treated with this drug, there had been comparatively few seizures. The fewer the seizures, the better my chances of getting back the use of the right side of my body with remedial therapy while under Avastin treatment.
Avastin (bevacizumab) in Australia.
(Please note that things may be different in other parts of the world.)
Avastin is not a chemotherapy but works by starving a tumour of the blood supply for growth that it is extracting from the area close to the tumour, and is also an anti-inflammatory. It cannot kill the tumour and when the treatment stops then the effect is usually a sharp reinvigoration of the tumour.
The idea is to hope for genuine lift in quality of life for the period that the Avastin is being administered.
At the same time it can have bad side effects [immediate stroke, coronary, etc] and sliding into low quality of life, if any life at all. But in my case, initially combining two therapies [i.e., chemotherapy and Avastin, for which there is evidence of a good result] and taking some control could turn weeks into months of reasonable quality of life.
However, the good effects of the chemotherapy wore off quickly and in December 2010 chemotherapy was abandoned completely. Avastin is now administered by infusion (like intravenous chemotherapy) every three weeks.
I have been fortunate with Avastin in that the Benefit Night held in September 2010 raised two-thirds of the money required for four doses of Avastin, with a total cost of about $23,000. This allowed us to have subsequent doses free of charge from the manufacturers and distributers of the drug in Australia.
Had we to continue paying for the drug, the cost [November 2011] would have already climbed to over $100,000, which would have required some extremely difficult financial and moral decisions for me, as we could not have afforded to continue it.
Therefore, I would like to thank the manufacturers of Avastin, Roche, together with their local distributor, Fresenius Kabi, for their policy of making the drug available free of charge after payment of the first four treatments. For me, this was a life and death decision.
(Australia) It is now up to the APB's Committee which decides these matters to make it available for brain tumour patients at the same subsidised rate as for bowel cancer patients. Clearly it gives enormous quality of life advantage for brain tumour sufferers and I am (so far!) living testimony to the fact that it can work for highest risk brain tumour victims.
