Hi All,
Don't post often now - but thought I'd let you all know it's 13 years today since Ted woke up one morning with a swollen abdomen whilst on holiday in Spain. After all the jokes about it being a bad prawn or beer - he got admitted to a Spanish hospital almost immediately and within a day or two, we were given the diagnosis of CML through a Norwegian interpreter. In the nicest possible way, we were informed he had 2-3 years of failing health to look forward to...........well I'm so pleased to tell you that was back in June 2001 and he's still here to tell the tale and touch wood, pretty well!
That same day, it was announced in the papers that Glivec was going to be available on the NHS in the UK - and we clung to that thought for the next year or so, on our return to the UK.
Back then you had to be on Interferon for at least a year before you became eligible for even being considered Glivec.....however he eventually started on 400mg, but nothing much happened with his PCR for a few years and then he was put on 800mg and his PCR finally got down to 0.4 ish after a couple of years. Reduced to 400mg and has been on it ever since. Hovering around 0.01 for the last few years and overall extremely well.
To all of you we'd say hang in there - Glivec is well documented now with plenty of long term evidence and soon coming off patent, other TKI's are coming though - hopefully the long term data will endorse them too, if you have to change to one of them. Also it's great that the various trials about stopping Glivec are also looking so positive for many.
OK so at 67, Ted is still biking and rocking - just the way we like it! Who'd have thought it back in 2001...............?
Best Wishes to you All
Bee
