As Ian's website is now closed (thanks to David for providing & managing it for 8 months) I thought I should post on here where we are up to and why Wonky Knits is raising money to help people like Ian who have to fund their own treatment in the UK...
Ian has now been taking Sutent (Sunitinib) for his non-genetic "malignant phaeochromocytoma" since September 2009. He takes a 50mg tablet a day for 4 weeks then has a 2 week break. So far the CT scans have shown a reduction in numbers and size of the tumours in his lungs.
The side effects are tolerable; different but no worse than the side effects the other drugs he is taking to control his hormone levels (the tumours produce excessive amounts of adrenalin & various other hormones), blood pressure and pain.
We are hoping to get the application for funding in by the end of April 2010 and also hoping it will be agreed this time. We have evidence now that Sutent is working for Ian so we think Derbyshire County Primary Care Trust should fund it. It is expensive: £3610.00 every 6 weeks at his current dose but if he continues to improve the dose may be reduced so the drug will be cheaper or may be discontinued completely, hopefully along with all the other drugs he is taking. So we await the PCT's decision on how much a man's life is worth......
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