A lot of fellow patients, further down the 'Sutent path' than I, have told me that the side effects of sore mouth/hands/feet wear off after a few cycles. And its true, for me anyway. Im now in cycle 5 and my mouth, hands and feet are much improved. The upset tummy/bloated/tiredness is the same but maybe Im getting used to this now as Ive found this month quite tolerable.
The 'horn' on my head is almost flat now, the lumps under my arm pit are definitely no bigger and Ive had no pain from it at all for several weeks. And most importantly I feel well - and I look well. So all in all things are going well - I think ! I shall have to wait for my next CT scan, due any day, for confirmation of this.
The battle against NICE and its appalling preliminary report continues. The press, media and public support is as strong as ever and the story is still being reported. Which is so important, we cant afford to allow this to be dropped, especially when NICE are publishing blatantly false information.
I would like to grab one of the 'suits' from this government body by his scrawny neck and drag him home to meet my family. To meet my husband and my children. To see how happy we are and how invaluable this 'extra time' I have been given is. I would like him to explain to Edward, my little ray of sunshine, who refuses to be upset about the future while Mum is here and well and able to do things, why other Mums and Dads wont be given this chance.
I would like him to explain to all of us how this decision was reached based on a flawed formulae and false information.
I would like him to tell me to my face that Sutent only improves life expectancy by a 'few weeks' and the quality of that life is poor (as one ill informed member of NICE stated) while he watches me chase my 3 year old grand daughter round the garden.
And then I would like to slap his silly face and tell him to stop playing God with peoples lives, and do the job he was originally employed to do - assess the EFFECTIVENESS of these drugs - properly.
NICE as a body seem to know the cost of everything - but the value of nothing.