Hope

Hello dear people - just a little update about how things have been going. On Tuesday, nearly 3 weeks after the initial referral to Leeds, we got a short phone call from David's consultant's nurse, saying that they'd got a fax back from Leeds, and, no go. York will not provide any further treatment. Not giving any reason. Her suggestion was that maybe I should just keep looking on the internet...????? Which I never stop doing. In the last few days I've found a new mRCC drug - well, new to me, that is! (specifically targeted at people who are either intolerant of Sutent, or who it hasn't worked on - ie, D - the drug is Everolimus) which was launched in the UK on September 16th, that the folks at York hadn't heard of, plus an Open Access Study into it going on in 9 different hospitals in the UK I emailed a professor at the Christie Hospital in Manchester yesterday, with all D's details, and D rang his personal secretary this am - she thinks it looks very likely he will be suitable for inclusion in the  study, PLUS she asked if he wanted a second opinion from this guy anyway. We'll probably have to get a referral from someone, but she thought that the GP might do. He is at the absolute forefront of kidney cancer research in Britain, and the Christie is apparently Europe's biggest cancer centre!! You would think that the consultant at York could have thought of this???? And I wonder what else is out there that I haven't managed to turn up yet, too. When I asked the specialist nurse on Monday how we went about getting a second opinion or a referral, she didn't even know! Is this because people are just yes sir, no sir, ok, now I'll lie down and die, when faced with the men in white coats??? I think that Mr Urwin, D's consultant, has seen him as a lost cause from the beginning, and that this has coloured his treatment of the case. A book that D and I have been reading talks about exceptional patients - it's all in your attitude, and I think it's the same for the caregivers. I have been so so furious, but I know it's wasted energy. Anyway, it seems that things are looking up, and we are keeping on going! Apologies if this is a bit of a rant! I'm at work at this minute - but just wanted to share this.  Hope is a most wonderful thing x x x x x