Chemo nurse rang - Dr Tom says to start 26th October - 2 days before my birthday. I cried.
She rang back with 18th - he'd waited as I was going to see if I could get Avastin - but to get approval I have to apply to the PCT, possibly appeal if I fail, then apply to the govt fund. I don't have time for all that crap. Given Dr Tom himself is spouting the "it only gives you an extra 6-8 weeks life" what's the point? If that's what he really thinks. I mean does he think my life expectancy is SO short already that I'll want another 2 months at this stage. Surely there's no point in me having chemo now if I'm not going be around for another year or two? I'll be having more chemo, I can apply for Avastin for the next lot. He didn't even say he'd prescribe it - I don't know how to apply for it in the first place - I will obviously look into it but I think my diet is doing more good right now. I don't need the stress of applying for more drugs it's too bloody difficult to get the NICE approved ones.
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Awww Lisa, I really wish I could make things a bit better for you at the moment :-(
RE Avastin - in the US people are getting *apparently* years longer out of it, not weeks.
Definitely worth doing your own investigation/s into this.
Also, if you've got to apply for funding for Avastin talk to the Macmillan team who can guide you - it might be worth finding out if you need to start this process for future use, not necessarily for immediately now.
When's the Dublin trip and are you still going?
I actually did quite a bit of research on it - I went on local radio with all the facts the day NICE turned it down (have mp3 version I was quite proud of it). However my onco's view is 6 wks - so I don't know why he thought I should delay chemo to apply for it since we'd agreed I wanted to apply for next time given the time constraints, as you've also suggested. My sister was with me, she is equally puzzled by him having a different memory of what was said last time! I have a pathway of the process from BBC, just need to find if there are forms, or if it's just relevant letters from me and GP and/or Onco are sufficient. May ask a fellow patient who has been through this for SIRT for tips!
Dublin is paid for, weekend of 24th Oct. I'm just not up to it now, so with chemo in my system I can't see me going.
I'm more upset at the inconsistent urgency/non urgency of my treatment, and the waiting, trying not to wait, but live, because waiting is wasting time.
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