[Juls]

Hi Andi
Thanks for your reply.

As you know I was not happy with decision (re Xeloda & Zometa) last year when bone met found & told Onc so. I felt the decision was made without me being included & I was never 100% that Xeloda was right for me! I felt that as I am high Er+ & Pr+ that this was not being treated -Xeloda and an AI can't be given together (I did take it for 12 months. Liver met re-grew in same place over last 11 weeks.) It was just a gut reaction it wasn't right for me. I know it works for many others. They offered nothing else and I felt I had no option but to take it.
Yet here I am again - walking into ward 3 weeks ago unaware CT showed progression & not knowing that they had already had a meeting regarding my treatment. Nurse looking uncomfortable and telling me she didn't know whether to call and tell me over the phone priot to my appt. because we had never discussed protocol. Rubbish - she has called numerous times! This trial was only option given. Yes - I did ask for other options! Both Oncologists saying that this is best option. My current Onc mentioned an AI to tide me over until after my Daughters wedding and then they would look at me again (Guessing it would be another chemo) but trial would then be closed..This trial includes Kadcyla and this is only way to get it here. Apparently the drugs available in my area are getting less and less mainly due to cost. Even if they apply to Health Board for Kadcyla outwith trial I have a 99% chance of not getting it. So seems pointless.
I got a call today re Ct and Echo - got appt. for tomorrow 1st thing. Got them to add on blood tests as well to save a double journey. Doesn't look like I will start this week - more likely next Thursday. If I don't carry this PD ligand(?) not sure what will happen.

This Phase 2 trial is only allowing about 200 worldwide & it closes in a few weeks. If I do any kind of treatment (AI,Ablation,chemo etc.) or if I delay I am excluded. So between a rock and a hard place!!"
Trial is an immunotherapy drug ( 2 in 3 chance of getting it) and Kadcyla ( all patients get it)
Will update when I get any other info.
Re - Biopsy - not needed at moment for trial. I asked for ablation but told no as I would be excluded from trial plus new Onc. doesn't believe in ablation.
Is it just me!!
Juls