Mixed response.

Thursday is testicles and prostates day - so ofcourse the clinic was packed.  In fact it was pandemonium when I arrived at 11am.  There was a sign flashing informing us that Dr Ps clinic was already running 45 mins late.

Again I was the only woman there, apart from the wives accompanying the various testicles and prostates.

First things first - a blood test.  The nurse, who I know fairly well by now - she has struggled with my veins on numerous ocassions - took one look at the puncture wounds on my arms and hands and said 'What prat did this?' in her glorious South African accent - which made me burst out laughing.  Within 2 minutes and at the first attempt she had a needle in a tiny vein in my hand and was filling the vials.  What a star she is.

Then we settled down to wait....and wait and wait.  Its not Dr Ps fault.  The appointments get filled so quickly and anyone on Chemo or Sutent is classed as a 'Walk In' - ie... they have to be seen that day so are put on the end of the very long list.

Eventually we were called in.  To be told by Dr P that my CT scan results wernt on the computer yet as his secretary was off sick.  And I burst into tears.  I had built myself up for this moment, worried myself sick over the past few days, so it was all a bit much to be told the results wernt there.  Dr P said not to worry, he would get them faxed through if we didnt mind waiting.  So sniffling and grasping a handful of tissues given to me by a kind male nurse we returned to wait yet again.

It was about an hour later we were called back in.

Its funny how you can tell by the look on a doctors face whether your results are good or bad before they say a word.  And mine wernt good.  A couple of my tumours had shrunk slightly.  Others were more or less the same.  But the big ones, the lymph node in my armpit and the one next to my breast, have grown.  Considerably.  By about 1.5cm which is a lot.

How bloody typical of me.  Its like IL2 all over again.  A partial response.  Or a 'mixed response' as the report said in conclusion.  And thats simply not good enough.

I have to admit it came as a complete bombshell.  I was quietly confident that Sutent was working well judging by the lump next to my nose, now gone, and the lump on my head, a bit smaller.  But ofcourse these tumours arnt the ones that will eventually kill me, they arnt really important in the scheme of things.

So now what?

What options do I have left?

I can stay on Sutent and have just a weeks break, due to the agressiveness of my disease now, between cycles.  Give it another month and see how things go.

I could have radiotherapy on the tumours under my armpit - but kidney cancer rarely responds to it and it can make you pretty ill.

Or I could try a drug called Nexavar - it doesnt have such a good overall sucess rate as Sutent - I would have to apply for funding for it - and the side effects are generally worse.

We discussed it at length with Dr P. and because Im still generally 'well' Im sticking with Sutent for the time being.  For another month at least.  But if by then there arnt any signs of either stability (no growth) or shrinkage I will have to be taken off it.  I wont get further funding.  Which makes perfect sense, its an expensive drug and if its not working theres no point in funding it.

So how do I feel?

Pretty pissed off to be honest !

Dreadfully disappointed.

And more than a little frightened now it seems time really is short for me.  Im not scared of dying, thats been on the cards for a long time now.  But I am scared of my disease suddenly 'taking over' and the downward spiral that will follow.  Right now I still feel as if Im in charge - but for how much longer?