Thursday, 19 June 2008

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?



jeadie05 said...

I pray you can stay in charge for alot longer ,your courage is admirable but of course these are only words ,I cant begin to imagine how you are really feeling ,I think of you often ,and pray Jan xx

shrbrisc said...

I am keeping you in my prayers and I wish there was more I could say or do unfortnately there isn't

momiscool2 said...

I am keeping you in my thoughts and  prayers daily.

I wish there was more i oculd do for you!



cayasm said...

How terribly disappointing for you, however you have another month, to make some inroads, you have fought so hard thus far, and I cannot even imagine what you must be feeling, I can only offer my prayers for you, and keep sending positive thoughts your way.

Take care


infectiia said...

i dont really know what to say apart from keep your chin up!  Your positive mental attitude has done you wonders so far so dont go giving up now, it makes a huge difference in keeping that downward spiral at bay.  Good luck with the next lot of treatment cos theres always the chance that you might get the signs of stability you need to be kept on it.   xx

larryzzzz said...

Poor Sprite : another body blow after what must seem like a month of them. That u feel so `healthy` most of the time is almost crueller than having the bloody disease itself..

My advice to you, for what it`s worth, would be this..u have fretted enough time away worrying about what the next best course of action should now use every second u have doing  whatever  it is that  u love, that makes u  & ur family happy,live for the absolute moment.

Your days may be short, but judging by the kind of star u seem to be, they`ll be memorable !!  My very best wishes x

sybilsybil45 said...

As you so rightly said in your previous entry..shit shit shit...there I have said it again and again !!  What a blow when you are feeling so well at the moment..Of course there is no way on earth that I can say I know how you feel as no one can say that, as we are all individuals and react differently.  I know from what I have been reading that you are a strong woman and will keep fighthing till everything has been tried and tried again !!  Now you just have to keep going , keep smiling, and above all keep looking forward, your cruise is coming up very soon now...Love for now   Sybil xx

pamal3 said...

Jane I could swear for Scotland right now. I have so many tears of anger and frustration. I have you tucked In all cosy In a special place In my heart and not even badass cancer can do anything about that. Please remember If you need to vent or chat I am right here for you. Love Pam xx

mortonlake said...

oh jane        im  sorry  love.     nothing  more  i can say,  i  really wish there  was.  you  have  one  HELL  of a cruise  girl.   keep positive.   take  care   always in my thoughts   love mort   xxx

tellsg said...

I'm sorry to hear that the results were so disappointing and hope that the Sutent really does kick in and show some improvement for you very soon.  A mixed response is better than no response to the drug at all.  I know its been a real kick in the teeth today and so stressful for you.  Thinking of you and sending you strength and hugs.  Tells x

funnyface0s0 said...

Hi Jane ........ news you didn't want to hear and we didn't want to read, so when 'the going gets tough - the tough get going' and that is exactly what you need to focus on now (as if you didn't know
My love and thoughts are with you - Jaynee X

cms8994 said...

Thinking of you xxx

faircolleen said...

Im so sorry that you are having to go through all of this.Im praying that you stay in charge for a long long time.You really do have a beautiful attitude .Hugs and best wishes to you and your family