Friday, 28 September 2007

That little magic word....


Its not a word used very often in regards to advanced kidney cancer - except in the phrase 'Im sorry but there is no cure'

So when you see it in relation to any particular treatment you grab at it desperately, convinced that you WILL be the one to benefit from this 'cure'.  That all will be well.  That the nasty treatment will be worth it because you will be 'cured'.

Last night I had a hefty dose of reality.  HDInterleukin2, which seemed to offer me the hope of a cure, it seems is unsuitable for me.  For quite a few reasons.  The main one being that my cancer histopathy has changed from a Grade 2 to a Grade 4.  Which is the most aggressive and unlikely to respond to IL2.

Even in those who are suitable candidates for IL2 the 'cure' rate is only 4% - a lot less than I thought and the same as the death rate from the treatment itself.  Dr P was so kind as he explained this to me.  He said he would ask Prof Hawkins at Christies (the real expert in IL2 apparently) for his opinion, but realistically it wasnt an option.  It wouldnt work.

So....what are we left with?  Dr P said I need to start some kind of treatment urgently and advised we apply for funding for Sutent now.  Well, Monday.  Which he is going to do.  He was quite optimistic about my getting it, my PCT has already agreed to fund it in 4 cases so that bodes well.

But, ofcourse, its not a cure.  Its a stabiliser.  Which has a 63% chance of working.  And could possibly extend my life for up to 2 years.  Without any treatment at all it seems we are talking in months. 

So thats that.  No more talk of 'cures'. 

Sutent has some quite unpleasant side effects of its own, and you have to take it for the rest of your life - which means until it stops working, which apparently it does eventually.  If it works in the first place !

Can you tell Im a bit depressed about all this?.....haha

It could be much worse though.  There is a blanket ban on funding Sutent for patients in Warwick, and many other places in the UK so I should consider myself lucky I should get it as a 1st line treatment.

Im going back to see Dr P the week after next at the QE as an NHS patient - THAT will be a shock !  As kidney cancer is a rare cancer we are lumped in with his testicular cancer clinic - hopefully there is little chanceof me being confused with another patient there !  By that time the application will be in and its just a matter of waiting, and it could take up to a couple of months.  If thats the case then we have decided to pay for the first couple of courses rather than risk waiting.  The rate Im producing tumours right now I just dont have the time to wait.

The PCT (Primary Care Trust) is in fact a kind of committee.  They make business and financial decisions and can you believe not ONE of them is a Clinician??  Not ONE doctor.  And these are the people we have to depend on for funding decisions of this kind.  To be allowed funding for Sutent you have to prove you are an 'exceptional case'  Sutent is routinely prescribed in the US, all over Europe and even in countries such as Mexico and Argentina - what the hell are we playing at here in the UK?  Dr P should have been able to write me a prescription there and then last night.  Instead we have to go cap in hand, begging, to a committee of bloody business men and accountants.

The whole situation is disgusting and needs changing NOW.  Sutent is an approved and licensed drug - its not some experimental treatment.  And more to the point it is the only treatment that routinely works.  How can they deny patients access to it?

So....last night was a bit of a blow in one way, but all is not lost.  2 years may not seem very long to a lot of people but just watch how much I can cram into it !  Brazil at Xmas (which would have been unthinkable on IL2) and ofcourse back to Oz as soon as possible.  And Ive always wanted to go to China.....



dreamyriver said...

Oh bloody hell, Sprite - I can only imagine how you must be feeling this morning, and words from me just seem inadequate.

Thinking of you all xxx

spriteverdixx said...

I allowed myself to get my hopes up Dreamy - only natural I guess in the circumstances.  Last night I was pretty despondant to be honest - but now I have to focus on getting Sutent and remaining positive.  For who knows what may come along in the next couple of years?  Maybe that elusive 'cure' !

mentor4wealth65 said...


this is a beautiful, raw, dignified, funny blog. I read it with tears in my eyes. I hope you get your healing - you are clearly an exceptional human being.


mentor4wealth65 said...


this is a beautiful, raw, dignified, funny blog. I read it with tears in my eyes. I hope you get your healing - you are clearly an exceptional human being.


wiltshirenutty said...


Who wouldn't get their hopes up? I know I'd be clutching at whatever straws I could find. I also know that like you, I'd be fighting with as much vigour as I can muster either for my own benefit or for those patients who will follow on in the months and years to come. You're such an inspiration to us all....

love and gentle hugs,

Diane xxxxxx

voluptuousvan1ty said...

What's the latest news, Sprite?

How can we help? More petitioning needed?

Love and hugs