Update

MRI scans Sep 24, Jan 25, Apr 25, Jul 25
All have showed stable appearance even without any treatment

I have also felt very well and have had a hugely improved quality of life over the past yr or so

I have also been able to reduced pain drug intake considerably 

So the Pemetrexed chemotherapy has damaged my kidney but has also reduced and stopped the tumour growth for a long time

This below was my original post that I put up left here Just for info 

Can't believe how long it is since I last posted

A fair bit has changed since then

I have been on a drug or at least I was on a drug for about eight months which has had a good effect at stopping tumour growth. Unfortunately the drug did some damage to my kidneys so I had to stop.
Even so since stopping almost a year ago, there has been no further growth so far

So when you consider that I was told that no further treatment was possible, having knowledge and info on what's going on in the world of Chordoma made a huge difference
I was able to get them to look at other options and refer me to the oncology department.
I requested a specific drug which has clearly helped, albeit with it causing other issues

Waiting for my next scan in October and fingers crossed there's still no further growth