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 well 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
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