9th April hospital visit with my oncology Dr

The MRI show more growth 15mm in 3 months
There is slight compression of the spinal cord at c3

I have been told yet again that my outlook is poor. My Dr thinks that the currant treatments will not work.  He has no other treatment that he can think of that will benefit me

He has therefore as well as starting me on another drug he has referred me to the end of life team at our local hospice Arthur Rank Hospice. In his letter to be he found it difficult to give timeline's but wrote 6 to 12 months 

I was told all this before when I was under the skull base team - I had lots of ideas and possible interactions that I put to the team - a 3 page letter full of ideas - as a result I was transferred to the oncology team and was fortunate to have had a drug financed by the local hospital trust - this gave me a new lease of life 

Two and a half years later and this time I have nothing to offer that can be given to me in the UK

I have written to a few specialist's with the hope of being able to get drugs that are being used in the USA and are seemingly effective to some point - I have found no where in UK to get these drugs

Gemcitabine

 I started this chemotherapy drug today. 

There is not a huge amount of data on how effective this drug is
Hopefully it will do better than the last drug

For more info on drug click below
Gemcitabine

Nivolumab

 I started taking this immunotherapy drug last year about 3 months ago

MRI report of a few weeks ago reports a 15mm growth and more alarming its again pressing on the spinal chord

So the drug has had little or no effect on tumour control

This treatment is on trial with stereotactic radiosurgery (SRS) in USA
I could not find any UK way of having SRS with the Nivolumab so had to have the drug on its own 

My Dr tried to get Pembrolizumab a drug that has been recorded as beneficial to some chordoma patients
NHS England panel refused to allow it to be given to me.

I read the panel screening document detailing the refusal and it was for me impossible to understand their reason for refusal - The drug is very expensive - maybe that is the real reason !?

Nivolumab is a drug that acts a a tumour a bit like Pembrolizumab but as Pembrolizumab has shown to be more effective than Nivolumab it has not had as much research done on it

For more info on drug click below

Nivolumab