I have been meaning to update the blog for ages but never seem to get the inclination to do it
But today I am
Over a year since the last post
A lot has happened and I may at sometime backfill the blog
Over a year since the last post
A lot has happened and I may at sometime backfill the blog
Current Status
The tumour has been growing and is now near as big as it was when first discovered 6 years back
It's been growing at a rate of about 1mm a month. Now at around 23mm by 17 mm
It's effecting me a fair bit
General pain - both a bit of muscle pain as well as at he back of the head where the tumour is pressing against vital structures
I can control it to a certain degree with good head support and positioning
I need general pain killers when the need arises - this is generally on long days where I cannot relax or find somewhere I can sit and support my head
I have soft neck pillows all over the house and in the car to help when I need it
My tongue it very wonky. The tumour is pressing against the 12 cranial nerve (hypoglossal nerve) https://en.wikipedia.org/wiki/Hypoglossal_nerve causing tongue palsy and difficulty in eating
I also have speech issues - This happens when I do not position my head in such a place where I am not putting pressure on the nerve
I also get a weird tingle on the back of my head - It is an instant warning I am putting pressure on the nerve and I need to position myself differently
I am fatigued easily and whilst thankfully I can still walk no problem anything that involves bending or stretching or twisting causes me issues
Treatment
Here the big issue - I went for a second oncology and surgical opinion @ the UCLH National Hospital for Neurology and Neurosciences
They had nothing to offer me
No further radiation treatment - I have had the max amount already
No further surgery - Its was too dangerous - Although one surgeon would look at surgery when things get critical
Here the big issue - I went for a second oncology and surgical opinion @ the UCLH National Hospital for Neurology and Neurosciences
They had nothing to offer me
No further radiation treatment - I have had the max amount already
No further surgery - Its was too dangerous - Although one surgeon would look at surgery when things get critical
Now
I found info about a trial drug on the Chordoma foundation website and have asked if I can be part of the trial - As of today I am waiting to find out if I qualify
https://www.chordomafoundation.org/clinical-trials/afatinib-phase-2/
I am also back @ Addenbrookes hospital under my original surgeon and the new oncologist that came on board early this year
My surgeon has said he would be prepared to operate as an when needed
If I can get on this trial and this shrink the tumour a bit I can delay the need for surgery
