Latest MRI shows little change

The tumours have hardly grown since the last MRI three months ago
So that's six months now of negligible growth :)

Still loads of side effect which I have all sorts of meds and creams to mitigate but I can live with that if the tumour stays stable

Reveal Linq loop recorder

They have fitted a loop recorder in my chest to monitor my heart
They aim to be investing reasons as to why I had the stroke

This PDF link tell you all about it

https://www.guysandstthomas.nhs.uk/resources/patient-information/cardiovascular/implantable-loop-recorder.pdf

MRI Results from CUH

Received a call from my Oncology Dr.  Size of tumour are stable 14 x10mm and 43 x 25mm
The other area they check is still dormant
So good news there has been no growth since the last scan so the Afatinib trial I am on seems to be stopping the tumour growth at the moment

MRI time again

I have just had an MRI @ CUH. My normal 3 month check up - Will get results in a week or so
I also will be having an MRI and a CT scan on the 22nd @ UCLH
I will be starting month 4 of the Afatinib trial
Depending on the outcome of this MRI they will decided if I can continue with the trial

Drug trial - Afatinib @ UCLH

I have started a drugs trial @ UCLH (University College London Hospitals)

The drug is called Afatinib the link will give all the drug detail and this link Drug Trial has all the specifics of the trial

I went to the hospital yesterday to have blood tests and checks to confirm final qualification after my previous MRI and CT scans

Today I was back at the hospital to start cycle 1
Each cycle is 28 days
after 3 cycles they will review MRI to see it there has been any effect

Its been a busy few weeks of hospital appointments

9th. UCLH. Meeting to find out all about the Afatinib trial
13th. UCLH for a CT scan for Afatinib trial
14th. CUH for a Endocrine department for a synacthen test (a check up due to having radiaton previously near my pituitary)
14th. Later on in they day they fitted a 24hr ambulatory heart monitor (Stroke investigations)
15th. CUH return ambulatory heart monitor (Stroke investigations)
16th. CUH for Echocardiogram (bubble) (Stroke investigations)
20th. UCLH for MRI scan for Afatinib trial

Follow the links for more info on the various tests

UCLH = University College London Hospital (various sites in London)
CUH = Cambridge University Hospital (Addenbrookes)

MRI Results from CUH

MRI Results from CUH May 2019

Tumour size 14 x 10mm and 44 x 25mm the third area no sign of any growth

It's been a year

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

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

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

Infarct

I received a phone call from my oncologist to tell me they have found something in my head when reviewing my scans. A 15mm Infarct - they had already been in touch with my local doctor and there were pills awiting me there
I could not really understand what it all meant - she advised a letter was heading my way and I would need some tests done

MRI Results from CUH

MRI Results from CUH Feb 2019

Tumour size 14 x 10mm and 39 x 23mm the third area no sign of any growth