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

A little bit of growth

I was concerned that the tumour may have had a growth spurt as they had seen no signs of any tumour after my scan 6 months ago 1 Sep 2017
Yet 3 months later 1st Nov 2017 all of a sudden I have 3 small areas of regrowth
Then shock news via a phone call from my new oncologist about a 11mm x 7mm area of concern
So from nothing to 11mm x 7mm is big growth
There is some evidence that Chordoma can get "angry" if interacted with to much which is a big concern

The good news is there is only a little growth in the smaller tumour the big bit seems stable

They are now waiting on the second opinion before deciding on a course of action
They anticipate doing something "soon"

There is still an OK margin from the tumour to my spinal cord

MRI number ?

I must have had over 20 now since this all began

They had a bit of trouble as always finding a vein

I see the doc 9th March for the results

I also have a confirmed appointment to see the London doc on the 19th March

First meeting with the new Oncologist

My CT results are OK

No sign of any Chordoma in any other areas which is excellent news

As for further treatment - That is all up in the air now - I am generally healthy physical although my mental state is somewhat on edge to say the least as well as the usual neck issues

I have been advised that as I am well they are not going to do anything in the next 3 months
This will be reviewed after the next MRI
Any treatment either surgery or Radiation could make me worse than I am at the moment

I have also requested a second opinion and will be referred to a London hospital

CT Scan

I have had a Head, Neck and chest CT scan done
Results next week

Full work load ! Wake up ! Where has the day gone !

I did not request a lower than normal workload. I thought I would be able to jump straight back in
How wrong I was !
I have now asked for and thankfully got a reduced workload

Its difficult to understand how all this waiting for the next treatment step is effecting me
I do not sleep well and have not for a long time - I normally wake up around 4:00am to 4:30am - I am up for anywhere from 1 to 2 hrs and then manage to go back to bed for an hr of so

Work then starts anywhere from 7am when I log in to approx 8:00 ish when I sit down to work
The next 9 hrs are a bit of a blur
I try and take a lot of tiny breaks so as to not aggravate my neck to much being sat in one position. Just to stand and move around. I am working at home most of the time at the moment

I could do with a bit of outside work which would help movement etc but due to reorganisation at work I do not live in the right place and have been moved to a different area/team and the area my team covers is not local to me. So I generally get to work at home rather than a mixture of outside work and desktop work
I am hopeful this will change as its not healthy for me stuck in a office all day
They said the postcodes will be changing a bit for 2018 but as yet nothing different for me

When at the home office I try and take a proper morning and afternoon "coffee" break as well as a small lunch break
The time seems to go and I cant seem to be able to plough through the work that I normally can

I am hopeful when the Dr comes up with a proper plan it will get my mind back to a normal place and I will be able to get back to normal work patterns

CT Scans

My new oncology doctor has requested fresh CT scans of the head, neck, chest and abdomen
Presumably to ensure there are no other signs of chordoma any where else in my body
If everything is clear they can then make a decision as to what route next to take

Life on hold yet again

A few days off

I was due to go back to work on the 2nd after the Christmas holiday but did not feel up to it
It has been quite a mentally traumatic time since hearing the news that the proton funding has been refused
Back to work on the 8th

Proton Beam funding refused by the NHS Funding board

When I received my results of my last MRI 3 weeks ago my oncologist recommended that I have proton beam treatment again
He felt that it was the correct retreatment and put me forward for funding via the NHS commissioning board
Three weeks later I hear that funding has been refused
I am awaiting the official letter but I am advised there is little likelihood of appeal

Also In the last week or so my oncologist has changed. He, ironically has gone to work at the UK proton centre in Manchester due to open in october 2018

My new oncologist was the one who called me and told me the news
She has suggested as an alternative treatment called gamma knife
She will see me in the new year to review the situation

I am now in limbo and unsure of the next steps - Are there grounds for appeal?
Can I look at private funding either in USA where I went before or cheaper but unknown alternatives like the proton centre in Prague

Lots to consider and agonise over

In the meantime I have a ticking time bomb tumor in my head

MRI Results

Saw my oncologist today with the MRI results
Unfortunately there is sign of regrowth in the area where they last operated
There are 3 small changes they can see - all around 2 to 3 mm. Very small but growing
I new it was likely to happen sometime but I had hoped the previous radiation would keep things away for a lot longer - like tens of years longer
Lots to consider and will update soon with the next episode of this journey

MRI Time

Scanziety is well and truly set in. I had an MRI
I was on a scanner in the car park!
A mobile unit. They must be busy
They have a MRI unit with 3 scanners at the hospital  plus another near casualty and a permenant mobile outside the MRI unit
So 5 in total
I was in an extra temporary one run by whoever they hire it from. So 6 MRI scanners running at the moment
It was a very busy unit and even with the extra scanner it still had half hr delays
Results on the 1st

MRI Results

MRI results today - No change - which is good news

We are doing a 3 month cycle between MRI scans at the moment

Pain in the neck

The pain in the neck has not reduced as much as I would like with the pills I am taking
I find myself continually needing to hold the left side of my neck/head trying to support the head
In fact my left elbow is now in pain due to the action of supporting my head !
The pain is mostly when I am relatively motionless such as driving and watching TV
I drive an auto thank goodness. I have adapted to a bit of one handed driving due to needing to support the head with my left hand - (The steering wheel is on the right hand side here in the UK)

As soon as I lie down the pain quickly disappears
I also am getting a bit of an issue with my tongue where there appears to be pressure being put on the twelfth nerve.  As a result my tongue goes a bit off centre. Tilting my head forward or lying down gets everything back to normal

I paid a visit to the doctors. I have changed pills to Gabapentin as this has helped before

Quick update

I have missed a few things over the past few months I will back fill a few dates

Back To Work

I went back to work today
I work from a home office although I am often out for at least part of the day, the nature of the work means that I would need to be available to answer the phone throughout the day
At least the "work load" is set at 50%

Pain

As part of my visit to see the surgeon on the 7th of March I had to have a X-ray to check the bone alignment
I had to extend my head up and down for the X-Rays
Within a few days I developed a fair bit of pain in the neck area which has been getting progressively worse
The only instant cure is to lye down and rest my head supported on a pillow
After a few weeks of this I contacted the hospital and they did another X-Ray.  This time I did a bit less movement as I guess it was me extending that caused the issue in the first place
The pain is more under control but is still constantly there

Follow up visit to the surgeon

Hey everyone
Visit to the surgeon today 7th
He is very pleased with the full resection of the tumour - so am I :)

Due to the various surgeries I have had it gets a bit harder for the specialist to read the MRI and they have highlighted a small area near my original Chordoma growth which they want to keep and eye on
Hopefully it's nothing

Next MRI booked for the end of March
I will be seeing the oncologist again in April
I will then find out what if anything he intends to do with me

Operational thoughts

Its over 3 weeks since the operation and its about time I wrote a little about the experience

I was certainly dreading this op.  The risks were higher due to various potential issues
There was talk of occluding (Removing) the veritable artery to the brain. Removal of a section of the Dura which is part of the protective lining surrounded the brain plus various other issues and problems that could occur during surgery

They called me in a day earlier I believe so that they could secure me a bed as if they got filled up with patients overnight the op would have been cancelled
I had to wait around 5 hrs in the neurosurgery ward A3 waiting room before a bed became available. I was on my own at first but then another bed was taken by someone who was quite confused and wanted the loo every 10 minutes but could not find it even though it was in the same room a few feet away. He kept shouting for the nurse. That kept me awake. Then just as I began to doze off around 2am they brought in someone else. There was a lot of noise getting him settled.  The loo guy kept telling them to be quiet as he was trying to sleep!.  After they settled this new guy he spent the night texting and his phone kept pinging all night
About 4 or 5 am I got hold of a sleep pack some ear plugs and a mask. By the time I eventually fell asleep it was nearly time to wake up

I was on a no food after midnight with only sips of water regime
At about 7.45 they had me ready to take up to the neurosurgery theatres. I saw one of the surgeons and signed the operation consent forms. The anaesthetist went thorough what he was going to do.  He seemed to think I would be in theatre for around 3 hrs which was odd as my surgeon said he had booked me as the only operation that day as he thought it would take a long time
They took me up to the to the neurosurgery theatre and I recall the clock on the wall outside the theatre was dead on 8am when I got there. I am in the pre op/recovery area directly alongside the theatre
About 8.15 they wheeled me into the anaesthetists room and put me to sleep. The assistant to the anaesthetist had terrible breath. I was out cold in a few minutes so I would no longer notice or care

I wake up in recovery area and try an fix in my head the time - 6pm
I can wiggle my toes and move my hands and don't appear to have any pipes or tubes in me
I chat to the recovery nurse and I recall she lives in the same village as me.  I asked her if she has been to the new village coffee shop and she had not as did not know it was there.  I said if I saw her there I would not recognise her with her clothes on (she was wearing scrubs)
Clearly the drugs they had given me were strong !
I have no recollection of going back to the ward. It was ward A5
Apparently I was awake and Julie was there waiting for me although I cannot specifically recall
I had my favourite position. The window view in a 4 bed room behind the nurses station

That was my surgery day

Haircut

I have been desperate for a trim since the operation

I do it myself with a hair trimmer and its a lot of head tilting and slightly awkward positions

Added to that I had to contend with a large scabby scar !

Also there were other small scabs to work around where they fixed my head in a frame for the op

Anyway it took 4 times longer than normal but I managed it and I have a well trimmed bonce :)

Beginning to feel a bit more normal

Out of the la-z-boy and a sleep in bed at last

I manage a nights sleep in bed tonight

I have been sleeping on the la-z-boy since being home as its been a lot more comfortable than trying to lay flat in a bed with difficulty in turning etc

Got this chair just after the first operation.  Has been fantastic for recuperation

Home

I am feeling pretty good considering. I will try and update and fill in the past few days when I feel up to it

The surgeon is very pleased with the outcome

Operation 4/5 done

Operation number 4 done or 5 if you include the Biopsy

I was on the operating table approx 7/8 hrs
They feel they have done a good job

I want to surgery at 8am and woke up in recovery around 6pm. As far as I can remember

I am in in pain where I was laid on my side for so long
My right leg and arm and hip and shoulder
They need me fixed in one spot while they do the operation on my head
The head is fixed in a frame while the operate via the left side of my head / neck behind the ear

I will update more when I feel a bit better

Oddly enough only a little pain from my head so far !

5hr wait to get a bed

I got to the hospital at 3pm. Got a bed at 8pm.
Early start tomorrow for the operation
I have signed the consent so all things underway
In a 3 bed ward by myself so the only snoring will be my own !

Been awhile since my last post - There is a lot of new stuff

The bottom line is that the Chordoma is back and I am booked in for another operation on the 25th January

They have set aside a full day as me being there only surgery that day and there will be 2 surgeons working as a tag team to get to the Chordoma and hopefully remove it

I am going in late the day before for an early morning kick off for the surgery

Today I have put in a few notes and updates using the correct timeline/dates these things occurred. So have a look at the last 4/5 posts to catch up with what has been going on

Neurosurgery Outpatient Visit 2

Revisit to the clinic to get the results of the CT Angiogram and set up a surgery date

The CT Angiogram was OK and surgery date set for 25th January

Neurosurgery Outpatient Visit

Meeting with my consultant to discuss the outcome of the MRI and their proposed treatment

The Chordoma Tumour at the level of C1 just beneath the occipital condyle

They want to do more surgery. Its a bit more difficult this time as they are going in the same area
I have to have a CT angiogram as they need to check the blood flow to my brain as they may need to occlude (cut) one of the veritable artery during the surgery and they need know I have good blood flow as I could suffer a stroke if there is a lack of blood flow

They may have to do surgery around the space of the spinal chord which may need to be patched up I then could get pseudomeningocele


C1 is the top bone of the spine

Oncology Clinic - Results day - Not Good

Since my last MRI there has been a definite increase in size of the "blob" that has been seen on previous MRI scans

That means that this "blob" is Chordoma and not water as they (and I) had hoped

They have booked me in a week from now to see the surgeon in the skull base clinic

There proposal is resection of the cancer if possible and if not fully possible to move is as far away from the brain stem as possible

This will give an apparent clinical advantage when they carry out more radiation

This radiation is likely to be normal radiation rather than proton as
1. They don't believe I will get funding
2. If I did get funding the proton centre may not want to do further radiation

We will cross that bridge after successful surgery