Radiation again

I have just completed my 33rd radiation cycle at Addenbrooks

Now the wait to see if it's had any effect in holding this tumour back

I will know in circ 7/8 months. They will do an MRI when things settle from the radiation. That will be the base scan. Then 3 month wait till next scan. The result fingers X all will be worth it

Feeling More Normal Now

Stitches are out and other than having to wear this collar feeling a bit more normal now

I have been able to sleep almost over night for the past 3 days - getting more used to wearing this collar I guess

Still a long way to go but looking forward to Christmas 

 

Operation 5/6

I had a major 13hr tumour de-bulking operation on Monday
I was left in a coma for a couple of days whilst in a collar to ensure everything remained stable

I am now home
Feel very weak and drained
Its been a very tough week and will take a while to get back into the swing of things
Been a lot harder than ever before
Its really taken it out of me
Still fighting the fight
Have to wear a collar for 6 weeks My Avengers movie costume
Then they need to assess wether they need to fit fixation plates in the neck/spine
Then a course of radiation
So a very long way to go - again

Covid 19 Vaccination today

 I have had the Pfizer Jab :)

UCLH MRI

No calculable change in tumour size although it has apparently changed a bit
Will know more with next MRI in 3 months

Lots of tablets to take

Drug trial ongoing

UCLH MRI

No change in tumour size - I keep taking the tablets

Drug trial ongoing

MRI From UCLH

 No change in tumour size which is great news

The drug trial continues

MRI Result from UCLH

 No change again

The drug trial will continue

MRI - More results CUH

Had an MRI at Addenbooks which is my 6 monthly scan that my local hospital give me

Results match those of the trial MRI

There is even an indication of a slight reduction in size

Only 1 mm which is not huge but a whole lot better than the other way :)

MRI Results from the trial UCLH

All good
No change and all stable
Excellent result

The 7 year itch

Well not quite

According to most Chordoma information on the net the median survival rate is 7 years - Which for me is now !!!

Well I am pleased to report I am still here

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

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