Doctors have advised there is no more treatment available to me !!!!

 I had a meeting today with one of my surgeons and my oncologists and was told no more treatment was forthcoming for me and effectively that was the end !

I kind of expected something like this so had prepared a 3 page letter outlining ideas and supplementary treatment including second surgical opinion and alternative drug therapy

The main one being a recently publish paper an a trial of a Chemotherapy drug called Pemetrexed which has had some success with Chordoma patients

They agreed to ask for a second surgical opinion with a team from Manchester hospital

They are also going to refer me to the oncology chemotherapy team regarding Pemetrexed

 

 

Home

 Home from surgery

Feel reasonably OK
Face is puffed up a lot
My head now looks like Brendan Foster from the film The Whale

Surgery 27 Nov

 It has gone well. I was up and about next day

Not sure how much was removed. May find out on Friday 

I now have a scar on my neck. That will be fun to shave around!

Physiotherapy and MRI

 Had a Physiotherapy session today
Gave me a few exercise to try and help loosen muscles etc in neck

Saw an MRI of the tumour which was quite a shock as its bloody huge. Hence only a few little movement's given rather than a full physio session
I can feel the lump on the side of my neck and its pushing the muscles which run to top of shoulder. Thats why I have pain in both places
Need this lump removed ASAP

Pre Surgery Assement

 Went to Cambridge University Hospital (CUH) (Addenbrook's) for Pre Surgery checks
All checks OK so OK for having my 6/7th surgery

Surgery is booked for 29th Nov 
With my new surgeon and apparently my previous surgeon and a third surgeon attending as well
So a triple tag team of surgeons 

Pain

 I have been in terrible pain the last few week's
The nerve injections made the pain worse than ever
Then amazingly things suddenly started to improve and most of the pain went away in the occipital nerve area

I still have a lot of pain in the neck and now top of shoulder which I think is pressure on the muscles from the tumour growth

The occipital nerve pain is at the moment under control

More Tumour Growth - Latest MRI Results

More Tumour Growth

Now approx 48mm x 49mm
So it has grown 1cm since last scan

The technical wording on the report

The heterogeneous T2 hyperintense patchy enhancing tumour in the left
neck, left lateral masses of the upper cervical spine, extending from the
petroclival region down to the level of C4 is unchanged in its superior
aspect at the level of the odontoid peg but continues to increase in size

At its inferior aspect. At the level of the C2 vertebral body, it has maximal transverse
dimensions of 49 x 48 mm (previously 39 x 35 mm at a similar level).
Medially, epidural tumour indents the thecal sac and minimally indents the
left side of the spinal cord. Its inferior tip is now at the level of the
C4 superior endplate (previously C3 inferior endplate)

MRI

Another MRI. Results in a few weeks 

Nerve block and Trigger point injections

Went to Ely hospital today to have a Nerve block injection and 3 trigger point injections
It was canceled from 2 months ago due to a Doctors strike
Lets hope it helps to stop the chronic pain as it has now been labeled

Follow the links for more info 
Nerve block injection
Trigger point injections
Chronic Pain

A few hospital visits this month

 Saw my new ENT Surgeon

First hospital visit to see my new Surgeon to discuss what next
He is planning an operation
He is Ok to leave it for a while so as we can have our summer holiday. I will see him again in the autumn
The tumour is about the size of a golf ball

Also saw a chronic pain consultant

They will be doing a Nerve block pain injection
Plus some physio and chronic pain education and self help classes
All to come over the coming month's

Latest MRI Results not good

There is tumour growth again in an area around C2/C3 on the left side
The radiation I had has not done its job unfortunately

Now in an area outside of the skull base team that I have been with from the start
Its a ENT team who are reviewing it and I will be seeing them in early June to find out what next

Its about the size of a golf ball

I have been having awful pain so have been put on a course of steroids which has helped

ENT Oncology appointment and MRI

Two appointments

Oncology Doc and MRI
Dr OK with things since radiation - carry on the pain meds

MRI standard thing - will have to wait for results

MRI Results

Just had the results of the last MRI

There is a slight reduction in size of the tumour which is good news

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)