Gemcitabine

 I started this chemotherapy drug today. 

There is not a huge amount of data on how effective this drug is
Hopefully it will do better than the last drug

For more info on drug click below
Gemcitabine

Nivolumab

 I started taking this immunotherapy drug last year about 3 months ago

MRI report of a few weeks ago reports a 15mm growth and more alarming its again pressing on the spinal chord

So the drug has had little or no effect on tumour control

This treatment is on trial with stereotactic radiosurgery (SRS) in USA
I could not find any UK way of having SRS with the Nivolumab so had to have the drug on its own 

My Dr tried to get Pembrolizumab a drug that has been recorded as beneficial to some chordoma patients
NHS England panel refused to allow it to be given to me.

I read the panel screening document detailing the refusal and it was for me impossible to understand their reason for refusal - The drug is very expensive - maybe that is the real reason !?

Nivolumab is a drug that acts a a tumour a bit like Pembrolizumab but as Pembrolizumab has shown to be more effective than Nivolumab it has not had as much research done on it

For more info on drug click below

Nivolumab

October MRI Scan - More Growth

MRI scan shows new growth in the C4 area
I have discussed with my Dr another drug Pembrolizumab which he will try and get

Shout out to a friend Vince who regularly checks my blog for updates - Vince I will try and update more often !

I have written this on 21/01/2026 but as the info relates to October last year have put published date as around then to keep updates in correct order

Update

MRI scans Sep 24, Jan 25, Apr 25, Jul 25
All have showed stable appearance even without any treatment

I have also felt very well and have had a hugely improved quality of life over the past yr or so

I have also been able to reduced pain drug intake considerably 

So the Pemetrexed chemotherapy has damaged my kidney but has also reduced and stopped the tumour growth for a long time

This below was my original post that I put up left here Just for info 

Can't believe how long it is since I last posted

A fair bit has changed since then

I have been on a drug or at least I was on a drug for about eight months which has had a good effect at stopping tumour growth. Unfortunately the drug did some damage to my kidneys so I had to stop.
Even so since stopping almost a year ago, there has been no further growth so far

So when you consider that I was told that no further treatment was possible, having knowledge and info on what's going on in the world of Chordoma made a huge difference
I was able to get them to look at other options and refer me to the oncology department.
I requested a specific drug which has clearly helped, albeit with it causing other issues

Waiting for my next scan in October and fingers crossed there's still no further growth

Pemetrexed Cycle 11 Day 21

 This is the end of the line for this drug as is has caused damage to my kidneys

Therefore treatment has stopped

I has been very successful up until now - Shrinking the tumour and giving me a better quality of life

I will be continued to be monitored with 3 month MRIs and will look for another drug when growth of tumour occurs

Pemetrexed

 Started on a chemotherapy drug Pemetrexed
I found a promising trial paper on the drug which I passed on to the hospital Drs

There are no drgs approved for Chordoma so this drug is "off label" thankfully the hospital trust agreed to pay for it 

For more info on drug click below

Pemetrexed

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