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Updating James's Story........

James’s Story

My problem started in the early - mid 2000s when I suffered from consistent pain in my coccyx. I was referred to a back consultant who diagnosed coccydynia. He gave me an injection to relieve the pain but said that if that didn't help, there wasn't much more he could do. It didn't relieve the pain but due to what he had said, I didn't go back to him.

In late 2008 with the pain getting worse, I thought I would discuss it again with my GP but in view of what the consultant had said before, he could only suggest paracetamol. Somewhat frustrated, I was talking to a work colleague and she suggested going to a private osteopath who she had seen. I did so and he thought some laser treatment might help. Crucially, however, he said that before commencing, I ought to have a scan to check what was going on. Nobody had suggested this before. 

So in November 2008, I went back to the GP and he said yes, he would refer me to another back specialist with the specific purpose of having an MRI. 

The MRI showed a lump at the base of the spine. At first I was pleased, as it at least showed there was a problem, but I was soon careful what I wished for when the consultant said it looked like a chordoma. That triggered lots of research online and I soon learnt quite a lot about this rare cancer! He referred me to Mr C of the RNOH Stanmore, a specialist chordoma surgeon.  A biopsy confirmed a sacral chordoma and he performed an excision in Feb 2009.

The chordoma was about the size of an orange and Mr C was pretty confident he had removed it with a satisfactory margin. He did not think any radiotherapy was necessary and follow up analysis confirmed this. Inevitably, however, he had to damage some nerves and I have had to use intermittent catheters ever since (which I find easy and not too inconvenient). There is also some bowel movement impairment but crucially I have full control and do not have any incontinence problems. There was a fair amount of discomfort at first in the buttocks when sitting down and I find it better to lie on one side. This has got a bit better over the years. 

After about a three month recovery, I was able to return to work.

I had regular scans which were promising at first, but in 2011 a further swelling appeared in my left buttock. The radiologist thought it was post - operative change but Mr C was suspicious and a further biopsy showed it was chordoma which had now tracked to my left buttock and down my left thigh.

Mr C excised this in June 2011 and I made a fairly quick recovery with no change to other functions.  But this time there were some remnants and he said that I should have radiotherapy.  A scan also showed some very small nodules in my chest which he wasn't sure about but thought could be removed if they developed. I was referred to Dr B at Addenbrooke's Cambridge who devised the radiotherapy which was quite intensive - 40 sessions over 8 weeks. This went well and Dr B was pleased with the shrinkage in size of the nodules in my pelvic area. The small chest nodules seemed to have disappeared.

The regular subsequent 6 month scans showed promising progress with small but steady decreases in the size in the buttock nodules. However, in summer 2013, I began to have asthma like chest symptoms which I reported to Dr B and he immediately organised an MRI and CT of my chest. He said he wasn't too worried and so, when I went to see him afterwards in Sept 2013, I wasn't prepared for what he had to say. He told me it looked like the chordoma had metastasized to my lungs and wasn't operable or curable. A biopsy confirmed this. I also later developed another large swelling on my left thigh.

He referred me to Dr H for treatment and she told me that the only real treatment is Imatinib, a tablet form of chemotherapy that might shrink back the tumours in the short term. I took this drug from Nov 2013 to Jan 2014 and it made me feel very unwell. Worse, it didn't do any good. A scan in January showed 30% growth in tumours and so Dr H said there was little point in continuing. She recommended some additional radiotherapy and I had 15 sessions on a targeted area of my lung and also on the swelling in my thigh. I believe this was helpful in both areas. 

Other than this, Dr H said in January 2014 that there is not much more they could do and I would be fortunate to see Christmas 2014. However, although subsequent chest xrays and CT scans have shown further tumour growth, this is not as rapid as she had feared and I am confident of seeing 2015. I'm pleased to say I’m not in any real pain but am suffering from progressive shortage of breath and exhaustion after the most basic of physical activities. Dr H has now referred me to Prof J of the Royal Marsden who has experience of combining Imatinib with another drug called Sirolimus which has been successful in restricting the growth of lung tumours. So as of November 2014, I am now embarking on a new regime in the hope that this will give me more time. 

I have been able to enjoy life over the last year with brilliant support from my wife Sally and my four children. We have been on several holidays including a 12 day cruise to the Baltic which we greatly enjoyed. In May, I celebrated my 60th birthday with a big party. In the same month, my children persuaded 14 of their friends to participate with them in the Dirty Rat Race at Burghley Park Stamford. This gruelling 13 mile run is reputed to be the longest assault course in the world and they successfully raised a considerable sum of money for Chordoma UK and Dr Adrienne Flanagan’s work at UCL.  

I remain in good spirits and fill my day with as much activity as possible. I play the piano and have been musical director of various Am Dram productions in the past. In order to give me a focus, I have committed to help in another production in March 2015 - so that's my next target! 


November 2014

News archive

April 2019

My Day Out – Classic Car Outing 2019

March 2019

Notochordal Cell Tumours Workshop Chordoma research prize

February 2019

Understanding Chordoma: A National Cohort Study

March 2018

Understanding Chordoma: A National Cohort Study

December 2017

Congratulations to Professor Adrienne Flanagan

August 2017

Why do one event when you can do two!

May 2017

UK chordoma patient choose Prague for his PBT...UK's first high-energy proton beam machine in...New Malden Farmers Market supports Chordoma UK

April 2017

Spring 2017 update from Chordoma UK and...Emma Holloway and "Team Chordoma" raises some...Thank you to the Tanner TrustParis marathon runner Alex raises almost...Charlotte raises £900 for Chordoma UK...Another London Marathon run for CUK

October 2016

What has McDonald's & chordoma got in common?...

August 2016

Chordoma Biobank coordinator Clare Unwin...

June 2016

Clare Unwin Joins CUK / UCL Cancer Institute..

January 2016

Chordoma UK funds UCL Cancer Institute Biobank...2016 London Marathon team runners - Ed and...

November 2015

You've broken the £400,000 milestone!

October 2015

CUK founders Gerald & Susan Fitz-Gibbon at...Still plenty of time to register for the Milan...

September 2015

Well done to Aimee & Steve with another...What an amazing fund raising weekend it was...Guitars on The Beach - another huge success...

July 2015

Angela's travels with her tumour.....Sean runs the the 8.5 mile Sutton fun run and...Aimee and Steve run the "Nuts Challenge for...

April 2015

GlobeImmune Announces Opening of Randomized...

March 2015

Oliver and Kate run their first marathon for...Wow….. $1/2m raised so far!

January 2015

The simple math that explains why you may (or...A great start to 2015

December 2014

Sue Puddicombe does it again!With the state of cancer diagnosis a source of...John Baron MP, chairman of the All Party...John Baron MP hosts and addresses ‘Cancer52’...

November 2014

Updating James's Story........ Exceptional Wallace Collection fundraiser for...Chordoma UK receives a bequest of £10,000.00News from GlobeImmune Inc following their...

October 2014

Some facts, figures and a little trumpet...Hollywood here we come…..Lord Darzi formally unveils plans today to...Tim runs for Chordoma UK

September 2014

Central London Gallery Event...

August 2014

With a quite extraordinary result for...Sarah Holdsworth - runs like mad for Chordoma...

June 2014

Dinner Dance, Ferrari's Country Hotel,...Reception at St James's PalaceFunds are needed NOW to develop new therapies...Raising funds for research and awareness...

May 2014


April 2014

Getting close to £100k !

March 2014

RAT RACE DIRTY WEEKEND. Ginny Major goes for it!The LONDON MARATHON.. Freddie, Joanne and...HAPPY BIRTHDAY TO US, HAPPY BIRTHDAY TO US.....Plans now being made for the Great River Race...Lots happening this spring.....

September 2013

NEW CHORDOMA UK WRISTBANDS AVAILABLE.ChordomaUK participating in London's 21 mile...

August 2013

Blood transfusions during cancer treatment... ...Imatinib.. (Glivec in the UK) often talked...New Initiative Launches to Organize the UK...Welcome Lisa....

June 2013

Researchers at Oxford University Hospitals are...Identification of repurposed small molecule...National Cancer Institute Opens First...Chordoma UK now joined the Cancer52 Alliance...Walkers raise over £2,500.00 for Chordoma UK

April 2013

Mail on Sunday article raises awareness

February 2013

Chi-chi Nwanoku & friends Chamber Concert benefitResearch - what have we achieved so far
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