A Gastro-Intestinal Stromal Tumour is rare, but you are not alone!

SIMON'S STORY

 

Born in 1951 and now aged 63, I was first properly diagnosed with GIST in 2012.

I had been generally feeling a bit below par and my appetite had declined through late 2011 and the early part of 2012 and I was seemingly putting on weight. I am normally around 90 kg, but my weight was creeping up to 100 kg. My wife put this down to enjoying retirement too much (I retired after a long career in the oil and gas industry in 2009), but I knew that there was something wrong when I felt discomfort, but not serious pain, in my abdomen one evening whilst sitting watching TV. I had to go to bed immediately and spent an uncomfortable night with right upper quadrant discomfort. The following day a trip to the local Health Centre and my GP suggested gall bladder problems and put me onto penicillin and anti-acid (I had experienced a little acid in my system). I returned a few days later (no change in symptoms – distended and very hard abdomen), and he recommended that I pay privately for an ultrasound scan and a consultation with a general surgeon at the local private hospital. These were arranged virtually immediately, and it was clear from the ultrasound (which was terminated after just a few minutes) that I had a huge “obstruction” in my abdomen (“your stomach and liver are pressed up into the top of your abdominal cavity, and I can’t even see one of your kidneys because of the obstruction”). A couple of days later a short consultation followed with the surgeon who indicated that a CT scan would be necessary and, within, two days this had been arranged at the West Suffolk Hospital (WSH, Bury St Edmunds) (via the National Health). My consultant (Neil Keeling) was in London the following day, but called me early the day after (Friday) and said “come into Accident and Emergency and we will be operating on you this weekend”.

I was admitted to the WSH that Friday and went down to surgery at about 3pm on the Saturday afternoon (28th April 2012). To cut a long story short, a tumour weighing approximately 5 kg, being 26cm in diameter was removed most skilfully by Neil Keeling that afternoon in a 3 hour operation. My gall bladder was removed in the same operation through an incision that extends from my sternum to below my belly button (Neil had warned me that this was “unlikely to be keyhole surgery”). In addition to the general anaesthetic, I had a revolutionary new anaesthetic procedure involving an epidural into my lower spine that meant that I was able to get up and walk around almost normally the following day (Sunday) (I was even filmed doing this for pain management research purposes). My recovery was sufficient to allow me to be discharged to home at lunchtime the following day (Monday), less than 48 hours after I had gone down to theatre. I didn’t even have external stitches – the wound was closed with steri-strips! The treatment and support at the West Suffolk Hospital was absolutely first class. Apart from some delays in my bowels getting back into full working order (this was at times more discomforting than the operation!) I made a steady recovery and was able to go on a foreign holiday about three weeks after the operation. By this time, however, I had received a call from Neil informing me that he was referring me to the Oncology Unit at Addenbrooke’s (Cambridge) Hospital (he also mentioned Royal Marsden but acknowledged that Cambridge was nearer). My first appointment at Addenbrooke’s was less than five weeks after the surgery, and it was at this meeting that I was informed by Dr Bulusu that I had a rare cancer called GIST. It seems that there are a number of specialist GIST Centres around the UK and that Dr Bulusu at Addenbrooke’s is one of the doctors who specialises in this rare sarcoma. Rather surprisingly, Dr Bulusu said that he believed my GIST was the recurrence of a colon tumour that had been removed in the European Medical Centre in Moscow, Russia, in early 2007 (I was 56 years old at the time) (Neil Keeling had also hinted after rummaging around in my abdomen that my latest tumour may have been connected with “my adventures in Russia”).

At a follow up consultation with Dr Bulusu (June 28th 2012) we examined a new CT scan (taken the day before) that showed what a great job Neil Keeling did in removing the tumour. At this stage I was to have repeat scans every three months to monitor for regrowth, which would be tackled in the first instance by surgery. I was not prescribed Imatinib or other specialist drugs at this time. It was at this time that I was informed that my tumour was an EXON 9 mutation.

By October 2012, however, there was evidence of some tumour regrowth so I started on Imatinib (Glivec) at 400mg per day, which I was able to take without significant side effects, and continued taking for almost a year. By November 2013, three separate growths were identified, the largest of which was 7cm and I was admitted to Addenbrooke’s for “debulking” surgery (Dr Bulusu’s words) by Mr Hindmarsh on 24th November 2013. In addition to quarterly CT scans throughout 2012/13 I also had a PET scan prior to the surgery. The surgery followed the course of the April 2012 surgery – opened from sternum to below belly button, two days in hospital, glue (not steristrips) this time, home for recovery, two weeks for bowel to return to normal, etc. In view of my mutation I was then started on Sunitinib (Sutent) at 37.5mg daily. I continued on this until CT and PET scans showed some “possible progression” in July 2014, at which point Ramesh Bulusu switched me to 50mg Sunitinib (4 weeks on) and no drugs (two weeks off) and repeating. Sunitinib has, in my experience, greater side effects than Imatinib (diarrhoea, loss of appetite and acid), but I have not suffered from hand/foot syndrome, mouth ulcers, high bold pressure, etc., which are recorded in others.

At the time of writing (September 2014) I am progressing with quarterly CT scans and the Sunitinib 4 weeks on (50mg) two weeks off regime.

Simon

(Updated October 2014)

 

New UK clinical practice guidelines for the management of gastrointestinal stromal tumours (GIST) published by British Sarcoma Group - NEWS >>>

GSUK's Chair Nic Puntis discusses the BBC's report on the Cancer Drugs Fund on BBC Wiltshire Radio - NEWS>>>.  

Michael Sayers...news

Update on GIST clinical trials that are recruiting and in the pipeline....

Forthcoming Patient Meetings

  • Friday 6th October in Cardiff
  • Thursday 7 December in Edinburgh
  • Friday 9th March 2018 in London
  • Friday 5th October 2018 in Manchester

More information will appear on this website in due course.

We have launched our first GIST patient survey and hope to gather a better understanding of the landscape for GIST patient treatment in the UK. The survey closes on 10th September 2016 so if you would like to participate please complete the survey by clicking this link

'ALT' GIST Trial to open in the UK soon! We have been alerted to a new trial that will be opening in the UK in the near future for metastatic GIST patients. Read more on our Trials & Research page 

PAWS-GIST Clinic 7 - Newsletter June 2016

GSUK attends Cancer52 parliamentary reception to raise awareness of rare and less common cancers.

GSUK Research Update 2016 - Read all about it here

NHS England's Sarcoma Service Specification consultation is open until Weds 20th April 2016.       Please register your views by responding directly via this link.                             GSUK's response can be viewed here

Cycle for GSUK! We have four allocated charity places on the RideLondon event for this year and also for 2017 and 2018. Go to our News page to find out more!

The Masitinib Trial is now open.  For further details of this trial, and to find out which centres and clinicians are involved, please go to our Research & Trials page. 

Regorafenib has remained on the NHS England Cancer Drug Fund List for GIST patients! Read more!

Can you help Professor Eamonn Maher with his research Study? If you have had, or have, two or more primary GISTs, or a GIST and another tumour, find out more at the bottom of our research page

PRESS RELEASE - UKTV announces GIST Support UK as its Charity of the Year 2015

TUMOUR BANK UPDATE: "We have been granted approval from the NHS ethics committee for our National GIST Tissue Bank which will store these valuable GIST tumour samples for research. If you are about to have an operation and would like to donate your tissue for research please email  with your contact details. Visit our Retention of tissue page for regular updates.

Scottish Sarcoma Network: Interested in attending their Sarcoma education days or finding out about the services on offer ? Read our News page

Use of human tissue
Do go to our new "Retention of Tissue" page and please sign a consent form!

GSUK funds research!
GSUK provides £20,000 from donated funds to help start a research project at the Royal Marsden. Visit our News page for further information and picture.

Funds being raised for UK PAWS GIST clinic
See our News Page for more information.

NICE approves improved treatment for ascites
The PleurX system allows the patient to drain fluid from the abdominal cavity without having to pay repeated visits to hospital. More information on our News Page.

European Commission approves three years' adjuvant use of Glivec
Visit our News page for more details.

Masitinib
A press release in February claiming the effectiveness of this drug as a replacement for Sunitinib appeared to be premature at the time. However subsequent news may be more encouraging! See our News page for more details.