I was diagnosed in December 2004 at Peterborough District Hospital, following treatment for severe anaemia. This was caused by a Gist tumour rupturing in the stomach wall, and I had experienced no symptoms other than the anaemia. I had a partial gastrectomy in January 2005 to remove the primary tumour and a small metastatic tumour in the liver. The operation was performed by an upper gastric surgeon who fortunately at least knew that Gist existed and that clear margins were essential. Peterborough had electronic contact with the regional centre at Addenbrookes Hospital in Cambridge, who were able to confirm that the tumour was a Gist with Exxon 11 mutation and a high risk Mitotic rate. At that time I had no further treatment but commenced my 3 monthly CT scans following advice from Cambridge.
In October 2005 a CT scan showed metastatic Gists in the right lobe of my liver and I transferred to Cambridge under the care of Dr Bulusu, a Gist specialist (exclusively), and he immediately prescribed 400mg Glivec daily. Side effects were severe “itchy” rash over most of my body and the dosage was reduced to 300mg daily which was very effective in controlling the liver tumours and without side effects. After a PET scan in March 2009 showed no active tumours in the liver, I underwent a liver resection in June 2009 to remove two tumours, and open surgery RF ablation on one tumour (not recommended). Surgery was carried out by Addenbrookes’ specialist liver team, and the liver grew back within 3 months or so. I was now NED for the first time and Glivec was discontinued.
In December 2009 a routine CT scan showed a new Gist in the left lobe of the liver, and 300mg Glivec was immediately resumed. It quickly began to control the tumour, but in Oct 2014 a PET scan showed that whilst most of the tumour was inactive, there was an active site in its centre. A further liver resection was recommended and carried out in January 2015 at Addenbrookes. It was successful and I am therefore again NED. However Dr Bulusu, who I believe is arguably the best informed Gist specialist in the UK, sent off all of the tumour specimens for full mutational analysis, and his suspicions have been confirmed, and the decision to carry out the last liver resection fully justified. The analysis showed that the bulk of the tumour was “dead” and was still Exxon 11 like the earlier tumours. However the centre of the tumour was still active but Exxon 13 which was a new mutation but more importantly resistant to Glivec. In other words had I not had the last liver resection I would by now be dependent upon Sutent at least to control the new metastisis, with all of the new, for me, side effects.
It has been suggested for some time that there was a possibility of two different mutations existing on the same site, but as far as I am aware it has not been confirmed elsewhere, but I am open to correction.
So why this long history, which I am placing on the website, now? I believe that you all might like to think about the following comments as you continue your battle with Gist.
At all times stay positive and keep fighting, because new treatments are coming along all the time, and 10 year survivals are no longer as rare as they were in 2004. However, make sure you are treated by a well informed Gist specialist, and transfer to one if in doubt. Until that elusive cure is discovered ensure that you have at least a 3 monthly, or 4 monthly, or at worst 6 monthly CT scan. Tumours are easier to control in the early stages. If you are worried about CT scans, they are much safer than they were, but you must trade off the slight but finite radiation risk, against possible multiple operations to remove advanced metastatic tumours..
If you are NED, do not be complacent, and think carefully before you stop taking your medication. You may avoid further surgery later by taking the pills.
Keep fighting Gist because it is not just one disease but exists in many mutations, including wild type, which may react to different medications. At present we are all still buying time until that elusive cure comes along, and thankful for our survival so far. .
Never forget that having a Gist does not mean that you are immune from other diseases. You still have to fight them as well, and with a weakened immune system. That’s what I am doing right now, and so far I think that I am winning.
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