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


Hugh has very kindly written down his experiences of taking Glivec for us, and if you are starting to take Glivec, you may find his hints helpful. He emphasises that this is just his personal experience, and we know that we all react differently



Living with imatinib (Glivec)
Having been on treatment with Glivec (400 mg daily) for eleven months I thought I would set down my experiences for those who may be starting treatment. In my case the drug has been given for a GIST (gastrointestinal stromal tumour) and it has been effective in shrinking the mass to the point where surgery is now being considered.


Glivec is a drug with side-effects and this paper relates how I have been affected by them. At the outset there are three general points to make:


  • Most side effects have lessened over time.
  • Side effects have varied from day to day and time to time. One day nausea or weariness may be noticeable; another day there are no symptoms at all.
  • Taking the tablet with the evening meal made a great difference. The idea was that if you were going to feel tired it would be best to be tired while you were asleep and that is how it has worked for me since I changed from taking the tablet at breakfast. You do have to remember to take a pill with you when you go out for an evening meal



Nausea and weariness
I couple these symptoms because they often seem to come together. I have had few days with no nausea at all but on most days the feeling of sickness is relatively short-lived, perhaps lasting 10 or 15 minutes. It is often accompanied by a feeling of tiredness or unwellness and can come at any time of day. Again and again I have thought to myself that I must be starting "flu" or some other disease and then realised that it was a Glivec effect. A quarter of an hour later it has usually gone. I have never been sick and my appetite has not been affected.


The weariness is sometimes enough to make me sit down and have a rest but if there has been something that I want to get done, such as to cut the grass before the rain comes on, I have usually forgotten the weariness by the time I am on the lawn. I think my energy level is a bit lower but it could just be the result of being 83.


Like other effects this varies a great deal but is usually noticeable in the morning, that is to say up to 10 hours after taking the pill. On most days there is a slight looseness of motions but no real urgency. Sometimes I feel a strong need to go but the urge is controllable. I have quite often had to "go" before going out on my morning jog. Three times I have had to get up in the middle of the night.


This is a rather coy term for a fart. I think farting has been rather more frequent but it is undoubtedly more malodorous. Before social occasions it helps to empty one's bowels.



There has been some degree of fluid retention leading to swelling of the ankles and puffiness around eyes. The ankle swelling is most marked at the end of the day and the eye-puffiness on waking. I have learned to avoid sleeping on my front as this makes it worse. It largely subsides after my morning jog and has mostly gone by mid-morning. My weight is about 1 - 2 kg more than usual.


I quite often have a brief cramp in thigh or calf as I am getting out of bed. It is similar to the cramp everyone has from time to time and goes quite rapidly but has been more frequent. In addition I often have brief cramps in a hand or ankle for no obvious reason, for example when reading.


I do not have a discriminating palate for wine but I have noticed a reduction in my enthusiasm for red wine particularly if drunk without accompanying food I still enjoy white wine but seldom feel like drinking more than a glass or a glass and a half. My enjoyment of food is unchanged.


Blurred vision
I mention this, not because it has been a significant effect but because I think I have bought new glasses unnecessarily. I complained that now and again I could not see where a golf ball was going or that one eye was not seeing a traffic sign as sharply as the other. Like my other symptoms this has varied and is not a big problem but when it was still present with the new glasses realised it was probably the imatinib.

I may have been lucky but I have found life on imatinib quite bearable. It has not stopped me from doing anything. And it seems to have been effective in shrinking my tumour. So I am grateful for imatinib and for an NHS which is ready to pay for it.

Hugh January 2011

The next PAWS-GIST clinic is happening on Friday 7th December 2018. Registration is via PAWSGISTCLINIC.ORG.UK 

Our next Patient Meetings are in Edinburgh on Thursday 31st January 2019, Birmingham on Friday 8th March 2019 and Leeds on Friday 4th October 2019. If you would like to join us please email  to register. We look forward to seeing you...

Rare Cancer Patient Survey - collecting feedback on rare cancer patient experience with clinical trials...

On the 10th October the Scottish Sarcoma network are holding a day called RISE at the Western Park Hotel in Falkirk. The day is dedicated to people with a sarcoma diagnosis and their families to focus on "what matters to me". This poster contains the registration details if you would like to attend. GIST Support UK will be represented at this meeting and we look forward to seeing you. 

A big thank you to Scotmid Co-operative for choosing to support GIST Support UK and the development of our national tissue bank. Read more here


If you missed any of our previous meetings, you can view the speakers' presentations here

Clinical Trial - 3 v 5 years adjuvant imatinib - trial centre list update here

19th August 2017 - Page 19 of the Times GIST report - READ HERE

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>>>.  

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

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.

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.