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

Impressions of 2010 New Horizons Conference in Vienna

by Stacey McAully

 

 

This year I attended the 8th annual "New Horizons in treating cancer" conference in Vienna. It was the first conference I have ever been to that deals with GISTs and I thoroughly enjoyed it!

 

On the first morning we went into a small room. Well I'm saying small but there were at least 40 people in there. Plus people with cameras and interpreters and wiremen.

The speakers in this session were Anna Costato from Association of Italian GISTers who is the mother of a 25 yr old GIST patient, Barbara Dore who is a GIST patient and a board member of GSI, Judith Robinson from GIST Support UK and Markus Wartenberg from Das Lebenshaus. I learnt that there are around 5000 to 10,000 new cases of GIST every year. Many people can live with micro-GISTs all their lives and not even know but in GIST patients something must have been triggered to cause the tumour to become aggressive and grow. Some if these factors are BRAF mutations or insulin related growth.

It was a very informative 10 minutes which also told us about some of the pros and cons of imatinib, such as people who have had a complete gastrectomy have a harder time trying to absorb imatinib. We also learnt that if your tumour is growing sometimes a "watch and wait" method should be adopted before rushing into major surgery.

In another session we learnt about a video site called Oncology Tube. A brilliant invention where people can upload videos to do with cancer or conferences and seminars they have been to and share them with the world.

 

 

I listened to some people talking about organisations they has set up in their home countries. The most inspiring people were Helga and Marti from Switzerland. Helga was married to the late Dr Ulrich Schnorf who was diagnosed with GISTs and died last year (not GIST related). His dying wish was that others in his position had people they could lean on. So Helga, along with Marti, started to go about setting up a GIST support of Switzerland. They aimed to have doctors, patient representatives and other GIST patients. They managed to set up the foundation and got it launched earlier this year. Helga was so strong when telling everyone what her husband wanted and how she misses him.

I also learned how more research companies are trying to get patients involved with their research as the patients give useful advice which benefit the research. The patients are the only ones who fully know what living with cancer is like. The researchers will also get more reliable results as the focus group who will be using the treatment will have been involved in its manufacture.

 

 

I also found out something which is personal to me. Both my parents are blood donors and I always wanted to give blood- especially after receiving blood transfusions. I wanted to give back to people who donated blood to me. However I realised that GIST patients are not allowed to donate blood. This could be because they are currently on treatment and have it in their system or they have been and there is traces in the blood still.

Judith Robinson and I gave a talk in front of everyone involved with the GIST side of the conference. We spoke about our "adventure" into finding Pediatric GIST specialists in the UK and how we were doing it. We also designed a poster to show everyone. It tells you about what we are wanting and what we have already done. We found out on the Sunday afternoon that out of maybe 30 posters our one was chosen the winner. People voted on which poster they thought was most effective, caught your eye and was overall ours was chosen. I am not 100% sure what this means but I am honoured to have had so many people vote for us and hopefully this is a step in the right direction for our journey into finding a specialist.

 

We also watched a video all about the amazing drug that is Glivec. It had stories from patients whose life was almost at an end and Glivec turned this around. I realised that although Glivec didn't work for me it has literally been a life-saver for so many others. It gave hope to them and their families. I have tried to attach this video here- if it doesn't work let me know and I will find some other way to send it to you all.

 

On the trip I met some very inspirational people. Some people had relatives come for them as they were simply to sick or because they were too busy enjoying their lives. I found it very encouraging to talk to people who have had a worse time than me who still get on with life. It made me feel more reassured that if I do have to have further treatments , other people have gotten through it and so will I. I met families of GIST patients and got a greater understanding of how hard it is on them as well as the patients.

 

I feel very fortunate to have had this experience and now feel as if I have a better understanding of this crazy cancer world. I also was able to share information with my parents which helped us understand everything easier. I heard of so many drug trials and research programmes going on that I feel more confident that we will not run out of options and near in the future we will beat this cancer once and for all.

 

 

Posted: 15/07/2010

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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.