Patient Meetings 2023

GCUK Patient Meetings - 2023 Video Reports

London Meeting - April 2023

Numbers in brackets give approximate times in the presentation where that specific topic is discussed.

Dr Ramesh Bulusu - The Cambridge Experience of managing GISTs

History of GIST treatment in UK and the development of imatinib (Glivec) and the introduction of generic versions. Results from a preliminary study at Cambridge of their relative effectiveness and differences in side-effects especially blood plasma levels of the active ingredients.  Neoadjuvant, adjuvant, and metastatic treatments (13:00). Questions and answers (27:20).

Dr Andrea Napolitano - Recently completed and ongoing trials

How NICE makes decisions on drug approval.  Mutations and where GISTs occur (1:15).  The effectiveness of different drugs on different mutations (4:30). Secondary mutations (5:30).  Circulating tumour DNA (ctDNA).  Overview of available clinical trials (8:30).  Navigator trial – Avapritinib (10:00).  Voyager trial – Avapritinib (12:00). Invictus  trial –  Ripretinib (12:30).  Intrigue trial - .  Comparison of the effectiveness of Repretinib and Sunitinib on different mutations (17:30). Insight trial (20:00). Peak trial – Sunitinib and Bezuclastinib (21:20).  Risk factors and adjuvant treatment including research into extending length of imatinib treatment from 3 to 5 years (23:45).

Dr Ramesh Bulusu - PAWS-GIST Update

Different types of GIST and their nomenclature.   Mutations and implications for prognosis and treatment.  Heterogeneous nature of PAWS-GISTs.  Clinic structure and what happens. Clinical data of PAWS-GIST patients (12:00).  Typical clinical treatments (16:00).  Current PAWS-GIST research focus (22:40). SIRT treatment (28:30).  Future plans for novel treatments (32:00).


There was a combined Q&A session for the first two presentations.


Dr Ramesh Bulusu – Generic Imatinib: The Cambridge experience

Dr Andrea Napolitano – Recently Completed & Ongoing Clinical Trials:

Dr Ramesh Bulusu – PAWS-GIST Update

Q&A Session – Tony Manuel

Patient Meetings 2023

GCUK Patient Meetings - 2023 Video Reports

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

Leeds Meeting - October 2023

Leeds was the venue for our second Patient and Carer meeting of the year.  Presentations (see below) and discussions ensued about a range of issues.
  • Dr Alex Lee, Consultant Medical Oncologist. The Christie - Side Effects Management

  • Professor Dan Stark. Professor of Teenage and Young Adult Cancer Research - Leeds Institute of Medical Research, University of Leeds and Consultant in Cancer Medicine – Leeds Teaching Hospitals Trust.  GIST Management – A brief history from before active drugs, to Imatinib, then other drugs and now to current clinical trial questions

  • Marion Oliver. B.A.; Dip.Clin.Psych.; A.F.Ps.S.  The Psychological impact of Diagnosis and Treatment of GIST

There was a combined Q&A session for the first two presentations and an update on developments in GIST Cancer UK.



Oral tyrosine kinase inhibitors in GIST: Dr Alexander Lee, Leeds October 2023

GIST Management: Professor Dan Stark, Leeds October 2023

The Psychological Impact of Diagnosis and Treatment: Marion Oliver, Leeds Oct 2023

Strategy & Volunteering: Mark Atlay, Leeds Oct 2023