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

Leeds Meeting - October 2023


Dr Alex Lee, Consultant Medical Oncologist. The Christie - Side Effects Management

How Tyrosine Kinase Inhibitors (TKI) drugs work and their side-effects. Introduction to biochemical processes.  Effects of different drugs (7:30).  Imatinib and its generic versions (8:45).  Common side-effects (10:55). Grading of side-effects (13:15).  3 vs 5 year trial (15:00).  Typical side-effects and their frequency (21:05). Single vs double doses (21:45).  Sunitinib (22:30).  Side-effects of Sunitinib (24:50).  Regorafinib (25:50).  Managing toxicity (26:50). Managing: fatigue (29:10); nausea (30:40); diarrhoea (31:46); rash (33:40); hand-foot syndrome (34:20); muscle-cramps (34:50); high blood pressure (35:15).

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

Survival rates after treatment with imatinib (5:37).  Types of GIST (9:00). Mutation type and prognosis (10:00).  Adjuvant treatment (13:00).  Risk factors for GIST return after initial treatment (17:45).  Micro-GISTs (18:30).  Effects of imatinib treatment (21:00).  Sunitinib and its effectiveness (25:20). Regorafinib and its effectiveness (27:15).  Ripretinib and its effectiveness (28:00).  Avapritinib and its effectiveness (29:20).  Current trials (31:00).

Marion OliverThe Psychological impact of Diagnosis and Treatment of GIST

Physical, psychological and behavioural impacts on individuals and families.  Coping strategies.  Interactions with others after diagnosis.  What to do to improve mental health and wellbeing.  Cognitive Behavioural Therapy and other approaches.

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