2023 Meetings reports

There were 2 meetings this year:  London, UK (April 2023) | Leeds, UK (October 2023) - see below...

London, UK meeting - April 2023

The first meeting of the year was held in London and we were joined by patients, carers and supporters to see and hear presentations from our specialist friends:

Overview
  1. Dr Ramesh Bulusu - The Cambridge Experience of managing GISTs
  2. Andrea Napolitano - Recently completed and ongoing trials
  3. Dr Ramesh Bulusu - PAWS-GIST Update
  4. Tony Manual, Trustee - Combined Q&A session for the first two presentations

1.) Dr Ramesh Bulusu – Generic Imatinib: The Cambridge Experience of managing GISTs (London 2023)

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).

2.) Dr Andrea Napolitano - Recently Completed & Ongoing Clinical Trials (London 2023)

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).

3.) Dr Ramesh Bulusu - PAWS-GIST Update (London 2023)

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).

4.) Tony Manuel - Q&A Session (London 2023)

A combined Q&A session for the first two presentations.

Leeds, UK 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.

Overview
  1. Dr Alex Lee, Consultant Medical Oncologist. The Christie - Side Effects Management
  2. 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
  3. Marion Oliver B.A.; Dip.Clin.Psych.; A.F.Ps.S. The Psychological impact of Diagnosis and Treatment of GIST
  4. Tony Manual, Trustee - Combined Q&A session for the first two presentations and an update on developments in GIST Cancer UK.
  5. Mark Atlay, Trustee - Gist Cancer UK Strategy & Volunteering

1.) Dr Alex Lee, Consultant Medical Oncologist. The Christie - Side Effects Management (Leeds 2023)

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).

2.) 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 (Leeds 2023)

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).

3.) Marion Oliver.  The Psychological impact of Diagnosis and Treatment of GIST (Leeds 2023)

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.

4.) Tony Manual - Combined Q&A session (Leeds 2023)

Combined Q&A session for the first two presentations and an update on developments in GIST Cancer UK.

5.) Mark Atlay - Gist Cancer UK Strategy & Volunteering (Leeds 2023)