What does the future hold for large granular lymphocytic leukaemia?

Date:
30 March 2019

Over 80 people attended our patient and public engagement event to find out more about the latest clinical innovations in large granular lymphocytic leukaemia (LGLL) research and the impact that this has for care and treatment.

We brought together a line-up of world-leading clinicians and researchers from The Royal Marsden and The Institute of Cancer Research, London (ICR) who discussed a wide range of key research topics, from the progress made in understanding the biology of LGLL and advances in treatment, to survivorship and nutrition.

The challenges of LGLL

Dr Dima El-Sharkawi, Consultant Haematologist at The Royal Marsden, set out the challenges that LGLL researchers are working hard to overcome, including identifying causes of the disease, uncovering new treatments and making existing treatments kinder and more effective.

You can view Dr El-Sharkawi's presentation slides, which explain the basics of LGLL, here. 

What’s new in research?

Understanding the causes of LGLL is essential in order to diagnose the disease early and develop new and more effective treatments. Consultant Haematologist Dr Sunil Iyengar and Clinical Research Fellow Dr Matthew Cross discussed the advances made in our understanding of the effects of LGLL, such as neutropenia, and how this is impacting the way patients are treated.

The comparative rarity of LGLL makes researching the condition a challenge in itself, however recent advances, such as testing patients with suspected blood disorders for mutations to the STAT3 gene, could improve the way in which LGLL is diagnosed and may lead to more targeted therapies and treatment plans.

Dr Cross discussed how collecting patient data can also help to advance our understanding of the condition and how it varies between individuals, and aims to establish an LGLL registry in the near future

 

Survivorship and shaping research

In addition to developing new treatments, it’s also essential to ensure patients have a good quality of life. Specialist nurses Tracey Murray and Lucy Whiteman discussed the importance of support systems, where patients are assessed for factors such as diet, exercise and mental health before starting treatment. This provision of information, advice, support and expertise helps patients to manage their expectations and self-care.

Patient representative, Katherine Tipple, also shared her experiences with LGLL including the route to her diagnosis and the active approach she took following her diagnosis to help inform others of this rare condition .

Involving patients in all stages of research is crucial; from identifying and prioritising key issues to helping interpret and share findings. 

If you are interested in finding out more or getting involved in shaping research, please contact patientsinresearc[email protected].