Time Off Treatment in CLL – Clinical Control and Patient Priorities in Fixed-Duration Treatment

On 11 June 2026, the European CLL Association (ECLLA) hosted a hybrid multi-stakeholder panel discussion alongside the European Hematology Association (EHA) Congress in Stockholm, Sweden. The event brought together clinicians, nurses, psycho-oncology experts, patient advocates, care partners, policy specialists, and representatives from patient organisations to explore one of the most important emerging topics in Chronic Lymphocytic Leukemia (CLL): life during treatment-free periods.

As advances in fixed-duration and time-limited treatment approaches continue to transform CLL care, increasing numbers of patients are experiencing meaningful periods off treatment. While clinical outcomes remain critically important, the panel focused on a broader question: what does time off treatment mean for patients, care partners, healthcare professionals, and healthcare systems?

A European Multi-Stakeholder Discussion

Moderated by Denis Costello, Director of CML Advocates Network, the panel featured contributions from:

• Dr Talha Munir, Leeds Teaching Hospitals NHS Trust
• Dr Kostas Stamatopoulos, Institute of Applied Biosciences, CERTH
• Prof Amanda Kracen, National College of Ireland
• Eugene Beirne, St James’s Hospital Dublin
• Monica Racovita, Myeloma Patients Europe
• Felice Bombaci, Patient Advocate and CLL Care Partner
• Jan Rynne, European CLL Association (ECLLA)

The discussion explored the clinical, emotional, and practical realities of treatment-free periods in CLL, including quality of life, psychological wellbeing, monitoring, communication, shared decision-making, and long-term survivorship.

Strong Participation Across Europe

The event attracted broad participation from across the European CLL community. A total of 32 participants attended the session in person in Stockholm, while a further 26 participants joined virtually from 13 European countries, representing predominantly patient advocacy organisations and ECLLA member groups. The hybrid format enabled meaningful engagement from across Europe and ensured that the voices of people living with CLL remained central to the discussion.

Key Themes and Insights

Several important themes emerged during the discussion:

• The benefits of treatment-free periods extend beyond clinical outcomes and should also be evaluated through the lenses of quality of life, psychological wellbeing, communication, monitoring, and shared decision-making.
• Patients require clearer information and better support when transitioning into treatment-free periods.
• Emotional wellbeing and fear of relapse remain important considerations, even when treatment outcomes are positive.
• Nurses, care partners, and patient organisations play a critical role in supporting patients throughout monitoring and survivorship phases.
• A more holistic approach to CLL care is needed, integrating clinical effectiveness with patient experience and long-term quality of life.

From Discussion to Action

The Stockholm panel marked the launch of ECLLA’s broader initiative on time-limited treatment in CLL. Insights generated during the discussion will inform the development of:

• A European Insight Paper
• The educational video series “Voices on Time Off Treatment in CLL”

Together, these outputs will help translate expert perspectives into practical resources for patients, healthcare professionals, patient organisations, and policy stakeholders across Europe.

Acknowledgements

ECLLA would like to sincerely thank all panellists, attendees, patient advocates, healthcare professionals, care partners, and partner organisations who contributed to this important discussion and helped strengthen European dialogue on the future of CLL care.

This initiative is supported by: