Quality of life and young adults in focus at the third Saudi Arabia CML Discussion

On Wednesday 7 October, the iCMLf hosted its third Regional Discussion Group for Saudi Arabia. Approximately 45 hematologists from across the Kingdom joined international experts to look at two closely linked themes: quality of life for people living with CML, and managing CML in young adults.

The discussion brought together Dr Ibraheem Motabi from King Fahad Medical City, Riyadh and Professor Massimo Breccia from Sapienza University of Rome, Italy, for the quality of life session, alongside Dr Ihab El-Hemaidi from Princess Norah Oncology Centre, King Abdulaziz Medical City, Jeddah and Professor Jane Apperley from Hammersmith Hospital, Imperial College London for the management of young patients. As with the two previous CML discussions in this series, real clinical cases and open discussion formed the basis of the learning. Across both topics, the discussions covered treatment tolerability, adherence, quality of life, treatment free remission (TFR), pregnancy and the individual circumstances of younger patients.

#1: Quality of life in patients with CML

Led by Dr Motabi and Professor Breccia, the session explored how treatment intolerance and patient characteristics can shape long-term CML management. Dr Motabi presented a complex case of a patient who experienced intolerance to multiple TKIs before achieving a deep molecular response with asciminib, while Professor Breccia discussed a patient-centred approach to treatment selection, highlighting the role of comorbidities, quality of life and TFR.

Key discussion points

• TKI selection should consider comorbidities and the individual profile of each patient. Pleural effusion and pulmonary arterial hypertension are key considerations with dasatinib, and cardiovascular, pulmonary and renal comorbidities can influence the choice of TKI.
• Tolerance rather than response can be the main issue in some patients. The case discussed involved intolerance to several TKIs, with repeated treatment interruptions, before a deep molecular response was achieved with asciminib.
• Intolerance can affect adherence and quality of life. The discussion highlighted that fatigue can limit work and daily activities, that physicians may underestimate symptom burden and that in the case presented quality of life was assessed through simple questioning rather than formal tools.
• Dose reduction, treatment interruption and rechallenge were discussed as ways to manage intolerance, with steroids and diuretics used before switching treatment. Dr Motabi described starting treatment at the standard dose in current practice, while dose reduction was discussed for patients with a stable deep response.
• TFR is an important goal, particularly for younger patients. Different ways for a clinician to approach the conversation were described, from raising TFR at the first visit to building up to TFR over time while avoiding unrealistic expectations. It was noted that some patients decline TFR.
• Hematological toxicity should be managed according to its grade. Dose reduction or treatment interruption were discussed for thrombocytopenia and neutropenia, depending on severity.

Take-home message: Effective CML management requires an individualised approach that balances molecular response with treatment tolerability, comorbidities and quality of life. Understanding each patient’s priorities and treatment experience can guide appropriate TKI selection, long-term adherence and realistic discussions around TFR.

#2: Management of young CML patients

The second session, led by Dr El-Hemaidi and Professor Apperley, explored the particular challenges of managing younger patients with CML. Cases highlighted treatment adherence in young adults and the management of CML during pregnancy and the discussion emphasised the need to understand individual patient circumstances, building trust and adapting treatment strategies to maintain long-term disease control while addressing patients’ personal and reproductive goals.

Key discussion points

• Adherence is particularly important in younger patients with CML. Patients with more than 90% adherence have a higher probability of achieving major molecular response (MMR), while non-adherence is associated with suboptimal responses, incomplete cytogenetic responses and lower event-free survival.
• Communication and the doctor-patient relationship are key factors in adherence. Younger patients generally prefer to be informed rather than instructed and understanding why a patient is not taking their medication can help address individual concerns and build trust.
• Adherence strategies should involve the wider healthcare team and practical planning. Clear information about dosing, multidisciplinary team input, patient handouts, prescription renewals, pill boxes, calendars, mobile phone alarms and support from family and friends can help patients take their medication regularly.
• Younger patients may face individual concerns that affect their engagement with CML treatment; study, relationships, disclosure, fear of dying, employment, insurance, housing and travel can all affect younger patients. Clinical nurse specialists can provide additional follow-up and support.
• CML management during pregnancy should consider disease control, the fetus and the patient’s concerns. 
• Patients diagnosed with CML during pregnancy can be managed with monitoring and treatment according to disease control and individual circumstances. In young, low-risk patients, observation may be possible. Interferon can be used when blood counts need to be controlled, while TKI treatment during pregnancy is generally avoided, although TKIs later in pregnancy may be considered when the benefits outweigh the risks.
• For patients planning pregnancy, a deep molecular response (DMR) can provide the possibility of TFR prior to pregnancy. Ideally, patients should have been on treatment for an extended period of time and have maintained DMR for two years, although the woman’s wish for pregnancy, family circumstances and societal pressure may affect the timing.
• Loss of MMR is common after treatment discontinuation in patients stopping in MMR, while patients in DMR have a higher chance of remaining in TFR. 

Take-home message: Managing younger patients with CML requires an individualised approach that considers adherence, treatment goals and life circumstances. Building trust and open communication can encourage long-term adherence and enable shared decisions around treatment, pregnancy and TFR.

In summary

The third Saudi Arabian iCMLf Regional Discussion Group highlighted once more the value of combining regional experience with international expertise and real-world case discussions. From managing treatment intolerance to supporting younger patients with adherence, TFR and pregnancy, the discussions emphasised the need to adapt CML management according to each patient’s comorbidities, priorities and circumstances. 

The discussion also reinforced the role of trust, open communication and shared decision-making. Understanding patients' concerns and personal goals can help guide treatment decisions, including around pregnancy and TFR.

Thanks to Novartis for supporting the Saudi Arabia Regional Discussion Group series.