For patients with no, or just very mild symptoms, the Active Monitoring approach, sometimes called Watch and Wait, is the current standard of care.
While early treatment is advisable for most types of leukaemia, this is not the case for CLL.
Some CLL patients remain well and free of symptoms for years.
Other patients experience symptoms quite rapidly after their diagnosis, and require immediate treatment.
Active monitoring consists of regular blood tests and clinical examinations every 3-12 months in the first year, and yearly thereafter, to help with treatment decisions.
The main reasons for the Active Monitoring approach are:
- Some patients can live with CLL having a minimal impact on their life expectancy. This means that treatment is not necessary for survival.
- Front-line treatments for patients with no, or just mild, symptoms can have side effects with the possibility of treatment-related complications in the long-term. The later treatment is started the better.
The indications for starting treatment of CLL patients are defined in the 2018 International Working Group CLL criteria. At least one of the following criteria should be met:
- Weight loss of more than 10% in previous six months
- Extreme fatigue
- Fever 38°C or higher for two or more weeks without evidence of infection
- Night sweats for longer than one month
- Progressive bone marrow failure
- Autoimmune anaemia or thrombocytopenia not responding to glucocorticoids
- Progressive or symptomatic enlargement of the spleen
- Massive or symptomatic enlargement of lymph nodes
- Progressive lymphocytosis (a high level of lymphocytes) defined as an increase of lymphocytes more than 50% within two months or a doubling of lymphocytes within less than six months
Patients may be allocated a Clinical Nurse Specialist to assist them with their treatment.
Clinical nurse specialists can:
- Be a great source of medical and supportive information on CLL. Coming to terms with the Active Monitoring approach is not always easy.
- Help create a positive working relationship with the haematologists.
- Help patients to manage their CLL and lead the best life possible.