“Watch and Wait” or “Active Surveillance” – Why not now?
Why the Medical Profession Uses Watch & Wait in CLL
With frequent blood test monitoring in primary care, it is not unusual for patients to receive a diagnosis of Chronic Lymphocytic Leukaemia when their disease is in an early and asymptomatic stage. This can be daunting as they are then faced with prolonged periods of watchful waiting or “active surveillance” when many feel the natural impulse to “do something about it”. Hopefully this document will clarify the rationale for this approach.
The general principles are as follows:
1. Early treatment does not improve survival
2. Modern treatments work best when the disease is active
3. Many people never need treatment
4. Watch & Wait is active, structured care – Treatment is there when it is needed
5. It protects quality of life
6. It is the global standard of care
Chronic lymphocytic leukaemia is a slowly progressing blood cancer which is unable to be cured with current medical therapies, even when these are used early in the treatment. Early treatment does not change the natural history of the disease or provide added survival benefit. For this reason, the global approach to management of asymptomatic chronic lymphocytic leukaemia is one of surveillance. This is supported by ESMO, ASH, NCCN, and CLL specialists worldwide.
There are advantages to delaying therapy for chronic lymphocytic leukaemia. Many patients will be monitored for years or decades in early stages of CLL and around 1/3 will never require treatment for their disease. These people remain symptom free both from their CLL and from any potential toxicities they would have encountered from receiving treatment. This is the best approach to maintain patients’ health and quality of life in early stage CLL.
During this time there are some key thing patients, and the clinician should be attentive to:
A regular blood test and physical exam (lymph nodes and abdomen to feel liver and spleen) to monitor for disease progression – depending on the rate of progression of the lymphocyte count this may be once every 6 or 12 months
Be attentive to vaccination – Patients with CLL have a slightly less efficient immune system and should consider having an annual flu vaccination and covid vaccinations. The rate of Shingles infections (reactivation of the chicken pox virus) is also increased, and patients may choose to have the Shingrix (shingles) vaccine although this may not be funded for all people in New Zealand.
Regular skin checks. The prevalence of skin cancer in New Zealand is high and there is a higher rate of skin cancers in patients with CLL due to reduced surveillance of the skin by the immune system. This increases especially once patients receive treatment for CLL however it is good practice to start early with regular sunscreen and skin checks.
Maintain your general health and fitness – This is important for your general health and will enable you to receive and tolerate treatment better when and if it is required. Regular exercise, a balanced diet and ensuring your other health conditions are optimised won’t change the natural history CLL but will strongly benefit your health.
There are several lines of therapy available for treatment of CLL when it is required within New Zealand, many of which are able to be used even in patients who are frail and of advanced years, thus there is no pressing urgency to receive treatment early, even in the elderly.
Active monitoring reoccurs after treatment for CLL. Relapse is expected — but not always urgent
Many of the CLL treatment regimens are not continuous and focus of a period of deep control of the disease followed by another period of surveillance. This is of benefit. It allows patients’ immune systems to reconstitute and have a period without potential toxicity from treatment. In many cases this period of monitoring may last many years before a second line of treatment is required. For example, the median time to next treatment following first line treatment with Venetoclax and Obinatuzumab is 7.7 years.
When Treatment for CLL Becomes Necessary in New Zealand
(IWCLL criteria used by NZ haematologists)
New Zealand specialists follow the International Workshop on CLL (IWCLL) guidelines. Treatment begins when CLL is active, progressing, or affecting health.
1. Worsening blood counts (bone marrow failure)
Haemoglobin < 100 g/L
Platelets < 100 × 10⁹/L (Not due to other causes.)
2. Significant lymph node or spleen enlargement
Lymph nodes ≥ 10 cm
Spleen ≥ 6 cm below costal margin
Progressive or symptomatic enlargement
3. Rapid disease progression
Lymphocyte doubling time < 6 months (if ALC > 30 × 10⁹/L)
OR ≥ 50% increase in 2 months
4. CLL‑related symptoms (B‑symptoms)
Weight loss ≥ 10% in 6 months
Fevers ≥ 38°C for 2 weeks
Drenching night sweats for ≥ 1 month
Severe fatigue affecting daily life
5. Autoimmune complications
AIHA or ITP not responding to standard therapy.
6. Quality‑of‑life impact
Persistent pain, repeated infections, organ compression, or functional decline.
What does not trigger treatment
High lymphocyte count alone
Time since diagnosis
Mild, stable lymph node enlargement
Anxiety about the diagnosis
Presence of CLL cells in the blood
Emotional Support for People Living with CLL in New Zealand
Living with CLL affects more than blood counts — it affects how people feel, cope, and live day to day. Support is available across Aotearoa.
Chronic Lymphocytic Leukaemia Advocates New Zealand (CLL NZ)
CLLANZ has an active Facebook group where requests for support can be made.
Cancer Society
Free counselling, support groups, and practical guidance nationwide.
Leukaemia & Blood Cancer New Zealand (LBC)
Education, peer support, and one‑on‑one help from support coordinators who understand CLL.
GP and Primary Care
Mental health support, referrals, and ongoing wellbeing checks.
Counselling and Therapy
Available through community providers, private therapists, online services, and workplace EAP programmes.
Peer Support and Community
Online groups, local meet‑ups, and patient events help reduce isolation.
Hospital‑Based Support
Access to social workers, psychologists, and nurse specialists through haematology services.
Why Support Matters
“Emotional support helps people regain confidence, reduce anxiety, and feel more in control of their journey.”