Why are Online Communities a Good Idea?

• A new diagnosis can be a scary, and lonely, time.
• Online communities like CLLANZ, HealthUnlocked, and Patient Power are helping people come together, and cope with complex chronic illnesses such as CLL.
• The patients’ shared experiences and knowledge of their condition, hospitals, healthcare services and drugs is leading to improvements in patient care, both by themselves, and by their carers, and their doctors.
• Knowledgeable patients become their own advocates and ask questions of their doctor, forming a partnership approach.

• Most common adult leukaemia
• Most patients are older than 65
• Cancer of the immune system affecting B-cells
• Can present with a weak immune system
• Each patient’s CLL is different
• Most patients will, often initially, not require treatment. Watch and wait (and worry)
• Most new therapies have improved the prognosis of CLL, but it still remains a chronic condition that can only rarely be cured

• All patients at diagnosis

-Flow cytometry (via blood and / or bone marrow) to confirm CLL diagnosis

• Informative for prognosis and / or therapy determination

-Del17p, and del11q.  These portend for more aggressive disease

-Mutated / unmutated VH gene status assessment (not yet available in New Zealand).

-No CT scan unless symptoms are present:  PET scan can be helpful if Richter’s suspected

• Bone marrow biopsy and aspirate not necessary in absence of cytopenias