How will I know if I need treatment?

Treatment is usually only started if you show signs and symptoms of disease progression.

• Evidence your bone marrow is unable to keep up with your body’s need for healthy blood cells – measured by the development of, or worsening of, anemia (low red blood cell counts) and/or thrombocytopenia (low platelet counts).
• Autoimmune anemia and/or thrombocytopenia that doesn’t respond to standard medications.
• Massive spleen, progressive spleen enlargement, or an enlarged spleen that is causing symptoms.
• Massive lymph nodes (at least 10 cm in longest diameter), progressive lymph node enlargement or large lymph nodes that are causing symptoms.
• Increase in number of lymphocytes of more than 50% over a 2-month period or lymphocyte doubling time (LDT) of less than 6 months.
• ‘B’ symptoms, defined as any one or more of the following disease-related symptoms or signs:
  • unintentional weight loss of 10% or more within the previous 6 months;
  • increased number of infections to areas including the lungs, skin, kidneys, and other sites, due to low blood counts of neutrophils;
  • significant fatigue (inability to work or perform usual activities);
  • fevers higher than 38.0^oC for 2 or more weeks without other evidence of infection; or
  • heavy night sweats.

Why is it important to frequently stay in touch with your medical team during Follow-Up?

During the watch and wait period, you will meet regularly with your medical team to monitor changes in your disease and overall health. At these appointments, your doctor will examine you, do blood tests and may do other tests. They will also ask how you are feeling and about any symptoms you have.

The results of exams and blood tests over time will help your doctor determine if you need treatment and the type of treatment you should have.

What signs and or symptoms are important to monitor in between appointments with my medical team?

Between check-ups, you should keep track of:

• loss of appetite and weight loss
• fevers or drenching sweats
• worsening fatigue
• widespread itching, without any skin problems
• abdominal pain or discomfort due to pressure or bloating
• shortness of breath or chronic cough
• one or more of your currently enlarged lymph nodes begins growing more quickly
• new lymph nodes begin to swell and grow

These symptoms might be due to something else, such as an infection, so your medical team may suggest you wait a week or so to see if things settle down. If the symptoms are not related to CLL, they may resolve or require other treatment. If they are CLL-related, your medical team will discuss treatment options with you. In all these cases you are now in the “close monitoring” stage because treatment may be required.

If you are dealing with troubling symptoms, it is better to seek advice rather than wait to see if the symptoms become worse. Don’t wait for your next scheduled appointment to contact your medical team about an important issue.

This tool can help you track your symptoms to share with your medical team at your appointments.

What can I do to help myself?

There is no evidence to suggest that you can do anything yourself to keep your CLL from progressing. However, as you might need treatment in the future, you should prepare for this by getting yourself as healthy as possible. This might mean making changes to your lifestyle, such as:

• eating a healthy diet and trying to maintain a healthy weight
• not smoking
• limiting your alcohol intake
• doing regular exercise – this will also help with fatigue

You might also want to think about:

• reducing your stress levels
• finding time for the things you enjoy doing, such as your hobbies, travelling or seeing family and friends
• learning more about your CLL so that you will be able to make an informed choice when you do need treatment