Starting active treatment
Some people go straight to active treatment after being diagnosed with chronic lymphocytic leukemia (CLL), but many people first have active surveillance for months or years. Having active treatment for CLL usually means that you are being treated with targeted therapy or chemoimmunotherapy.
You and your healthcare team may decide to start active treatment when CLL starts to show signs of progression (getting worse). These signs include:
- more than 10% weight loss in 6 months
- extreme fatigue
- fever for more than 2 weeks without any signs of infection
- night sweats for longer than 1 month
- an increasing number of CLL cells in the bone marrow that make the bone marrow not work properly, leading to anemia (lower numbers of healthy red blood cells) or thrombocytopenia (lower number of platelets in the blood)
- a spleen that is larger than normal and may be causing symptoms such as discomfort in the abdomen or a feeling of fullness
- more areas of enlarged lymph nodes in the body that cause discomfort
- an enlarged liver that causes discomfort
- the number of lymphocytes in the blood increases by more than 50% in 2 months or doubles in less than 6 months (called a rapid doubling time)
Your healthcare team will consider certain factors when recommending treatments that are right for you.
Molecular characteristics of the CLL cells
Before starting active treatment, you will have testing that looks for changes to specific chromosomes and genes on CLL cells. A key part of planning treatment is knowing whether the CLL cells have these molecular characteristics:
- del(17p), which is often described as a 17p deletion or a 17p chromosome deletion (the short arm "p" of chromosome 17 is missing)
- TP53 mutation (the TP53 gene has changed and is no longer working properly)
- unmutated IGHV (the IGHV gene has not changed)
Your healthcare team will use what the tests tell them about the CLL cells to make recommendations for your treatment plan.
If you have CLL with del(17p) or TP53 mutation, the treatment used is targeted therapy.
If you have CLL without del(17p) or TP53 mutation, your healthcare team will recommend chemoimmunotherapy or targeted therapy. Their recommendation will depend on whether the IGHV gene is unmutated or mutated, your age and your overall health.
Your overall health
Treatments for CLL such as chemoimmunotherapy can be very tough on the body and cause serious side effects. Your healthcare team may need to assess your overall health to make sure that you are healthy enough to have and tolerate aggressive treatments.
Your healthcare team will look at factors such as:
- your
performance status - the number of other health conditions you have (also called comorbidities)
- how well your kidneys are working
Factors important to you
Your healthcare team will base their treatment recommendations on the molecular characteristics of the CLL cells, your age and your overall health. They will also want to know about what is important to you when planning treatment. You may want to discuss these other important factors when developing your CLL treatment plan.
Your goals for treatment – Your goal may be to put the cancer into
How long you want to take the treatment – Time-limited treatments are only given for a specific amount of time and then stopped. (These are also called fixed-duration treatments.) Continuous treatments are taken for as long as they are effective and you are able to manage the side effects.
Your ability to make frequent trips to the hospital – Your doctor may ask you whether you can make frequent trips to and from the hospital or if a plan built around treatment at home would be better for you. Some treatments require close monitoring, so access to transportation or how far away you live from the hospital may affect your treatment decisions.
The cost of the treatment – Some drugs may be covered by your provincial or territorial health plan, but others may not. The costs of certain drugs may be covered if you have private insurance or through special drug access programs.
Side effects of treatments – Different treatments have different side effects that can affect your quality of life. Your thoughts and feelings about your ability to manage certain treatments and their side effects may impact which treatment you choose.