CLL is a rare cancer: about 21,000 people per year in the United States are diagnosed with CLL.
The exact cause of CLL is unknown, but some risk factors include:
- Age: CLL is more common in older adults. The median age of diagnosis is 70.
- Race: CLL is most common among people who are white, followed by people who are black.
- Sex: CLL is nearly twice as common in men than in women.
CLL is not believed to be hereditary (passed from one generation to the next).
Symptoms vary from person to person depending on how the disease develops, but many people with CLL may not have any symptoms at all.
You may have:
- Swollen glands
- Repeated infections or difficulty shaking off an infection
- Extreme tiredness, or fatigue. One of the causes of fatigue is anemia, which is caused by not having enough red blood cells
- Bleeding or bruising easily
- Enlarged spleen, which may cause pain or a feeling of fullness
- Night sweats
There is no cure for CLL, but it is a treatable condition. There are available treatments that your doctor may prescribe, and there are even more potential treatments currently being researched. These options may make it possible to keep the disease under control for long periods of time. Many people with CLL can have a normal lifespan and a good quality of life.
What treatment you need – or whether you need treatment at all – depends on your age, your lab tests, and current health condition. Because CLL grows slowly, some people may never need any treatment. Other people may need treatment to reduce the signs and symptoms of CLL.
Your doctor may recommend what is called “active observation” or “watch and wait” after your diagnosis. This means that treatment doesn’t start right away. Instead, your CLL is monitored with visits and tests. Watching and waiting is not the same as doing nothing; there is a clear plan to act if tests show that the CLL is changing.
When it is time to start treatment, it is important to know that CLL has more than one treatment choice. Each treatment works in different ways, and each has its own pros and cons: how it has been studied, what side effects it may cause, how and how often the treatment is given, and how long you stay on it.
Ask your doctor which option might be the best fit for you, based on your overall health, daily activities, and expectations for long-term control of your CLL.
Targeted Therapy Options
The most common type of CLL treatment is called “targeted therapies,” which block certain proteins – such as BTK (Bruton tyrosine kinase), BCL-2 (B-cell lymphoma 2), CD20 (B-lymphocyte antigen CD20), or PI3K (Phosphoinositide 3-kinase) – involved with cancer growth.
For people with CLL who are newly diagnosed the most common treatments may include BTK inhibitors alone or in combination with a BCL-2 inhibitor and/or an anti-CD20 treatment.
In most cases, chemoimmunotherapy is not recommended for patients anymore.
Depending on your lab results, some treatments may be more appropriate than others.
How Do I Choose Between Continuous Therapy & Fixed Duration Treatment Options?
Continuous Therapy
Taken at home by mouth with a daily routine continuously until you or your doctor stops treatment.
Fixed Duration Treatments
Fixed duration treatments are taken for a set period of time and then stopped.
- Fixed duration treatments may require several visits during the beginning of treatment, regular trips to the clinic for infusions, and potential hospitalization for observation of high-risk patients, which is usually defined by having a large number of lymphocytes or large lymph nodes.
- For a guide on how to speak with your doctor about this, see here.
Other less common treatment options may include chemotherapy, other targeted therapies, cellular therapy (such as CAR-T therapy), or a stem cell transplant.
Clinical Trials
In some cases, you and your doctor may decide that you may be a good candidate for a clinical trial (a research study to evaluate the safety and efficacy of a potential new medicine).
Please visit Clinical Trials FAQs to learn more.
Whether you can take a break from fixed duration treatment is a conversation you will need to have with your doctor. If you are on a fixed duration therapy your doctor may want to test you for “measurable residual disease” (MRD), which refers to detecting a small number of cancer cells that may remain in your body after treatment, even when in remission. If your MRD is not detectable, your doctor may agree to pause your treatment.
It is very important to consult with your doctor before taking a break from treatment to ensure that taking a break will not cause your disease to progress. Always discuss with your care team if you are having trouble taking your medication.
