Chronic lymphocytic leukemia (CLL) often does not have physical symptoms until it starts to progress. Then a person may notice weight loss, fatigue, night sweats, and other changes.

At first, your doctor may recommend delaying treatment until you experience any signs of disease progression. CLL is often a slow-growing cancer, so this can be ongoing for many years. You’ll have regular checkups to monitor your blood cell counts during this time.

If CLL progresses to a more advanced stage, you may begin to experience symptoms. Symptoms tend to be mild at first and gradually worsen as abnormal cells build up in the body.

Learning what to expect during CLL progression can alert you to visit your doctor sooner and start treatment earlier.

Weight loss

Unexplained weight loss of more than 10% of your body weight over the course of 6 months or so could mean your CLL is progressing. This means that you’re losing weight when you’re not trying to.

Extreme tiredness

Another symptom of CLL progression is extreme fatigue and shortness of breath while doing day-to-day activities. This is due to fewer healthy red blood cells and more cancer cells accumulating in your body.

Fever and night sweats

As CLL progresses, you may experience an unexplained fever that persists for weeks without any evidence of an infection. You may also wake up at night drenched in sweat.

Frequent infections

People with CLL usually have a weakened immune system and are more vulnerable to infections. This is because there are not enough healthy white blood cells to fight off the infection.

Abnormal lab tests

When you visit your doctor for a checkup, your laboratory tests may show fewer red blood cells (hemoglobin) or platelets. A low red blood cell count is known as anemia, and a low platelet count is called thrombocytopenia.

In addition, lab tests can measure the number of lymphocytes, a type of white blood cell. The lymphocyte count will likely be higher than usual but does not necessarily indicate the treatment is needed unless it doubles in a period of 6 months or less.

Enlarged spleen

The spleen is an organ that filters your blood as part of the immune system. As abnormal cells build up in the blood, the spleen can become swollen. An enlarged spleen can cause abdominal discomfort or a feeling of fullness in the stomach area.

Swollen lymph nodes

The lymph nodes, which are part of the immune system, are located throughout the body. With CLL, they can enlarge. This tends to be most noticeable in the neck, groin, and near your armpits. High numbers of CLL cells can gather in the lymph nodes and cause them to swell. Swollen lymph nodes feel like a lump under the skin.

Every case of CLL is different. It can be difficult to predict if and when your CLL will progress. Some people experience fast progression, while others may not experience any new symptoms for years.

People who receive a diagnosis at a higher stage of CLL are likely to experience disease progression at a faster rate.

Under the Rai system for CLL diagnosing, stage 0 is considered low risk, stages 1–2 are considered intermediate risk, and stages 3–4 are considered high risk. Speak with your doctor about what your CLL diagnosis means in terms of disease progression.

Overall, a person with a diagnosis of CLL can expect to live between 2 and 20 more years.

In rare cases, CLL can develop into a high grade non-Hodgkin’s lymphoma. This CLL complication is referred to as Richter’s syndrome, or a Richter transformation.

Richter’s syndrome occurs in roughly 2–10% of all people with CLL or small lymphocytic lymphoma (SLL) during the course of their disease, according to the Leukaemia Foundation.

When Richter’s syndrome occurs, people with CLL may experience a sudden and dramatic increase in symptoms, such as:

  • painless swelling of the lymph nodes in the neck, axilla, abdomen, or groin
  • unexplained weight loss
  • fevers and night sweats
  • increasing fatigue
  • shortness of breath
  • dizziness
  • palpitations, in some cases
  • excessive bruising and bleeding due to low platelets

It may not always be possible to slow down disease progression, but CLL is generally a slow-progressing cancer. Currently, early treatment for low risk CLL has not been shown to be beneficial.

Richter’s syndrome may be difficult to prevent, and its causes remain unclear. The most common risk factors for Richter’s syndrome are specific genetic mutations or inherited genetic characteristics that are not possible to prevent.

What are signs that CLL is progressing?

In the early stages, CLL often has no symptoms. However, as it progresses a person may notice increasing fatigue, dizziness, night sweats, weight loss, and enlarged lymph nodes followed by enlarged liver, spleen, or both. They may also become more prone to infections.

What are the 4 stages of CLL?

There are two systems for staging CLL. The RAI classification has four stages, and the Binet classification has three.

These depend largely on the levels of platelets in a person’s blood and other biomarkers. As the stages progress, the number of platelets falls. Both methods also take into account some physical changes, such as enlargement of the lymph nodes and a swollen liver or spleen.

How long can a person live with CLL?

Depending on the stage at diagnosis and the speed at which cancer develops in an individual, a person may live between 2 and 20 years after a diagnosis, with a median survival outlook of 10 years.

If you’ve received an early stage CLL diagnosis, it’s important that you follow up with your doctor regularly to monitor your cancer status.

If you start having symptoms of CLL progression, such as unexplained weight loss, fever, night sweats, swollen lymph nodes, or significant fatigue, schedule an appointment with your oncologist or hematologist right away.