An initial diagnosis of chronic lymphocytic leukemia (CLL) may be surprising because it often doesn’t present with physical symptoms.
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 many years. You’ll have regular check-ups to monitor your blood cell counts during this time.
If your 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.
Unexplained weight loss of more than 10 percent 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 diet.
Another symptom of CLL progression is extreme fatigue and shortness of breath while doing your normal 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 above 100.4°F (38°C) that persists for weeks without any evidence of an infection. You may also wake up at night drenched in sweat.
People with CLL usually have a weakened immune system and are more vulnerable to infections. This is because there aren’t enough healthy white blood cells to fight off the infection.
Abnormal lab tests
When you visit your doctor for a check-up, your laboratory tests may come back with lower numbers of red blood cells or platelets. A low red blood cell count is known as anemia, and a low platelet count is called thrombocytopenia.
In addition, lab tests may show that your lymphocytes, a type of white blood cell, have increased by more than 50 percent in 2 months or doubled in less than 6 months.
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 most commonly located 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, and it can be difficult to predict if and when your CLL will progress. Some people experience fast progression, while others go on for years without experiencing any new symptoms.
People who are diagnosed at a higher stage of CLL are likely to progress at a faster rate. Under the Rai system of diagnosing CLL, stage 0 is considered low risk, stages 1 to 2 are considered intermediate risk, and stages 3 to 4 are considered high risk. Speak with your doctor about what your CLL diagnosis means in terms of disease progression.
In rare cases, CLL can develop into a high-grade non-Hodgkin’s lymphoma. This complication of CLL is referred to as Richter’s syndrome, or a Richter transformation. Richter’s syndrome occurs in roughly
When Richter’s syndrome occurs, people with CLL may experience a sudden and dramatic increase in symptoms, such as:
- swelling of the lymph nodes in the neck, axilla, abdomen, or groin
- unexplained weight loss
- fevers and night sweats
- increasing fatigue
- shortness of breath
- 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 hasn’t been shown to be beneficial.
An active ingredient in green tea called epigallocatechin 3 gallate (EGCG) may slow progression in the early stages of CLL according to phase I and II clinical trial results.
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 aren’t possible to prevent.
If you’ve been diagnosed with early stage CLL, follow up with your doctor regularly to monitor the status of your cancer. If you start having symptoms of CLL progression, such as unexplained weight loss, fever, night sweats, swollen lymph nodes, and significant fatigue, schedule an appointment with your oncologist or hematologist right away.