Chronic lymphocytic leukemia (CLL) is a slow-growing cancer that affects B lymphocytes, a type of white blood cell. It can be hard to spot at first, as many people feel healthy in the early stages, even as changes are happening inside their bone marrow. Knowing what signs and symptoms to watch out for can help you catch problems early.

Many people use the terms “symptoms” and “signs” to mean the same thing, but they have different meanings. A symptom is something you feel, like pain or fatigue. A sign is something that can be observed or measured by a doctor, like a rash or swollen lymph nodes.

In this article, we’ll discuss the main signs and symptoms of CLL, what they mean, and when to contact your doctor.

5 Symptoms of Chronic Lymphocytic Leukemia

About 50 percent to 75 percent of people with CLL don’t have symptoms when they’re first diagnosed. Symptoms often appear later as CLL gets worse.

1. Fatigue

Extreme tiredness caused by CLL is sometimes called cancer-related fatigue. This type of exhaustion can affect you physically, mentally, or emotionally. Unlike regular tiredness, it doesn’t get better with sleep and rest.

2. Shortness of Breath

Shortness of breath related to CLL may start suddenly or get worse over time. You may get winded doing simple things, like walking across a room or climbing a few steps. Shortness of breath in CLL is usually caused by anemia, which happens when you have fewer red blood cells to carry oxygen. Contact your doctor if you’re experiencing any new or worsening shortness of breath.

3. B Symptoms

B symptoms are whole-body symptoms that are not caused by something else, like an infection. They can be a sign that CLL is getting worse and may mean it’s time to start CLL treatment​.

B symptoms associated with CLL include:

• Fever — A temperature of 100.4 degrees Fahrenheit (38 degrees Celsius) or higher that lasts two weeks or more without infection
• Weight loss — Losing more than 10 percent of your body weight within six months without trying
• Night sweats — Severe sweating at night that lasts more than a month without infection

These symptoms can be a sign that CLL is active, which means the CLL cells are growing or starting to affect your blood counts or organs. Tell your doctor about any of these symptoms.

4. Malaise

Malaise, meaning a general feeling of being unwell, can also happen in people living with CLL. This general, overall feeling of unease or illness can be another telltale symptom when paired with other common symptoms of CLL.

5. Stomach Fullness or Pain

People with CLL may sometimes feel full or experience pain in the stomach area. It often happens after eating only a small amount of food. It’s often caused by enlarged organs, such as the spleen or liver.

Although more than half of people with CLL don’t have any symptoms when diagnosed, symptoms often appear later, as CLL gets worse.

These five symptoms can also be caused by other health conditions besides CLL. If you’re experiencing any of them, your doctor will ask questions and may run tests to determine the cause.

Signs of Chronic Lymphocytic Leukemia

Signs of CLL are changes that can be measured by a doctor on physical examination or through medical tests. Often, CLL is diagnosed by accident during routine blood work before symptoms appear​.

1. Too Many White Blood Cells

The first sign of CLL is usually lymphocytosis, which means high levels of lymphocytes. High white blood cell counts can be a sign that those white blood cells are abnormal and aren’t working properly.

2. Low Levels of Normal Blood Cells

People with CLL often have low levels of healthy blood cells. First, leukemia cells build up in the bone marrow. Bone marrow is the spongy tissue inside bones where new blood cells are made. As these cancerous cells multiply, they crowd out normal blood-forming cells. This means there’s less space for healthy white blood cells, red blood cells, and platelets.

CLL can also weaken the immune system. Normally, immune cells produce antibodies — proteins that help fight infection. However, in CLL, immune cells sometimes make abnormal antibodies that kill the body’s healthy blood cells. This can also lead to low blood cell counts, a common sign of CLL.

Low Healthy White Blood Cell Levels

People with CLL often have fewer healthy white blood cells. When neutrophils, a type of white blood cell, are low, the condition is called neutropenia. Some CLL treatments, including chemotherapy and newer types of targeted therapy, can lower infection-fighting white blood cells.

As CLL progresses, some people develop an enlarged spleen, called splenomegaly.

White blood cells help the body fight infections. In CLL, there are too many abnormal white blood cells, but these cells don’t work properly. At the same time, there are fewer healthy white blood cells, making it harder for the body to fight infections.

People with CLL are at risk for many types of infections, including:

• Bacterial infections, such as pneumonia, skin infections, or sinus infections
• Viral infections, such as the flu or reactivated herpes viruses, like shingles or cold sores

Both bacterial and viral infections can become serious if not treated. Signs and symptoms of an infection may include:

• Fever
• Chills or sweating
• Cough
• Shortness of breath
• Abdominal pain
• Pain or sores around the anus
• Mouth sores, a toothache, or a sore throat
• Burning sensation or pain while urinating

Reduced Levels of Red Blood Cells

Many people with CLL develop anemia — low red blood cell counts. Red blood cells carry oxygen to tissues throughout the body. Without enough red blood cells, people may experience symptoms like fatigue, weakness, dizziness, shortness of breath, or an irregular heartbeat.

Low Platelet Counts

Thrombocytopenia, low platelet levels, is another sign of CLL. Platelets are tiny cell fragments that help your blood clot and stop bleeding. People with thrombocytopenia may bruise easily and have bleeding problems, such as nosebleeds, bleeding gums, or heavy menstrual periods.

3. Splenomegaly

As CLL progresses, some people develop an enlarged spleen, called splenomegaly. The spleen is an organ in the abdomen that removes old blood cells and stores an extra supply of healthy blood cells. When the spleen gets bigger, it can cause symptoms, including:

• Feeling full after eating small amounts of food
• Experiencing pain in the upper-left area of the abdomen (belly)
• Bleeding easily

4. Swollen Lymph Nodes

Enlarged lymph nodes are a common CLL sign. Lymph nodes are small, bean-shaped structures found throughout the body. They’re part of the immune system and help filter harmful substances and fight infections. Swollen lymph nodes feel like hard lumps that may continue to grow larger over time. People often first notice swollen lymph nodes in the neck, armpit, or groin.

Side Effects of Chronic Lymphocytic Leukemia Treatments

Treatments for CLL can cause other health problems, and some may look like CLL symptoms or make them worse. People undergoing treatment for CLL may experience:

• Nausea, with or without vomiting
• Diarrhea or constipation
• Fatigue
• Hair loss
• Frequent infections
• Heartburn
• Aches and pains
• Rash
• Sores in or around the mouth

Different CLL treatment options can cause different side effects. Chemotherapy drugs often cause more severe side effects.

Targeted therapy drugs work differently. These drugs are designed to attack cancer cells more directly by focusing on specific proteins or pathways inside the leukemia cells. Because they work differently from chemotherapy, they have their own set of risks and can still cause serious health problems. Side effects depend on the exact drug and treatment plan. Common types of targeted therapy for CLL include:

• Kinase inhibitors, such as BTK inhibitors and PI3K inhibitors
• BCL-2 inhibitors
• Monoclonal antibodies, a type of targeted immunotherapy

Talk to your doctor to understand the potential side effects of your specific treatment plan.

Managing CLL Symptoms, Signs, and Side Effects

Health problems caused by CLL and its treatments can be managed with supportive care, including palliative care. This type of care is often part of an active CLL treatment plan to help relieve symptoms and improve quality of life.

Palliative care focuses on treating the signs and symptoms of chronic illnesses like cancer. Though some people confuse it with hospice (end-of-life) care, palliative care can be given at any stage of the disease, no matter the outlook.

A palliative care team offers emotional, practical, and spiritual support while helping to manage leukemia symptoms and treatment side effects. If you’re interested in learning more about palliative care, talk to your oncology (cancer) care team.

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