Chronic lymphocytic leukemia (CLL) is a slow-growing type of blood cancer. It may not cause symptoms right away. If you experience any signs or symptoms that could be CLL, talk to your doctor as soon as you can. Your doctor can help you understand what is causing your symptoms.

Although many people use the terms “symptoms” and “signs” to mean the same thing, they have slightly different meanings. A disease symptom is an internal experience that can’t be directly felt or seen by another person. Symptoms include feelings of nausea or pain. On the other hand, a disease sign is evidence that can be observed or measured by a doctor. Examples of signs include a fever or a rash. Many times, signs and symptoms are closely linked.

Symptoms of Chronic Lymphocytic Leukemia

About 50 percent to 75 percent of people with CLL don’t have any symptoms at the time of diagnosis. Symptoms often appear later, as CLL gets worse. Symptoms can include:

• Tiredness
• Shortness of breath
• A group of symptoms called “B symptoms,” which consist of fever, night sweats, and unexpected weight loss
• Malaise (general feelings of discomfort or unease)
• Feelings of fullness after eating small amounts of food

These symptoms can also be related to other health conditions besides CLL. If you are experiencing any of these symptoms, your doctor will ask you more questions and may run other tests in order to determine the cause of your symptoms. Occasionally, there is also a decrease in other types of white blood cells.

Signs of Chronic Lymphocytic Leukemia

Signs of CLL include things that can be seen by a doctor or measured by tests. Often, CLL is diagnosed after routine tests uncover CLL signs.

Too Many White Blood Cells

Often, the first sign of CLL is lymphocytosis (high levels of white blood cells). A doctor may see this unusual result after running blood tests during a yearly checkup or while doing tests related to a different health concern. When levels of white blood cells are high, it could be a sign that those white blood cells are abnormal and do not work properly.

Low Levels of Normal Blood Cells

There are a few reasons why people with CLL often don’t have enough healthy blood cells. First, leukemia cells take over the tissue inside of bones where new blood cells are made. This tissue is called bone marrow. Inside of the bone marrow, the cancer cells crowd out the body’s normal blood-making cells.

Additionally, CLL can prevent an immune system from working properly. 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. As a result, one common sign of CLL is low blood cell counts.

Low White Blood Cell Levels

CLL often leads to leukopenia (low levels of healthy white blood cells). If a person has low levels of a specific type of white blood cell called a neutrophil, this sign may also be called neutropenia.

White blood cells are responsible for fighting infections. Because people with CLL have both high levels of abnormal white blood cells, and low levels of healthy white blood cells, they can’t fight off germs as well. For this reason, CLL often leads to infections. These may start as bacterial infections, including pneumonia (lung infection), skin infections, or sinusitis (inflammation in the sinuses). If not under control, CLL can also eventually cause viral infections. Symptoms of an infection include:

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

Reduced Levels of Red Blood Cells

Many people with CLL have anemia (low red blood cell counts). Red blood cells carry oxygen to tissues around 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 levels of platelets) is another sign of CLL. Platelets are small pieces of cells that clot the blood after injury. People with thrombocytopenia often bruise easily and have bleeding problems, such as nosebleeds, bleeding gums, and heavy menstrual periods.

Splenomegaly

During later stages of CLL, as the disease gets worse, a person may develop splenomegaly (an enlarged spleen). The spleen is an organ in the abdomen that removes old blood cells, stores an extra supply of healthy blood cells, and makes new blood cells. When the spleen grows larger, it can cause additional symptoms. People may feel pain in the left upper part of the abdomen or feel full after only eating a little.

Swollen Lymph Nodes

Enlarged lymph nodes may also occur in more advanced stages of CLL. Lymph nodes are small glands that are part of the immune system. Swollen lymph nodes feel like hard lumps that may increase in size. People often first notice swollen lymph nodes in the armpits, neck, or groin.

Treatment Side Effects

Chronic lymphocytic leukemia treatments can cause additional health problems. People who are undergoing treatment for CLL may experience:

• Nausea and vomiting
• Diarrhea
• Constipation
• Extreme tiredness
• Hair loss
• Frequent infections
• Heartburn
• Mouth sores

Different CLL treatment options may lead to different side effects. Chemotherapy drugs tend to cause more severe side effects. Targeted therapy drugs, including kinase inhibitors or monoclonal antibodies, are more likely to lead to milder side effects. Talk to your doctor to learn more about what side effects you are most likely to experience while undergoing different treatments.

Managing CLL Symptoms, Signs, and Side Effects

The health problems caused by CLL and its treatments can be managed with palliative care, which is often incorporated into the active treatment plan of CLL. Palliative care is specifically focused on treating the signs and symptoms of chronic illnesses like cancer. Palliative care is not the same as end-of-life care — it is used to treat people during all disease stages no matter the prognosis. A palliative care team provides emotional, practical, and spiritual support. One important aspect of palliative care is figuring out how to manage leukemia symptoms and side effects. Talk to your cancer care team if you would like to learn more about palliative care.

Talk With Others Who Understand

MyLeukemiaTeam is the social network for people with leukemia and their loved ones. On MyLeukemiaTeam, members come together to ask questions, give advice, and share their stories with others who understand life with leukemia.

Are you living with chronic lymphocytic leukemia? Share your experiences in the comments below, or start a conversation by posting on your Activities page.