Patient education: Hairy cell leukemia (The Basics)

What is hairy cell leukemia? — Hairy cell leukemia is a rare type of blood cancer that grows very slowly.

Blood is made up of different types of cells. These cells are made in the center of your bones, in a part called the bone marrow. When people have hairy cell leukemia, their bone marrow makes abnormal blood cells. These abnormal blood cells grow out of control, get into the blood, and travel around the body. Sometimes, these cells collect in certain parts of the body.

When the bone marrow makes abnormal blood cells, it does not make enough of the normal blood cells that a person's body needs. This can cause symptoms.

What are the symptoms of hairy cell leukemia? — Some people with hairy cell leukemia have no symptoms, especially when it is in the early stages. People might find out that they have it after they have a routine exam or blood test.

When hairy cell leukemia causes symptoms, they can include:

●Belly pain (because an organ called the spleen gets very big)

●Feeling very tired or weak

●Losing weight without trying to

●Bleeding or bruising more easily than normal

●Getting sick from infections more easily than normal

These symptoms can also be caused by conditions that are not hairy cell leukemia. But if you have these symptoms, let your doctor or nurse know.

Is there a test for hairy cell leukemia? — Yes. Your doctor or nurse will talk with you, do an exam, and order a few different blood tests. They will also order a bone marrow biopsy. For this test, a doctor takes a very small sample of your bone marrow. Then, another doctor looks at the cells under a microscope to see if abnormal (cancer) cells are present.

How is hairy cell leukemia treated? — Treatment depends on whether you have symptoms or not. If you do not have any symptoms, you will not need treatment right away. But your doctor will follow your condition closely by doing exams and blood tests until treatment is needed.

When treatment is needed, it usually involves chemotherapy. In some cases, an "antibody" medicine is also added:

●Chemotherapy – Chemotherapy is the medical term for medicines that kill cancer cells or stop them from growing. Doctors can use different chemotherapy medicines to treat hairy cell leukemia. Your doctor will work with you to choose the medicine that is right for you.

●Antibodies – Antibodies are proteins in your blood. Your immune system makes them to help your body fight infections. But there are other types of antibodies that are created in a lab and used as medicine. They find and kill cancer cells.

When people have these treatments, they can get sick from infections more easily than normal. Because of this, it's important to wash your hands often and stay away from people who are sick. Let your doctor or nurse know right away if you get a fever.

What happens after treatment? — After treatment, your doctor will check you every so often to see if your cancer comes back. Follow-ups include talking with your doctor, exams, and blood tests. Sometimes, your doctor will also do a bone marrow biopsy.

You should also watch for the symptoms listed above. Having these symptoms again could mean that your cancer has come back. Tell the doctor or nurse if you have any symptoms.

What happens if the chemotherapy doesn't work or the leukemia comes back? — If the chemotherapy doesn't work or the hairy cell leukemia comes back, your doctor can try other treatments. These can include:

●More chemotherapy – You might get the same chemotherapy medicine that you got before, or you might get a different kind.

●Antibodies – If you had treatment with antibodies before, you might get the same kind, or you might get a different kind.

●Targeted therapy – These are medicines that work only on cancers with certain characteristics.

●Surgery to remove the spleen

What else should I do? — Follow all of your doctor's instructions about visits and tests. It's also important to talk to your doctor about any side effects or problems you have during treatment.

Getting treated for hairy cell leukemia involves making many choices, such as what treatment to have and when.

Always let your doctors and nurses know how you feel about a treatment. Any time you are offered a treatment, ask:

●What are the benefits of this treatment? Is it likely to help me live longer? Will it reduce or prevent symptoms?

●What are the downsides to this treatment?

●Are there other options besides this treatment?

●What happens if I do not have this treatment?

More on this topic

Patient education: Leukemia in children (The Basics)
Patient education: Chronic lymphocytic leukemia (CLL) (The Basics)
Patient education: Medical care during advanced illness (The Basics)
Patient education: What are clinical trials? (The Basics)
Patient education: Splenectomy (The Basics)

Patient education: Chronic lymphocytic leukemia (CLL) in adults (Beyond the Basics)