Chronic Lymphocytic Leukemia

GENERAL INFORMATION:

What is chronic lymphocytic leukemia?

• Chronic lymphocytic leukemia (CLL) is cancer in your blood and bone marrow. Bone marrow is the soft, spongy tissue inside your bone. Your bone marrow makes the cells found in your blood, including your white blood cells. Lymphocytes are a type of white blood cell that attack infections from germs called bacteria or viruses. If you have CLL, your bone marrow makes damaged lymphocytes and your body has trouble fighting infections. Your bone marrow may also stop making enough other cells, including platelets and red blood cells. Red blood cells carry oxygen to your organs and tissues so they can work properly. Your platelets help you stop bleeding when you are cut or injured.
  
  
• With CLL, damaged lymphocytes build up in your blood, bone marrow, and lymph nodes. Your lymph nodes are small organs made of tissue that fight infection. Damaged lymphocytes may also build up in your liver or spleen and make them bigger. Your liver and spleen are organs located near your stomach in your upper abdomen. There is no cure for CLL. Treatment may help your blood cells become normal again and decrease your risk of bleeding or getting infections. Treatment may also help decrease the size of your liver or spleen.

What causes chronic lymphocytic leukemia? Caregivers do not know what causes CLL. Some caregivers believe that your abnormal lymphocytes may be made by damaged genes. Genes are little pieces of information that tell your body what to do or make. You may be more likely to get CLL if someone in your family has had it. CLL is also more likely in older people. You may be more likely to get CLL if you are male, but females may also have CLL.

What are the signs and symptoms of chronic lymphocytic leukemia? You may have no symptoms during the early stages of CLL. Over time, you may start to have symptoms in different parts of your body. You may have some of the following:

• Bleed or bruise more easily.
  
  
• Get sick more often, such as having colds, coughs, or the flu.
  
  
• Low energy or fatigue (feeling very tired).
  
  
• Fever (high body temperature).
  
  
• Losing weight without trying.
  
  
• Sweating at night.
  
  
• Small lumps (swollen lymph nodes) in parts of your body, including your neck, armpits, or groin.
  
  
• Larger spleen or liver that you can feel through your skin in the upper part of your abdomen.

How is chronic lymphocytic leukemia diagnosed?

• Your caregiver will ask you about your symptoms, such as being tired or changes in your weight. He will do a physical exam. He will feel your abdomen to see if your liver or spleen is larger than normal. He will check your neck, armpits, and groin for large lymph nodes.
  
  
• CLL is diagnosed using a group of blood tests. These tests check to see if your lymphocytes are normal or damaged. Blood tests also count your white blood cells, red blood cells, and platelets. Your caregiver may use blood tests to see if you have another disease causing your symptoms. You may also have blood tests to see if you have an infection. Your blood can be taken from a blood vessel in your hand, arm, or the bend in your elbow. You may need to have blood drawn more than once.

What other tests may I need for chronic lymphocytic leukemia? Ask your caregiver for more information about the following tests:

• Bone marrow biopsy: This is when a sample of bone marrow is removed and sent to a lab for tests. The skin over your upper hipbone is first cleaned. Caregivers put numbing medicine into your skin so you will have little pain. A bandage is put on the biopsy area after the tissue sample is taken. A bone marrow biopsy may show if your bone marrow is making enough healthy blood cells. It may also help your caregiver figure out what may be causing abnormal blood tests.
  
  
• Chest x-ray: This is a picture of your lungs and heart. Caregivers use it to see how your lungs and heart are doing. You may need a chest x-ray to see if you have a lung infection, such as pneumonia. A chest x-ray may also show if your cancer has spread to your chest.
  
  
• Ultrasound: An ultrasound is a simple test that looks inside of your body. Sound waves are used to show pictures of your organs and tissues on a TV-like screen. Your caregiver may use this test to check the size of your spleen, liver, or lymph nodes.

How do caregivers plan my treatment? Your caregivers use staging to help plan your treatment. To stage your CLL, your caregivers will use information from blood tests and your physical exam. Staging information will help your caregiver see how much your CLL has affected your health and your body.

• Early stages:
  
  
  • If you are in an early stage of CLL, then you will have abnormal lymphocytes in your blood. You will also have cancer cells in your blood. You may or may not have a big liver, spleen, or lymph nodes.
    
    
  
  
• Middle stages:
  
  
  • In the middle stages of CLL, your spleen and liver may start to get bigger. You may have bigger lymph nodes in different areas of your body. You will also have abnormal lymphocytes and cancer cells in your blood
    
    
  
  
• Late stages:
  
  
  • In the late stages of CLL, your body may not make enough platelets or red blood cells. You have anemia if your body does not make enough red blood cells. You have thrombocytopenia if your body does not make enough platelets. You will have abnormal lymphocytes and cancer cells in your blood. You may or may not have a big liver, spleen, or lymph nodes.
    
    

How is chronic lymphocytic leukemia treated? You and your caregiver will decide on the best treatment for you. You might not have treatment if you are in an early stage and do not have symptoms. If you do not have treatment, then your caregiver will ask you to come back for follow-up visits. During these visits, your caregiver will give you a physical exam and do blood tests. He will check to see if you are still in the same stage. He will also decide whether treatment should be started. Your have one or more of the following treatments:

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  • Chemotherapy:
    
    
    • This medicine, often called chemo, is used to treat cancer. It works by killing tumor cells. Chemotherapy may also be used to shrink lymph nodes that have cancer in them. Once the tumor is smaller, you may need surgery to cut out the rest of the cancer.
      
      
    • Many different chemotherapy medicines are used to treat cancer. You may need blood tests often. These blood tests show how your body is doing and how much chemotherapy is needed. Chemotherapy can have many side effects. Caregivers will watch you closely and will work with you to decrease side effects. Chemotherapy can cure some cancers. Even if the chemotherapy does not cure your cancer, it may help you feel better or live longer.
    
    
  • Biologic therapy for cancer: Biologic therapy is medicine given to help your body fight growing cancer cells. It may also make cancer cells weaker and easier to kill. You may need this medicine more than once. You may feel like you have the flu during this therapy.
    
    
  • Radiation: This is a treatment using x-rays or gamma rays to treat cancer. Radiation may be given with chemotherapy. Radiation kills cancer and keeps the cancer from spreading. It also keeps cancer cells from dividing into new cells, which is one way cancer spreads. Lymph nodes with cancer are also treated with radiation. Radiation may shrink your lymph nodes and spleen.
    
    
  • Blood transfusion: You may need a blood transfusion if you need more healthy blood cells in your body. During a blood transfusion, you will get whole blood, or parts of blood through an IV. Many people are worried about getting AIDS, hepatitis, or West Nile Virus from a blood transfusion. The risk of this happening is rare. Blood banks test all donated blood for AIDS, hepatitis, and West Nile Virus. If you refuse a blood transfusion, your condition may get worse, and you may die.
    
    
  • Peripheral stem cell transplant: During a peripheral stem cell transplant, blood cells called stem cells are put back into your body. To do this, blood is first taken from your body. The blood is then put through a process called apheresis. During apheresis, the stem cells are taken out of the blood. The stem cells are then put back into your body and they usually return to the bone marrow. In the bone marrow, stem cells can grow and become white blood cells to help fight infection.

What other medicines may I need to take for chronic lymphocytic leukemia? Some medicines may be taken together or by themselves. You may need to take any of the following:

• Antibiotics: Antibiotic medicine helps your body fight infections. You may get this medicine as a pill or in your IV. An IV is a tube placed in your vein for giving medicine or liquids. This tube is capped or connected to tubing and liquid.
  
  
• Immune globulins: Immune globulins can be used to treat many different problems. It may be given to help your immune system fight infection. It may also help if your body does not produce enough of certain kinds of blood cells. This medicine may help if your system fights something in your blood or body that it should not. Ask your caregiver for more information about how immune globulin medicine may help you.
  
  
• Steroids: Steroid medicine may be combined with chemotherapy treatment. You may need steroids to help you make healthy red blood cells.

How may I respond to treatment? There are different ways that you may react to treatment. You may have stable disease, which means your body does not change stages with or without treatment. You may respond one way to treatment and then have a different response later. You may have any of the following:

• Complete remission: If you have a complete remission (response) after treatment, your blood tests become normal again. Your spleen, liver, or lymph nodes will be normal sized. You will not have symptoms such as fatigue or sweating.
  
  
• Partial remission: You may have a partial response to treatment. During partial remission, you may still have signs and symptoms of CLL. Your body will have fewer damaged lymphocytes than before treatment. Your body may also produce enough red blood cells. Your caregiver may not be able to feel large lymph nodes under your skin. Your liver and spleen may become smaller.
  
  
• Minimal residual disease: You may have minimal residual disease. This means that you have very few cancer cells left in your body.
  
  
• Progressive disease: If you have progressive disease, your CLL is getting worse. Your body may not be making enough red blood cells or platelets. Your lymph nodes, spleen, and liver may get larger.
  
  
• Relapse: You may relapse after having a complete or partial response to treatment. This means that you have signs and symptoms of progressive disease. Your blood tests may become abnormal again. Your lymph nodes, spleen, and liver may get larger.
  
  
• Refractory disease: Refractory disease means that you do not get better with treatment. You may need other treatments, such as a stem cell transplant.

How may I help myself become healthier?

• Exercise: Exercise may help your muscles become stronger. You may feel less tired. You may also feel less sad. Ask your caregiver for an exercise plan that is right for you.
  
  
• Lose weight: If you are overweight (weigh more than your caregivers says you should), you may want to lose weight. Ask your caregiver for ways to lose weight.
  
  
• Quit smoking: It is never too late to quit smoking. Smoking harms the heart, lungs, and the blood. You are more likely to have a heart attack, lung disease, and cancer if you smoke. You will help yourself and those around you by not smoking. Ask your caregiver for more information about how to stop smoking if you are having trouble quitting.
  
  
• Stop drinking alcohol: Do not have drinks with alcohol, such as beer, wine, or whiskey. Alcohol can damage your brain, heart, and liver. Almost every part of your body can be harmed by alcohol. Drinking alcohol can also make your illness worse. Talk to your caregiver if you drink alcohol, and ask for information about how to stop.

When should I call my caregiver? Call your caregiver if:

• You have a fever.
  
  
• You think you have an infection, such as a cough, cold, or flu.
  
  
• You have new bruises or bruises that are getting bigger.
  
  
• Your lymph nodes become painful or more swollen.
  
  
• You are losing weight without trying.
  
  
• You are sweating at night.
  
  
• You are feeling depressed (very sad).
  
  
• You have questions or concerns about your condition, treatment, or care.

When should I seek immediate help? Seek care immediately or call 911 if:

• You have bleeding that does not stop.
  
  
• You have trouble breathing.
  
  
• You have a fast heartbeat or chest pain.
  
  
• You have very bad pain in your abdomen.

Where can I find support and more information? CLL is a life-changing disease for you and your family. Accepting that you have cancer is hard. You and people close to you may feel scared, depressed, or angry. These feelings are normal. Talk to your caregivers, family, or friends about your feelings. You may also want to join a support group for people who have CLL. Learning about CLL may help you and your family cope with your disease. Contact the following for more information:

• American Cancer Society
  Phone: 1-800-227-2345
  Web Address: http://www.cancer.org
  

• The Leukemia & Lymphoma Society Inc.
  1311 Mamaroneck Avenue
  White Plains, NY 10605
  Phone: 1-914-949-5213
  Phone: 1-800-955-4572
  Web Address: http://www.leukemia-lymphoma.org
  

CARE AGREEMENT:

You have the right to help plan your care. To help with this plan, you must learn about your health condition and how it may be treated. You can then discuss treatment options with your caregivers. Work with them to decide what care may be used to treat you. You always have the right to refuse treatment.

Copyright © 2008 Thomson Healthcare Inc. All rights reserved. Information is for End User's use only and may not be sold, redistributed or otherwise used for commercial purposes.

The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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