The CML Guide Information for Patients and Caregivers

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1 The CML Guide Information for Patients and Caregivers LEUKEMIA LYMPHOMA CHRONIC MYELOGENOUS LEUKEMIA MYELOMA Printing of this publication made possible by a grant from

2 A Message from John Walter President and CEO of The Leukemia & Lymphoma Society The Leukemia & Lymphoma Society (LLS) is committed to bringing you the most up-to-date blood cancer information. We know how important it is for you to have an accurate understanding of your diagnosis, treatment and support options. With this knowledge, you can work with members of your oncology team to move forward with the hope of remission and recovery. Outcomes for people with chronic myelogenous leukemia (CML) are dramatically improved compared to what they were just a decade ago; this progress comes from newer therapies. Our vision is that one day the great majority of people who have been diagnosed with CML will be cured or that people with all phases of CML will be able to manage their illness with good quality of life. We hope the information in this booklet will help you along your journey. LLS is the world s largest voluntary health organization dedicated to funding blood cancer research, education and patient services. Since its founding in 1949, LLS has invested more than $600 million in research specifically targeting blood cancers. We will continue to invest in research for cures and in programs and services that improve the quality of life for people who have CML and their families. We wish you well. John Walter President and CEO

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4 Introduction Chronic myelogenous leukemia (CML) is a type of cancer. The number of people with CML who are living well is growing. This is due to new treatments. Three new CML drugs have been approved since Other new treatments are being studied in clinical trials. Progress toward a cure is under way. In 2009, about 22,475 people in the United States are living with CML. Most people with CML are adults. About 2 percent of all cases of CML occur in children aged 0 to 19 years. Many people want to know what questions to ask their doctor. They may want information about choosing a specialist or about treatment. This Guide includes a list of suggested questions that can help (see the pocket on the inside back cover). There are also other Healthcare Question Guides you can print out: Go to and click on Healthcare Question Guides. Or, contact the Information Resource Center (IRC) for copies. 1 Questions? Contact the Information Resource Center at or (800)

5 Tell Us What You Think. We hope the Guide helps you. Please tell us what you think at Click on LLS Disease & Treatment Publications - Survey for Patients, Family and Friends on the Web page. LLS Has Other Free Materials. You may want to learn more about CML after reading the Guide. Free LLS disease, treatment and support materials are available in print and at Materials that may be of interest to you are listed in the Guide next to this icon: To order free LLS booklets, contact us at or (800)

6 Inside This Guide Part 1 Understanding CML 5 About Marrow, Blood and Blood Cells About CML Signs and Symptoms Diagnosis Tracking Your CML Tests Phases of CML Part 2 Treatment 14 Choosing a Specialist Questions to Ask Your CML Doctor Chronic Phase CML Side Effects of Gleevec, Sprycel and Tasigna Accelerated or Blast Crisis Phase CML Stem Cell Transplants Clinical Trials Treatment Response and Follow-up 3 Check Medical Terms for words that are new to you. Or contact the Information Resource Center at or (800)

7 Inside This Guide Take Care of Yourself 27 We re Here to Help 29 Medical Terms 30 Some words in the Guide may be new to you. Check Medical Terms beginning on page 30. Or call the Information Resource Center at (800) Want More Information? You can view, print or order the free LLS booklets Understanding Leukemia and Chronic Myelogenous Leukemia for more information. Go to or contact the Information Resource Center for copies. This LLS guide about CML is for information only. LLS does not give medical advice or provide medical services. Join us for the latest information on CML during our free teleconferences. Go to or call (800)

8 Part 1 Understanding CML Leukemia is the general term for some different types of blood cancer. CML is one of four main types of leukemia. About Marrow, Blood and Blood Cells The information on this page about normal blood and marrow may help you understand the CML information in the rest of the Guide. Marrow is the spongy center inside of bones where blood cells and immune cells are made. Blood cells are made in the marrow. They begin as stem cells. Stem cells become red cells, white cells and platelets in the marrow. Then the red cells, white cells and platelets enter the blood. Platelets form plugs that help stop bleeding at the site of an injury. Red cells carry oxygen around the body. When the number of red cells is below normal, the condition is called anemia. Anemia may make you feel tired or short of breath. It may make your skin look pale. White cells fight infection in the body. There are two major types of white cells: germ-eating cells (neutrophils and monocytes) and lymphocytes. Plasma is the liquid part of the blood. It is mostly water. It also has some vitamins, minerals, proteins, hormones and other natural chemicals in it. 5 Questions? Contact the Information Resource Center at or (800)

9 About CML CML is a type of cancer that begins in the bone marrow. Most people who have CML are adults. A small number of children have CML. CML starts with a change (mutation) to a single marrow cell. The changed cell multiplies into many cells (CML cells). Blood cells that are almost the same as healthy blood cells are still made in the marrow. But without treatment the following changes take place: The number of red cells is usually less than normal The number of white cells is higher than normal and continues to grow. The Philadelphia Chromosome. In CML cells a change takes place on chromosome 22. The changed chromosome 22 is known as the Philadelphia chromosome. It is also called the Ph chromosome. Chromosomes and Genes Normal cells have pairs of chromosomes that are numbered from 1 to 22 and a pair of sex chromosomes (XX for females and XY for males). Chromosomes are structures in the cells that contain genes. The genes give instructions to the cells. The Ph chromosome is made when a piece of chromosome 22 breaks off and attaches to the end of chromosome 9. A piece of chromosome 9 also breaks off and attaches to the end of chromosome 22. To order free LLS booklets, contact us at or (800)

10 The Bcr-Abl Cancer Gene. The break on chromosome 9 involves a gene called Abl. The break on chromosome 22 involves a gene called Bcr. The Bcr and Abl genes combine to make the CML-causing gene called the Bcr-Abl gene. How the Bcr-Abl Cancer Gene is Created Normal Chromosomes 9 22 Bcr Abl CML Chromosomes 9 22 Piece of 22 Bcr-Abl cancer gene Piece of 9 Philadelphia chromosome A piece of the Abl gene on chromosome 9 breaks off. A piece of the Bcr gene on chromosome 22 breaks off. These 2 pieces switch places. The switch leads to the cancer gene called Bcr-Abl. Causes of CML. Doctors do not know why the Bcr-Abl gene that leads to CML forms in some people but not in others. People treated with high-dose radiation therapy for other cancers have a small increase in risk. But most people treated for cancer with radiation do not develop CML. And most people with CML were not exposed to high-dose radiation. There is no link between dental or medical x-rays and increased risk of CML. You cannot catch CML from someone else. 7 Check Medical Terms for words that are new to you. Or contact the Information Resource Center at or (800)

11 CML-Related Diseases. The name chronic myelogenous leukemia is sometimes used for other types of chronic leukemia, such as chronic myelomonocytic leukemia (CMML) and chronic neutrophilic leukemia (CNL). People with these diseases do not have the Bcr-Abl gene. They are not treated with Gleevec, Sprycel or Tasigna three oral CML drugs (see pages 16 to 21). You can view, print or order the free LLS fact sheet Chronic Myelomonocytic Leukemia (CMML) and Juvenile Myelomonocytic Leukemia (JMML) at Or contact the Information Resource Center for a copy. Signs and Symptoms A sign is a change in the body that the doctor sees in an exam or a test result. A symptom is a change in the body that the patient can see or feel. CML signs and symptoms tend to develop slowly. Many of the signs and symptoms of CML are more likely to be caused by other illnesses. Most people with the signs and symptoms listed on page 9 do not have CML. Join us for the latest information on CML during our free teleconferences. Go to or call (800)

12 Some Signs and Symptoms of CML Tiring more easily People may have less energy due to fewer healthy red cells and more CML cells. Shortness of breath People may have shortness of breath doing usual day-to-day activities due to fewer healthy red cells and more CML cells. Pale skin color Swollen spleen Weight loss People may have pale skin color due to a low number of red cells. People may have aches or a dragging feeling on the upper left side of the belly because of swelling caused by the high number of CML cells. Some people with CML lose weight because they eat less and/or because they are using more energy. People with CML sometimes have other symptoms, such as night sweats. Diagnosis The diagnosis of CML is usually made with information from blood and bone marrow tests. 9 Questions? Contact the Information Resource Center at or (800)

13 Blood Tests. The testing for CML includes blood cell counts and a blood cell examination. Blood cell counts. The doctor orders a test called a complete blood count to check the numbers of blood cells. With CML, the red cell count is lower than normal. The number of white cells is higher than normal and may be very high. The number of platelets may be higher or lower than normal. Blood cell examination. The cells are stained (dyed) and looked at with an instrument called a light microscope. A person with CML has a small number of developing cells called blast cells in his or her blood. Blast cells are not found in the blood of healthy individuals. Bone Marrow Tests and Cytogenetic Tests. Some signs of CML do not show in blood tests. The doctor has to look at a small number of cells (a sample) from the marrow. The samples of cells are obtained with tests that are known as a bone marrow aspiration and a bone marrow biopsy. Samples of the marrow cells are examined under a microscope. This is called a cytogenetic analysis. The examiner looks at a map of the chromosomes in the cell. The map is called a karyotype. The Ph chromosome in a CML cell can be detected on the karyotype. The presence of the Ph chromosome is important information that along with information about high white cell counts helps the doctor to diagnose a person s CML. To order free LLS booklets, contact us at or (800)

14 Blood and marrow tests may be done in the doctor s office or in a hospital. A bone marrow aspiration and a bone marrow biopsy are almost always done together. A special needle is used in both tests. Often, patients are awake during the procedure. These patients are given medication to numb the biopsy and aspiration site usually the hip bone. Once that area of the body is really numb, the bone marrow samples are taken. Some patients are sedated (asleep) for the procedure. How Are the Blood and Bone Marrow Tests Done? Blood Tests. Usually a small amount of blood is taken from the person s arm with a needle. The blood is collected in tubes and sent to a lab. Bone Marrow Aspiration. A liquid sample of cells is taken from the marrow through a needle. The cells are then looked at under a microscope. Bone Marrow Biopsy. A very small amount of bone marrow filled with cells is removed through a needle. The cells are then looked at under a microscope. FISH. A test called fluorescence in situ hybridization or FISH is a special test that can detect CML cells that may not show up on a standard cytogenetic test for the Ph chromosome. Polymerase Chain Reaction (PCR). This is a special test that can detect CML cells that are not found by the FISH test. PCR can detect a very small number of CML cells. A PCR test can be done on cells from blood or marrow. 11 Check Medical Terms for words that are new to you. Or contact the Information Resource Center at or (800)

15 Information about follow-up tests to check a person s response to CML drug treatment begins on page 24. Tracking Your CML Tests These tips may help you to save time and to know more about your health. Ask your doctor why certain tests are being done and what to expect. Discuss test results with your doctor. Ask for and keep copies of lab reports in a file folder or threering binder. Organize test reports by date. Find out if and when follow-up tests are needed. Mark appointments that are coming up on your calendar. You may want to use the free LLS online tool My CML Tracker at This tool will help you keep track of appointments, questions for your doctor, medications, side effects and test results. You can view, print or order the free LLS booklets Understanding Lab and Imaging Tests and My CML Tracker to learn more about lab tests and what to expect. Go to or contact the Information Resource Center for copies. Join us for the latest information on CML during our free teleconferences. Go to or call (800)

16 Phases of CML There are three phases of CML: The chronic phase The accelerated phase The blast crisis phase. Chronic Phase CML. Most people have chronic phase CML when they are diagnosed. CML symptoms are milder in the chronic phase. White cells can still fight infection. Once people with chronic phase CML start treatment they can go back to their usual day-to-day activities. Accelerated Phase CML. People with accelerated phase CML may develop anemia (a decreased number of red cells in the blood). The number of white cells may go up or down. The number of platelets may drop. The number of blast cells increases. The spleen may swell. People with accelerated phase CML may feel ill. Blast Crisis Phase CML. People with blast crisis phase CML have an increased number of blast cells in their marrow and blood. The numbers of red cells and platelets drop. The person may have infections or bleeding. He or she may be tired or have shortness of breath, stomach pain or bone pain. 13 Questions? Contact the Information Resource Center at or (800)

17 Part 2 Treatment Choosing a Specialist Choose a doctor who specializes in treating CML and knows about the most up-to-date treatments. This type of specialist is usually called a hematology oncologist. Or, your local cancer specialist can work with a CML specialist. Ways to Find a CML Specialist Ask your primary care doctor. Contact your community cancer center. Reach out to health plan referral services. Call LLS for a list of cancer centers or go to and click on Cancer Centers Use online doctor-finder resources, such as The American Medical Association s (AMA) DoctorFinder The American Society of Hematology s (ASH) Find a Hematologist. See the free LLS fact sheet Choosing a Blood Cancer Specialist or Treatment Center for information on how to contact these organizations and others. To order free LLS booklets, contact us at or (800)

18 You can view, print or order the free LLS fact sheet Choosing a Blood Cancer Specialist or Treatment Center at Or contact the Information Resource Center for a copy. Questions to Ask Your CML Doctor Talk with the doctor about how he or she plans to treat your CML. This will help you to be actively involved in your care and to make decisions. This Guide includes questions to ask your doctor about CML treatment (see the inside back cover). It may be helpful to write down the answers to your questions and review them later. You may want to bring a caregiver, a family member or a friend with you to your doctor appointments. That person can listen, take notes and offer support. Some people like to record information from the doctor and then listen to the recording at home. People with CML (and their families or caregivers) who are unsure about treatment may want to get a second opinion. For a list of Healthcare Question Guides about second opinions and other topics that you can print, go to and click on Healthcare Question Guides. Or contact the Information Resource Center for copies. Chronic Phase CML For people with chronic phase CML, the goals of treatment are to Return the levels of blood cells to normal Kill all cells that have the Bcr-Abl cancer gene. 15 Check Medical Terms for words that are new to you. Or contact the Information Resource Center at or (800)

19 Treatment for chronic phase CML usually returns the levels of blood cells to normal. Most people don t have infections or unusual bleeding. The spleen goes back to normal size. Usually people being treated for chronic phase CML feel well. They can go about their day-to-day activities. Gleevec. Most people with CML begin treatment with the drug imatinib mesylate (Gleevec). Gleevec is taken by mouth (oral drug therapy). It is an FDA-approved drug (see page 31). Gleevec controls chronic phase CML for most people as long as they continue to take the drug. People with CML that does not respond to the usual dose of Gleevec may respond to a higher dose. Gleevec does not help all people with CML. Another drug may be used to treat a person with CML for one of these reasons: Gleevec did not control the person s CML (called drug resistance ). The person has strong side effects from Gleevec (called drug intolerance ). Gleevec stopped working (called a loss of response ). Sprycel and Tasigna. The drugs dasatinib (Sprycel) and nilotinib (Tasigna) are FDA approved for people with CML who cannot tolerate Gleevec or who have CML that is resistant to Gleevec. These drugs are also taken by mouth (oral drug therapy). See page 34 for Sprycel and Tasigna approval information. Join us for the latest information on CML during our free teleconferences. Go to or call (800)

20 Note: Gleevec, Sprycel and Tasigna work in different ways to block the protein produced by the Bcr-Abl cancer gene. It is important to Take the prescribed amount of CML medication each day to keep the response to treatment Follow the doctor s instructions for taking your CML medication the instructions for taking Gleevec, Sprycel or Tasigna may not be the same Get regular checkups for CML. Blood tests and from time to time, bone marrow tests are needed. See Some Drugs Used to Treat CML on page 20 for a list of other CML drugs. Information about Treatment Response and Follow-up begins on page 24. Side Effects of Gleevec, Sprycel and Tasigna The term side effect is used to describe the ways that treatment affects healthy cells. Many treatment side effects go away or become less noticeable over time. Most can be handled without the need to stop the drug. Talk to your doctor about the possible side effects and long-term effects of your treatment. You can also call the Information Resource Center. Gleevec. Common side effects may include Swelling from too much fluid in the body Puffiness around the eyes Muscle cramps Rash Diarrhea Nausea and vomiting 17 Questions? Contact the Information Resource Center at or (800)

21 Gleevec may also cause loss of the bone mineral phosphorus. The doctor will check for these possible side effects. Pregnancy and Gleevec Today a growing number of younger women with CML want information about pregnancy. Doctors continue to study how CML treatment affects pregnancy. For more information, speak to your doctor about Your need to stop treatment during preconception and pregnancy Your risk of relapse if you stop therapy The risk of not regaining a stable response, even with treatment, during and after pregnancy The risks from Gleevec to a developing baby during your pregnancy. To order free LLS booklets, contact us at or (800)

22 Sprycel. Common side effects may include Too few white cells and/or platelets Too much fluid in the chest Too much fluid in other tissues (edema) Diarrhea Headache Low calcium levels in the blood Slight changes in liver function Tasigna. Common side effects may include Too few white cells and/or platelets Changes in pancreatic enzymes Changes in liver enzymes Nausea Constipation Diarrhea Itching Rash QT prolongation. A possible side effect of Gleevec, Sprycel and Tasigna is a heart rhythm condition called QT prolongation. Your doctor will monitor you for this condition as needed. Some other medications can cause QT prolongation. Your doctor will give you a list of medications to avoid. You can view, print or order the free LLS booklet Understanding Drug Therapy and Managing Side Effects for information about side effects of other drugs. Or contact the Information Resource Center for a copy. 19 Check Medical Terms for words that are new to you. Or contact the Information Resource Center at or (800)

23 Some Drugs Used to Treat CML Imatinib mesylate (Gleevec) Gleevec is the starting drug for most people with CML. Dasatinib (Sprycel) Nilotinib (Tasigna) Sprycel and Tasigna are used to treat people with CML who are intolerant of or resistant to Gleevec. Busulfan (Myleran ) Cytarabine (Cytosar-U ) Hydroxyurea (Hydrea ) Interferon (Intron A, Roferon-A ) Peginterferon-alpha 2a (Pegasys ) People with CML that does not respond to Gleevec, Sprycel or Tasigna may be treated with interferon or other drugs. Hydrea may be used to decrease white cell counts. Accelerated or Blast Crisis Phase CML In both the accelerated and blast crisis phases of CML, the goal of therapy is to kill all cells that contain the Bcr-Abl cancer gene or to return the person s disease to chronic phase CML. Join us for the latest information on CML during our free teleconferences. Go to or call (800)

24 Gleevec, or for certain patients, Sprycel or Tasigna, is an effective treatment for people who have accelerated or blast crisis phase CML. Other drugs such as interferon, busulfan (Myleran), cytarabine (Cytosar-U) or hydroxyurea (Hydrea) may be used with those CML oral drugs. Some people with CML have very high white cell counts at the time of diagnosis. This can reduce blood flow to the brain, lungs, eyes and other parts of the body. Hydrea may also be used to decrease the white cell count. After the white cell count drops, oral drug therapy can be started. Leukapheresis. Leukapheresis is a process that uses a special machine to remove extra white cells from the blood. Leukapheresis can be used for women diagnosed with CML in the first months of pregnancy, when drug therapy may be harmful to the unborn baby. Stem Cell Transplants Stem cell transplantation is another important treatment for certain people with CML. Allogeneic Stem Cell Transplants. A treatment called allogeneic stem cell transplantation is used in a number of diseases. It is a treatment to restore a person s marrow. The transplanted stem cells go from the person s blood to his or her marrow. The cells start a new supply of red cells, white cells (including immune cells) and platelets. The person needs to have a matched stem cell donor for the transplant. The donor can be a brother or sister. Or the donor can be another person with stem cells that match the stem cells of the transplant patient. 21 Questions? Contact the Information Resource Center at or (800)

25 Most people with CML have a good response to drug treatment. Also, CML drug treatment may be able to control CML for a very long time. But allogeneic transplantation may be used to treat CML in some cases. Allogeneic stem cell transplantation is most successful in younger patients. This treatment may be considered for people up to about 60 years of age who have a matched donor. It may be a good treatment for a younger CML patient who does not have a good response to oral drug treatment and has a matched stem cell donor. Before the transplant, the person receives CML drug therapy to bring the disease under control. After the person responds to this treatment, he or she is given high-dose chemotherapy and/or radiation therapy. Then, stem cells from the donor are infused into the transplant patient s blood. Allogeneic stem cell transplantation is the only treatment that can cure CML. About 7 out of 10 people who have an allogeneic transplant are cured of their CML. But this procedure has a high risk of serious complications. Your doctor will explain the benefits and the risks if a transplant is suggested for you. Donor Lymphocyte Infusion. CML patients whose disease returns (relapses) after an allogeneic stem cell transplant may be treated with Gleevec, Sprycel, Tasigna or other drugs. Another treatment choice is a second transplant. Or patients may be treated with a donor lymphocyte infusion (an infusion of white cells called lymphocytes that come from the original stem cell donor). To order free LLS booklets, contact us at or (800)

26 You can view, print or order the free LLS booklet Blood and Marrow Stem Cell Transplantation for more information. Go to or contact the Information Resource Center for a copy. Clinical Trials Doctors are testing new drugs and new combinations of drugs to treat CML. Clinical trials are used to study new drugs, new treatments or new uses for approved drugs or treatments. There are CML clinical trials for people of all ages. Some clinical trials test new ways to use drugs that are already approved. For example, changing the amount of the drug or giving the drug along with another type of treatment might be more effective. Some clinical trials combine drugs for CML in new sequences or doses. Ongoing studies are comparing Gleevec to Sprycel (or Tasigna) for newly diagnosed individuals. Study data will help in identifying which patients are least likely to respond, or most likely to lose a response, to Gleevec therapy. New drugs are being studied for people with CML that does not respond to Gleevec, Sprycel or Tasigna. Vaccine Therapy. Various forms of vaccines are being studied. It s possible that one day vaccines will be able to treat (not prevent) CML by using a person s own immune cells to attack his or her CML cells. 23 Check Medical Terms for words that are new to you. Or contact the Information Resource Center at or (800)

27 Reduced-Intensity Transplant. Doctors are working to make allogeneic stem cell transplants safer (see page 21 for more information about transplants). A type of transplant called a reduced-intensity transplant is under study in clinical trials. A reduced-intensity transplant uses a lower dose of conditioning chemotherapy than the dose used with a standard allogeneic stem cell transplant. This treatment is also called a nonmyeloablative transplant. Older and sicker people may be helped by this treatment. Ask your doctor if treatment in a clinical trial is right for you. You can also call the Information Resource Center for information about clinical trials or use the LLS-supported TrialCheck, a free clinical trials service at You can view, print or order the free LLS booklet Understanding Clinical Trials for Blood Cancers at or contact the Information Resource Center for a copy. You can also watch the free LLS Web video My Clinical Trials Journey at journeys. Treatment Response and Follow-up Measuring treatment response is very important. Blood and marrow tests are used to track a person s level of response to treatment. The results are used to help the doctor decide if the person s CML is well controlled or if there is a need to Increase the dose to try for a better response Decrease or stop the drug briefly because of side effects Join us for the latest information on CML during our free teleconferences. Go to or call (800)

28 Change to a different drug or combination of drugs to better control the CML Change to a different drug or combination of drugs to manage side effects. General Guidelines. There are general treatment response guidelines for the first year of CML drug therapy. But keep in mind that people with CML respond to treatment in different ways. Blood tests and/or bone marrow tests may be used to determine the level of CML drug therapy response. A person s response is measured against his or her lab test results at the start of treatment. The number of red cells, white cells, platelets and CML cells is measured on a regular basis throughout treatment. After diagnosis, marrow testing is usually repeated at 6 and 12 months within the first year of diagnosis. Many doctors do bone marrow testing one to two times a year in the second year after diagnosis. Doctors may repeat the bone marrow tests every 12 to 18 months once a good response is achieved. Your doctor may use the terms hematologic, cytogenetic or molecular response (remission). 25 Questions? Contact the Information Resource Center at or (800)

29 Hematologic Response A complete hematologic response means that the numbers of white cells, red cells and platelets are normal or near normal. The Test: A complete blood count is done to measure the numbers of white cells, red cells and platelets, and the levels of hemoglobin (a protein in red cells that carries oxygen) and hematocrit (the amount of blood that has red cells). Cytogenetic Response A complete cytogenetic response means that there are no cells that can be detected with the Ph chromosome and the Bcr-Abl cancer gene. The Test: FISH is done to measure the number of cells with the Ph chromosome and the Bcr-Abl cancer gene. Molecular Response A partial molecular response means that there is a reduction in the number of cells with the Bcr-Abl cancer gene. A major molecular response means that there is a 1,000-fold decrease in the level of cells with the Bcr-Abl cancer gene from the level at the start of treatment. A complete molecular response means that the Bcr-Abl cancer gene cannot be detected by PCR. Remaining CML cells that cannot be detected by PCR are called minimal residual disease. The Test: PCR is done to measure the number of cells with the Bcr-Abl cancer gene. The same laboratory should be used each time for PCR testing if possible. This is because the results may vary from lab to lab. To order free LLS booklets, contact us at or (800)

30 Most people with chronic phase CML have a complete hematologic response with either Gleevec, Sprycel or Tasigna. Many of these individuals go on to have a complete cytogenetic response. They may also have a partial, major or complete molecular response. Order the free LLS booklet My CML Tracker or use the free online CML tracker tool at for more information about treatment responses. Information about what you can do to keep track of your CML tests is on page 12. Take Care of Yourself The drugs Gleevec, Sprycel and Tasigna are changing the way we think about cancer treatment. The need to maintain therapy for CML is balanced by the hope of ongoing response to treatment or prompt change in treatment if needed. To cope with the circumstances of living with a chronic disease, people need to have a high degree of comfort with their treatment. It may help to take the following actions: Keep all appointments with the doctor. People with CML need medical follow-up after they have completed treatment. Discuss how you feel with the doctor at each visit. Ask any questions you may have about side effects. 27 Check Medical Terms for words that are new to you. Or contact the Information Resource Center at or (800)

31 Follow the doctor s advice for preventing infection. Contact the doctor about tiredness, fever or other symptoms. Eat healthful foods each day. It is okay to eat four or five smaller meals instead of three bigger ones. Do not smoke. People who smoke should get help to quit. Get enough rest and exercise. Talk with your doctor before starting an exercise program. Keep a healthcare file with copies of lab reports and treatment records. Have regular cancer screening. See the family doctor to keep up with other healthcare needs. Talk with family and friends about how you feel. When family and friends know about CML and its treatment, they may worry less. Seek medical advice if your mood does not improve over time. For example, if you feel sad or depressed every day for a two-week period, seek help. Depression is an illness. It should be treated even when a person is being treated for CML. Treatment for depression has benefits for people living with cancer. Remember that the outlook for people with CML is continuing to improve. New treatments are on the horizon. Join us for the latest information on CML during our free teleconferences. Go to or call (800)

32 We re Here to Help The Leukemia & Lymphoma Society (LLS) has chapters around the nation. LLS chapters offer support groups and can also arrange for a person with CML to talk with another person who has CML. To find the chapter in your area, call (800) Or visit the Web site at You can view, print or order the free LLS booklets Each New Day: Ideas for Coping with Blood Cancers and Financial Health Matters for more information and support. Or you can contact the Information Resource Center to order copies. You can also watch the interactive LLS Web program My Personal CML Journey at Language Services. Members of your healthcare team want you to understand the information that they are giving you. Let your doctor know if you want a professional healthcare interpreter who speaks your native language or uses sign language. Many times, this is a free service. Contact a patient advocate if you are not sure. For more information contact the Information Resource Center (IRC) at (800) Language services are available for IRC calls. 29 Questions? Contact the Information Resource Center at or (800)

33 Medical Terms Allogeneic Stem Cell Transplantation. See page 21. Anemia. A decrease in the levels of hemoglobin in the blood. Antibiotics. Drugs that are used to treat infections caused by bacteria and fungi. Penicillin is one type of antibiotic. Antibodies. Proteins made by plasma cells in the blood. Antibodies help to fight infection in the body. Blast cells. Early bone marrow cells. Bone marrow aspiration. A procedure to remove marrow cells so that they can be examined to see if they are normal. A liquid sample of cells is taken from the marrow and then the cells are looked at under a microscope. Bone marrow biopsy. A procedure to remove marrow cells and examine them to see if they are normal. A very small amount of bone filled with marrow cells is taken from the marrow, and the cells are looked at under a microscope. Chemotherapy or drug therapy. Treatment with chemical agents to treat CML and other diseases. Chromosomes. Any of the 23 pairs of certain basic structures in human cells. Chromosomes are made up of genes. Genes give the instructions that tell each cell what to do. The number or shape of chromosomes may be changed in blood cancer cells. To order free LLS booklets, contact us at or (800)

34 Medical Terms Clinical trials. Careful studies done by doctors to test new drugs or treatments or new uses for approved drugs or treatments. The goal of clinical trials for blood cancers is to improve treatment and quality of life and to find cures. Combination chemotherapy or drug therapy. The use of two or more drugs together to treat CML and other diseases. Diagnose. To identify a disease from a person s signs, symptoms and test results. A diagnosis is made by a doctor. FDA. The short name for the US Food and Drug Administration. Part of the FDA s job is to assure the safety and security of drugs, medical devices and the US food supply. FISH. The short name for a test called fluorescence in situ hybridization. This is a test to measure the presence in cells of a specific chromosome or gene. This test can be used to plan treatment and to measure the results of treatment. Gleevec (imatinib mesylate). A type of drug called a tyrosine kinase inhibitor. It is US FDA approved for newly diagnosed adult patients with Ph positive CML in chronic phase. It is also approved for adults with Ph positive CML in blast crisis phase, accelerated phase, or in chronic phase after failure of interferonalpha therapy. Gleevec is approved for children with Ph positive CML in chronic phase who are newly diagnosed or whose disease has recurred after stem cell transplant or who are resistant to interferon-alpha therapy. Hematocrit. The amount of blood that has red cells. 31 Check Medical Terms for words that are new to you. Or contact the Information Resource Center at or (800)

35 Medical Terms Hematologist. A doctor who treats blood cell diseases. Hemoglobin. A protein in red cells that carries oxygen. A blood test can tell how much hemoglobin you have in your blood. Immune response. The reaction of the body to foreign material. Examples of foreign material are an infection-causing microorganism, a vaccine or the cells of another person when those cells are used for an allogeneic stem cell transplant. Immune system. Cells and proteins in the body that defend it against infection. Immunoglobulins. Proteins that fight infection. Immunotherapy. The term for treatments that can boost the body s immune system. Karyotype. A map of the 46 human chromosomes of a cell. There are 22 matched pairs and the sex chromosomes, shown as a separate pair (XX for females or XY for males). Leukapheresis. A process in which extra white cells in the blood are removed by a machine. Some people with CML have very high white cell counts at the time of diagnosis. This can reduce blood flow to the brain, lungs, eyes and other parts of the body. The drug called hydroxyurea (Hydrea) may also be used to decrease the white cell count. After the white cell count drops, oral drug therapy can be started. Leukapheresis can be used for women diagnosed with CML in the first months of pregnancy, when drug therapy may be harmful to the unborn baby. Join us for the latest information on CML during our free teleconferences. Go to or call (800)

36 Medical Terms Leukemia. A cancer of the marrow and blood. Lymphocyte. A type of white cell that is part of the immune system and fights infection. Marrow. The spongy material in the center of bones where blood cells are made. Oncologist. A doctor who treats people who have cancer. Pathologist. A doctor who identifies diseases by studying cells and tissues under a microscope. PCR. The short name for a lab test called polymerase chain reaction, a very sensitive test that can measure the presence of a blood cancer cell marker in the blood. PCR is used to detect blood cancer cells that are below the level of detection by cytogenetic tests (for example, FISH). Plasma. The liquid part of the blood. Platelet. A type of blood cell that helps prevent bleeding. Platelets cause plugs to form in the blood vessels at the site of an injury. Red cell. A type of blood cell that carries oxygen to all parts of the body. In healthy people, red cells make up almost half of the blood. Refractory CML. CML that has not responded to initial treatment. Refractory disease may be disease that is getting worse or staying the same (stable disease). 33 Questions? Contact the Information Resource Center at or (800)

37 Medical Terms Relapsed CML. CML that responded to treatment but then returned. Remission. No sign of the disease and/or a period of time when the disease is not causing any health problems. Resistance. When a drug does not work or stops working. Sprycel (dasatinib). A tyrosine kinase inhibitor that is US FDA approved for the treatment of adults in all phases of CML (chronic, accelerated, or myeloid or lymphoid blast phase) with resistance or intolerance to prior therapy including Gleevec (imatinib mesylate). Stem cell. A type of cell found in marrow that makes red cells, white cells and platelets. Tasigna (nilotinib). A type of drug called a tyrosine kinase inhibitor that is US FDA approved for the treatment of chronic phase and accelerated phase Ph positive CML in adult patients who are resistant or intolerant to prior therapy that included Gleevec. Tyrosine kinase inhibitor (TKI). A drug that blocks cell growth. Gleevec, Sprycel and Tasigna are TKIs that are used to treat CML. White cell. A type of blood or immune cell that helps the body to fight infection. To order free LLS booklets, contact us at or (800)

38 Notes 35 Check Medical Terms for words that are new to you. Or contact the Information Resource Center at or (800)

39 Pocket Folder

40 For more information, please contact: or: Home Office 1311 Mamaroneck Avenue White Plains, NY Information Resource Center (IRC) (Language interpreters available upon request.) Our Mission: Cure leukemia, lymphoma, Hodgkin s disease and myeloma, and improve the quality of life of patients and their families. LLS is a nonprofit organization that relies on the generosity of corporate, individual and foundation contributions to advance its mission. PS72 35M 6/09

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