Acute Myelogenous Leukemia: A Guide for Patients and Caregivers

Transcription

1 Acute Myelogenous Leukemia: A Guide for Patients and Caregivers LE UK E M I A Printing of this publication made possible by an education grant from LYMPHOMA M Y E L OM A

2 Introduction Table of Contents Acute myelogenous leukemia (AML) is a type of blood cancer. Another name for AML is acute myeloid leukemia. About 138,500 people in the United States are expected to be diagnosed with a blood cancer in About 13,300 people in the United States are expected to be diagnosed with AML in This booklet is for patients with AML, their families and caregivers. It will help patients, families and caregivers learn about AML and how it is treated. For more information on AML, order the free LLS booklets Understanding Leukemia and Acute Myelogenous Leukemia. 1 Questions? Contact an Information Specialist at The Leukemia & Lymphoma Society at or (800) PS66 35M 4/08

3 Inside Table This of Contents Booklet Understanding Acute Myelogenous Leukemia (AML) 3 Treatment for AML 11 Side Effects of Treatment for AML 24 Coping with AML 33 What Should I Ask the Doctor? 36 We re Here to Help 38 Medical Terms 39 Some words in the booklet may be new to you. Check Medical Terms at the back of this booklet. Or call LLS at (800) This booklet from The Leukemia & Lymphoma Society (LLS) is for information only. LLS does not give medical advice or medical services. To order free booklets, contact The Leukemia & Lymphoma Society at or (800)

4 Understanding Acute Myelogenous Leukemia (AML) AML is a type of cancer that starts in the marrow. Before you read more about AML it will help to know a little about blood cells and marrow. About Marrow, Blood and Blood Cells Marrow is the spongy center inside of bones. Blood cells are made in the marrow. Blood cells 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 prevent bleeding and form plugs that help stop bleeding after an injury. Red cells carry oxygen around the body. When the number of red cells is below normal this is called anemia. Anemia can make you tired, pale or short of breath. White cells fight infection in the body. There are 2 major types of white cells: germ-eating cells (neutrophils and monocytes) and lymphocytes. Plasma is another part of the blood. It is mostly water. It also has some vitamins, minerals, proteins, hormones and other natural chemicals. 3 Check Medical Terms for words that are new to you. Or call The Leukemia & Lymphoma Society at (800)

5 What is a normal blood cell count? Introduction 2 Overview The ranges of Stem of Cell blood Transplantation cell counts below are for adults. They 3 may be a little different from lab to lab and for children and teens. Normal Blood and Marrow 7 Red blood cell (RBC) count Stem Cell Transplantation and Cancers of the Blood and Marrow 9 Men: 4.5 to 6 million red cells per microliter of blood Testing to Identify Donors 12 Women: 4 to 5 million red cells per microliter of blood Collecting Stem Cells for Transplantation or Infusion 14 Hematocrit (the percent of the blood made up of red cells) T-lymphocyte Men: 42% Depletion to 50% 17 Women: 36% to 45% Types of Stem Cell Transplantation 18 Hemoglobin The Autologous Stem Cell Infusion (Autotransplant) Process 19 Men: 14 to 17 grams per 100 milliliters of blood The Allogeneic Stem Cell Transplantation Process 21 Women: 12 to 15 grams per 100 milliliters of blood Side Effects of the Conditioning Regimen 24 Platelet count Graft Versus 150 to Host 450 Disease thousand platelets per microliter of blood 26 Reduced-intensity White blood cell Allogeneic (WBC) Stem count Cell Transplantation to 11 thousand white cells per microliter of blood Leaving the Hospital 32 Differential (also called diff) Aftercare 33 This shows the percents of different types of white cells in Research and Clinical Trials 34 the blood. The types of white cells counted are neutrophils, Social lymphocytes, and Emotional monocytes, Effects eosinophils, and basophils. 35 Usually, adults have about 60% neutrophils, 30% lymphocytes, 5% Glossary 37 monocytes, 4% eosinophils and less than 1% basophils in Resources the blood. 53 Join us for the latest information on leukemia during our free teleconferences. Go to or call (800)

6 Normal Marrow Cells and AML Blast Cells A B Panel A shows different types of normal marrow cells seen through a microscope. These normal cells are in various stages of development. Panel B shows AML blast cells seen through a microscope. These cells have stopped developing. The marrow is filled with blast cells that do not develop properly. The cells shown in panels A and B are much larger than actual cells. The cells are also stained with a special dye so they can be seen more clearly. 5 Questions? Contact an Information Specialist at The Leukemia & Lymphoma Society at or (800)

7 Causes Table of Contents People can get AML at any age. The chance of getting AML increases with age. About 1 in 6 children with acute leukemia has AML. In most cases doctors do not know what causes a healthy cell to change to an AML-cell. Some things that may increase the risk of getting AML are Some types of chemotherapy Radiation used to treat cancer Down syndrome Tobacco smoke Repeated exposure to the chemical benzene. Benzene damages the DNA of normal stem cells. Tobacco smoke is now the leading known source of benzene exposure. Benzene is also found in certain industrial settings. There is strict regulation in the U.S. and other countries that limits workplace benzene exposure. Most people with these risks do not get AML. You cannot catch AML from someone else. To order free booklets, contact The Leukemia & Lymphoma Society at or (800)

8 Signs and Symptoms The signs and symptoms for AML are common to many illnesses. A person with AML may have Aches in legs, arms or hips Black-and-blue marks without clear cause Enlarged lymph nodes Mild fever Pale-looking skin Pinhead-size red spots under the skin Prolonged bleeding from minor cuts Shortness of breath during physical activity Slow-healing of cuts Swollen gums Tiredness or no energy. Diagnosis and Type of AML To diagnose AML, a blood test is done to Count the numbers of red cells, white cells and platelets See if there are any AML-cells. 7 Check Medical Terms for words that are new to you. Or call The Leukemia & Lymphoma Society at (800)

9 A bone marrow aspiration and a bone marrow biopsy are tests used to Take a close look at AML-cells Find out how many AML-cells are in the marrow Identify the patient s type of AML. The cells are looked at under a microscope. Doctors use the sample of cells from the aspiration to see the types of cells for example, blast cells. The sample can also be used for cytogenetic analysis and immunophenotyping. Cytogenetic analysis is a lab test to examine the chromosomes of the AML-blast cells. Each cell in the body has chromosomes that carry genes. Genes give the instructions that tell each cell what to do. Immunophenotyping is a test that is used to find the type of AML. It is important to know what type of AML a person has. Knowing the patient s AML type helps the doctor to plan treatment. Patients with acute promyelocytic leukemia (APL) need different treatment than patients with other types of AML. More information about APL treatment is on page 19. Join us for the latest information on leukemia during our free teleconferences. Go to or call (800)

10 Types of AML There are 8 types of AML M0 to M7. You may hear your doctor talk about some of these types. M0, M1 and M2 are all myeloblastic leukemia. Most people with AML have one of these types. M3 is acute promyelocytic leukemia (APL). About 1 in 10 adult AML patients has the APL type. M4 is acute myelomonocytic leukemia. About 1 in 5 AML patients has this type. M5 is acute monocytic leukemia. About 15 out of 100 AML patients have this type. M6 is acute erythroleukemia and M7 is acute megakaryocytic leukemia. These types are rare. 9 Questions? Contact an Information Specialist at The Leukemia & Lymphoma Society at or (800)

11 How Are the Blood and Bone Marrow Tests Done? For a blood test usually a small amount of blood is taken from the patient s arm with a needle. The blood is collected in tubes and sent to a lab. A bone marrow aspiration is done by removing a sample of cells from the marrow. A bone marrow biopsy is done by removing a very small amount of bone filled with marrow cells. Both tests are done with a special needle. Some patients are awake for the procedure. They get medication first to numb the part of the body that will be used to get the sample of cells. This is usually the patient s hip bone. Some patients are sedated (asleep) for the procedure. Blood and marrow tests may be done in the doctor s office or in a hospital. A bone marrow aspiration and biopsy are almost always done together. Blood and marrow tests are also done to see if treatment is destroying AML-cells. The doctor uses information from all of the tests to decide the type of treatment a patient needs. The type and length of treatment may also depend on the patient s age. To order free booklets, contact The Leukemia & Lymphoma Society at or (800)

12 Treatment for AML It is important to get medical care in a center where doctors are experienced in treating patients with AML. You can ask your doctor how much experience he or she has treating AML patients. The goal of treatment for AML is to cure the disease. AML is not easy to cure. Children have the best chance for a cure. Almost half of children with AML are cured. Treatment does not cure most adults with AML. But there has been improvement in treatment results in recent years. Patients and caregivers should talk to their doctors about getting treatment in a clinical trial. Patients with acute promyelocytic leukemia (APL) have higher cure rates overall compared to adults with other AML types. There are 3 parts of treatment for AML, called induction therapy, consolidation therapy and intensification therapy. Induction therapy is explained on page 12. Consolidation therapy and intensification therapy are explained on page Check Medical Terms for words that are new to you. Or call The Leukemia & Lymphoma Society at (800)

13 To decide the best treatment for the patient, the doctor considers the patient s Age General health AML type and if there are AML-cells in the spinal fluid The doctor also considers if the patient s AML-cells have changes to chromosomes or genes for example, about 1/3 of AML patients have a change to the FLT3 gene in their AMLcells. Patients with a change to the FLT3 gene may need different treatment than patients with a lower-risk type of AML. Induction Therapy Induction therapy is the first part of treatment with chemotherapy. AML patients need to start induction chemotherapy right away. Induction therapy is done in the hospital. Patients are often in the hospital for 4 to 6 weeks for this first part of treatment. The aim of induction therapy is to Kill as many AML-cells as possible Get blood counts back to normal Get rid of all signs of the disease for an extended period of time. When there is no sign of AML this is called a remission. Join us for the latest information on leukemia during our free teleconferences. Go to or call (800)

14 Chemotherapy is treatment with drugs that kill or damage cancer cells. Some drugs are given by mouth. Most drugs are given through a central line, port or PICC. Two or more drugs may be used together for induction therapy. Several types of drugs are used to kill AML-cells. Each drug type works in a different way to kill the cells. Combining drug types can strengthen the effects of the drugs. Some of the drugs used to treat AML are listed on page 15. The first round of chemotherapy usually does not get rid of all the AML-cells. Most patients will need more induction therapy. Usually the same drugs are used for more rounds of treatment to complete induction therapy. Some drugs are approved for special uses. For example: All-trans retinoic acid (ATRA, tretinoin, Vesanoid ) and arsenic trioxide (Trisenox ) are used to treat patients with acute promyelocytic leukemia (APL) a type of AML. Clofarabine (Clolar ) is approved for children (1 to 21 years) with acute lymphocytic leukemia (ALL) who have not responded to other treatments. It is being studied as a treatment for adults and children with AML. Gemtuzumab ozogamicin (Mylotarg ) is approved to treat some relapsed AML patients 60 years and older. Mylotarg is being studied as a treatment for some APL patients and relapsed patients with other types of AML. 13 Questions? Contact an Information Specialist at The Leukemia & Lymphoma Society at or (800)

15 New drug combinations are being studied. New uses for approved drugs are also being studied. See page 30 for more information about treatments under study. Central Lines, Ports and PICCs Central lines, ports or PICCs can be used to give medications, nutrition and blood cells. They can be used to take blood samples too. Central lines, ports and PICCs can stay in place for weeks or months. You can talk to your doctor about the best one for you or your child to use. Central Line This is a thin tube that is put under the skin and into a large vein in the chest. The central line stays firmly in place. Another word for central line is catheter. Port A port is a small device that is used with a central line (catheter) to access a vein. The port is placed under the skin of the chest. After the site heals, no dressings are needed and no special home care is needed. To give medicines or nutrition, or to take blood samples, the doctor or nurse puts a needle through the skin into the port. A numbing cream can be put on the skin before the port is used. PICC or PIC Line A PICC or PIC line is short for percutaneously inserted central venous catheter. This type of catheter is inserted through a vein in the arm. To order free booklets, contact The Leukemia & Lymphoma Society at or (800)

16 Some Drugs Used to Treat AML Anti-tumor Antibiotics daunorubicin (Cerubidine ) doxorubicin (Adriamycin ) idarubicin (Idamycin ) mitoxantrone (Novantrone ) Antimetabolites cytarabine (cytosine arabinoside; ara-c; Cytosar-U ) cladribine (2-CdA; Leustatin ) fludarabine (Fludara ) hydroxyurea (Hydrea ) 6-mercaptopurine (Purinethol ) methotrexate thioguanine (Tabloid ) clofarabine (Clolar )* DNA Repair Enzyme Inhibitors etoposide (VP-16; VePesid ; Etopophos ) teniposide (VM-26; Vumon ) Cell-Maturing Agents all-trans retinoic acid (ATRA; tretinoin; Vesanoid )* arsenic trioxide (Trisenox )* Monoclonal Antibody gemtuzumab ozogamicin (Mylotarg )* Hypomethylating Agents azacitidine (Vidaza ) decitabine (Dacogen ) *Approved for special uses (see page 13). Information about side effects begins on page Check Medical Terms for words that are new to you. Or call The Leukemia & Lymphoma Society at (800)

17 Radiation Therapy Sometimes radiation therapy may be used to treat a large mass of AML-cells in the spine or brain called a chloroma. Consolidation and Intensification Therapy More treatment is usually needed even after an AML patient is in remission. Some AML-cells may remain that are not found by common blood or marrow tests. These parts of AML treatment are called consolidation therapy and intensification therapy. Chemotherapy is part of consolidation therapy for AML. More chemotherapy and in some cases a stem cell transplant are part of intensification therapy for AML patients. Stem cell transplants are explained beginning on page 17. The doctor considers many things to decide what type of consolidation and intensification therapy the patient needs, such as: The patient s overall health Certain changes to the genes in the AML-cells The availability of a stem cell donor. Join us for the latest information on leukemia during our free teleconferences. Go to or call (800)

18 Patients stay in the hospital for consolidation therapy. The length of time in the hospital depends on the treatment and any side effects to treatment. Patients are often in the hospital for 4 to 6 weeks. Some patients may need to be in the hospital longer. For intensification therapy, the length and treatment setting (hospital or outpatient) depend on the intensification treatment plan. Allogeneic Stem Cell Transplants (Allotransplants) Allotransplants are used to treat some AML patients. There are 2 reasons for doing allotransplants. They are To give strong doses of chemotherapy to kill more AMLcells To give the patient the donor immune cells to attack any AML-cells that remain. When the donor cells attack the AML-cells it is called graft versus leukemia or GVL. Allotransplants are done in the hospital. First, the patient is given high-dose chemotherapy and/or radiation therapy. Stem cells are taken from a donor. The donor can be a brother or sister. Or the donor can be another person with stem cells that match the patient s. The donor stem cells are given to the patient through an IV (intravenous) line or central line. The donor stem cells go from the patient s blood to the marrow and help start a new supply of red cells, white cells and platelets. 17 Questions? Contact an Information Specialist at The Leukemia & Lymphoma Society at or (800)

19 An allotransplant may be a choice for an AML patient if He or she has a type of AML that is hard to treat. The expected benefits of an allotransplant exceed the risks. Doctors will discuss these with patients and parents of young children with AML. There is a stem cell donor. Allotransplants are a high-risk procedure. For this reason, allotransplants may not be a good treatment for some AML patients. AML patients who get an allotransplant are usually between the ages of 1 and 55. Doctors are studying a type of allotransplant called reduced-intensity stem cell transplant (nonmyeloablative transplant). It may be helpful for older patients or sicker patients. More information about reduced-intensity stem cell transplants is on page 33. Autologous Stem Cell Infusions (Autotransplants) Patients who do not have a matched donor for an allotransplant and have not responded well to treatment may get very high doses of chemotherapy and an autotransplant. The patient s own stem cells are used for an autotransplant. Stem cells are taken from the patient s blood or marrow and stored before chemotherapy begins. They are infused back into the patient s blood after chemotherapy ends. To order free booklets, contact The Leukemia & Lymphoma Society at or (800)

20 The goal of an autotransplant is to restore the body s ability to make normal blood cells after high-dose chemotherapy. Cord Blood Stem Cell Transplants The stem cells used for transplants can come from blood or marrow or from the blood in the umbilical cord after a baby s birth. A cord blood stem cell transplant may help patients who need an allotransplant, but do not have another source of stem cells. Donated cord blood for transplants is collected from the umbilical cord and placenta after a baby is delivered. The cord blood is screened. If it meets standards, it is frozen and stored at a cord blood bank for future use. The free LLS booklet Blood and Marrow Stem Cell Transplantation has more details on allotransplant and autotransplant. Acute Promyelocytic Leukemia (APL) Treatment APL is the most curable subtype of AML. Patients with APL need different treatment than patients with other AML subtypes. 19 Check Medical Terms for words that are new to you. Or call The Leukemia & Lymphoma Society at (800)

21 APL patients are treated with the drug all-trans retinoic acid (ATRA). ATRA is given with chemotherapy. This treatment brings many APL patients into remission. Arsenic trioxide (ATO) is another drug used to treat APL patients. ATO may be given to patients whose APL has returned, or cannot be brought under control, with chemotherapy and ATRA. Other treatments are under study for APL patients: ATRA and ATO without chemotherapy. This treatment is being studied for low-risk APL patients. ATRA and ATO, combined with the drug Mylotarg, is being studied in patients with high-risk APL. Some high-risk APL patients may be treated with an allotransplant or an autotransplant. Information about transplants begins on page 17. Acute Monocytic Leukemia Treatment Some patients with acute monocytic leukemia may need more treatment than patients with other AML subtypes. AML-cells can invade the lining of the spinal canal or brain. This complication is uncommon for most other types of AML. The risk is greater for patients with acute monocytic leukemia. Join us for the latest information on leukemia during our free teleconferences. Go to or call (800)

22 A spinal tap (also called a lumbar puncture) is used to check the spinal fluid for AML-cells. The spinal cord and brain are parts of the body that aren t easily reached with IV chemotherapy. These parts of the body are treated by injection into the spinal fluid. When treatment is needed, a spinal tap (lumbar puncture) is done. A needle is placed into the spinal canal in the lumbar area (the lower part of the spine below the spinal cord). Then spinal fluid is removed and chemotherapy (usually cytarabine) is injected into the spinal canal. Radiation therapy may be given to the spine or brain. Sometimes both chemotherapy and radiation therapy are used. Spinal taps are done from time to time to check if AML-cells are being killed. AML Treatment in Children There are about 3,800 new cases of childhood leukemia each year in the U.S. About 1 in 6 children with acute childhood leukemia has AML. Induction therapy for children with AML starts with 2 or 3 drugs. More treatment is needed after a child with AML is in remission. This is called consolidation and intensification therapy. It is given because some AML-cells may remain after induction therapy. These AML-cells do not show up in standard blood or marrow tests. Consolidation and intensification therapy in children include a number of chemotherapy drugs. 21 Questions? Contact an Information Specialist at The Leukemia & Lymphoma Society at or (800)

23 About 4 out of 5 children with AML go into remission. About half of children with AML have no signs of disease after 5 years. Most of these children are considered cured. AML treatment is less likely to bring about a remission or cure when children Have AML with very high white cell counts Are younger than 1 year of age Have certain chromosomes in their AML cells that are not normal. Allotransplants may be used in children who are not doing well or whose AML returns after high-dose chemotherapy (called a relapse). Doctors will discuss the benefits and risks of transplant with parents and older children. AML Treatment in Older Patients AML is more common in older patients. At least half of patients are over 65 years old when their disease is diagnosed. Today cures are possible for some older people with AML, including those who may have other serious health problems. But treatment results in adults are not as good as treatment results in children. To order free booklets, contact The Leukemia & Lymphoma Society at or (800)

24 Healthy older patients can be treated with chemotherapy. The type and dose of drugs may be changed for older patients with other health problems. Some healthy older patients can be treated with the same doses of chemotherapy as younger adults. Sometimes older patients have other medical problems, such as heart disease, kidney or lung disease or diabetes. The doctor takes these other medical problems into account to decide which drugs to use and in what dose. The doctor will also consider The type of AML The patient s physical ability to handle the treatment The patient s feelings about the treatment approach. Doctors are studying a type of allotransplant, called a reducedintensity transplant. This may be a good treatment for some older adults. See page 33 for more information. 23 Check Medical Terms for words that are new to you. Or call The Leukemia & Lymphoma Society at (800)

25 Side Effects of Treatment for AML The aim of treatment for AML is to kill AML-cells. Treatment for AML also affects healthy cells. The term side effect is used to describe how treatment affects healthy cells. Side effects for AML treatment may be severe, but they usually go away once treatment ends. Ask your doctor about the side effects to expect from your treatment. Treatment Side Effects Blood Cell Counts The number of red cells may decrease (anemia). Red cell transfusions (red cells that are donated and given to the patient) may be needed to increase red cell counts. Patients also may have a drop in the number of platelets. A platelet transfusion may be needed to prevent bleeding if a patient s platelet count is very low. A big drop in the number of white cells may lead to an infection. These infections are usually treated with antibiotics. Fever or chills may be the only signs or symptoms of infection. Patients with an infection may also have Coughing Sore throat Pain when urinating Frequent loose bowel movements. Join us for the latest information on leukemia during our free teleconferences. Go to or call (800)

26 Growth factors are sometimes given to increase white cells. G-CSF (Neupogen ) and GM-CSF (Leukine ) are drugs that increase the number of white cells. Growth factors are only given to children in certain cases. Scientists are studying which children with AML are most likely to be helped by treatment with growth factors to prevent infection. To lower the risk of infection The patient, the patient s visitors and medical staff need to wash their hands well. The patient s central line must be kept clean. Patients on chemotherapy should take good care of their teeth and gums. The doctor may talk about the absolute neutrophil count or ANC, which is the number of neutrophils (a type of white cell) a person has to fight an infection. 25 Questions? Contact an Information Specialist at The Leukemia & Lymphoma Society at or (800)

27 Other Treatment Side Effects Chemotherapy affects the parts of the body where new cells form quickly. This includes the inside of the mouth and bowel, and the skin and hair. The side effects listed here are common during chemotherapy: Mouth sores Diarrhea Hair loss Rashes Nausea Vomiting. Not all patients have these side effects. Treatment to prevent or treat nausea, vomiting and diarrhea and other side effects can help patients feel more comfortable. Chemotherapy may cause the amount of uric acid to increase in the blood of some AML patients. (Some patients also have a buildup of uric acid from the disease itself.) Uric acid is a chemical made in the body. A high level of uric acid can cause kidney stones. Patients with high uric acid levels may be given a drug called allopurinol (Aloprim, Zyloprim ) by mouth. Another drug used to treat high uric acid levels is called rasburicase (Elitek ), which is given by vein. To order free booklets, contact The Leukemia & Lymphoma Society at or (800)

28 The free LLS booklet Understanding Drug Therapy and Managing Side Effects has more information about managing side effects. Information about long-term and late effects of treatment begins on page 28. Refractory AML and Relapsed AML Patients may have AML-cells in the marrow even after treatment. This is called refractory AML. Some patients have a remission after treatment but then AML-cells return later this is called a relapse. With refractory AML, drugs that were not used in the first round of treatment may be given. An allotransplant also may be used. Allotransplant is described on page 17. Patients who relapse may be treated with the same drugs as newly diagnosed patients or different drugs may be given. Younger patients who have a matched donor may be given an allotransplant. The drug Mylotarg is being used to treat some older patients who have relapsed AML. More information about Mylotarg is on page Check Medical Terms for words that are new to you. Or call The Leukemia & Lymphoma Society at (800)

29 Long-term and Late Effects of Treatment Long-term effects are medical problems that last for months or years after treatment ends. Fatigue is an example. Late effects are medical problems that do not show up until years after treatment ends. Heart disease is an example. Children and adults who have been treated for AML need to see the doctor for follow-up care. Children who are treated for AML may have Growth problems Fertility problems (ability to have children later on) Bone problems Heart problems Learning problems. Adults who are treated for AML may have Fertility problems Thyroid problems Problems concentrating Persistent fatigue. Join us for the latest information on leukemia during our free teleconferences. Go to or call (800)

30 Patients should talk with their doctors about any long-term or late effects that may be related to their treatment. Parents should talk to the doctor about when their child s learning skills should be checked. These free LLS fact sheets have more information on this topic: Long-term and Late Effects of Treatment for Childhood Leukemia or Lymphoma Long-term and Late of Effects of Treatment in Adults Fertility Follow-up Care Medical follow-up is important for every AML patient. Followup care helps the doctor to see if there is a need for more treatment. Children and adults who have been treated for AML should see their primary care doctor and an oncologist (cancer specialist) for follow-up care. Patients should talk to the doctor about how often to have follow-up visits. They can ask what tests they will need and find out how often to have the tests. Follow-up care includes physical exams and blood tests. Sometimes marrow tests are also needed. The doctor may advise longer periods of time between follow-up visits if a patient Continues to be free of signs of AML Does not need medical care for any long-term or late effects. 29 Questions? Contact an Information Specialist at The Leukemia & Lymphoma Society at or (800)

31 Clinical Trials Clinical trials are used to study New drugs New treatments New uses for approved drugs or treatments. Research has contributed to the growing number of patients with AML who enter remission, stay in remission for years or are cured. Most children with AML are treated in clinical trials. Adults with AML should talk to their doctors to see if a clinical trial would be a good treatment for their type of AML. Call the Information Resource Center at (800) to learn how you and your doctor can find out if a clinical trial is right for you. The free LLS free booklets Understanding Clinical Trials for Blood Cancers and Acute Myelogenous Leukemia have more information about clinical trials. To order free booklets, contact The Leukemia & Lymphoma Society at or (800)

32 These are some of the types of trials under way: Scientists are studying the exact genetic changes that cause a normal cell to become an AML-cell. This research is leading to the development of new treatments. These treatments could block the effects of cancer-causing genes. Risk-based therapy may provide targets for AML-specific therapy in the future. This means that a patient s AML-cells could be studied to see what type of induction therapy, consolidation therapy and intensification therapy would help them best. Research on treatment for children and younger adults with AML is aimed at further improving cure rates and decreasing long-term and late effects of chemotherapy. Researchers are studying risk factors and treatments for AML chemotherapy complications such as infections, to make AML therapy safer for children. The AML-cells of some patients are not as easily killed by drugs as those of other patients. This is called drug resistance. Scientists are trying to understand why some AML-cells are resistant to the effects of chemotherapy. This will help them develop better treatments. Scientists are studying immunotherapy, a type of treatment that boosts the body s natural defenses. The goal is to kill or prevent the growth of AML-cells. 31 Check Medical Terms for words that are new to you. Or call The Leukemia & Lymphoma Society at (800)

33 Cytokines are natural substances made by cells. They can also be made in the lab. Cytokines can be used to help Restore normal blood cells during treatment Build up the immune system to attack AML-cells. FLT3 inhibitors are a new class of drugs under study. Several FLT3-inhibitor drugs are being studied to treat AML. Clofarabine (Clolar ) is being studied as a single treatment for some newly diagnosed older adults with AML. Clolar with cytarabine is being studied to treat older adults with relapsed or refractory AML. Mylotarg is a drug that is used to treat older patients who have relapsed AML. It is being studied in combination with other drugs to treat relapsed AML. It is also being studied with other drugs to see if it is better than standard treatment for newly diagnosed adults. ATRA and arsenic trioxide. Doctors are also studying ATRA and arsenic trioxide used together without Mylotarg as a treatment for APL. Farnesyl transferase inhibitors, such as tipifarnib (Zarnestra ), are being studied in older patients. Doctors are studying how well the drug can keep patients with AML in remission. Zarnestra is also being studied for older adults in combination with bortezomib (Velcade ). Join us for the latest information on leukemia during our free teleconferences. Go to or call (800)

34 Doctors are studying a type of allotransplant, called a reducedintensity transplant (nonmyeloablative stem cell transplant). This type of transplant begins with reduced-dose chemotherapy treatment. The patient takes special drugs so that his or her immune system does not reject the transplanted immune cells. Over time, the donor stem cells replace the patient s blood and immune system cells. The donor stem cells also attack the patient s AML-cells. Coping with AML The news that you or your child has AML brings up many feelings. People dealing with AML face unknowns about what comes next. Together, you and your family can talk about your concerns with your health care team. First you may want to focus on learning what you need to know about AML and your treatment or your child s treatment. Then you can look ahead to the hope of remission and recovery. Making treatment choices can cause a lot of stress. It is important to ask the health care team for help and guidance. Talking about any medical concerns will help in making choices. The team can also give emotional support and refer you to sources of financial help. Cancer treatment can be very costly. LLS has a Patient Financial Aid Program that may be able to help with some of 33 Questions? Contact an Information Specialist at The Leukemia & Lymphoma Society at or (800)

35 the costs of medications, treatment and transportation. To find the chapter in your area and get information about the Patient Financial Aid Program call (800) Or go to LLS has a Co-Pay Assistance Program. The program offers patients assistance with private health insurance premiums, private insurance co-pay obligations, Medicare Part B, Medicare Plan D, Medicare Supplementary Health Insurance and Medicare Advantage premium or co-pay obligations. The prescription drugs covered by the program include drugs from the pharmacy or drugs given by a health care provider in a clinic, doctor s office or hospital. Patients with AML may also want to talk with their family and friends about how they feel. Family and friends can help you cope with what lies ahead. A friend or family member can go with you to treatments. Also, patients with AML often get to know one another. These friendships help too. It is important for a patient whose mood does not improve over time to seek medical advice. Depression should be treated even when a person is undergoing AML treatment. LLS or the patient s health care team can give guidance and referrals for depression treatment. The free LLS booklets Each New Day and Financial Health Matters have more details on this topic. To order free booklets, contact The Leukemia & Lymphoma Society at or (800)

36 Helping Children Cope Children with AML may feel scared and helpless. And they may be too young to understand their illness and treatment. Children with AML may have to deal with missing school, friends and favorite activities. They may feel angry at doctors and nurses for hurting them. They may be angry at their parents they may believe their parents let them get sick. Or they may be angry at their parents for making them have tests and treatment. One way to help children feel better about the changes in their lives is to have them take part in normal activities as soon as the doctor says it is okay. Brothers and sisters of children with AML also need special attention. They may be afraid of getting AML. They may feel bad that their brother or sister is sick. They may be sad or angry that their parents are not around as much. Parents of a child with AML may want to talk to members of their child s health care team about how to Find enough time for everything Pay for treatment Best help their children. The free LLS booklet Coping With Childhood Leukemia and Lymphoma has more information about helping children cope. 35 Check Medical Terms for words that are new to you. Or call The Leukemia & Lymphoma Society at (800)

37 What Should I Ask the Doctor? Talk with the doctor about AML and how the doctor plans to treat the disease. This will help you to be involved in your care or your child s care and to make decisions. What do the blood and marrow tests show? How do these results compare to normal? When will these tests need to be repeated? Will you send updates to my family doctor? What are the goals of treatment for the disease? Is there a standard treatment for the disease? What kind of treatment do you think is needed? Is there one option that you recommend over the others? Why or why not? Where will the treatment be given? How many treatments will be needed? What drug or drugs will be given? How will the drugs be given? Will I (or my child) be treated in a clinical trial? Will the treatment be paid for by my health plan? What side effects should be expected from treatment? What can be done to help deal with side effects? Will I (or my child) need to change daily routines or avoid any activities? Does this hospital have experience treating AML patients? What long-term or late effects of treatment should I know about? How often and how long will I (or my child) need follow-up visits? Join us for the latest information on leukemia during our free teleconferences. Go to or call (800)

38 It may be helpful to write down the answers to your questions and review them later. You may want to bring a family member or friend with you to the doctor. The person can listen, take notes and offer support. Some patients find it easier to tape record information from the doctor and listen to the tape at home. For question guides that you can print and take with you to the doctor, visit and click on What to Ask under Patient Services, Newly Diagnosed. These guides provide space for you to write down your doctor s answers to questions about choosing a specialist, discussing treatments, learning about clinical trials and more. Patients with AML should talk with their family and friends about how they feel. They can share what they know about the disease. When family and friends know about AML it will help them to cope. Some Suggestions for Patients or Parents of Children with AML Keep all appointments with the doctor. Take all medicines as instructed by the doctor. Follow the doctor s advice for preventing infection, such as avoiding crowds and washing hands. Eat healthy foods each day; it is okay for patients to eat 4 or 5 smaller meals instead of 3 larger meals. Ask your treatment team for helpful tips for a patient who doesn t feel like eating. See the family doctor to keep up with other health care needs. 37 Questions? Contact an Information Specialist at The Leukemia & Lymphoma Society at or (800)

39 We re Here to Help LLS has chapters around the nation. The chapters offer support groups and also can arrange for an AML patient to talk with another person who has been treated for AML. To find the chapter in your area, call (800) Or go to More Free LLS Booklets and Fact Sheets Blood and Marrow Stem Cell Transplantation Blood Transfusion Choosing and Communicating with a Cancer Specialist fact sheet Choosing a Treatment Facility fact sheet Fatigue fact sheet Food and Nutrition Facts Immunotherapy fact sheet Learning & Living With Cancer: Advocating for your child s educational needs Pictures of My Journey Activities for kids with cancer The Stem Cell Transplant Coloring Book Understanding Leukemia To order free booklets, contact The Leukemia & Lymphoma Society at or (800)

40 Medical Terms Absolute neutrophil count (ANC) The number of neutrophils (a type of white blood cell) that a person has to fight infection. It is calculated by multiplying the total number of white blood cells by the percent of neutrophils. Anemia Decrease in levels of hemoglobin in the blood. Antibiotics Drugs that are used to treat infections. Penicillin is one type of antibiotic. Antibodies Proteins that help to fight infection in the body. Basophil A type of white cell that plays a part in allergies. Blast cells Early bone marrow cells, also known as myeloblasts. About 1 to 5% of normal marrow cells are blast cells. In AML 20% or more of marrow cells may be blast cells. 39 Check Medical Terms for words that are new to you. Or call The Leukemia & Lymphoma Society at (800)

41 Medical Terms Central line Special tubing the doctor puts into a large vein in the upper chest to prepare a patient for chemotherapy treatment. The central line is used to give the patient chemotherapy drugs and blood cells, and to remove blood samples. Also called an indwelling catheter. Chemotherapy Treatment with drugs or medicines to kill AML-cells. Chloroma A large mass of AML-cells, which may be treated with radiation. Clinical trials A study done by doctors to develop better care and treatment for cancer patients. Consolidation therapy Added treatment given to a patient even after the cancer is in remission. It usually includes chemotherapy drugs not used during induction treatment. Cytogenetic analysis The examination of the chromosomes of AML-cells to give doctors information about how to treat patients. Cellsamples can be taken from blood or marrow. Join us for the latest information on leukemia during our free teleconferences. Go to or call (800)

42 Medical Terms Cytokines Natural substances made by cells. They can also be made in the lab. Today, growth factor cytokines can be used to help restore normal blood cells during treatment. In the future, immune cell cytokines may be used to treat AML. Donor immune cells The donated stem cells that a patient receives from a stem cell transplant. These can help the patient make new blood cells and new immune cells. Often, other immune cells called lymphocytes are mixed in with the donor stem cells. In time, the patient begins to make donor type blood and immune cells. Both the infused immune cells and the patient-made donor type immune cells (lymphocytes) lead to 2 results: graft versus host and graft versus leukemia. A strong graft versus leukemia and a weak graft versus host result usually means a better outcome for the patient. Drug resistance When a drug does not work or stops working. Eosinophil A type of white cell that plays a part in allergies. 41 Questions? Contact an Information Specialist at The Leukemia & Lymphoma Society at or (800)

43 Medical Terms FDA Short name for the U.S. Food and Drug Administration. The FDA looks at the results of drug studies and determines if a drug is safe and effective. FISH The short name for fluorescence in situ hybridization, 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. FLT3 inhibitor The FLT3 gene plays a role in a cell s development. About 1/3 of people with AML have a change (mutation) to this gene. Treatments that target this mutation may be used to treat AML in the future. Hematologist A doctor who treats blood cell diseases. Hemoglobin The part of the red cell that carries oxygen. Immune system Cells and proteins that defend the body against infection. Lymphocytes, lymph nodes and the spleen are some parts of the immune system. To order free booklets, contact The Leukemia & Lymphoma Society at or (800)

44 Medical Terms Immunotherapy The term for treatments that can boost the body s immune system such as monoclonal antibody therapy. Other immunotherapies are being studied for AML treatment such as vaccines that would not prevent AML, but would help the immune system s attack against AML-cells. Intensification therapy Treatment given to a patient after induction and consolidation therapy. It usually includes chemotherapy and may include allotransplant or autotransplant. Leukemia A cancer of the marrow and blood. Lymph nodes Small bean-shaped organs around the body that are part of the body s immune system. Oncologist A doctor who treats patients with cancer. Pathologist A doctor who identifies disease by studying tissues under a microscope. 43 Check Medical Terms for words that are new to you. Or call The Leukemia & Lymphoma Society at (800)

45 Medical Terms PCR The short name for polymerase chain reaction, a sensitive lab test that can measure the presence of a cancercell marker in the blood or marrow. It is used to detect remaining cancer cells that cannot be found by other tests. Radiation therapy Treatment with X-rays or other high-energy rays. Refractory AML Disease that does not respond to therapy. Relapse or recurrence When AML comes back after it has been successfully treated. Remission No sign of AML and/or a period of time when the disease is not causing any health problems for the patient. Signs and symptoms A sign is a change in the body that the doctor sees in an exam or on a lab test result. A symptom is a change in the body that a patient can see or feel. Stem cell A type of cell found in marrow that makes red cells, white cells and platelets. Join us for the latest information on leukemia during our free teleconferences. Go to or call (800)

46 Notes 45 Questions? Contact an Information Specialist at The Leukemia & Lymphoma Society at or (800)

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48 For more information, please contact: or: Home Office 1311 Mamaroneck Avenue White Plains, NY Information Resource Center (IRC) (Language interpreters are 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 individual, foundation and corporate contributions to advance its mission. PS66 35M 4/08