Acute Lymphocytic Leukemia: A Guide for Patients and Caregivers LE UK E M I A
LYMPHOMA
M Y E L OM A
Introduction Table of Contents Acute lymphocytic leukemia (ALL) is a type of blood cancer. Other names for ALL are acute lymphoblastic leukemia and acute lymphoid leukemia.
About 135,500 people in the United States were diagnosed with a blood cancer in 2007. About 5,200 people in the United States were diagnosed with ALL in 2007.
This booklet is for patients with ALL, their families and caregivers. It will help patients, families and caregivers learn about ALL and how it is treated.
For more information on ALL order the free LLS booklets Understanding Leukemia and Acute Lymphocytic Leukemia.
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Inside Booklet TableThis of Contents Understanding Acute Lymphocytic Leukemia (ALL)
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Treatment for ALL
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Side Effects of Treatment for ALL
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Coping With ALL
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What Should I Ask the Doctor?
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We’re Here to Help
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Medical Terms
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Some words in the booklet may be new to you. Check Medical Terms at the back of this booklet. Or call LLS at 800-955-4572.
This booklet from The Leukemia & Lymphoma Society (LLS) is for information only. LLS does not give medical advice or medical services.
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Understanding Acute Lymphocytic Leukemia (ALL) ALL is a type of cancer that starts in the marrow. Before you read more about ALL 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. 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 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 it is called anemia. Anemia can make you tired, pale or short of breath. White cells fight infection in the body. There are two major types of white cells: germ-eating cells (neutrophils and monocytes) and lymphocytes. Lymphocytes can be B lymphocytes, T lymphocytes or natural killer cells. All of these cell types help fight infection. Plasma is another part of the blood. It is mostly water. It also has some vitamins, minerals, proteins, hormones and other natural chemicals.
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A person can get ALL at any age. The overall risk of getting ALL is small for children and adults. But ALL is the most common Introduction 2 type of cancer in children under age 15. The risk of getting adult Overview of Stem in Cellpeople Transplantation and older. 3 ALL increases 45 years Normal Blood and Marrow
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Stem Cell Transplantation and Cancers of the Blood and Marrow
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Causes, Signs and Symptoms
ALL starts with a change to a single cell in the bone marrow. Testing to Identify Donors 12 Doctors do not know what causes most cases of ALL. Collecting Stem Cells for Transplantation or Infusion
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The signs and symptoms for ALL are common to many17illnesses. T-lymphocyte Depletion A person with ALL may have
Types of Stem Cell Transplantation
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Autologous Stem Cell or Infusion •The Aches in legs, arms hips (Autotransplant) Process
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Allogeneic Stem Cell Transplantation Process •The Black-and-blue marks for no clear reason
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•Side Enlarged nodes Regimen Effects oflymph the Conditioning
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•Graft Fever without obvious cause Versus Host Disease
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•Reduced-intensity Pale-looking skin Allogeneic Stem Cell Transplantation
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• Pinhead-size red spots under the skin Leaving the Hospital
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• Prolonged bleeding from minor cuts Aftercare
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Research and Clinical Trials
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Social and Emotional Effects
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Glossary
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Resources
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• Shortness of breath during physical activity • Tiredness or no energy • Vomiting
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Diagnosis To diagnose ALL, a blood test is done to • Count the numbers of red cells, white cells and platelets • See if there are any ALL-cells. A bone marrow aspiration and a bone marrow biopsy are tests used to • Take a close look at ALL-cells • Get information about how many ALL-cells are in the marrow. 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 ALL-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 shows if the ALL-cells are B cells or T cells. Most people have B-cell ALL. Most cases of B-cell ALL are “precursor B-cell ALL.”
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The doctor uses information from all of the tests to decide
Table of Contents
• The type of drug therapy a patient needs • How long treatment will last. The type and length of treatment may also depend on the patient’s age.
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 bone marrow 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 during and after treatment. The tests are repeated to see if treatment is destroying ALL-cells.
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Treatment for ALL It is important to get medical care in a center where doctors are experienced in treating patients with ALL. There are three parts of treatment for ALL, called induction therapy, consolidation therapy (also called intensification) and maintenance therapy. Consolidation and maintenance are postinduction therapies. These are described beginning on page 13. The goal of treatment for ALL is to cure the disease. Most children with ALL are cured of their disease after treatment. The number of adult patients with ALL in remission (no sign of the disease) has increased. The length of remission in adults has improved.
Induction Therapy Induction therapy is the term for the start of treatment with chemotherapy. Patients need to start induction chemotherapy right away. Induction therapy usually lasts about 4 to 5 weeks. A patient may be in the hospital for about 2 to 3 weeks of this time.
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The aim of induction therapy is to • Kill as many ALL-cells as possible • Get blood counts back to normal • Get rid of all signs of the disease for an extended period of time. Chemotherapy is treatment with drugs that kill or damage cancer cells. Some drugs are given by mouth. Other drugs are given through a central line, port or PICC (see page 9). Three or 4 drugs may be used together for induction therapy.
Many different drugs are used to kill ALL-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 ALL are listed on pages 10 and 11. Some drugs are approved for special uses. For example: • Clofarabine (Clolar®) is approved for children (1 to 21 years) who have not responded to other ALL treatments. • Nelarabine (Arranon®) is approved for patients with relapsed T-cell ALL. • Imatinib (Gleevec®) and dasatinib (Sprycel®) are approved for patients with Ph-positive ALL. Nilotinib (Tasigna®) is being studied in clinical trials for patients with Ph-positive ALL. New drug combinations are being studied. New uses for approved drugs are also being studied. See pages 24 to 26 for more information.
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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 short for “percutaneously inserted central venous catheter.” This type of catheter is inserted through a vein in the arm.
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Some Drugs Used to Treat ALL Antimetabolites
Drug That Prevents Cells from
clofarabine (Clolar®)*
Dividing
cytarabine (cytosine arabinoside; ara-C, Cytosar-U®)
vincristine (Oncovin®)
mercaptopurine (Purinethol®)
Enzymes That Prevent Cells
methotrexate
From Surviving
thioguanine (Tabloid®)
asparaginase (Elspar®)
nelarabine (Arranon®)*
pegaspargase (PEG-L asparaginase; Oncaspar®)
Anti-tumor Antibiotics
Tyrosine Kinase Inhibitors
daunorubicin (Cerubidine ) ®
imatinib mesylate (Gleevec®)*
doxorubicin (Adriamycin ) ®
dasatinib (Sprycel®)*
mitoxantrone (Novantrone ) ®
nilotinib (Tasigna®)
idarubicin (Idamycin®) Corticosteriods DNA Repair Enzyme Inhibitor etoposide (VP-16, VePesid ) ®
prednisone prednisolone dexamethasone
DNA-damaging Agent cyclophosphamide (Cytoxan®)
*Approved for special uses (see page 8).
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Many ALL patients build up uric acid in their blood from their disease. Uric acid is a chemical made in the body. The use of chemotherapy also increases the uric acid. 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 or through a central line, port or PICC. Another drug used to treat high uric acid levels is called rasburicase (Elitek®).
Some Induction Therapy Drugs for ALL • Daunorubicin (Cerubidine®) or doxorubicin (Adriamycin®) by central line, port or PICC • Asparaginase (Elspar®) or PEG-L asparaginase (Oncaspar®) by injection • Vincristine (Oncovin®) by central line, port or PICC • Dexamethasone or prednisone (corticosteroids) by mouth • Methotrexate by injection into the spinal fluid • Cytarabine (cytosine arabinoside, ara-C, Cytosar-U®) by injection into the spinal fluid
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Preventing Central Nervous System (CNS) Leukemia Patients may have ALL-cells in the lining of the spinal cord and brain. A spinal tap (also called a lumbar puncture) is used to check the spinal fluid for ALL-cells. Every ALL patient gets treatment to prevent central nervous system (CNS) leukemia, even if ALL-cells are not found in the spinal fluid. The spinal cord and brain are parts of the body that aren’t easily reached with chemotherapy. These parts of the body are treated by injection into the spinal fluid. Drugs such as methotrexate, cytarabine and hydrocortisone are injected into the spinal fluid to prevent CNS leukemia.
Treating CNS Leukemia Some ALL patients have ALL-cells in the spinal fluid and need to be treated for CNS leukemia. When treatment is needed, a spinal tap (lumbar puncture) is done. Then spinal fluid is removed and chemotherapy is injected into the spinal canal. Radiation therapy may be given to the spine or brain. Sometimes both chemotherapy (methotrexate, cytarabine and hydrocortisone) and radiation therapy are used. Spinal taps are done from time to time to check if ALL-cells are being killed.
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Consolidation and Maintenance Therapy More treatment is needed even after a patient with ALL is in remission. This is called consolidation therapy and maintenance therapy. These therapies are given because some ALL-cells remain that are not found by common blood or marrow tests. Consolidation therapy is usually given in cycles for 4 to 6 months. Maintenance therapy is usually given for about 2 years. For most people, the drugs used during consolidation and maintenance therapy are not the same drugs used during induction therapy. The doctor considers many things to decide the types, doses and length of consolidation and maintenance therapy a patient needs, such as: • Did the induction therapy kill the ALL-cells? • Does the patient have changes to the chromosomes of the ALL-cells? Some types of ALL—such as T-cell ALL or ALL in the very young (infants) or in adults—are usually treated with higher doses of drugs during induction, consolidation and maintenance therapy.
An allogeneic stem cell transplant (allotransplant) may be a good treatment for some ALL patients. Allotransplants are explained beginning on page 15.
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Some Consolidation and Maintenance Therapies • Vincristine (Oncovin®) by IV • Prednisone or dexamethasone by mouth • Mercaptopurine (Purinethol®) by mouth • Methotrexate by mouth, IV or injection into the spinal fluid • Cytarabine (cytosine arabinoside, ara-C, Cytosar-U®) by IV or injection into the spinal fluid • Asparaginase (Elspar®) or PEG-L asparaginase (Oncaspar®) by injection • Etoposide (VePesid®) or teniposide (Vumon®) • Cyclophosphamide (Cytoxan®) • Doxorubicin (Adriamycin®) • Thioguanine (Tabloid®) • Hydrocortisone by injection into the spinal fluid • Radiation therapy to the head and sometimes to the spine
Ph-positive ALL—Induction Therapy
About 1 out of 5 adults with ALL and a small number of children (2 to 4 out of 100 children) with ALL have a type called Ph-positive ALL.
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Ph-positive ALL may be treated with imatinib mesylate (Gleevec®) or dasatinib (Sprycel®) along with other chemotherapy drugs. Nilotinib (Tasigna®) is being studied for treatment. Gleevec®, Sprycel® and Tasigna® are given by mouth.
Ph-positive ALL—Consolidation and Maintenance Therapy Gleevec® is the drug given to most Ph-positive ALL patients for induction therapy. Some patients may be treated with dasatinib (Sprycel®) or nilotinib (Tasigna®). During consolidation and maintenance therapy Gleevec® or dasatinib (Sprycel®) is given with other drugs. Nilotinib (Tasigna®) is being studied as a treatment. Usually people with Ph-positive ALL stay on Gleevec®, dasatinib (Sprycel®) or nilotinib (Tasigna®) after maintenance chemotherapy is completed. See page 25 for more information about Ph-positive ALL treatment in clinical trials.
Allogeneic Stem Cell Transplants (Allotransplants) Allogeneic stem cell transplants are used to treat some ALL patients.
The main purpose of an allotransplant is to give strong doses of chemotherapy or radiation therapy to kill the ALL-cells.
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This treatment is 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 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. An allotransplant may be a choice for adult ALL patients if • They are not doing well with other treatments. • The expected benefits of a stem cell transplant exceed the risks. • There is a donor. A stem cell transplant is usually not considered for a child unless • Doctors have determined that the child’s type of ALL is not likely to respond well to chemotherapy. • Chemotherapy has not worked well. • The ALL has returned (a relapse).
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Allotransplantion is a high-risk procedure. For this reason, it may not be a good treatment for some ALL patients.
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 in a clinical trial. Autotransplant is not a common treatment for ALL. 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 treatment with chemotherapy ends.
The goal of an autotransplant is to restore the body’s ability to make normal blood cells after high-dose chemotherapy.
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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.
Side Effects of Treatment for ALL The aim of treatment for ALL is to kill ALL-cells. Treatment for ALL also affects healthy cells.
The term side effect is used to describe how treatment affects healthy cells.
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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 white cells may lead to an infection. These infections are usually treated with antibiotics. Fever or chills may be the only signs of infection. Patients with an infection may also have • Coughing • Sore throat • Pain when urinating • Frequent loose bowel movements. For adults, 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. 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.
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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.
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. Some side effects such as nausea, vomiting, diarrhea and mouth sores can be prevented or treated.
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For more information on chemotherapy and its side effects, order the free LLS booklet Understanding Drug Therapy and Managing Side Effects. Information about long-term and late effects of treatment begins on page 22.
Refractory ALL and Relapsed ALL Most children with ALL are cured of their disease. But some children or adults may still have ALL-cells in the marrow even after treatment. This is called refractory ALL. Some patients have a remission after treatment but then ALL-cells return later—this is called a relapse. In refractory ALL, drugs that were not used in the first round of treatment may be given. The patient may also have an allotransplant. For patients who relapse, the same or different drugs may be given and the patient may also have an allotransplant. The drug clofarabine (Clolar®) is approved by the FDA to treat some children (ages 1 to 21) with relapsed and refractory ALL if the usual treatments do not work. Treatment with Clolar® followed by an allotransplant may result in a cure for children with relapsed or refractory ALL.
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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.
Not everyone who is treated for ALL develops long-term or late effects. It depends on the patient’s age, overall health and treatment. Children and adults who have been treated for ALL need to see the doctor for follow-up care. Children who are treated for ALL may have • Growth problems • Fertility problems (ability to have children later on) • Bone problems • Learning problems Adults who are treated for ALL may have • Fertility problems • Thyroid problems • Problems concentrating • Persistent fatigue
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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. For more information, see the free LLS fact sheets Long-term and Late Effects of Treatment for Childhood Leukemia or Lymphoma, Long-term and Late Effects of Treatment in Adults, and Fertility.
Follow-up Care Medical follow-up is important for every ALL patient. Follow-up helps the doctor to see if there is a need for more treatment. 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 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 ALL • Does not need medical care for any long-term or late effects.
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Clinical Trials Clinical trials are used to study • New drugs • New treatments • New uses for approved drugs or treatments. Most children with ALL are treated in clinical trials. Adults with ALL should talk to their doctors to see if a clinical trial would be a good treatment for their type of ALL.
Call the Information Resource Center at 800-955-4572 to learn how you and your doctor can find out if a clinical trial is right for you.
The free LLS booklets Understanding Clinical Trials for Blood Cancers and Acute Lymphocytic Leukemia have more information about clinical trials. These are some of the types of studies under way: Scientists are studying the exact genetic changes that cause a normal cell to become an ALL-cell. This research is leading to the development of new treatments. These treatments could block the effects of cancer-causing genes. Join us for the latest information on leukemia during our free teleconferences. Go to www.LLS.org or call (800) 955-4572. LEU KEMIA
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Risk-based therapy may provide targets for ALL-specific therapy in the future. This means that a patient’s ALL-cells could be studied to see what type of induction therapy, consolidation therapy and maintenance therapy would help them best. The ALL-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 ALL-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 ALL-cells. 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 ALL-cells. New targeted treatments are being developed for Ph-positive ALL. The drugs nilotinib (Tasigna®) or bosutinib (SKI-606) may help some patients who are not helped by imatinib (Gleevec®) or dasatinib (Sprycel®). Drugs called aurora kinases are also being studied for treatment of Ph-positive ALL. Aurora kinases may help patients who are not helped by Gleevec® and other drugs.
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The drug nelarabine (Arranon®) is used to treat adults with T-cell ALL. This drug is also being studied to treat newly diagnosed younger patients with T-cell ALL. Clofarabine (Clolar®) is being studied for use with other drugs to treat children, teens and adults with relapsed or refractory ALL. Doctors are studying a type of allotransplant, called a reducedintensity transplant (nonmyeloablative stem cell transplant). This type of transplant begins with reduced-dose chemotherapy. The patient takes special drugs so that his or her immune system does not reject the transplanted stem cells. Over time, the donorstem cells replace the patient’s blood and immune system cells. The donor-stem cells also attack the patient’s ALL-cells.
Coping with ALL The news that you or your child has ALL brings up many feelings. People dealing with ALL 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 ALL and your treatment or your child’s treatment. Then you can then look ahead to the hope of remission and recovery.
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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 questions 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 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) 955-4572. Or go to www.LLS.org. Patients with ALL 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 ALL 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 ALL 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.
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Helping Children Cope Children with ALL may feel scared and helpless. And they may be too young to understand their illness and treatment. Children with ALL 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 ALL also need special attention. They may be afraid of getting ALL. 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 ALL 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. Join us for the latest information on leukemia during our free teleconferences. Go to www.LLS.org or call (800) 955-4572. LEU KEMIA
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What Should I Ask the Doctor? Talk with the doctor about ALL 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 I (or my child) get treatment? 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? • 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 ALL patients? • Will the treatment be paid for by my health plan? • 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?
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Questions? Contact an Information Specialist at The Leukemia & Lymphoma Society at www.LLS.org or (800) 955-4572.
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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 taperecord information from the doctor and listen to the tape at home. Here are more suggestions for patients or parents of children with ALL: • Take all medicines as instructed by the doctor. • Keep all appointments with the doctor. • Follow the doctor’s advice for preventing infection, such as 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 nutrition tips for a patient who does not feel like eating. • Don’t smoke—patients who smoke should get help to quit. • Get enough rest and exercise. Talk with the doctor before starting an exercise program. For question guides you can print and take with you to the doctor, visit www.LLS.org, 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.
To order free booklets, contact The Leukemia & Lymphoma Society at www.LLS.org or (800) 955-4572. LEU KEMIA
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We’re Here to Help LLS has chapters around the nation. Our chapters offer support groups and also can arrange for a patient with ALL to talk with another person who has this disease. To find the chapter in your area, call (800) 955-4572. Or go to www.LLS.org. 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
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Check Medical Terms for words that are new to you. Or call The Leukemia & Lymphoma Society at (800) 955-4572.
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Medical Terms Absolute Neutrophil Count (ANC) The number of neutrophils (a type of white cell) that a person has to fight infection. It is calculated by multiplying the total number of white blood cells by the percentage of neutrophils. Anemia Decrease in levels of hemoglobin in the blood. Antibiotics Drugs that are used to treat infections caused by bacteria or fungi. Penicillin is one type of antibiotic. Antibodies Proteins that help to fight infection in the body. Blast cells Early bone marrow cells, also known as lymphoblasts. About 1 to 5 percent of normal marrow cells are blast cells. In ALL up to 20 percent of marrow cells may be blast cells. 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 “indwelling catheter.”
Join us for the latest information on leukemia during our free teleconferences. Go to www.LLS.org or call (800) 955-4572. LEU KEMIA
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Medical Terms Central nervous system prophylaxis Treatment directed to the lining of the spinal cord and brain, where ALL-cells often collect. Chemotherapy Treatment with drugs or medicines to kill leukemia cells. Clinical trial A study done by doctors to develop better care and treatment for cancer patients. Consolidation therapy Added treatment given to a patient after the cancer is in remission. It usually includes chemotherapy drugs not used during induction treatment. Also called “intensification therapy.” 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 ALL. FDA The 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.
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Questions? Contact an Information Specialist at The Leukemia & Lymphoma Society at www.LLS.org or (800) 955-4572.
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Medical Terms 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. Hematologist A doctor who treats blood cell diseases. Immune system Cells and proteins that defend the body against infection. Lymphocytes, lymph nodes and the spleen are some parts of the immune system. Immunophenotyping A lab test that can be used to find out if the patient’s ALL-cells are B cells or T cells. Immunotherapy The term for treatments that can boost the body’s immune system. Immunotherapies are being studied for blood cancer treatment. One example is vaccine therapy. This type of vaccine would not prevent ALL, but would help the immune system’s attack against ALL-cells. Intensification therapy Another name for “consolidation therapy,” the treatment given to a patient after the cancer is in remission. It usually includes chemotherapy drugs not used during induction treatment. To order free booklets, contact The Leukemia & Lymphoma Society at www.LLS.org or (800) 955-4572. LEU KEMIA
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Medical Terms 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. Maintenance therapy Chemotherapy given to ALL patients after several weeks of induction and consolidation therapy to help destroy the remaining ALL-cells. Maintenance therapy is given for about 2 years. Marrow The spongy material in the center of bones where blood cells are made. Oncologist A doctor who treats patients with cancer. PCR The short name for “polymerase chain reaction,” a sensitive lab test that can measure the presence of cancer cell-markers in the blood or marrow. PCR is used to detect remaining cancer cells that cannot be detected by other tests.
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Check Medical Terms for words that are new to you. Or call The Leukemia & Lymphoma Society at (800) 955-4572.
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Medical Terms Post-induction therapy The treatment given to ALL patients after induction therapy. Post-induction therapy is given in 2 parts: consolidation (also called “intensification”) and maintenance. Refractory ALL Disease that does not respond to therapy. Relapse or recurrence When ALL comes back after it has been successfully treated. Remission No sign of ALL 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 a lab test. 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 www.LLS.org or call (800) 955-4572. LEU KEMIA
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Notes
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Questions? Contact an Information Specialist at The Leukemia & Lymphoma Society at www.LLS.org or (800) 955-4572.
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For more information, please contact:
or: Home Office 1311 Mamaroneck Avenue White Plains, NY 10605 Information Resource Center (IRC) 800.955.4572 (Language interpreters are available upon request.) www.LLS.org
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.
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