Chronic lymphocytic leukemia (CLL) is a cancer of the lymphocytes, a type of white blood cell involved in the body’s immune system. Lymphocytes are normally found in the blood, lymph nodes, bone marrow (the spongy, red tissue in the inner part of the large bones), spleen, and in a clear fluid called lymph that flows through small vessels in the body and collects in lymph nodes.
In patients with CLL, mature lymphocytes grow abnormally and build up in the peripheral (circulating) blood, bone marrow, spleen, and lymph nodes. Over time, these malignant (cancerous) cells may crowd healthy blood-forming cells, resulting in fewer red blood cells (which deliver oxygen to the body), neutrophils (a type of white blood cell needed to fight infection), and platelets (which prevent bleeding). In about half of patients, CLL grows and progresses slowly, and it may take years for symptoms to appear or for treatment to be needed. The other half of patients has a more rapidly growing type of CLL, which requires treatment sooner.
There are two general types of CLL, and it is important for doctors to find out whether the disease is caused by the overgrowth of T cells or B cells. T cells and B cells are specific types of lymphocytes. T cells normally help to fight infections by activating other cells in the immune system, while B cells help make antibodies to fight disease. The T-cell type of CLL is less common (about 1% of all CLL cases) and progresses more rapidly than the B-cell type of the disease (more than 95% of all CLL cases).
In 2008, an estimated 15,110 people of all ages (8,750 males and 6,360 females) in the United States will be diagnosed with CLL. CLL is the most common type of leukemia diagnosed in adults. It is estimated that 4,390 deaths (2,600 males and 1,790 females) will occur in 2008.
The survival rate of people with CLL varies according to the stage of the disease (see below) and can range from about one year to more than 20 to 30 years. The overall five-year relative survival rate (percentage of patients who survive at least five years after the cancer is detected, excluding those who die from other diseases) of patients with CLL is about 75%.
Cancer survival statistics should be interpreted with caution. These estimates are based on data from thousands of cases of this type of cancer in the United States each year, but the actual risk for a particular individual may differ. It is not possible to tell a person how long he or she will live with CLL. Because the survival statistics are measured in five-year (or sometimes one-year) intervals, they may not represent advances made in the treatment or diagnosis of this cancer.
Statistics adapted from the American Cancer Society's publication, Cancer Facts and Figures 2008
A risk factor is anything that increases a person’s chance of developing cancer. Some risk factors can be controlled, such as smoking, and some cannot be controlled, such as age and family history. Although risk factors can influence the development of cancer, most do not directly cause cancer. Some people with several risk factors never develop cancer, while others with no known risk factors do. However, knowing your risk factors and communicating them to your doctor may help you make more informed lifestyle and health-care choices.
The cause of CLL is unknown. There is no evidence indicating that exposure to radiation, chemicals, or chemotherapy increases a person’s risk of developing CLL. The following factors may raise a person’s risk of developing CLL:
Family history. Approximately 20% of patients with CLL have a relative with CLL or some other lymph-related cancer. In order to learn more about the familial pattern that occurs in some patients, a registry of such families has been established at the National Cancer Institute.
Age. CLL is most common in older adults, is rare in young adults, and virtually never occurs in children. About 90% of people diagnosed with CLL are over age 50.
Gender. CLL occurs more frequently in men.
Ethnicity. B-cellCLL is more common in people of Russian and European descent, and virtually never occurs in people from China, Japan, or Southeast Asian countries. The reason(s) for this geographic difference is not known.
Agent Orange. The U.S. Department of Veterans Affairs lists CLL as a disease associated with exposure to Agent Orange, a chemical used during the Vietnam War. More information can be found here: http://www.vba.va.gov/bln/21/benefits/herbicide/aono1.htm.
People with CLL may experience the following symptoms. Sometimes, people with CLL do not show any of these symptoms. Or, these symptoms may be caused by a medical condition that is not cancer. If you are concerned about a symptom on this list, please talk with your doctor. Often, people are diagnosed with CLL when the doctor finds an elevated white blood count during a blood test done for other reasons.
Swelling of lymph nodes in the neck, under the arms, or in the groin. This symptom is probably the most common one that people with CLL first notice.
Discomfort or fullness in the upper left part of the abdomen, due to enlargement of the spleen
Fatigue
Fever and infection
Abnormal bleeding
Shortness of breath
Weight loss
Also, people with CLL have a poorly regulated immune system, and their bodies can sometimes make abnormal antibodies against their own red blood cells and/or platelets, destroying these cells and resulting in anemia (low levels of red blood cells) or a low platelet count. These are called autoantibodies. This process can occur at any time during the course of the disease and is not necessarily related to the severity of CLL.
Doctors use many tests to diagnose cancer and determine more about the disease. Some tests may also determine which treatments may be the most effective. For most types of cancer, a biopsy is the only way to make a definitive diagnosis of cancer. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis. Imaging tests may also be used. Your doctor may consider these factors when choosing a diagnostic test:
Age and medical condition
The type of cancer suspected
Severity of symptoms
Previous test results
The following tests may be used to diagnose CLL:
Blood tests. The diagnosis of CLL begins with a complete blood count (a routine blood test) to measure the counts of different types of cells in a person’s blood. If the blood contains high levels of white blood cells, CLL may be present. At this time, the doctor will find out which types of white blood cells are increased.
Bone marrow biopsy.In a bone marrow biopsy, a doctor takes a sample of marrow, usually from the back of the hipbone, with a needle. The patient is given medication to numb the area beforehand. The cells from the marrow, along with the cells from the blood, are analyzed by a pathologist (a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease).
CLL can usually be diagnosed from studies of the blood; a bone marrow biopsy is not needed for all patients. In some patients, it may be used to help determine prognosis (chance of recovery) or provide further information about the reasons that other blood counts may be abnormal.
Flow cytometry and cytochemistry. In these tests, cancer cells are treated with chemicals or dyes that provide information about the leukemia and its subtype. CLL cells have distinctive markers (cell surface proteins) on their surface. The pattern of these markers is called the immunophenotype. These tests are used to distinguish CLL from other kinds of leukemia, which can also involve lymphocytes. Both tests can be done from a blood sample.
Imaging tests. It is known that CLL is generally present throughout many parts of the body, even if the disease has been diagnosed early. Thus, imaging tests to determine if the cancer has spread are not needed for all patients, although they may be recommended at times to determine whether particular symptoms may be related to the CLL and to measure how well treatment is working.
An x-ray (picture of the inside of the body) may show if cancer is growing in lymph nodes in the chest.
A computed tomography(CT or CAT) scan (a three-dimensional picture of the inside of the body) can detect affected lymph nodes around the heart, windpipe, lungs, and abdomen. Sometimes, a contrast medium (a special dye) is injected into a patient’s vein to provide better detail. CT scans can also determine if other organs, such as the spleen, are affected.
Staging is a way of describing a cancer, such as where it is located, if or where it has spread, and if it is affecting the functions of other organs in the body. Doctors use diagnostic tests to determine the cancer's stage, so staging may not be complete until all of the tests are finished. Knowing the stage helps the doctor to decide what kind of treatment is best and can help predict a patient's prognosis. There are different stage descriptions for different types of cancer.
There is a relationship between the stage of the CLL and the prognosis, with patients in the earlier stages having better long-term survival. Importantly, however, there is a wide range of outcomes even in patients within a given stage, and the stage alone does not precisely predict the prognosis for an individual patient.
Rai staging system (stage 0, I, II, III, or IV)
In this staging system, CLL is divided into different stages ranging from 0 (zero) to IV (four). This staging system classifies the leukemia according to whether a patient has, or does not have, any of the following:
Stage 0: The patient has lymphocytosis (more than 15,000 per cubic millimeter of blood), but no other physical signs or symptoms.
Stage I: The patient has lymphocytosis and swollen lymph nodes. The patient does not have an enlarged liver or spleen, anemia, or low levels of platelets.
Stage II: The patient has lymphocytosis and an enlarged liver or spleen and may or may not have swollen lymph nodes.
Stage III: The patient has lymphocytosis and anemia. The patient may or may not have swollen lymph nodes and an enlarged liver or spleen.
Stage IV: The patient has lymphocytosis and low levels of platelets. The patient may or may not have swollen lymph nodes, an enlarged liver or spleen, or anemia.
If the CLL grows and worsens, the stage may change in an individual patient over time, and these changes vary widely from patient to patient.
Risk group
Sometimes the phrase “risk group” is used as a means of expressing the likelihood that the disease may worsen and require treatment.
Low risk: Rai stage 0
Intermediate risk: Rai stages I and II
High risk: Rai stages III and IV
Binet classification (stage A, B, or C)
European doctors use a different staging system, based on whether the CLL is present in the lymph nodes (in the neck, under the arms, or in the groin area) and whether the patient has low levels of red blood cells or platelets. The stages are called A, B, and C.
Stage A: The patient does not have anemia or low levels of platelets. The cancer can be palpated (felt) in fewer than three areas of lymph nodes (Rai stages 0, I, and II).
Stage B: The patient does not have anemia or low levels of platelets. The cancer is present in three or more areas of lymph nodes (Rai stages I and II).
Stage C: The patient has anemia and/or low levels of platelets. The cancer is present in any number of lymph nodes (Rai stages III and IV).
Recurrent CLL
Recurrent CLL is CLL that comes back after treatment.
The treatment of CLL depends on the patient’s stage, risk status, and overall health. In many cases, a team of doctors will work with the patient to determine the best treatment plan.
Because CLL often progresses slowly, many people may not require treatment right away, and some may never require treatment at all. Although the available treatments can be highly effective, none of the standard therapies is capable of eliminating all of the CLL, and patients are not cured of their disease with treatment.
This section outlines treatments that are the standard of care (the best treatments available) for this specific type of cancer. Patients are also encouraged to consider clinical trials as a treatment option when making treatment plan decisions. A clinical trial is a research study to test a new treatment to prove it is safe, effective, and possibly better than standard treatment. Your doctor can help you review all treatment options. For more information, visit the Clinical Trials section.
Watch and wait, for early-stage CLL
For some patients, symptoms and/or the presence of large amounts of CLL in the blood, lymph nodes, or spleen require treatment shortly after the diagnosis is made. In other patients, however, it is possible and recommended for doctors to monitor the patient without active treatment. During this time, the patient’s blood counts are monitored and physical examinations are performed on a regular basis. If the CLL shows signs of worsening, active treatment would then begin. Multiple studies have shown that no harm comes from the watch-and-wait approach (also called active surveillance), as compared with immediate treatment of patients with early-stage CLL. Some patients remain without symptoms for years, or even decades, and will not need any treatment.
Treatment is recommended for patients who develop symptoms and/or worsening blood counts. These might include increasing fatigue, night sweats, enlarging lymph nodes, or falling red blood cell or platelet counts. Patients with CLL are encouraged to talk with their doctors about whether their symptoms require treatment, balancing the benefits of treatment with side effects that may result.
Chemotherapy
Chemotherapy is the use of drugs to kill cancer cells. In systemic chemotherapy, the drugs travel through the bloodstream to cancer cells throughout the body. When treatment begins, doctors may use a number of different drugs depending on the stage of the disease and the person’s age and health. Chemotherapy may be given in pill form and taken orally (by mouth), by intravenous (IV) infusion, or by subcutaneous (SQ) injection (an injection under the skin). Sometimes, a doctor may use a combination of drugs, but a combination of drugs is not always better than a single drug.
One of the first drugs people with CLL may receive is called fludarabine (Fludara). Fludarabine belongs to a class of drugs called nucleoside analogues. Other nucleoside analogues, including pentostatin (Nipent) and cladribine (Leustatin), are also sometimes used to treat patients with CLL, although fludarabine is used most commonly.
Chlorambucil (Leukeran) and cyclophosphamide (Cytoxan or Neosar) belong to a class of drugs called alkylating agents. Both drugs can be given orally, while cyclophosphamide can also be administered intravenously. Cyclophosphamide may be given alone or with prednisone (available under many brand names), a type of oral corticosteroid.
In the past, patients were initially treated with either fludarabine alone or chlorambucil/prednisone, switching to the alternative regimen if the initial treatment did not work well. Today, these drugs are often administered together, with combinations including rituximab (Rituxan) (see below) and fludarabine; cyclophosphamide and fludarabine; cyclophosphamide, fludarabine and rituximab; or pentostatin, cyclophosphamide, and rituximab. The choice of therapy often depends on the patient’s age, general health, and the interest in and availability of clinical trials.
Other drugs, including alvocidib (sometimes called flavopiridol), bendamustine (Treanda), and lenalidomide (Revlimid) are being evaluated for treating CLL.
Monoclonal antibody therapy
Rituximab is a monoclonal (synthetic) antibody that is given intravenously and binds to a protein on the surface of B cells, killing some of the CLL cells and potentially increasing the effect of chemotherapy. As mentioned above, rituximab is currently being evaluated in combination with chemotherapy.
Alemtuzumab (Campath-1H) is another monoclonal antibody that has been approved by the U.S. Food and Drug Administration (FDA) for use with advanced CLL that is no longer responding to other treatments. It can be used in both T-cell and B-cell CLL. This antibody can be given either intravenously or as a subcutaneous injection.
The medications used to treat cancer are continually being evaluated. Talking with your doctor is often the best way to learn about the medications prescribed for you, their purpose, and their potential side effects or interactions with other medications. Learn more about your prescriptions through Cancer.Net's Drug Information Resources, which provides links to searchable drug databases.
Side effects
Chemotherapy for CLL may be associated with nausea and vomiting, although these symptoms can generally be prevented with appropriate use of antiemetic drugs. For more information, read the ASCO Patient Guide: Preventing Nausea and Vomiting Caused by Cancer Treatment. Doctors will also closely watch for decreases in normal blood counts, which can lead to an increased risk of infection (due to decreased neutrophils), bleeding (due to decreased platelets), and fatigue (due to anemia). To manage these side effects, some patients need transfusions of red blood cells and platelets or antibiotics to treat infections.
Decreases in blood counts following chemotherapy are sometimes more severe in people with CLL than in other types of cancer because of the presence of CLL cells in the bone marrow. Patients receiving treatment are encouraged to ask their doctors about the symptoms they might experience, how such complications might be prevented, and how closely they should be monitored.
Sometimes, subcutaneous injections of white blood cell growth factors such as filgrastim (Neupogen), sargramostim (Leukine), or pegylated filgrastim (Neulasta) are used to increase the bone marrow production of normal white blood cells. Injections of epoetin (Procrit or Epogen) or darbepoetin (Aranesp) can be given to increase red blood cell production. Read the ASCO Patient Guide: White Blood Cell Growth Factors and the ASCO Patient Guide: Epoetin and Darbepoetin Treatment for additional information.
The initial infusions of rituximab and alemtuzumab are often accompanied by fevers and chills, which usually disappear after the first few treatments.
One of the side effects of both CLL and its treatment is the risk of developing a bacterial, viral, or fungal infection. Doctors may call these opportunistic infections because these infectious agents take advantage of a weak immune system. In particular, patients with CLL often develop infections with herpes viruses, either in the form of cold sores or as herpes zoster (shingles). Herpes zoster can become quite painful and progress to a severe infection. Patients should inform their doctors immediately if they notice a rash or skin eruptions resembling hives that are often grouped together and form the appearance of a band across the chest or abdomen, or extend down the legs, arms, or face. These infections can be treated effectively with antiviral drugs and respond best when treated early.
Radiation therapy
Radiation therapy is the use of high-energy x-rays or other particles to kill cancer cells.Radiation therapy is not used frequently in patients with CLL because the disease is located throughout the body. However, radiation therapy can be very helpful in shrinking an enlarged spleen or swollen lymph nodes and eliminating symptoms that may be associated with such growths. Radiation therapy may cause fatigue, mild skin reactions, nausea, diarrhea, or constipation. Most side effects go away soon after treatment is finished.
Remission
The goal of treatment is to eliminate any symptoms associated with the CLL and to reduce the amount of remaining CLL as much as possible. A complete remission (CR) occurs when the doctor cannot find any evidence of cancer remaining after repeated testing. A partial remission (PR) is when there is some cancer remaining; this is the most common outcome following current methods of treatment of CLL. With a PR, patients can feel quite well with normal blood counts, have no swollen lymph nodes or spleen, but still have considerable amounts of CLL remaining as can be detected by examination of the bone marrow biopsy with a microscope.
The goal of newer, more intensive treatments is to produce much greater decreases in the levels of cancer cells in the hope of prolonging survival. In the future, the definition of a CR in CLL is likely to change with advances in technology. For example, some sensitive tests can now detect extremely small levels of the abnormal DNA characteristic of CLL. This measurement is called a molecular remission.
Refractory and recurrent CLL
If the leukemia has not responded to the initial treatment, the disease is referred to as refractory CLL. Because CLL cannot be reliably cured using currently available standard therapies, CLL generally comes back after treatment, called recurrent CLL. The length of response can vary from weeks to many years, and the pace of regrowth of the disease can vary considerably. Detection of recurrence does not mean that treatment is needed immediately, and a period of observation (watch-and-wait approach) is usually advisable, with treatment offered if the disease begins to cause symptoms again. If CLL becomes resistant to one chemotherapy, treatment with other types of drugs is recommended.
Some symptoms can be treated with other approaches, examples of which include radiation treatment or a splenectomy (surgery to remove an enlarged spleen). Some patients who experience recurrent infections may benefit from monthly intravenous infusions of immunoglobulin because patients with CLL have reduced amounts of normal antibodies. Patients who develop antibodies that destroy their own blood cells (see above) are often treated with high doses of corticosteroids to reverse this process.
A stem cell transplant is a medical procedure in which diseased bone marrow is replaced by highly specialized cells, called hematopoietic stem cells. Hematopoietic stem cells are found both in the bloodstream and in the bone marrow. Today, this procedure is more commonly called a stem cell transplant, rather than bone marrow transplant, because blood stem cells are typically what is being transplanted, not the actual bone marrow tissue.
There are two types of stem cell transplantation depending on the source of the replacement blood stem cells: allogeneic (ALLO) and autologous (AUTO). ALLO is the type of transplant typically used for treating CLL.
In an ALLO transplant, stem cells are obtained from a donor whose tissue matches the patient’s on a genetic level; this testing is called HLA-typing. Most often, a patient’s brother or sister serves as the donor, although unrelated donors can serve as the donor too. Millions of people worldwide have volunteered to donate stem cells for patients who do not have matched family members; matches can be made by searching a computer registry. In addition, a donation of stem cells derived from umbilical cord blood is sometimes considered if family donors are not available.
In an AUTO transplant, the patient’s own stem cells are used. The stem cells are obtained from the patient when he or she is in remission from previous treatment. The stem cells are then frozen until they are needed, usually after the high-dose treatment (explained below) is completed. AUTO transplants are usually not done in patients with CLL.
In both types, the goal of transplantation is to destroy cancer cells in the marrow, blood, and other parts of the body and have replacement blood stem cells create healthy bone marrow. In most stem cell transplants, the patient is treated with high doses of chemotherapy and/or radiation therapy to destroy as many cancer cells as possible. This also destroys the patient’s bone marrow tissue and suppresses the patient’s immune system so that, in an ALLO transplant, the donor cells are not rejected by the body. After the high-dose treatment is given, blood stem cells are infused into the patient’s vein to replace the bone marrow and restore normal blood counts from donor cells. Sometimes, ALLO transplants can also be performed after giving lower doses of chemotherapy and/or radiation therapy that are still sufficient to suppress the immune system and allow growth of the donor cells. (These transplants, sometimes termed “mini-transplants” or “reduced intensity transplants” have less immediate side effects, allowing the procedure to be used for older patients.)
Before recommending transplantation, doctors will talk with the patient about the risks of this treatment and consider several other factors, such as the type of cancer, results of any previous treatment, and patient’s age and general health.
For both ALLO and AUTO transplant types, the replacement cells engraft (begin to make new blood cells) and turn into healthy, blood-producing tissue in 10 days to three weeks. Destroying the patient’s own marrow reduces the body’s natural defenses, temporarily leaving the patient at an increased risk of infection. Until the patient’s immune system is back to normal, patients may need antibiotics and blood transfusions.
In an ALLO transplant, another major risk is that the donor’s cells will recognize the patient’s body as foreign, causing graft-versus-host disease (GVHD). GVHD may be a serious complication of allogeneic transplants and can be fatal. Other side effects may include liver problems, diarrhea, infections, and rashes. However, GVHD can also be a benefit, in that the donor cells can recognize the cancer cells as foreign and destroy these cells, a mechanism that is one of the major reasons why ALLO transplantation generally works so well over the long term. The risk of GVHD can be reduced with exact HLA-type matching and the use of preventative drugs.
In an AUTO transplant, there is little risk of GVHD because the replacement stem cells are the patient’s own cells. There is a risk in an autologous transplant that some of the cells that are put back into the patient could still be cancerous, one of the reasons that AUTO transplants are not recommended for patients with CLL.
Doctors and scientists are always looking for better ways to treat patients with CLL. A clinical trial is a way to test a new treatment to prove that it is safe, effective, and possibly better than a standard treatment. Patients who participate in clinical trials are among the first to receive new treatments, such as new chemotherapy before they are widely available. However, there is no guarantee that the new treatment will be safe, effective, or better than a standard treatment.
Patients decide to participate in clinical trials for many reasons. For some patients, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other patients volunteer for clinical trials because they know that finding new drugs and other therapies is the only way to make progress in treating CLL. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with CLL.
To join a clinical trial, patients must complete a learning process known as informed consent. During informed consent, the doctor should list all of the patient’s options, so the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment. Learn more about clinical trials, including patient safety, phases of a clinical trial, deciding to participate in a clinical trial, questions to ask the research team, and links to find cancer clinical trials.
Cancer and its treatment can cause a variety of side effects. However, doctors have made major strides in recent years in reducing pain, nausea and vomiting, and other physical side effects of cancer treatments. Many treatments used today are less intensive but as effective as treatments used in the past. Doctors also have many ways to provide relief to patients when such side effects do occur.
Fear of treatment side effects is common after a diagnosis of cancer, but it may be helpful to know that preventing and controlling side effects is a major focus of your health-care team. Before treatment begins, talk with your doctor about possible side effects of the specific treatments you will be receiving. The specific side effects that can occur depend on a variety of factors, including the type of cancer, its location, the individual treatment plan (including the length and dosage of treatment), and the person’s overall health.
In CLL, the combination of drugs that suppress the immune system may lead to an increase in opportunistic infections (see Treatment). Ask your doctor which side effects are most likely to happen (and which are not), when side effects are likely to occur, and how they will be addressed by the health-care team if they do happen. Also, be sure to communicate with the doctor about side effects you experience during and after treatment. For more information on the most common side effects of cancer and different treatments, along with ways to prevent or control them, visit Cancer.Net’s section on Managing Side Effects, based on ASCO’s curriculum.
In addition to physical side effects, there may be psychosocial (emotional and social) effects as well. Learn more about the importance of addressing these needs in theCancer.Net’s section on Caring for the Whole Patient.
For more information on late effects or long-term side effects, please read the After Treatment section or talk with your doctor.
After treatment for CLL ends, talk with your doctor about developing a follow-up care plan. This plan may include regular physical examinations and/or medical tests to monitor your recovery for the coming months and years.
People should receive regular follow-up examinations for several years to watch for any signs of recurrence or late effects (side effects that occur years after treatment) of chemotherapy. People with CLL are also at a higher risk of developing other cancers, particularly lung, colon, or skin cancers, and they should inform their doctors if they notice new or worsening skin lesions or moles.
People recovering from CLL are encouraged to follow established guidelines for good health, such as maintaining a healthy weight, not smoking, eating a balanced diet, and having recommended cancer screening tests. Talk with your doctor to develop a plan that is best for your needs. Moderate physical activity can help rebuild your strength and energy level. Your doctor can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about Healthy Living After Cancer.
Research for CLL is ongoing. The following advances may still be under investigation in clinical trials and may not be approved or available at this time. Always discuss all diagnostic and treatment options with your doctor.
Assessment of the benefit of different combinations of chemotherapy and monoclonal antibody therapy to increase the number of patients with CRs and potentially prolong survival
Identification of new drugs for CLL treatment; these studies are usually done initially in patients in whom standard treatment is no longer working.
Finding methods of decreasing the side effects of stem cell transplantation using reduced intensity transplantation, which may allow the use of transplantation for more patients
Identification of changes in the genetic composition of the CLL cells, which may help predict outcome, select among different therapies, and provide insight into the cause of the disease. Examples include measuring the frequency of immunoglobulin mutations of the CLL cells, determining the chromosomal abnormalities detected in the CLL cells, and detecting a protein called Zap70 on the surface of the CLL cells. There is some information suggesting that these markers can predict the likelihood that the disease may worsen more rapidly, but there is considerable variation among different patients, and it is too early to use these tests to make decisions about when to begin treatment and the type of treatment to use.
Clinical trials in patients with early-stage CLL to determine whether early treatment is superior to the watch-and-wait approach
Most cancer centers are actively involved in clinical trials aimed at increasing the rate of cure from CLL. The National Cancer Institute’s Clinical Trials Cooperative Group Program sponsors many of these studies. Please talk with your doctor about these ongoing clinical trials.
Regular communication with your doctor is important in making informed decisions about your health care. Consider asking the following questions of your doctor:
What is my diagnosis?
Can you explain my pathology report (laboratory test results) to me?
What stage or risk group is the CLL?
Can you recommend a leukemia specialist?
Where is the best place for me to be treated?
What are my options for treatment?
What is the goal of each treatment option?
What clinical trials are open to me?
What treatment do you recommend? Why?
Do I need to start treatment right away?
What are the possible side effects of this treatment, both in the short term and long term?
How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?
Will this treatment affect my fertility? If so, can you recommend a fertility specialist before treatment begins?
What follow-up tests will I need, and how often will I need them?
What support services are available to me? To my family?
American Society for Blood and Marrow Transplantation
85 West Algonquin Rd., Ste. 550
Arlington Heights, IL 60005
Phone: 847-427-0224 www.asbmt.org
Blood and Marrow Transplant Information Network
2310 Skokie Valley Rd., Ste. 104
Highland Park, IL 60035
Toll Free: 888-597-7674
Phone: 847-433-3313 www.bmtnews.org
Leukemia Research Foundation
3520 Lake Ave., Ste. 202
Wilmette, IL 60091
Phone: 847-424-0600
Toll Free: 888-558-5385 www.leukemia-research.org
The Leukemia & Lymphoma Society
1311 Mamaroneck Ave., Ste. 130
White Plains, NY 10605
Toll Free: 800-955-4572 www.lls.org
National Bone Marrow Transplant Link
20411 West 12 Mile Rd., Ste. 108
Southfield, MI 48076
Toll Free: 800-LINK-BMT (800-546-5268)
Phone: 248-358-1886 www.nbmtlink.org
National Marrow Donor Program
3001 Broadway St., NE, Ste. 500
Minneapolis, MN 55413-1753
Phone: 800-MARROW2 (800-627-7692)
Pat. Adv.: 888-999-6743 www.marrow.org
Printer-Friendly
E-mail this page