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Leukemia - Chronic T-Cell Lymphocytic - Introduction

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Chronic T-Cell Leukemia. To see other pages, use the menu. Think of that menu as a roadmap to this full guide.

Leukemia is a cancer of the blood cells. Leukemia begins when healthy blood cells change and grow out of control.

About blood cells

Blood cells are made in the bone marrow, the spongy tissue inside the larger bones in the body. Changes in the bone marrow cells can cause too many or too few of certain blood cells. There are different types of blood cells:

  • Red blood cells that carry oxygen throughout the body

  • White blood cells that fight infection

  • Platelets that help the blood to clot

About leukemia

Types of leukemia are named after the specific blood cell that becomes cancerous, such as the lymphoid cells or myeloid cells. Lymphoid cells are a type of white blood cell. Myeloid cells are bone marrow cells that turn into the cells that fight bacterial infections.

There are 4 main types of leukemia in adults:

There are also less common types of leukemia, but they are generally subcategories of 1 of the 4 main categories listed above. This section focuses on different types of chronic T-cell lymphocytic leukemia, a subtype of chronic lymphocytic leukemia (CLL).

A T cell is a type of white blood cell that directly helps body’s immune system fight infection.

Subtypes of T-cell leukemia

The subtypes of T-cell leukemia include:

  • Large granular lymphocytic leukemia (LGLL). LGLL is a slow-growing T-cell leukemia and is more common in women than in men. The cause of LGLL is unknown. However, about 30% of people with LGLL also have rheumatoid arthritis. Rheumatoid arthritis is a chronic disease causing swelling in the joints of the hands, feet, wrists, knees, hips, or shoulders. Also, nearly half of patients with LGLL have a genetic change in either a gene called STAT3 or another called STAT5B.

  • T-cell prolymphocytic leukemia (T-PLL). T-PLL is an aggressive subtype of CLL. It is the most common mature T-cell leukemia in adults. T-PLL is more common in older men, but women may also develop T-PLL. It can affect the skin, but in a different way than Sezary syndrome (see below). Patients with T-PLL often have a change to the their T-cells called a T-cell receptor rearrangement, which is linked to abnormal T-cell growth.

  • Adult T-cell leukemia/lymphoma (ATLL). ATLL has 4 subtypes. Depending on the different features, it is subclassified as smoldering, chronic, acute, or adult T-cell lymphoma, which is a cancer of the lymph system. The acute and the adult T-cell lymphoma subtypes grow quickly. ATLL is caused by a retrovirus called the human T-cell leukemia virus (HTLV1).

  • Sezary syndrome. Sezary syndrome is a form of mycosis fungoides, a T-cell lymphoma that occurs in the skin. Sezary syndrome is usually slow-growing and takes years to develop from mycosis fungoides, which is located only on the skin. Sezary syndrome is generally diagnosed when large numbers of the lymphoma cells are found in the blood, often together with reddening of the skin, which is called erythroderma.

Looking for More of an Introduction?

If you would like more of an introduction, explore these related items. Please note these links will take you to other sections on Cancer.Net:

  • ASCO Answers Fact Sheet: Read a 1-page fact sheet that offers an introduction to CLL. This fact sheet is available as a PDF, so it is easy to print out.

  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert in leukemia that provides basic information and areas of research.

The next section in this guide is Statistics. It helps explain how many people are diagnosed with this disease and general survival rates. Or, use the menu to choose another section to continue reading this guide.

Leukemia - Chronic T-Cell Lymphocytic - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will find information about how many people are diagnosed with leukemia each year. You will also learn some general information on surviving the disease. Remember, survival rates depend on several factors. To see other pages, use the menu.

This year, an estimated 60,140 people of all ages (34,090 men and boys and 26,050 women and girls) in the United States will be diagnosed with leukemia. Of these, an estimated 18,960 people (10,830 males and 8,130 females) will be diagnosed with CLL.

It is estimated that 4,660 deaths (2,880 males and 1,780 females) from CLL will occur this year. T-cell leukemia is rare, and the number of people diagnosed each year is much lower. Doctors cannot say for sure how long anyone will live with T-cell leukemia.

It is important to remember that statistics on how many people survive this type of leukemia are an estimate. The estimate comes from data based on thousands of people with CLL in the United States each year. So, your own risk may be different. Learn more about understanding statistics.

Statistics adapted from the American Cancer Society's publication, Cancer Facts and Figures 2016.

The next section in this guide is Risk Factors. It explains what factors may increase the chance of developing this disease. Or, use the menu to choose another section to continue reading this guide.

Leukemia - Chronic T-Cell Lymphocytic - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will find out more about the factors that increase the chance of developing T-cell leukemia. To see other pages, use the menu.

A risk factor is anything that increases a person’s chance of developing cancer. Although risk factors often influence the development of leukemia, most do not directly cause the disease. Some people with several risk factors never develop leukemia, while others with no known risk factors do. However, knowing your risk factors and talking about them with your doctor may help you make more informed lifestyle and health care choices.

In general, leukemia occasionally can be caused by a genetic mutation or change. These may be genetic mutations passed from generation to generation within a family or from environmental factors, such as smoking or exposure to chemicals or radiation. However, most often the cause of leukemia is not known. 

The following risk factor can increase a person’s chance of developing T-cell leukemia:

  • Race/Ethnicity. ATLL is more common in people of Japanese, West Indian, and African American descent.

The next section in this guide is Symptoms and Signs. It explains what body changes or medical problems this disease can cause. Or, use the menu to choose another section to continue reading this guide.

Leukemia - Chronic T-Cell Lymphocytic - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. To see other pages, use the menu.

People with T-cell leukemia may experience the following symptoms or signs. Sometimes, people with T-cell leukemia do not have any of these changes. Or, the cause of a symptom may be another medical condition that is not leukemia.

  • Recurrent infections from low numbers of infection-fighting white blood cells called neutrophils

  • Bleeding or bruising easily

  • Unexplained fevers and/or chills

  • Unexplained tiredness

  • Persistent, unexplained abdominal pain on the left side from a swollen spleen (LGLL, T-PLL)

  • Swollen lymph nodes (T-PLL, ATLL)

  • Rash or skin lesions (T-PLL, ATLL, Sezary syndrome)

  • Frequent urination and/or constipation from high levels of calcium in the blood, called hypercalcemia (ATLL).

  • Itching involving the skin (ATLL, Sezary syndrome)

  • Feeling full quickly when eating or abdominal pain or fullness (T-PLL)

If you are concerned about any changes you experience, please talk with your doctor. Your doctor will ask how long and how often you’ve been experiencing the symptom(s), in addition to other questions. This is to help find out the cause of the problem, called a diagnosis.

If leukemia is diagnosed, relieving symptoms remains an important part of care and treatment. This may also be called symptom management, palliative care, or supportive care. Be sure to talk with your health care team about symptoms you experience, including any new symptoms or a change in symptoms.

The next section in this guide is Diagnosis. It explains what tests may be needed to learn more about the cause of the symptoms. Or, use the menu to choose another section to continue reading this guide.

Leukemia - Chronic T-Cell Lymphocytic - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of a medical problem. To see other pages, use the menu.

Doctors use many blood and bone marrow tests to diagnose leukemia. They also do tests to learn how much it may have spread. Doctors may also do tests to learn which treatments could work best.

A patient’s signs and symptoms may cause a doctor to suspect leukemia. But, blood and/or bone marrow tests are the only way to know whether a person has leukemia.

This list describes options for diagnosing T-cell leukemia, and not all tests listed will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:

  • The type of leukemia suspected

  • Your signs and symptoms

  • Your age and medical condition

  • The results of earlier medical tests

In addition to a physical examination, the following tests may be used to diagnose T-cell leukemia:

  • Blood tests. The diagnosis of T-cell leukemia begins with a blood test called a complete blood count (CBC). A CBC measures the numbers of different types of cells in the blood. If the blood contains many white blood cells, T-cell leukemia may be suspected.

  • Bone marrow aspiration and biopsy. These 2 procedures are similar and often done at the same time to examine the bone marrow. Bone marrow has both a solid and a liquid part. A bone marrow aspiration removes a sample of fluid with a needle. A bone marrow biopsy is the removal of a small amount of solid tissue using a needle. A pathologist then analyzes the sample(s). A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease. A common site for a bone marrow aspiration and biopsy is the pelvic bone, which is located in the lower back by the hip. The skin in that area is usually numbed with medication beforehand, and other types of anesthesia (medication to block awareness of pain) may be used.

  • Molecular testing. Your doctor may recommend running laboratory tests on a bone marrow sample to identify specific genes, proteins, and other factors unique to the disease.

    • Immunophenotyping is the examination of antigens, a specific type of protein, on the surface of the leukemia cells. Immunophenotyping allows the doctor to confirm the exact type of leukemia.

    • Cytogenetics is the examination of the leukemia cells for abnormal changes to the long strands of genes called chromosomes. It helps doctors confirm the diagnosis and may help determine the person’s chance of recovery.

    Results of these tests will also help decide whether your treatment options include a type of treatment called targeted therapy (see Treatment Options).

  • Skin biopsy.  A skin biopsy is a procedure in which a sample of skin tissue is removed and examined under a microscope to look for T cells in the skin.

  • Computed tomography (CT or CAT) scan. A CT scan creates a 3-dimensional picture of the inside of the body using x-rays taken from different angles. A computer then combines these images into a detailed, cross-sectional view that shows any abnormalities, including swollen lymph nodes or a swollen spleen. A CT scan can also be used to measure the size of a swollen lymph node. Sometimes, a special dye called a contrast medium is given before the scan to provide better detail on the image. This dye can be injected into a patient’s vein or given as a pill to swallow.

After diagnostic tests are done, your doctor will review all of the results with you. If the diagnosis is leukemia, these results also help the doctor describe the disease.

The next section in this guide is Stages. It explains how doctors describe the growth or spread of most types of cancer, called stage, and how this differs for T-cell leukemia. Or, use the menu to choose another section to continue reading this guide. 

Leukemia - Chronic T-Cell Lymphocytic - Stages

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will learn about how doctors describe the growth or spread of most types of cancer, called stage, and how this differs for T-cell leukemia. To see other pages in this guide, use the menu.

Generally, staging is a way of describing where a cancer is located, if or where it has spread, and whether it is affecting other parts of the body. Unlike most solid tumors, there is no standard staging system for LGLL, T-PLL, ATLL, or Sezary syndrome. However, doctors still use diagnostic tests, such as those discussed in the Diagnosis section to evaluate T-cell leukemia to help decide what kind of treatment is best and predict your prognosis, which is the chance of recovery. Talk with your doctor for details on how your specific type of leukemia will be evaluated.

Information about the leukemia will help the doctor recommend a specific treatment plan. The next section in this guide is Treatment Options. Or, use the menu to choose another section to continue reading this guide.

Leukemia - Chronic T-Cell Lymphocytic - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will learn about the different ways doctors use to treat people with T-cell leukemia. To see other pages, use the menu.

This section tells you the treatments that are the standard of care for this type of leukemia. “Standard of care” means the best treatments known. When making treatment plan decisions, patients are also encouraged to consider clinical trials as an option. A clinical trial is a research study that tests a new approach to treatment. Doctors want to learn if it is safe, effective, and possibly better than the standard treatment. Clinical trials can test a new drug, a new combination of standard treatments, or new doses of standard drugs or other treatments. Your doctor can help you consider all your treatment options. To learn more about clinical trials, see the About Clinical Trials and Latest Research sections.

Treatment overview

In cancer care, different types of doctors often work together to create a patient’s overall treatment plan that combines different types of treatments. This is called a multidisciplinary team. Cancer care teams also include a variety of other health care professionals, including physician assistants, oncology nurses, social workers, pharmacists, counselors, dietitians, and others.

The goal of treatment for a blood-related cancer is to bring about a remission. A remission is when leukemia cannot be detected in the body and there are no symptoms. This may also be called having “no evidence of disease” or NED.

Descriptions of the most common treatment options for T-cell leukemia are listed below, followed by an outline of the treatment options by each subtype. Treatment options and recommendations depend on several factors, including the type and subtype of leukemia, possible side effects, and the patient’s preferences and overall health. Your care plan may also include treatment for symptoms and side effects, an important part of care. Take time to learn about all of your treatment options and be sure to ask questions about things that are unclear. Also, talk about the goals of each treatment with your doctor and what you can expect while receiving the treatment. Learn more about making treatment decisions.

Active surveillance/watch and wait

During active surveillance, the leukemia is monitored using blood and other tests at regularly scheduled checkups to track blood cell counts and look for other signs that the disease is worsening. Studies have shown that, for people with certain disease features, active surveillance is not harmful when compared with starting treatment earlier. Treatment begins when people develop signs that the disease is worsening, such as increasing fatigue, night sweats, enlarged lymph nodes, or decreasing blood cell counts. People with leukemia are encouraged to talk with their doctors about whether their symptoms need treatment, and to consider the benefits of treatment compared with the side effects of treatment.

Chemotherapy

Chemotherapy is the use of drugs to destroy cancer cells, usually by stopping the cancer cells’ ability to grow and divide. Chemotherapy is given by a medical oncologist, a doctor who specializes in treating cancer with medication, or a hematologist, a doctor who specializes in treating blood disorders.

Systemic chemotherapy gets into the bloodstream to reach cancer cells throughout the body. Common ways to give chemotherapy include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed (orally).

A chemotherapy regimen (schedule) usually consists of a specific number of cycles given over a set period of time. A patient may receive 1 drug at a time or a combination of different drugs at the same time. The specific drugs used for T-cell leukemia are listed further below under “Treatments specific to T-cell subtype.”

The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, hair loss, loss of appetite, and diarrhea. These side effects usually go away once treatment is finished.

Learn more about the basics of chemotherapy and preparing for treatment. 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 by using searchable drug databases.

Immunotherapy

Immunotherapy, also called biologic therapy, is designed to boost the body's natural defenses to fight the leukemia. It uses materials made either by the body or in a laboratory to improve, target, or restore immune system function. Recombinant interferon alpha (Alferon, Infergen, Intron A, Roferon-A) is used as a treatment for ATLL. Interferon is a natural protein found in the body that stimulates the immune system. Learn more about the basics of immunotherapy.

Targeted therapy

Targeted therapy is a treatment that targets the cancer’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. This type of treatment blocks the growth and spread of cancer cells while limiting damage to healthy cells.

Recent studies show that not all cancers have the same targets. To find the most effective treatment, your doctor may run tests to identify the genes, proteins, and other factors involved in your leukemia. This helps doctors better match each patient with the most effective treatment whenever possible. In addition, many research studies are taking place now to find out more about specific molecular targets and new treatments directed at them. Learn more about the basics of targeted treatments.  

For T-cell leukemia, a type of targeted therapy called a monoclonal antibody may be used. It recognizes and attaches to a specific protein on the surface of the leukemia cells. It does not affect cells that don’t have that protein, which can kill some of the leukemia cells. Talk with your doctor about possible side effects for a specific medication and how they can be managed.

Radiation therapy

Radiation therapy is the use of x-rays or other high-energy particles to destroy cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist. The most common type of radiation treatment is called external-beam radiation therapy, which is radiation given from a machine outside the body. When radiation treatment is given using implants, it is called internal radiation therapy or brachytherapy. A radiation therapy regimen (schedule) usually consists of a specific number of treatments given over a set period of time.

Side effects from radiation therapy include fatigue, mild skin reactions, upset stomach, and loose bowel movements. Most side effects go away soon after treatment is finished.  Learn more about the basics of radiation therapy.

Surgery

Surgery to remove the spleen, which also makes white blood cells, is called a splenectomy. This type of surgery may be recommended for some patients. A surgical oncologist is a doctor who specializes in treating cancer using surgery. Learn more about the basics of surgery.

Stem cell transplantation/bone marrow transplantation

A stem cell transplant is a medical procedure in which bone marrow that contains leukemia is replaced by highly specialized cells, called hematopoietic stem cells, that develop into healthy bone marrow. Hematopoietic stem cells are blood-forming cells 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 it is the stem cells in the blood that are typically being transplanted, not the actual bone marrow tissue.

Stem cell transplantation is not a common treatment option for people with T-cell leukemia, because it is not always an effective treatment for this disease and because many patients with this disease are older and the risks of the procedure are higher.  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 leukemia, results of any previous treatment, and patient’s age and general health.

There are 2 types of stem cell transplantation depending on the source of the replacement blood stem cells: allogeneic (ALLO) and autologous (AUTO). ALLO uses donated stem cells, while AUTO uses the patient’s own stem cells. ALLO transplants are the more common type used for patients with chronic T-cell leukemia.

In both types, the goal is to destroy all of the leukemia cells in the marrow, blood, and other parts of the body using high doses of chemotherapy and/or radiation therapy and then allow replacement blood stem cells to create healthy bone marrow. Learn more about the basics of stem cell and bone marrow transplantation.

Getting care for symptoms and side effects

Leukemia and its treatment often cause side effects. In addition to treatment to slow, stop, or eliminate the disease, an important part of care is relieving a person’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting the patient with his or her physical, emotional, and social needs.

Palliative care is any treatment that focuses on reducing symptoms, improving quality of life, and supporting patients and their families. Any person, regardless of age or type and stage of cancer, may receive palliative care. It works best when palliative care is started as early as needed in the cancer treatment process. People often receive treatment for the leukemia and treatment to ease side effects at the same time. In fact, patients who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional support, and other therapies. You may also receive palliative treatments similar to those meant to eliminate the leukemia, such as chemotherapy, surgery, or radiation therapy. Talk with your doctor about the goals of each treatment in your treatment plan.

Before treatment begins, talk with your health care team about the possible side effects of your specific treatment plan and palliative care options. And during and after treatment, be sure to tell your doctor or another health care team member if you are experiencing a problem so it can be addressed as quickly as possible. Learn more about palliative care.

Treatments specific to T-cell leukemia type

  • LGLL. For LGLL, active surveillance is sometimes recommended during its early stages, with treatment beginning once symptoms develop. When treatment for the disease is needed, LGLL can be treated with drugs that lower the immune system:

    • Cyclosporine (Gengraf, Neoral, Sandimmune), which may also be used when low neutrophil and platelet levels cause problems

    • Cyclophosphamide (Neosar)

    • Low-dose methotrexate (multiple brand names)

    Sometimes, low levels of neutrophils cause infections that need antibiotic treatment. Treatment with growth factors, such as filgrastim (Neupogen, Zarxio), which can stimulate the growth of neutrophils, is sometimes used when infections from low neutrophil counts become a problem. Treatment with a combination of drugs is sometimes used if the disease is worsening quickly. The combination is similar to that used for aggressive lymphoma. Learn more about non-Hodgkin lymphoma treatment.

  • T-PLL. T-PLL may be treated with the following drugs:

    • Fludarabine (Fludara)

    • Chlorambucil (Leukeran)

    • Cyclophosphamide

    • Doxorubicin (Adriamycin)

    • Vincristine (Vincasar)

    • Pentostatin (Nipent)

    • Prednisone (multiple brand names)

    • Alemtuzumab (Campath), a monoclonal antibody (see Targeted therapy above) that has helped manage T-PLL for some patients

  • Adult T-cell leukemia/lymphoma (ATLL). ATLL may be treated with zidovudine (Retrovir) and recombinant interferon alpha if it is in the chronic or acute phase. The goal of treatment is to strengthen the immune system and treat the human T-cell leukemia virus (HTLV). The lymphoma phase is usually treated with combination chemotherapy.

  • Sezary syndrome. Treatments for Sezary syndrome may be focused on the skin or may include systemic whole-body treatments. Skin treatments include the following.

    • Skin creams

    • The use of light to kill cancer cells, called phototherapy

    • Radiation therapy, including total skin electron-beam radiation therapy, which can treat the entire surface of the skin.

    Systemic treatments for Sezary syndrome include the following. The choice of treatment depends on the extent of the disease, as well as other factors.

    • Chemotherapy

    • Oral bexarotene (Targretin), a drug that is similar to vitamin A

    • Denileukin diftitox (Ontak), an antibody which helps deliver a drug directly to the leukemia cells

    • Alpha interferon

    • Sometimes, ALLO stem cell transplantation

    • Alemtuzumab may also be effective

    • Vorinostat (Zolinza) and romidepsin (Istodax) for cutaneous (skin) T-cell lymphoma if other treatments do not work

Refractory T-cell leukemia

If the leukemia continues to worsen despite treatment, it is called refractory leukemia. If this happens, it is a good idea to talk with doctors who have experience in treating it. Doctors can have different opinions about the best standard treatment plan. Also, clinical trials might be an option. Learn more about getting a second opinion before starting treatment, so you are comfortable with your treatment plan chosen.

Your treatment plan that includes may include a combination of chemotherapy, immunotherapy, and targeted therapy. Palliative care will also be important to help relieve symptoms and side effects.

For most patients, a diagnosis of refractory leukemia is very stressful and, at times, difficult to bear. Patients and their families are encouraged to talk about the way they are feeling with doctors, nurses, social workers, or other members of the health care team. It may also be helpful to talk with other patients, including through a support group.

Remission and the chance of recurrence

A remission is when leukemia cannot be detected in the body and there are no symptoms. This may also be called having “no evidence of disease” or NED. 

A remission may be temporary or permanent. This uncertainty causes many people to worry that the leukemia will come back. While many remissions are permanent, it is important to talk with your doctor about the possibility of the leukemia returning. Understanding your risk of recurrence and the treatment options may help you feel more prepared if the disease does return. Learn more about coping with the fear of recurrence.

If the leukemia does return after the original treatment, it is called recurrent leukemia. When this occurs, a cycle of testing will begin again to learn as much as possible about the recurrence. After testing is done, you and your doctor will talk about your treatment options. Often the treatment plan will include the treatments described above such as chemotherapy, immunotherapy, targeted therapy, and stem cell transplantation, but they may be used in a different combination or given at a different pace. Your doctor may also suggest clinical trials that are studying new ways to treat this type of recurrent leukemia. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

People with recurrent leukemia often experience emotions such as disbelief or fear. Patients are encouraged to talk with their health care team about these feelings and ask about support services to help them cope. Learn more about dealing with a recurrence.

If treatment fails

Recovery from leukemia is not always possible. If the leukemia cannot be cured or controlled, the disease may be called advanced or terminal.

This diagnosis is stressful, and advanced leukemia is difficult to discuss for many people. However, it is important to have open and honest conversations with your doctor and health care team to express your feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families. Making sure a person is physically comfortable and free from pain is extremely important.

Patients who have advanced leukemia and who are expected to live less than 6 months may want to consider a type of palliative care called hospice care. Hospice care is designed to provide the best possible quality of life for people who are near the end of life. You and your family are encouraged to think about where you would be most comfortable: at home, in the hospital, or in a hospice environment. Nursing care and special equipment can make staying at home a workable alternative for many families. Learn more about advanced cancer care planning.

After the death of a loved one, many people need support to help them cope with the loss. Learn more about grief and loss.

The next section in this guide is About Clinical Trials. It offers more information about research studies that are focused on finding better ways to care for people with cancer. Or, use the menu to choose another section to continue reading this guide.

Leukemia - Chronic T-Cell Lymphocytic - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. To see other pages, use the menu.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for patients with T-cell leukemia. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. In fact, every drug that is now approved by the U.S. Food and Drug Administration (FDA) was tested in clinical trials.

Many clinical trials focus on new treatments. Researchers want to learn if a new treatment is safe, effective, and possibly better than the treatment doctors use now. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment. Patients who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there is no guarantee that the new treatment will be safe, effective, or better than what doctors use now.

Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your doctor about clinical trials for symptoms and side effects. There are also clinical trials studying ways to prevent leukemia.

Deciding to join a clinical trial

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 these studies are the only way to make progress in treating T-cell leukemia. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with T-cell leukemia

Sometimes people have concerns that, in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” However, placebos are usually combined with standard treatment in most cancer clinical trials. When a placebo is used in a study, it is done with the full knowledge of the participants. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, patients must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options, so that 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.

Patients who participate in a clinical trial may stop participating at any time for any personal or medical reason. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that patients participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses to leave the clinical trial before it ends.

Finding a clinical trial

Research through clinical trials is ongoing for all types of cancer. For specific topics being studied for T-cell leukemia, learn more in the Latest Research section.

Cancer.Net offers a lot of information about clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of leukemia.

In addition, this website offers free access to a video-based educational program about cancer clinical trials, located outside of this guide.

The next section in this guide is Latest Research. It explains areas of scientific research currently going on for T-cell leukemia. Or, use the menu to choose another section to continue reading this guide.

Leukemia - Chronic T-Cell Lymphocytic - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will read about the scientific research being done now to learn more about this T-cell leukemia and how to treat it. To see other pages, use the menu.

Doctors are working to learn more about T-cell leukemia, ways to prevent it, how to best treat it, and how to provide the best care to people diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Always talk with your doctor about the diagnostic and treatment options best for you.

  • New treatment combinations. New treatments are being tested in clinical trials, including new combinations of chemotherapy and immunotherapy. For ATLL, several new treatments are being studied including bortezomib (Velcade), arsenic trioxide (Trisenox), and daclizumab (Zenapax), which is an anti-IL2 antibody. Romidepsin is also being researched for patients with mycosis fungoides.

  • Palliative care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current T-cell leukemia treatments to improve patients’ comfort and quality of life.

Looking for More About the Latest Research?

If you would like additional information about the latest areas of research regarding leukemia, explore these related items that take you outside of this guide:

The next section in this guide is Coping with Treatment. It offers some guidance in how to cope with the physical, emotional, and social changes that T-cell leukemia and its treatment can bring. Or, use the menu to choose another section to continue reading this guide.

Leukemia - Chronic T-Cell Lymphocytic - Coping with Side Effects

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of leukemia and its treatment. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu.

Every treatment for leukemia can cause side effects or changes to your body and how you feel. For many reasons, people don’t experience the same side effects even when given the same treatment for the same type of leukemia. This can make it hard to predict how you will feel during treatment.

As you prepare to start treatment, it is normal to fear treatment-related side effects. It may help to know that your health care team will work to prevent and relieve side effects. Doctors call this part of treatment “palliative care.” It is an important part of your treatment plan, regardless of your age or the stage of disease.

Coping with physical side effects

Common physical side effects from each treatment option for T-cell leukemia are described within the Treatment Options section. Learn more about side effects of leukemia and its treatment, along with ways to prevent or control them. Changes to your physical health depend on several factors, including the leukemia’s stage, the length and dose of treatment, and your general health.

Sometimes, physical side effects can last after treatment ends. Doctors call these long-term side effects. They call side effects that occur months or years after treatment late effects. Treating long-term side effects and late effects is an important part of survivorship care. Learn more by reading the Follow-up Care section of this guide or talking with your doctor.

Coping with emotional and social effects

You can have emotional and social effects as well as physical effects after a diagnosis of T-cell leukemia. This may include dealing with difficult emotions, such as anxiety or anger, or managing your stress level. Sometimes, patients have problems expressing how they feel to their loved ones, or people don’t know what to say in return.

Patients and their families are encouraged to share their feelings with a member of their health care team. You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your needs.

Coping with financial effects

Treatment for leukemia can be expensive. It is often a big source of stress and anxiety for people with T-cell leukemia and their families. In addition to treatment costs, many people find they have extra, unplanned expenses related to their care. For some people, the high cost stops them from following or completing their treatment plan. This can put their health at risk and may lead to higher costs in the future. Learn more about managing financial considerations, in a separate part of this website.

Caring for a loved one with leukemia

Family members and friends often play an important role in taking care of a person with T-cell leukemia. This is called being a caregiver. Caregivers can provide physical, practical, and emotional support to the patient, even if they live far away.

Caregivers may have a range of responsibilities on a daily or as-needed basis. Below are some of the responsibilities caregivers take care of:

  • Providing support and encouragement

  • Giving medications

  • Helping manage symptoms and side effects

  • Coordinating medical appointments

  • Providing a ride to appointments

  • Assisting with meals

  • Helping with household chores

  • Handling insurance and billing issues

Learn more about caregiving.

Talking with your health care team about side effects

Before starting treatment, talk with your doctor about possible side effects. Ask:

  • Which side effects are most likely?

  • When are they are likely to happen?

  • What can we do to prevent or relieve them?

Be sure to tell your health care team about any side effects that happen during treatment and afterward, too. Tell them even if you don’t think the side effects are serious. This discussion should include physical, emotional, and social effects of leukemia.

Also, ask how much care you may need at home and with daily tasks during and after treatment. This can help you make a caregiving plan.

The next section in this guide is Follow-up Care. It explains the importance of check-ups after treatment for leukemia is finished. Or, use the menu to choose another section to continue reading this guide.

Leukemia - Chronic T-Cell Lymphocytic - Follow-Up Care

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will read about your medical care after treatment is completed, and why this follow-up care is important. To see other pages, use the menu.

Care for people diagnosed with leukemia doesn’t end when active treatment has finished. Your health care team will continue to check to make sure the disease has not returned, manage any side effects, and monitor your overall health. This is called follow-up care.

Your follow-up care may include regular physical examinations, blood tests, bone marrow biopsies, and possibly scans or other imaging tests. Doctors want to keep track of your recovery in the months and years ahead. Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence. Leukemia recurs because small areas of leukemia cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms. During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of recurrence. Your doctor will also ask specific questions about your health. Some people may have blood tests or imaging tests as part of regular follow-up care, but testing recommendations depend on several factors including the type of leukemia originally diagnosed and the types of treatment given.

Managing long-term and late side effects

Most people expect to experience side effects when receiving treatment. However, it is often surprising to survivors that some side effects may linger beyond the treatment period. These are called long-term side effects. In addition, other side effects called late effects may develop months or even years afterwards. Long-term and late effects can include both physical and emotional changes.

Several long-term side effects from leukemia treatment may occur:

  • Lung damage from certain drugs or radiation therapy to the chest.

  • A weakened heart muscle from higher doses of doxorubicin or radiation therapy to the chest.

  • Infertility (inability to have a child) or early menopause from high-dose cyclophosphamide or other chemotherapy.

  • Higher risk of infection from chemotherapy, specifically with alemtuzumab, even after treatment ends.

  • A secondary leukemia or other secondary cancer that develops because of the treatment for the first type of cancer. This is more common from chemotherapy and radiation therapy.

Talk with your doctor about your risk of developing such side effects based on the type of leukemia, your individual treatment plan, and your overall health. If you had a treatment known to cause specific late effects, you may also have certain physical examinations, scans, or blood tests to help find and manage them.

Keeping personal health records

You and your doctor should work together to develop a personalized follow-up care plan. Be sure to ask about any concerns you have about your future physical or emotional health. ASCO offers forms to help create a treatment summary to keep track of the treatment you received and develop a survivorship care plan once treatment is completed.

This is also a good time to decide who will lead your follow-up care. Some survivors continue to see their oncologist, while others transition back to the general care of their family doctor or another health care professional. This decision depends on several factors, including the type of leukemia, side effects, health insurance rules, and your personal preferences.

If a doctor who was not directly involved in your care for leukemia will lead your follow-up care, be sure to share your treatment summary and survivorship care plan forms with him or her, as well as all future health care providers. Details about your treatment are very valuable to the health care professionals who will care for you throughout your lifetime.

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a diagnosis of T-cell leukemia. Or, use the menu to choose another section to continue reading this guide.

Leukemia - Chronic T-Cell Lymphocytic - Survivorship

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will read about how to cope with challenges in everyday life after a diagnosis of T-cell leukemia. To see other pages, use the menu.

What is survivorship?

The word “survivorship” means different things to different people. Common definitions include:

  • Having no signs of cancer after finishing treatment.

  • Living with, through, and beyond cancer. According to this definition, cancer survivorship begins at diagnosis and includes people who continue to have treatment over the long term, to either reduce the risk of recurrence or to manage chronic disease.

Survivorship is one of the most complicated parts of having leukemia. This is because it is different for everyone.

Survivors may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after the diagnosis and have gained a greater acceptance of themselves. Others become very anxious about their health and uncertain of how to cope with everyday life.

Survivors may feel some stress when frequent visits to the health care team end following treatment. Often, relationships built with the health care team provide a sense of security during treatment, and people miss this source of support. This may be especially true as new worries and challenges surface over time, such as any late effects of treatment, emotional challenges including fear of recurrence, sexuality and fertility concerns, and financial and workplace issues.

Every survivor has individual concerns and challenges. With any challenge, a good first step is being able to recognize your fears and talk about them. Effective coping requires:

  • Understanding the challenge you are facing,

  • Thinking through solutions,

  • Asking for and allowing the support of others, and

  • Feeling comfortable with the course of action you choose.

Many survivors find it helpful to join an in-person support group or an online community of survivors. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of your health care team, individual counseling, or asking for assistance at the learning resource center of the center where you received treatment.

Changing role of caregivers

Family members and friends may also go through periods of transition. A caregiver plays a very important role in supporting a person diagnosed with leukemia, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to the diagnosis will become much less or come to an end. Caregivers can learn more about adjusting to life after caregiving in this article.

A new perspective on your health

For many people, survivorship serves as a strong motivator to make positive lifestyle changes.

People recovering from T-cell leukemia are encouraged to follow established guidelines for good health, such as not smoking, limiting alcohol, eating well, and managing stress. Regular physical activity can help rebuild your strength and energy level. Your health care team can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about making healthy lifestyle choices.

In addition, it is important to have recommended medical check-ups and tests (see Follow-up Care) to take care of your health. Rehabilitation may also be recommended, and this could mean any of a wide range of services such as physical therapy, career counseling, pain management, nutritional planning, and/or emotional counseling. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent and productive as possible.

Talk with your doctor to develop a survivorship care plan that is best for your needs.

Looking for More Survivorship Resources?

For more information about survivorship, explore these related items. Please note these links will take you to other sections of Cancer.Net:

  • ASCO Answers Cancer Survivorship Guide: Get this 44-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The booklet is available as a PDF, so it is easy to print out.

  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert that provides information about what comes next after finishing treatment.

  • Survivorship Resources: Cancer.Net offers an entire area of this website with resources to help survivors, including for survivors in different age groups.

The next section offers Questions to Ask the Doctor to help start conversations with your health care team. Or, use the menu to choose another section to continue reading this guide.

Leukemia - Chronic T-Cell Lymphocytic - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will find some questions to ask your doctor or other members of your health care team, to help you better understand your diagnosis, treatment plan, and overall care. To see other pages, use the menu.

Talking often with the doctor is important to make informed decision about your health care. These suggested questions are a starting point to help you learn more about your care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your care.

Questions to ask after getting a diagnosis

  • What is the exact type of T-cell leukemia that I have?

  • Can you explain my pathology report (laboratory test results) to me?

  • How aggressive is my disease? Is it curable?

  • Is it possible to stop its development?

  • How can my symptoms be controlled? For how long?

Questions to ask about choosing a treatment and managing side effects

  • What are my treatment options?

  • What clinical trials are available for me? Where are they located, and how do I find out more about them?

  • What treatment plan do you recommend? Why?

  • What is the goal of each treatment? Is it to eliminate the leukemia, manage the symptoms and side effects, or both?

  • Do I need to start treatment right away?

  • Who will be part of my health care team, and what does each member do?

  • Who will be leading my overall treatment?

  • What are the possible side effects of this treatment, both in the short term and the long term?

  • How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

  • Could this treatment affect my sex life? If so, how and for how long?  

  • Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before treatment begins?

  • If I’m worried about managing the costs of medical care, who can help me?

  • How can I keep myself as healthy as possible during treatment?

  • What support services are available to me? To my family?

  • Whom should I call for questions or problems?

  • Is there anything else I should be asking?

Questions to ask about having chemotherapy, targeted therapy, or radiation therapy

  • What type of treatment is recommended?

  • What is the goal of this treatment?

  • How long will it take to give this treatment?

  • What side effects can I expect during treatment?

  • What are the possible long-term effects of having this treatment?

  • What can be done to relieve the side effects?

Questions to ask about planning follow-up care

  • What is the chance that the leukemia will come back? Should I watch for specific signs or symptoms?

  • What long-term side effects or late effects are possible based on the treatment I received?

  • What follow-up tests will I need, and how often will I need them?

  • How do I get a treatment summary and survivorship care plan to keep in my personal records? 

  • Who will be leading my follow-up care?

  • What survivorship support services are available to me? To my family?

  • Are other members of my family at a higher risk for leukemia?

The next section in this guide is Additional Resources. It offers some more resources on this website beyond this guide that may be helpful to you. Or, use the menu to choose another section to continue reading this guide.

Leukemia - Chronic T-Cell Lymphocytic - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about cancer care and treatment. This is the final page of Cancer.Net’s Guide to Chronic T-Cell Leukemia. To go back and review other pages, use the menu.

Cancer.Net includes many other sections about the medical and emotional aspects of leukemia, both for the person diagnosed and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.

Beyond this guide, here are a few links to help you explore other parts of Cancer.Net:

This is the end of Cancer.Net’s Guide to Chronic T-Cell Leukemia. Use the menu to select another section to continue reading this guide.