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Non-Hodgkin Lymphoma

  • Overview

    "Parents know their child in ways we can never know the child, while we have a wealth of experience of helping kids through cancer treatment. Between us, we figure out the best way for all of us to support their child."

    Amy L. Billett, MD, director of Lymphoma Program, Boston Children's Hospital

    Learning that your child has non-Hodgkin lymphoma, a cancer of the lymph system, is a frightening and life-changing experience for any parent. We are here to work with you, your child and your family through every moment of your journey.

    As difficult as coping with your child’s cancer can be, it’s important to remember that there is cause for hope: Non-Hodgkin lymphoma is a very treatable cancer, and more than 80 percent of children are cured.

    Non-Hodgkin lymphoma isn’t one disease—it’s a group of many different diseases that share some similarities in terms of how the cells look under a microscope and that they all start in lymph tissue.The non-Hodgkin lymphomas (NHLs) are a diverse group of blood cancers that include any kind of lymphoma except Hodgkin lymphoma.

    • Non-Hodgkin lymphoma is a rare disease that occurs in one out of every 100 thousand children per year in the United States.
    • It is the third most common childhood cancer.
    • It accounts for 7 percent of childhood cancer.
    • It causes the cells in a child’s lymphatic system to abnormally reproduce, eventually causing tumors to grow.
    • Lymphoma cells can spread throughout the body.  Common sites of spread include other lymph nodes, liver, spleen, bone marrow, spinal fluid, and lung.
    • Children with non-Hodgkin lymphoma are usually treated with chemotherapy.  A few kinds of non-Hodgkin lymphoma can be treated with surgery alone.
    • Reed-Sternberg cells are always seen in Hodgkin lymphoma and can rarely occur in non-Hodgkin lymphoma.

    How Dana-Farber/Boston Children’s approaches non-Hodgkin lymphoma

    Patients with non-Hodgkin Lymphoma are treated through Dana-Farber/Boston Children's Cancer and Blood Disorders Center, an integrated pediatric hematology and oncology partnership between Dana-Farber Cancer Institute and Boston Children’s Hospital.  Specialists within our Lymphoma Program ensure that every aspect of your child’s health is overseen before, during and after his treatment period. Our multidisciplinary approach is used at every step of care, including reading x-rays, interpreting the diagnosis and making clinical decisions. We understand each child is different, and we take a multidisciplinary approach to make sure we are delivering the best care possible for your child.

     The New Normal
    With quality of life always a priority, the oncology team at Children's and Dana-Farber knew there must be something they could do to minimize hospital stays. Read more about mobile hydration system they developed.

    Reviewed by Amy L. Billett, MD
    © Children’s Hospital Boston; 2011

    Boston Children's Hospital 
    300 Longwood Avenue (Inpatient)
    44 Binney Street, 3rd Floor (Outpatient)
    Boston MA 02115


    call: 888-PEDI-ONC
    fax: (617) 632-4248

  • In-Depth

    We provide innovative family centered care to support your family’s physical and psychosocial needs. We understand that you may have a lot of questions when your child is diagnosed with non-Hodgkin lymphoma, including:

    • What is it?
    • What can we do about it?
    • How will it affect my child long-term?

    We’ve provided some answers to these questions here, and when you meet with our experts, we can talk with you more about your child’s diagnosis and treatment.

    What is the lymphatic system?

    The lymphatic system is part of the immune system and functions to fight disease and infections from bacteria, viruses and fungi. Learn more about the different parts of the lymphatic system.

    Will it spread to other organs of my child’s body?

    There are many different parts of the body that are part of the lymph system, thus non-Hodgkin lymphoma can start and spread anywhere in the body including the bones, bone marrow, spinal fluid, the liver, kidneys and lungs. Usually the success of treatment is the same whether or not the cancer has spread beyond the lymph system.

    What is the difference between non-Hodgkin lymphoma in children and adults?

    The common kinds of non-Hodgkin lymphoma differ greatly between children and adults.   Many lymphomas in adults are low or intermediate grade.  Most lymphomas in children are high grade which is associated with a favorable response to chemotherapy.

    Major types of childhood non-Hodgkin lymphoma

    • Burkitt’s lymphoma
    • diffuse large B-cell lymphoma
    • lymphoblastic lymphoma
    • anaplastic large cell lymphoma

    There are several types of non-Hodgkin lymphomas, classified based on the size and shape of the lymphoma cells under a microscope, and how the cells grow within the lymph nodes and beyond.

    What is Burkitt’s lymphoma?

    • Burkitt's lymphoma consists of small cells that are “noncleaved”, meaning they have no folds or indentations when viewed under a microscope.
    • Burkitt's lymphoma involves mature B-cells and is a rapidly growing cancer.  Involvement of the gastro-intestinal tract is common.

    Types of large cell lymphoma

    The main subtypes of large cell lymphomas are:

    Diffuse large B-cell lymphoma.  anaplastic large cell lymphoma (ALCL) Large cell lymphoma accounts for about 30 percent of non-Hodgkin lymphomas in children.   Diffuse large B-cell lymphoma can arise in many parts of the body and is often treated the same way as Burkitt’s lymphoma. Anaplastic large cell lymphoma (ALCL) usually arises from T-cells. Although low stage ALCL may be treated the same as other low stage NHL’s, high stage ALCL usually has a unique treatment strategy.

    Is it life-threatening?

    Non-Hodgkin lymphoma can be life threatening if it goes untreated. But after treatment, it’s cured more than 80 percent of the time: It never comes back again and the patient fully recovers.

    Causes

    What causes non-Hodgkin lymphoma?

    Doctor’s aren’t sure what causes non-Hodgkin lymphoma. There has been no evidence to suggest that it is caused by anything that can be prevented, and there is nothing that you or your child did or did not do that caused the cancer.

    There are some risk factors that might increase a child’s likeliness of developing non-Hodgkin lymphoma. These affect only a tiny percentage of those affected, and include:

    • being born with a condition that weakens the immune system, such as Wiskott-Aldrich syndrome, ataxia-telangiectasia or common variable immunodeficiency
    • having a weakened immune system as a result of an acquired disease or condition, or as a result of having had an organ transplant
    • genetics
    • exposure to viral infections
    • chemotherapy and radiation therapy from other cancer treatments

    There has been much investigation into the association of non-Hodgkin lymphoma with:

    What is the relationship between chromosomes and non-Hodgkin lymphoma?

    The majority of Burkitt's lymphoma cases have a chromosome rearrangement between chromosome #8 and #14, which causes genes to change positions and function differently, promoting uncontrolled cell growth.  This DNA change occurs within the lymphoma cells but not in the normal healthy cells in the patient’s body.

    Other chromosome rearrangements occur in non-Hodgkin lymphoma (all types) are also thought to promote excessive cell growth. Children and adults with other hereditary abnormalities have an increased risk of developing non-Hodgkin lymphoma, including patients with:

    Who has the highest risk for developing non-Hodgkin lymphoma?

    • It occurs most often in children between ages 15 and 19, and sometimes as early as age 10.  Very rarely do children have non-Hodgkin lymphoma before the age of 10.  
    • Non-Hodgkin lymphoma affects boys almost twice as often as girls, and is more common among Caucasian children than children of other races.

    Signs and symptoms

    What are the symptoms of non-Hodgkin lymphoma?

    Symptoms of non-Hodgkin lymphoma vary depending where the lymphoma starts.   The disease can progress quickly—from a few days to a few weeks.   Other kinds of non-Hodgkin lymphoma can have minimal symptoms for many months.

    Some children with non-Hodgkin lymphoma have symptoms of an abdominal mass and complain of abdominal pain, fever, constipation and decreased appetite. Other children complain of respiratory problems, dyspnea (pain with deep breaths), cough and wheezing.

    When respiratory symptoms are present, they can quickly worsen, causing a life-threatening emergency.

    While each child may experience symptoms differently, some of the most common include: 

    • painless swelling of the lymph nodes in neck, chest, abdomen, underarm or groin
    • fever without another obvious explanation
    • abdominal symptoms such as swelling or cramping
    • night sweats
    • tiring easily
    • non-intentional weight loss
    • respiratory symptoms such as shortness of breath, trouble breathing, wheezing, high pitched breathing sounds or swelling of the head or neck

    Questions to ask your doctor

    We understand that you are an expert on your child, and can play a critical role in the care of your child. Our team of professionals use your knowledge about your own child to help your child through treatment and on through recovery. By asking questions of your child’s doctor, you can help facilitate a conversation between you and your child’s care team. Sometimes, it’s helpful to write your questions down, so you can remember them for the appointment. There are several questions you can ask your child’s doctor, such as:

    • How do you decide treatment recommendations?
    • How long will my child need to be in the hospital?
    • What are the possible short and long-term complications of treatment? How will they be addressed?
    • How can I get my child eased back into normal social and school activities after treatment?
    • How could my child benefit from being part of a research study?

      Back to School program

      At age 11, Ronald (R.J.) Agostinelli was diagnosed with acute lymphoblastic leukemia, a cancer of the white blood cells. He missed seven months of elementary school while having chemotherapy. R.J. talks about what it was like returning to his class after a long absence.

  • Tests

    The first step in treating your child is forming an accurate and complete diagnosis. Some forms of non-Hodgkin lymphoma can grow very quickly, and thus it is critical to get an accurate diagnosis quickly in order to begin treatment right away.  Other forms of non-Hodgkin lymphoma grow very slowly.  Tests to make a diagnosis and determine stage may include:

    • physical exam to check for lumps from swollen lymph nodes
    • reviewing patient’s history, including current symptoms, eating habits, lifestyle habits, past illnesses and past treatments
    • CAT scan or MRI scan from neck to pelvis
    • PET scan
    • chest x-ray
    • tissue biopsy (removal) from the site of the tumor
    • excisional (complete) biopsy
    • incisional (partial) biopsy
    • core (wide needle) biopsy
    • fine-needle biopsy
    • bone marrow aspiration (removal) and biopsy to look for lymphoma cells
    • lumbar puncture (spinal tap) to get cerebrospinal fluid from the spinal column
    • complete blood count (CBC)

    After we complete all necessary tests, our experts meet to review and discuss what they have learned about your child’s non-Hodgkin lymphoma. Then we meet with you and your family to discuss the results and explain the best treatment options.

    Cancer Glossary
    Non-Hodgkin lymphoma can be difficult to understand, and it may be helpful to know more about complex ideas and terminology in cancer. Visit our Cancer Care Center Glossary for more information.
  • We understand how difficult a diagnosis of non-Hodgkin lymphoma can be, both for your child and for your whole family. That's why our physicians are focused on family-centered care: From your first visit, you'll work with a team of professionals who are committed to supporting all of your family's physical and psychosocial needs. We'll work with you to create a care plan that's best for your child.

    There are several treatment options, which may or may not include a combination of therapies.

    What are some guiding treatment strategies for treating non-Hodgkin lymphoma?

    A major factor for treatment strategy is whether the cancer is isolated (localized) to a specific part of the body, or if it has spread to different parts of the body (disseminated).  Another consideration is the specific kind of non-Hodgkin lymphoma.

    • limited chemotherapy for localized non-Hodgkin lymphoma
    • multiple chemotherapy drugs (combination chemotherapy) and chemotherapy injected into the spinal column (CNS prophylaxis) for disseminated non-Hodgkin lymphoma

    Another factor is whether or not the cancer is a cancer that has returned (recurrent). If your child has recurrent non-Hodgkin lymphoma, treatment might include:

    • high-dose chemotherapy with stem cell transplant
    • combination chemotherapy

    What is treatment like?

    The most common form of treatment is chemotherapy, in which drugs are used to kill cancerous cells, but unfortunately can sometimes damage healthy cells as well. If intensive chemotherapy is needed, your child will mostly likely be extremely tired and not be able to attend school or participate in athletics. Low stage non-Hodgkin lymphoma does not impact the well being of your child or his ability to attend school.

    Chemotherapy

    Children with non-Hodgkin lymphoma are usually treated with chemotherapy.

    Chemotherapy is drug regimen that is either designed to kills cells or prevents them from dividing and spreading. There are several ways to take chemotherapy drugs such as:

    • systemic chemotherapy
      • attacks cancer that has spread throughout the body
      • consumed orally or injected in a vein or muscle or under the skin
    • intrathecal chemotherapy
      • injected into the spinal column,
        • intrathecal chemotherapy can be given to treat lymphoma cells found in the spinal fluid or to prevent lymphoma from spreading to the spinal fluid
    • using two or more chemotherapy drugs, also known as combination chemotherapy
    • high-dose chemotherapy with stem cell transplant
      • Chemotherapy is used to eliminate cancerous blood cells, and then immature blood stem cells are infused into the patient.
      • Infused stem cells grow into healthy blood cells.
      • Stem cells come from the bone marrow or blood of the patient (autologous) or a donor (allogenic) with genetically similar blood.

    Are there any side effects of chemotherapy?

    Chemotherapy is the use of strong drugs throughout the bloodstream designed to kill cancer cells. The side effects are systemic (affecting a child's whole body), and most commonly include nausea and vomiting, but may also include sores in the mouth or gastrointestinal track. Another side effect is myelosuppression, which is when there are a low number of healthy blood cells, including red blood cells, white blood cells and platelets. Myelosuppression increases a child's risk for infection, anemia and low platelet levels which can lead to minor bleeding, such as nose bleeds or bleeding from brushing teeth.

    Radiation

    Radiation is very rarely used to treat children with non-Hodgkin lymphoma. There are several ways to have radiation such as:

    • using a machine outside of the body to send radiation towards the cancer (external radiation)
    • packaging radioactive substances in needles, wires, seeds or catheters to be directly placed on the cancer (internal radiation)
    • using radiation to protect the central nervous system (CNS prophylaxis)

    Monoclonal antibody therapy(clinical trial phase)

    Currently being tested for effectiveness, monoclonal antibody therapy is a type of targeted therapy that is designed to only attack cancerous cells, and not harm normal cells. These antibodies are made in the laboratory, and can identify and “fix” specific abnormalities on cancerous cells. It has several capabilities such as:

    • blocking growth signaling chemicals (growth factor) within the cancer cell to block the cancerous cells from receiving drug, and essentially “starving” the cancer from a lack of nutrients in the blood.
    • serving as a transport to deliver drugs, toxins or radioactive materials directly to cancer cells
    • It is not currently known if adding monoclonal antibody treatment to standard chemotherapy regimens will improve the cure rate in childhood non-Hodgkin lymphoma.

    Stem cell transplant

    If  your child's lymphoma is completely resistant to initial treatment or recurs despite initial treatment, a stem cell transplant may be an option. In a stem cell transplant, the transplanted bone marrow is usually the patient's own (autologous), rather than coming from someone else.

    Complementary and alternative medicines

    Our cancer treatment center has specialists who deliver complementary or alternative medicines. These treatments, which may help control pain and side effects of therapy, include:

    • acupuncture/acupressure
    • therapeutic touch
    • massage
    • herbal supplements
    • dietary recommendations

    Talk to your child's physician about whether complementary or alternative medicine might be a good option for your child.

    What are some factors that affect my child's chance of recovery (prognosis)?

    Some factors for recovery include the stage of cancer, the patient's general health, how far it has spread (metasize) Overall, however, there is little difference in the chance of cure based on spread or type of non-Hodgkin lymphoma.  These factors are important in choosing the best treatment.

    What's the long-term outlook for a child with non-Hodgkin lymphoma?

    Each child's situation is different, and much depends on getting an exact diagnosis and using it to formulate the proper treatment plan. With that said, overall, the long-term outlook is excellent, and more than 80 percent of children with non-Hodgkin lymphoma being cured and can resume a normal full life, returning to school, social activities and athletics usually within a year after treatment has finished.

    What will long-term care for my child be like?

    It's important for your child to visit a survivorship clinic every year to:

    • manage disease complications
    • screen for recurrence of cancer and/or secondary cancers
    • manage late effects of treatment

    A typical follow-up visit may include some or all of the following:

    • physical exam
    • laboratory testing
    • imaging scans

    Through the David B. Perini, Jr. Quality of Life Clinic at Dana-Farber Cancer Institute, childhood cancer survivors receive a comprehensive follow-up evaluation from their cancer care team.

    Coping and support

    Treatment and recovery for non-Hodgkin lymphoma can be especially challenging for you and your whole family, as well as for your child. Learn more about the different patient and family resources available to your whole family at the Dana-Farber/Boston Children's.

    Patient education booklet

    Learning all you can about treatment and recovery can be helpful for you and your family. Download a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide”.

     

    CARE PAGES

    Keep your family and friends up to date during your child's treatment by creating a free Children's CarePage.

  • Research & Innovation

    Visit the Dana-Farber/Boston Children’s website to learn about our current lymphoma clinical trials and research.

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