Chronic Lymphocytic Leukemia (CLL) Oncology Roadmap
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- Chronic Lymphocytic Leukemia (CLL) Oncology Roadmap
Journey Overview
Chronic lymphocytic leukemia (CLL) is a cancer that begins in the bone marrow, the spongy tissue at the center of bones where most of the body’s blood cells are produced. CLL occurs when white blood cells called lymphocytes undergo mutations. This creates abnormal lymphocytes that do not function well. As these abnormal cells increase in number, there are fewer healthy blood cells. People living with CLL may experience anemia, easy bruising and bleeding, infections, and other problems related to low numbers of healthy blood cells. If you or a loved one is living with CLL, this guide provides information to help you better understand the healthcare providers that you will work with, what questions you should be asking at appointments, and the different aspects of treatment.
Your Comprehensive Care Team
People who are living with CLL will work with a team of healthcare providers with different specialties. This team can include:
Hematologist-Oncologist
Treatment for CLL is typically overseen by a hematologist-oncologist. Hematology is the treatment of blood disorders. Oncology is the treatment of cancers. Hematologist-oncologists are doctors who combine these two disciplines, specializing in the treatment of leukemias and other cancers that affect the blood and bone marrow.
Primary Care Provider
A primary care provider is the healthcare provider that oversees preventive care, screenings, and the treatment of common illnesses and health concerns. For early-stage, low-risk CLL, a person may only require monitoring for changes. A person with CLL may work with a primary care provider during this “watchful waiting” approach.
Oncology Nurse
Nurses play an essential role in care and treatment for any medical condition. A cancer care team for CLL will typically include an oncology nurse, a registered nurse with specialized training in the treatment and management of cancer. Oncology nurses may coordinate care, administer therapies like chemotherapy, and provide patient education.
Additional Members
Other members of a CLL team may include a radiologist (a medical imaging specialist), additional oncologists (such as a radiation oncologist), surgeons (if treatment involves the removal of lymph nodes or the spleen), pathologists (who specialize in the testing of blood and tissue samples), oncology social workers, and mental health professionals.
CLL Treatment Options
- Treatment for CLL is different for everyone, and will depend on the stage, symptoms, and the overall health of the person being treated.
- For early-stage CLL that is not causing symptoms, treatment often begins with “watchful waiting,” with exams to monitor for disease progression.
- The main treatments for CLL are chemotherapy and targeted therapies, drugs that circulate in the body, attach to cancer cells, and destroy cancer cells.
- Treatment can include therapies and procedures to address complications and symptoms, such as anemia (low blood cell counts) and enlarged spleen.
- Some people may be cured with an allogenic stem cell transplant, but most people will not be candidates for this procedure.
Your best source of information about treatment options will be your healthcare team. Work with your providers to understand what treatment options are available, the potential risks and benefits, and how different therapies can achieve different goals.
The Conversation: Questions for Your Healthcare Team
Good communication with your healthcare team is essential to understanding your diagnosis, understanding your treatment options, and making treatment decisions. Use these questions to help during your appointment.
What are the most important things I should know about my diagnosis?
- What is CLL and how does it affect my bones, blood, and health?
- What is the stage of the CLL? What do I need to know about this stage?
- Are there additional tests that can tell us more about my diagnosis?
- What symptoms or health problems do I need to watch for?
What treatment do you currently recommend?
- Why do you recommend this treatment approach?
- How does this treatment work? What is the goal of this treatment?
- How will we know if this treatment is working? What will happen if this treatment does not work?
- Are there potential side effects or risks that I need to know about?
- What will treatment cost? Who can I talk to if I am concerned about the cost of treatment?
What can I do to get the most out of treatment?
- What lifestyle changes should I make?
- Can treatment interact with other medications I am taking?
- How will CLL and treatment affect my normal activities and day-to-day life?
- How often will I need follow-up appointments and exams?
- Where can I learn more about CLL?
- Are there resources or specialists you recommend that I work with?
If you have a question about any aspect of your diagnosis or care, your healthcare providers will be your best source of information.
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