Chronic Lymphocytic Leukemia
Overview
Chronic lymphocytic leukemia (CLL) is a slow-growing cancer that affects certain white blood cells (lymphocytes). It develops when the bone marrow (spongy tissue inside some of your bones) makes too many cancerous white blood cells.
For some people, CLL progresses so slowly that treatment may not be needed for a long time or at all. Others have a more aggressive form of CLL. It grows quickly and may require treatment sooner.
When the lymphocytes grow in lymph nodes instead of blood or bone marrow, the condition is called small lymphoma (SLL). Treatment for CLL and SLL is the same.
While we can treat CLL, it isn’t usually curable. You may need periodic treatment to control CLL.
We’ll work with you to provide the best treatments available.
Symptoms
CLL typically grows so slowly that it usually doesn’t cause symptoms. It’s often found during routine blood tests for other health issues.
If you do have symptoms, they’re caused by leukemia cells taking over the bone marrow. This can lead to 1 or more symptoms, including:
- Feeling tired, weak, and short of breath from too few red blood cells
- Recurring infections (colds to pneumonia) and fever from too few healthy white blood cells
- Bruising and bleeding from too few platelets
Other symptoms may include:
- Pain or a “full” feeling on the upper left side of the abdomen caused by an enlarged spleen
- Unexplained weight loss, fever, or night sweats (known as B-symptoms)
- Swollen lymph nodes on the neck, underarms, or groin
Some of these symptoms may also be caused by other medical conditions. It’s important to talk to your doctor if you develop any unexplained symptoms.
Risk Factors and Diagnosis
Although we don’t know the exact cause of CLL, risk factors include:
- Aging (generally over 50)
- Having a family history
- Being exposed to Agent Orange
- Being Caucasian
- Being male
Having one or more risk factors doesn’t mean you’ll develop CLL. Most people diagnosed with CLL have no risk factors.
Diagnosis
For most cancers, stages are used to indicate the size of a solid tumor and how far it’s spread. Because leukemia is a cancer of the blood, it doesn’t form a solid mass.
For CLL, we use stages to describe the extent of the disease. We base this on blood cell counts and if certain organs are involved.
- Stage 0: The lymphocyte blood count is too high, but there are no other symptoms. Red blood cell and platelet counts are close to normal, and the lymph nodes, liver, and spleen are normal size.
- Stage I: The lymphocyte blood count is too high, and lymph nodes are swollen. The red blood cell and platelet counts continue to be near normal, and the liver and spleen aren’t enlarged.
- Stage II: The lymphocyte blood count is too high, and the liver or spleen is enlarged. The lymph nodes might be swollen, and the red blood cell and platelet counts are near normal.
- Stage III: The lymphocyte blood count is too high, and the red blood cell count is too low. You might have enlarged lymph nodes, liver, or spleen. Platelet counts remain near normal.
- Stage IV: The lymphocyte blood count is too high, and the platelet count is too low. You might have low red blood cell count, swollen lymph nodes, or an enlarged liver or spleen.
It’s important that we know the CLL stage. This information helps us develop the best treatment plan for you, including watchful waiting when appropriate.
Treatment
For some, CLL progresses so slowly that treatment may not be needed for a long time or even at all. Your treatment will depend on the stage and extent of CLL.
Watchful waiting
Because CLL grows slowly, you may not need any treatment in the early stages of the cancer. This is called watchful waiting.
You’ll have regular checkups so we can monitor your blood counts and physical health. If your blood counts get worse or you develop symptoms, you’ll begin treatment.
It can be difficult to know you have cancer but not receive treatment. We’ll talk together about watchful waiting. It’s the best approach for low-risk CLL.
Treating CLL too early doesn’t offer any benefits. It can even cause unnecessary treatment side effects.
Infection prevention
CLL decreases your blood cell counts, which puts you at increased risk of infections and bleeding. You may need medications or other treatments to prevent infection and bleeding.
It’s important to protect yourself throughout cancer treatment, until your blood cell counts return to normal. Your risk of infection may continue even after treatment if the number of healthy white blood cells remains low.
To reduce your risk of infections and bleeding:
- Wash your hands often with soap and water.
- Avoid large crowds and people who have a cold or are ill.
- Use disinfecting wipes or hand sanitizer after touching frequently used objects.
- Keep current with vaccinations, including the pneumonia (pneumococcal) vaccine and flu shot. Make sure caregivers and family members get their flu shots as well.
- Use an electric razor to shave instead of a blade.
- Avoid flossing and use a soft toothbrush.
- Apply lotion to prevent dry, cracked skin.
- Avoid blood thinner medicines (like aspirin) that make it harder for the blood to clot.
Clinical trials
We’re always looking for new and better ways to treat CLL. Clinical trials are research studies that test new treatments or procedures that may prove better than standard treatments.
We’ll talk with you about whether a clinical trial may be right for you.
Targeted Therapy
Targeted therapy drugs attack specific parts of a cancer cell that normally help it survive and grow. Because it targets cancer cells, there’s less damage to healthy cells. However, you may still have side effects, such as:
- Flu-like symptoms, including fever and chills
- Fatigue and dizziness
- Nausea and vomiting
- Skin redness, dryness, and itching
- Low blood cell counts
We’ll monitor you closely for side effects. Let us know as soon as you notice any symptoms.
These are some of the targeted therapy medications we might use to treat CLL.
Ibrutinib
This is the most commonly used drug. Side effects tend to be mild, although it’s important to avoid infections while taking it.
Rituximab (Rituxan)
This is an antibody that attacks leukemia cells. It’s often prescribed on its own or is combined with a traditional chemotherapy drug.
Idelalisib
You may have a few of the listed side effects while taking this drug. Inactive infections (like hepatitis) might become active again.
Venetoclax
This drug may be taken alone or with immunotherapy. Side effects might occur, such as reduced healthy blood counts. More serious side effects include pneumonia, infections, and kidney damage (tumor lysis syndrome).
Chemotherapy
Chemotherapy is commonly used to kill CLL cells. Chemotherapy drugs can be delivered through a vein or in pill form.
Chemotherapy drugs enter the bloodstream to attack leukemia cells throughout the body (systemic chemotherapy).
Chemotherapy may be given along with other treatment (such as an immunotherapy).
Side effects
Chemotherapy can cause mild to severe side effects, depending on the type, dose, and how long it’s given. Not everyone has the same side effects even when taking the same chemotherapy drugs.
Common side effects include:
- Hair loss
- Nausea and vomiting
- Loss of appetite
- Mouth sores
- Fatigue
- Low blood cell counts
- Bleeding
- Infections
Chemotherapy can cause dangerously low blood cell counts. You may need:
- Medications to boost your white blood cell count.
- Antibiotics to treat and prevent infections.
- Transfusions of red blood cells and platelets.
We can help you manage any side effects. Be sure to let us know as soon as you develop any symptoms. Side effects typically go away after treatment ends.
Immunotherapy
Immunotherapy drugs attack the surface of the leukemia cells. Your body’s immune system can then recognize and destroy the cancer cells.
Immunotherapy drugs are usually combined with chemotherapy but may be used alone to treat CLL.
Side effects
Because these drugs specifically target cancer cells, there’s less damage to healthy cells. They may still cause side effects, such as:
- Fever
- Chills
- Fatigue
- Nausea
- Rash
- Headaches
- Hepatitis B reactivation
We’ll watch you closely for side effects. Let us know as soon as you notice any symptoms.
Radiation Therapy
Radiation therapy uses high-energy radiation (X-rays) to kill cancer cells. The most common type is external beam radiation therapy, which delivers radiation from a machine outside the body.
Low doses of radiation may help relieve pain and other symptoms caused by an enlarged spleen or swollen lymph nodes. It’s also sometimes used to treat the entire body before a stem cell transplant.
Side effects
The radiation beam is often aimed at a specific part of the body. The side effects depend on the treated area but may include:
- Hair loss
- Skin changes, such as redness
- Nausea and vomiting
- Diarrhea
- Fatigue
Let us know if you develop any side effects, so we can help manage them.
Stem Cell Transplant
If you have high-risk CLL, we might recommend high doses of chemotherapy (or sometimes whole-body radiation) to destroy the bone marrow. After this, you’ll have a stem cell transplant. This lets the bone marrow return to making healthy blood cells.
Stem cells are usually obtained from circulating blood. Or the cells may come from a newborn’s umbilical cord and placenta, which are rich in blood stem cells.
Although not common, we may use stem cells from a donor (allogeneic transplant). The donor may be a relative or someone whose tissue type matches yours. The closer the match, the more likely your body will accept the donor stem cells and start producing normal blood cells.
Side effects
After receiving large doses of chemotherapy (or radiation), you’re at high risk of infections and bleeding. It can take weeks to months for the bone marrow to recover.
With donor stem cells (allogeneic transplant), your body may attack tissues of the skin, digestive tract, and liver (called graft-versus-host disease). We’ll monitor you closely for signs of GVHD.
Follow-up Care
CLL is a chronic illness for most people who have it. You may have a cycle of treatment followed by watchful waiting (when your blood counts are stable). If the disease progresses, you’ll go back on treatment.
We’ll work with you to develop a comprehensive care plan for your follow-up. For the coming months and years, we’ll continue to check your blood counts and give you physical exams. You’ll have a bone marrow biopsy when you’re diagnosed, or if you have a stem cell transplant.
Treatment side effects typically go away once treatment ends, but some may persist. For instance, your risk of infection might continue to be high. If so, we’ll recommend certain medications or vaccines. Preventing or treating infections early is an important part of your follow-up care.
Other problems caused by CLL or its treatment may not appear until months or even years after treatment. For example, CLL can sometimes transform into an aggressive type of lymphoma or another form of leukemia (Richter’s transformation).
In addition to attending all follow-up appointments, your survivorship plan includes:
- Eating a healthy diet.
- Stopping or not smoking.
- Getting regular physical activity.
Additional References
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