Chronic lymphocytic leukemia (CLL) is a type of cancer that affects the blood and bone marrow. It is one of the most common types of leukemia in adults. CLL causes a gradual increase in the number of abnormal white blood cells called lymphocytes. These cancerous lymphocytes crowd out healthy cells in the bone marrow, leading to low blood cell counts. This can result in fatigue, increased risk of infection, and uncontrolled bleeding. While CLL tends to progress slowly in many people, it is still considered a serious disease. Understanding the typical symptoms and level of pain associated with CLL is important for patients and their loved ones.
What is Chronic Lymphocytic Leukemia (CLL)?
CLL is a cancer that begins in the bone marrow and lymphatic system. The bone marrow produces three main types of blood cells: red blood cells, white blood cells, and platelets. In CLL, the DNA of a type of white blood cell called B-lymphocytes becomes damaged. This causes the cells to multiply uncontrollably and live longer than normal lymphocytes. Over time, these abnormal B-lymphocytes accumulate in the bone marrow, crowding out healthy blood cell production. This leads to anemia, infections, bleeding disorders and other problems.
CLL is one of the most common leukemias in Western countries, accounting for around 1/3 of all leukemia cases. The American Cancer Society estimates that around 20,940 new cases will be diagnosed in the U.S. in 2022. CLL more commonly affects older adults, with the average age at diagnosis being around 70 years old. Men have a slightly higher risk of developing CLL than women. The exact causes are unknown, but some risk factors include family history, exposure to certain chemicals, and having a weakened immune system.
What are the Common Symptoms of CLL?
In the early stages, CLL may not cause any noticeable symptoms. As the number of abnormal lymphocytes grows, people may experience:
- Fatigue and weakness
- Shortness of breath with exertion
- Frequent infections
- Swollen lymph nodes
- Night sweats
- Unexplained weight loss
- Easy bruising or bleeding
The enlarged lymph nodes and spleen can sometimes cause abdominal pain or discomfort. The fatigue associated with CLL is often described as feeling constantly run down. This tiredness is caused by inadequate oxygen delivery from low red blood cell counts. As the disease advances, the symptoms tend to worsen as blood cell counts continue to drop. Severe fatigue, recurrent infections, and heavy bleeding are common issues in later stages if the CLL remains untreated.
Does CLL Cause Bone Pain?
Bone pain is not a primary symptom of early stage CLL. However, as the cancerous lymphocytes infiltrate and expand in the bone marrow, some patients do experience bone pain. This pain may feel like a dull, constant ache affecting the lower back, hip bones, sternum, ribs, and sometimes the long bones of the arms and legs. Movement and pressure on the affected bones can make this discomfort worse. Some contributing factors to bone pain include:
- The increased pressure in the bone marrow as cancerous cells multiply and build up.
- Damage to bone tissue from the effects of the leukemia cells as well as chemotherapy medications.
- Calcium release from the bones increasing blood calcium levels (hypercalcemia).
For those with significant bone pain, over-the-counter medications like acetaminophen or ibuprofen may help provide some relief. If the pain persists, prescription opioids or bone-modifying drugs like bisphosphonates can also be used in consultation with your oncologist. Non-drug approaches like massage, warm baths, or transcutaneous electrical nerve stimulation (TENS) could provide additional pain management benefits.
Is CLL Painful in Lymph Nodes and Spleen?
Swollen and enlarged lymph nodes in the neck, underarms, and groin are common physical findings in CLL. This lymphadenopathy occurs as malignant lymphocytes accumulate in the lymph nodes, causing them to expand in size. For some patients, significant lymph node swelling can cause painful sensations of pressure, fullness, or tightness. Lymph nodes that grow to over 2-3 cm are more likely to be painful. The swollen nodes are not usually exquisitely tender to touch. Any rapid enlargement may increase discomfort due to the stretching of the lymph node capsule.
Splenomegaly, or an enlarged spleen, develops in the majority of CLL patients at some point. The spleen normally helps filter the blood, but in CLL it can become overloaded with abnormal lymphocytes. This spleen enlargement may cause pain or a dragging sensation in the upper left abdomen. Some of the potential factors behind spleen pain include:
- The growing spleen putting pressure on surrounding organs.
- The spleen capsule being stretched as the spleen swells in size.
- Low platelet counts causing easy bleeding into an enlarged spleen.
Feeling full earlier than normal when eating and difficulty taking deep breaths can indicate an enlarged spleen. While spleen pain may be bothersome, removing the spleen is usually not recommended because it plays an important role in immunity.
Does CLL Cause Pain from Skin Lesions?
Skin lesions and rashes are not considered common symptoms of CLL. However, in rare cases, some patients with advanced CLL can develop painful skin lesions called leukemia cutis. This occurs when groups of leukemia cells infiltrate and disrupt the normal skin layers. Red or purple raised bumps and nodules may appear, typically on the arms, legs, or trunk. Although lesions can develop anywhere, they seem to favor areas of previous skin damage or trauma.
The skin lesions are often tender, itchy, or irritating. Larger growths may oozing fluid and cause bleeding with minor bumps or scratches. Sometimes the lesions ulcerate, resulting in open sores. While leukemia cutis is not life-threatening, it represents advanced and aggressive disease. Skin biopsies are done to confirm the diagnosis. Treating the underlying CLL is the main strategy for resolving the lesions.
What Factors Affect the Severity of Pain in CLL?
The intensity and impact of pain experienced by CLL patients can vary substantially based on several factors:
- Disease Stage – Early stage CLL may cause minimal if any pain, while advanced disease often causes more severe and progressive pain from bone marrow invasion, cytopenias, and organ enlargement.
- Areas of Involvement – Symptoms largely depend on where the cancer is located. Lymph node swelling in certain areas may be more painful than others.
- Degree of Tissue Involvement – Higher cancer cell burden and greater impacts on the structure and function of affected tissues is associated with worse pain.
- Rate of Progression – Faster growing disease tends to cause worse pain as organ impairment and destruction occurs quicker.
- Patient Factors – Individual pain threshold and differences in pain perception can affect reported pain levels.
- Treatment Toxicities – Chemotherapy side effects like low cell counts and nerve damage may worsen pain.
Careful monitoring of pain and symptoms along with regular exams and tests allow doctors to detect concerning changes early. This can guide treatment adjustments to help minimize CLL pain.
How is CLL Pain Treated?
The main goal of treating CLL pain is to slow or stop the progression of the cancer. Chemotherapy medicines, targeted drugs, immunotherapies, and sometimes stem cell transplants offer the best chance of controlling the disease long-term. This can prevent worsening pain from increasing infiltration and destruction of tissues by the leukemia cells. CLL treatment may also shrink enlarged lymph nodes and spleens to alleviate mechanical sources of pain.
Additionally, medications can directly treat the different types of pain caused by CLL:
- Bone Pain – Steroids, NSAIDs, opioids, bisphosphonates
- Swollen Lymph Nodes – Steroids, radiation therapy
- Enlarged Spleen – Rarely may require splenectomy surgery if severe
- Skin Lesions – Topical steroids, antihistamines, radiotherapy
Non-drug techniques like guided imagery, relaxation, and cognitive behavioral therapy may also supplement medical pain management. Good communication with your hematologist/oncologist allows customizing an integrative pain relief plan.
What is the Prognosis for CLL Pain?
With the variety of modern CLL treatments now available, many patients are able to live for years without significant pain or discomfort. The disease course is quite variable – some people have very indolent CLL that may never need treatment, while others develop aggressive disease that requires immediate therapy.
In general, pain and other symptoms are likely to worsen over time if CLL remains untreated and progresses. Poor prognostic factors that indicate faster growing disease include:
- Advanced age (over 65)
- Male gender
- Enlarged lymph nodes or spleen
- Anemia or low platelet count
- Elevated serum beta-2 microglobulin or lactate dehydrogenase (LDH)
- Certain chromosomal abnormalities detected on cytogenetic testing
With treatment, remission lasting months to years is common, allowing patients to live full and active lives. However, CLL is presently considered incurable with standard therapies. Most patients eventually experience recurrence and require additional treatment. Continued research is providing hope that new precision medicines and immunotherapies may further improve long-term prognosis and quality of life for those living with CLL.
Conclusion
The characteristic feature of chronic lymphocytic leukemia is a gradual accumulation of abnormal lymphocytes in the blood, bone marrow, and lymphoid organs. Mild fatigue and enlarged lymph nodes are often the only early symptoms. As CLL advances, worsening blood cell deficiencies contributes to severe fatigue, frequent infections, and easy bleeding and bruising. Bone pain, pressure from swollen lymph nodes and spleen, and rare skin lesions can also cause disease-related pain.
Multiple factors influence the severity of pain for individual patients based on the pace of disease progression and organs impacted. While not curable, modern CLL treatments can effectively control the cancer, allowing patients to live full lives with minimal pain in many cases. Ongoing monitoring and communicating all symptoms with your cancer care team is key to optimizing comfort and quality of life when living with CLL.