How might symptoms of CLL progress?

Symptom progression

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In 50–75% of newly diagnosed CLL cases, a person will have no symptoms. It can take several years from a diagnosis before a person experiences symptoms of this type of cancer.

Once symptoms start to appear, an individual or doctor may mistake them for symptoms of other conditions. Also, there is no clear time frame for how symptoms might appear or in what order.

However, the following are some of the common symptoms indicating that a person may have CLL or that the cancer has progressed enough to manifest:

Enlarged spleen

Over time, CLL can lead to the enlargement of the spleen or liver. This can cause a person to always have a feeling of fullness or pain in the abdomen.

An enlarged spleen can also cause the person to feel satiated after consuming a small amount of food, because the spleen pushes against the stomach.

Unexplained weight loss

Unexplained weight loss is another common symptom of several conditions that can also occur in people with CLL.

Individuals with CLL may experience a combination of loss of appetite and weight loss.

Shortness of breath

CLL can lead to a drop in a person’s red blood cell count. Health experts refer to this as anemia.

Symptoms of anemia include shortness of breath, fatigue, and weakness. Some other symptoms of anemia can include:

• trouble walking up the stairs or engaging in physical activity
• faintness
• rapid heart rate
• fast breathing
• pain in the chest
• paling of the skin, nail beds, and mouth
• swelling in the feet and hands

Night sweats

Night sweats are heavy sweating that a person experiences during sleep. Various conditions, side effects of medications, and menopause can cause night sweats to occur.

Night sweats are also a common symptom of CLL.

Dizziness

Dizziness is a common symptom of anemia, which people with CLL typically experience. A person may feel faint in addition to feeling extreme fatigue.

Low blood pressure

Some treatment options, such as chemotherapy, can lower a person’s blood pressure.

Research has also shown that lower red blood cell counts, which CLL can cause, can reduce a person’s blood pressure.

A drop in blood pressure, along with other physical changes, may also indicate that a person is entering the later stages of the condition.

Metastasis

As CLL progresses, it can start to spread to, or invade, other tissue in the body. Health experts call this metastasis.

Metastasizing CLL may spread to areas such as the:

• skin
• gastrointestinal tract
• eye socket
• the mucous membrane that lines the inside of the eyelids
• lungs
• pleura, which are the sacs that line the chest
• heart

Speed of progression

CLL is a slow-progressing form of cancer. It can take several years for symptoms to manifest.

Doctors and researchers in the United States typically follow the Rai staging system, which classifies CLL into five stages, ranging from 0 to 4.

In general, the higher the stage, the shorter a person’s life expectancy due to the increased speed of progression associated with later stages.

Learn more about the staging systems for CLL here.

End-of-life symptoms

As a person approaches death, they may go through some physical changes and show new or worsening symptoms.

According to the National Cancer Institute (NCI), these symptoms may include:

• increased weakness or tiredness
• infrequent urination or darker urine
• heart rate changes
• cold or blotchy hands and feet
• irregular breathing
• drops in blood pressure
• unresponsiveness to others
• lack of interest in food or drink

Learn about end-of-life planning here.

Nearing death

The NCI notes that an individual may experience several symptoms as they near death, including:

• extreme tiredness
• delirium
• pain
• shortness of breath
• constipation
• coughing
• fever
• difficulty swallowing
• myoclonic jerks
• hemorrhage

Individuals receiving end-of-life care, as well as those around them, can find it difficult to navigate their challenging reality. For more information and useful tips, a person can review the NCI guide to end-of-life care.

Treatment at this stage involves making a person as comfortable as possible. It may be helpful for an individual to receive palliative or hospice care.

Learn about palliative and hospice care here.

Turning into lymphoma

In 2–10% of CLL cases, the CLL may go through what health experts refer to as Richter’s transformation (RT). This occurs when the small cells associated with CLL transform into larger, more aggressive cells.

In most cases, the cells transform into large B-cell lymphoma, which is a more aggressive form of non-Hodgkin lymphoma. Rarely, CLL can transform into Hodgkin lymphoma, another aggressive cancer type.

RT does not typically occur in the early stages of CLL, so it is not generally possible to diagnose it early. Health experts do not know the cause of RT.

Symptoms of RT from CLL may include:

• enlarged lymph nodes
• fever
• night sweats
• unexplained weight loss

How to slow the progression of CLL

There is currently no cure for CLL. However, individuals with the condition can extend their life span by taking steps to support their overall health.

A person should make sure to work closely with a doctor, even during the watchful waiting phase of treatment. This should include making all appointments and closely following treatment advice.

An individual should also consider taking steps to care for themselves to improve their quality of life. This can include:

• getting exercise
• eating a balanced diet
• connecting with local support groups

A person could ask a doctor for support group recommendations or use the American Cancer Society support group finder.

Learn about home care for people with leukemia here.

Summary

CLL is a common form of leukemia in adults. Individuals often receive a diagnosis after a routine blood test and may not experience any symptoms for several years following their diagnosis.

As symptoms appear, they can indicate that a person’s condition is worsening. Treatment may aid in alleviating symptoms and help extend a person’s life span.