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Chronic Lymphocytic Leukemia: 8 Things to Know About This Common Blood Cancer

Almost every three minutes, someone in the United States is diagnosed with a blood cancer. And in 2020 alone, around 21,000 Americans were diagnosed with a type of blood cancer called chronic lymphocytic leukemia (CLL), the most common type of leukemia in adults. A cancer diagnosis can be scary, but advances in the testing and treatment of CLL are making it easier for people to live their lives with the disease.

1. CLL doesn’t form a tumor, but is a cancer found in the blood

Leukemia is a type of cancer caused by the rapid production of abnormal white blood cells, which can be found in the blood and bone marrow. But what does that mean? In CLL, for example, these abnormal (cancerous) cells crowd the blood and bone marrow, which leaves less room for healthy white blood cells, red blood cells, and platelets.

2. CLL can be caught by chance during a routine blood test

A CLL diagnosis can be unexpected, especially among people who don’t have symptoms. In fact, it’s often identified during a routine check-up or when an unusually high white blood cell count is noticed in a person’s blood tests for unrelated health problems. But like other diseases, CLL can go undetected for years. That means it’s important to see a doctor regularly for wellness visits and routine screenings.

3. Signs and symptoms of CLL can be confused for the flu

How do you know if you might have CLL? Generally, CLL symptoms develop over time and can be similar to the flu, including fever and night sweats, weakness and extreme tiredness, swollen lymph nodes, and stomach pain.

Senior man laying downBudimir Jevtic/

People with CLL may also experience weight loss and bacterial infections, such as kidney and skin infections, fluid and inflammation of the lungs, and inflammation of the sinuses. As CLL gets worse, it may also be harder for some people to fight off these infections.

CLL is also usually diagnosed later in life, with most people receiving a diagnosis around 70 years of age.

4. There are several tests that can confirm a CLL diagnosis and treatment plan

Doctor taking bloodlightpoet/

Even if you have symptoms, the only way to know for sure if you have CLL is through tests performed by a doctor. There are several different tests that can be performed:

  • A complete blood cell count is usually taken through a blood draw and measures the number of red cells, white cells, and platelets in the blood. Lymphocytes are a type of white blood cell, and if there are a high number of lymphocytes known as B cells in a blood sample, it may signal that a person has CLL.
  • Bone marrow testing can check to see if cancer is in the bone marrow and see how far along the cancer is.
  • Flow cytometry immunophenotyping is an important step to confirm a diagnosis. This test can see if the lymphocytes are cancerous or from another condition, like an infection. It can also identify specific qualities of the cancer cells, known as tumor markers, which can help determine which treatment might be best.

Other diagnostic tests may be done, as well, to help figure out what treatment and care plan is right for each person.

5. Treatment doesn’t always start right away – some people enter a phase called “active surveillance”

Doctor and patients discussing optionsZoran Zeremski/

After being diagnosed, you might think that you’ll start treatment right away, but that’s not always the case. A person’s CLL may grow slowly and not need immediate treatment – this is normal.

There are two different forms of CLL. The faster-growing type may need to be treated quickly, since it is more aggressive, but the slower-growing type can be stable for years and may not require treatment right away.

People with CLL who don’t have many changes in their blood counts and no symptoms can remain stable for years, which is commonly called “active surveillance” or “watchful waiting.” But that doesn’t mean you won’t need to see your doctor – they will do regular physical exams and blood tests to closely monitor the cancer.

Waiting to start treatment can be nerve-racking, but this is currently the standard of care for those who’ve had few changes to their blood counts and aren’t having symptoms. There can also be risks in starting treatment right away if it’s not needed, including potential treatment side effects and complications. There is also the possibility of building a resistance, which could make a treatment ineffective for when it is necessary down the line.

Though, in general, being diagnosed early has been linked to better long-term survival, every person’s experience is different. There’s a wide range of outcomes among people with CLL who have the same stage of the disease, and the stage alone can’t predict the course of someone’s disease. Scientists are learning a lot about the biology of CLL cells, which are driving progress in both treatment and testing.

6. Chemotherapy isn’t the only treatment option

We know more today about CLL and how to best treat it than we did years ago. Certain attributes of a person’s genetic makeup, known as genetic markers, may help researchers identify a gene that could cause a certain disease or trait within a family. They can point to which treatments may be most effective, which is why genetic testing is important at diagnosis and throughout a person’s journey with CLL, since the disease can change over time.

Doctor looking into microscopeAnatoly Tiplyashin/

When many people hear cancer, they think “chemotherapy”. But sometimes, chemotherapy may not be the best treatment for certain types of CLL. Unlike chemotherapies that work by attacking rapidly growing cells (including both healthy and cancerous cells), targeted therapies are drugs specifically aimed at changes inside cells that have caused them to become cancerous. Targeted therapies for CLL include Bruton tyrosine kinase (BTK) inhibitors, phosphatidylinositol 3-kinase (PI3K) inhibitors, and B-cell lymphoma 2 (Bcl-2) inhibitors. Other CLL treatments include radiation therapy, splenectomy, or the removal of the spleen, allogeneic stem cell transplantation, or a bone marrow transplant.

Age, fitness, and other medical conditions, could also help decide which treatment someone with CLL might get first.

The outlook for people with CLL has gotten better in the last few years. Although there’s no cure, there are many treatment options—which helps patients and their doctors choose what’s best for each person.

7. Clinical trials are exploring innovative, new medicines

But that doesn’t mean the work is done. Researchers are conducting clinical trials with the goal of finding better ways to help treat people living with CLL. Clinical trials have already led to new insights about the disease and better treatments, including more effective targeted therapies and combinations of treatments.

Clinical studies examining new CLL therapies for people of all ages and at every stage of treatment give hope for even more options that allow people with CLL and their loved ones to live their lives to the fullest. Enrolling in a clinical trial may be an important option for some people.

8. A CLL diagnosis can be scary for you or a loved one, but you don’t have to go through it alone

People can live with CLL for a long time and may be treated on and off for years. Though life after a cancer diagnosis can be difficult and stressful, a doctor can help make a plan, including a schedule of exams and tests, suggestions for diet and exercise, and where to turn for emotional support.

Senior couple reading paperwork

If you or a loved one has been diagnosed with CLL, you don’t have to go it alone. Patient advocacy groups are a helpful resource, offering support for all those impacted by the disease. These groups can provide ideas for how to navigate your care through CLL, particularly at times when it can seem overwhelming. They may also be able to connect you with others who are experiencing the same challenges and can offer suggestions to help you cope with CLL.

For more information about CLL and support groups, visit Connected by Blood.

US-48824 Last Updated 12/20