CLL is a type of cancer of the blood and bone marrow. CLL cells are found primarily in the bloodstream, the bone marrow, the lymph nodes, and the spleen. It typically progresses slowly, usually affecting older adults. Treatment for CLL isn’t always needed right after diagnosis.1,2
Small lymphocytic lymphoma (SLL) is a similar disease to CLL, but with one key difference: SLL cancer cells are found mostly in the lymph nodes instead of in the blood and bone marrow.3
To understand CLL better, it may be helpful to review some basics about blood and how CLL can interfere with the important function of your blood cells.4-10
Some people with CLL don’t have symptoms. When they do occur, symptoms often develop gradually, with those who are affected seeing little to no changes in their health for years.
Some signs and symptoms of CLL include4:
People with CLL may also experience aches, fever, and night sweats.
If you have CLL, you are not alone.11
There are a few known risk factors for CLL, including11-13:
CLL is almost twice as common in men as in women.
About 90% of people diagnosed with CLL are over 50 years old, and the median age of diagnosis is 70.
Most people living with CLL do not have a family history of CLL, although 5% have a relative who has had some kind of leukemia.
In the US, CLL is more common among Caucasians as compared to African American and Asian populations. The risk of CLL is also higher for people of Ashkenazi Jewish descent.
Exposure to large amounts of radiation and certain chemicals (Agent Orange, for example) has been linked to CLL.
Your primary doctor may recognize the signs and symptoms of CLL but may refer you to a specialist doctor called a hematologist-oncologist for diagnosis. This type of doctor specializes in the diagnosis and treatment of blood cancers.9
CLL is often discovered from the results of a routine blood test and suspected when the white blood cell count is high. Additional blood tests are needed to confirm a diagnosis of CLL. For some people, a biopsy of lymph nodes is done if the blood tests are inconclusive.9
It’s important to ask your doctor about the types of tests you’ll need and how often you’ll need to have them. This may include genetic testing, which can provide critical information about your specific CLL type and help your doctor create a personalized treatment plan for you.9
The results of diagnostic testing can help your doctor “stage” your CLL or SLL. Staging is a rating that provides your doctor with a way to understand the expected outcome of your cancer. It may also help your doctor decide when it’s time to start discussing treatment.9,14
We have many genetic markers on each of our 46 chromosomes. A genetic marker is a specific sequence of DNA that is identifiable at a known spot on a chromosome.16
Once your doctor knows your type of CLL, potential treatment options may become clearer. Certain treatments have been shown to work better than others based on the type of CLL. Talk to your doctor to understand how genetic testing fits into your unique CLL care plan.9,18
If coping with CLL seems like a lot to bear, remember that you are not alone.
can go a long way in helping you feel supported and confident in the steps you take to manage your CLL.9
1. Chronic lymphocytic leukemia. Mayo Clinic. Accessed June 23, 2020. https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428?p=1 2. Chronic lymphocytic leukemia. National Organization for Rare Disorders. Accessed July 1, 2020. https://rarediseases.org/rare-diseases/chronic-lymphocytic-leukemia/ 3. National Cancer Institute. Definition of CLL/SLL. Accessed June 30, 2020. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/cll-sll 4. Leukemia & Lymphoma Society. The CLL guide: information for patients and caregivers. Revised 2014. Accessed July 30, 2019. https://www.lls.org/sites/default/files/file_assets/cllguide.pdf 5. Blood. MedlinePlus. Updated April 20, 2020. Accessed June 25, 2020. https://medlineplus.gov/blood.html 6. Sarode R. Components of blood. Merck Manual. Revised January 2018. Accessed June 18, 2020. https://www.merckmanuals.com/home/blood-disorders/biology-of-blood/components-of-blood?query=platelets 7. Baumgarth N. How specific is too specific? B-cell responses to viral infections reveal importance of breadth over depth. Immunol Rev. 2013;255(1):82-94. 8. Cancer Research Institute. How does the immune system work? April 30, 2019. Accessed June 8, 2020. https://www.cancerresearch.org/blog/april-2019/how-does-the-immune-system-work-cancer 9. National Comprehensive Cancer Network. NCCN Guidelines for Patients: chronic lymphocytic leukemia. Accessed November 1, 2020. https://www.nccn.org/patients/guidelines/content/PDF/cll-patient.pdf 10. American Cancer Society. What is chronic lymphocytic leukemia? Revised May 10, 2018. Accessed July 1, 2020. https://www.cancer.org/cancer/chronic-lymphocytic-leukemia/about/what-is-cll.html 11. Cancer stat facts: leukemia – chronic lymphocytic leukemia (CLL). National Cancer Institute. Revised May 10, 2018. Accessed July 1, 2020. https://seer.cancer.gov/statfacts/html/clyl.html 12. American Cancer Society. What are the risk factors for chronic lymphocytic leukemia? Revised May 10, 2018. Accessed June 1, 2020. https://www.cancer.org/cancer/chronic-lymphocytic-leukemia/causes-risks-prevention/risk-factors.html 13. CLL Society. Chronic lymphocytic leukemia (CLL) FAQs. Accessed July 1, 2020. https://cllsociety.org/questions-answers/ 14. Penn State Hershey. Leukemia. Accessed November 2, 2020. http://pennstatehershey.adam.com/content.aspx?productid=108&pid=33&gid=000100 15. American Cancer Society. Non-Hodgkin lymphoma stages. Revised August 1, 2018. Accessed October 15, 2020. https://www.cancer.org/cancer/non-hodgkin-lymphoma/detection-diagnosis-staging/staging.html 16. Leukemia – chronic lymphocytic – CLL: diagnosis. Cancer.Net. October 2017. Accessed June 3, 2020. https://www.cancer.net/cancer-types/leukemia-chronic-lymphocytic-cll/diagnosis 17. Definition of genetic marker. National Cancer Institute. Accessed June 1, 2020. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/genetic-marker 18. Puiggros A, Blanco G, Epsinet B. Genetic abnormalities in chronic lymphocytic leukemia: where we are and where we go. Biomed Res Int. 2014;2014:435983.