Chronic lymphocytic leukemia (CLL) is a type of cancer. White blood cells called lymphocytes (LIM-foh-sites) are cells that are part of our immune system that help the body fight off infection. Patients with CLL have too many abnormal lymphocytes. They may also have enlarged lymph nodes and spleens. CLL may develop more slowly than other types of leukemia.
Overview
Led by our leukemia experts, MSK has a surveillance program just for people with chronic lymphocytic leukemia (CLL). Surveillance means to actively monitor. It’s not the same as no treatment.
Active surveillance for CLL is safe and is recommended for many patients.
Many people with CLL do not have symptoms. They only need to be watched or monitored, which is called active surveillance (ser-VAY-lents). We closely watch the CLL but do not treat it unless we see signs it’s getting worse.
After they learn they have CLL, only approximately 1 out of every 3 people need treatment right away.
If you have CLL but do not have any symptoms or another problem caused by CLL such as low red blood cells, platelets, or growing lymph nodes, your doctor may recommend active surveillance.
What is active surveillance for CLL?
Active surveillance for CLL can last from a few months to many years. If you’re in active surveillance, your doctor will recommend a personalized plan for how often you need to be monitored.
How often you have doctor visits depends on your particular case of CLL.
At each visit, you will have blood tests and physical exams. Your care team will make sure there are no symptoms or other problems caused by CLL such as low red blood cells or platelets that need further investigation or treatment.
When is active surveillance for CLL recommended?
People with CLL may want to start treatment right away. But research has shown that early treatment for CLL does not help people live longer.
Treatment has side effects and risks. While each patient’s case is different and your care team will make a personalized assessment for you, we may recommend you delay treatment if:
- You have no symptoms
- CLL is not causing other problems with blood counts such as low red blood cell or platelet counts
- Your lymph nodes or spleen are not at a size that need treatment
CLL Active Surveillance Program Team
Our advanced practice providers (APPs) lead the CLL Active Surveillance Program. An APP is a healthcare provider with special training who works alone or with your doctor to care for you.
Our program’s APPs work closely with your leukemia doctor and will tell them about any changes to your health. They have specialized training in CLL and will support you during your active surveillance.
People diagnosed with monoclonal B cell lymphocytosis (MBL) can also join our CLL Active Surveillance Program. MBL is a pre-cancerous blood condition where there are CLL-like cells in the blood but not enough of them to diagnosis CLL. People with MBL are at risk for getting CLL and require active monitoring.
Your advanced practice provider (APP)
CLL is a cancer of the immune system. People with CLL are often at higher risk for infections and developing other types of cancer such as skin cancer. In addition to expert CLL management, we focus on CLL-focused preventive care. We make sure you know about the right vaccine guidelines and regular screenings for other types of cancer.
Supportive services
We understand learning you have CLL can cause anxiety. Being in active surveillance and not starting treatment right away can be difficult to accept.
Our team is here to support you and help you adjust to active surveillance.
You also may find it helpful to use MSK services for your physical and emotional well-being.
Common Questions
Frequently asked questions about the CLL Active Surveillance Program
When do I need treatment for CLL?
Our team closely monitors you for any changes or symptoms that suggest the CLL is getting worse. Signs can include:
- More leukemia cells
- Fewer red blood cells and platelets
- Changes in the size of lymph nodes
- Changes in the size of the spleen or liver
The first treatment for CLL can be targeted therapy or antibody therapy, or both. At MSK, we also have clinical trials that you may be eligible for, beginning with the first treatment.
What symptoms should I watch for and report to my care team?
Tell your active surveillance team about these symptoms:
- Fatigue (feeling very tired)
- Night sweats
- Fever
- Getting infections often
- Weight loss
- Lumps or bumps
- New pain
Are there any other tests or imaging I will need for this program?
Your leukemia doctor or APP will tell you if you need to have more tests or imaging.
What if I do not have an appointment for a while, but I’m worried about how I feel?
Your APP is here to help you with any questions or concerns. Call the CLL Active Surveillance Program or send a message through MyMSK, our patient portal. Your APP will respond as soon as possible.
If you have a life-threatening emergency, always call 911 or go to the closest emergency room.
Should I be worried if my white blood cell count keeps rising?
A high white blood cell count does not always mean you have to start treatment. Your care team will recommend a monitoring plan that’s right for you. They’ll let you know if you should stop active surveillance and meet with your leukemia doctor sooner.
Is this program offered at other MSK locations?
We offer the program at the David H. Koch Center for Cancer Care.
If you are at an MSK regional location, please discuss your active surveillance options with your doctor. Your APP may be able to order lab work at other MSK locations near you.
Read more about the best ways to cope with active surveillance