This in-depth overview shares everything people who've been diagnosed with chronic lymphocytic leukemia (CLL) need to know, complete with insights and advice from leading medical experts.
Chronic lymphocytic leukemia (CLL) is a type of cancer that starts in bone marrow, the spongy tissue in the center of your bones where new blood cells are made. CLL affects the immature blood cells that give rise to white blood cells called lymphocytes, which help your body fight infections.
Scientists don’t know exactly what causes CLL. A genetic change in white blood cells causes them to become abnormal and to divide faster than usual. These abnormal cells crowd out healthy cells. Eventually, so many of the cancer cells are produced that they start to spread to other organs.
What doctors know and still need to learn about CLL, from leukemia specialist Dr. Nicole Lamanna
Fortunately, researchers have learned a lot about CLL over the years. What they’ve learned has helped them develop new and more targeted treatments that work better against this cancer, and that can now extend survival for people who are diagnosed.
Risk factors are things that make you more likely to develop CLL. Having these risks doesn’t mean you will definitely get this type of cancer–only that you are slightly more likely to be diagnosed.
Your risk for CLL may be higher if you:
It’s uncommon for people with CLL to have symptoms early in the disease, according to SurvivorNet’s experts. They say someone can live with CLL and feel perfectly fine.
People often have no symptoms of CLL until their disease has progressed, says Dr. Matthew Davids, Associate Director of the Dana-Farber CLL Center
After you’ve had this cancer for awhile, you may notice symptoms like:
If you have any of these symptoms, it doesn’t necessarily mean that you have CLL. But it’s worth talking to your doctor if they’re out of the norm for you.
Your doctor has several ways to diagnose CLL, including blood tests, genetic tests, bone marrow tests, and imaging tests.
SurvivorNet expert, medical oncologist Dr. Julie Vose, discusses the importance of genetic testing following a CLL diagnosis
You may need additional tests, including x-rays and imaging scans, if there’s a possibility that the cancer has spread to other parts of your body. If your doctor is concerned that leukemia cells might have reached your brain or spinal cord, you may get a spinal tap, which analyzes a small sample of fluid from around the spinal cord.
Unlike other cancers, CLL is a chronic disease that people can live with for many years. Your doctor will find the most appropriate treatment for you based on the type of symptoms you have, and whether your cancer is growing slowly or is more aggressive.
In the early stages of CLL, treatment might not be necessary. Your doctor may do something called watchful waiting. This doesn’t mean that your doctor will ignore you, but that you’ll get regular check-ups to see if your symptoms get worse or your cancer has spread.
Dr. Nicole Lamanna, on how your doctor will monitor you after your diagnosis
Once it is time to start treatment, your doctor will help you choose from these options:
These are the standard treatments for CLL, but they’re not the only ones. BTK inhibitors are a pill you take every day to reduce the chance of the cancer coming back. Another is venetoclax (Venclexta), which comes in a pill. This is typically combined with another type of drug called a monoclonal antibody, to keep people with this cancer in remission. You’ll need to stay on these drugs long-term to keep your cancer from returning.
New treatments are keeping people with CLL in remission longer, says Dr. Julie Vose
If you’ve tried a number of therapies and they stopped working for you, or if you want to add on another treatment to boost the effectiveness, your doctor might recommend that you enroll in a clinical trial.
Dr. Matthew Davids, on how clinical trials are helping doctors discover new and more effective CLL treatments
Clinical trials test out new, and possibly more effective treatments for cancers like CLL. Enrolling in one of these trials could give you access to a state-of-the-art drug before it’s available to everyone else.
CLL is a long-term disease. That means you’ll probably stay in close touch with your oncologist for many years to come. Your doctor will do regular check-ups to monitor for any delayed side effects of your treatment, and to see if your cancer has come back. Going to every scheduled appointment can help ensure that if your cancer does return, you can get on treatment quickly to stop it.