Answers to top questions about chronic lymphocytic leukemia (CLL)

Mar 23 11:00am | Amy Kuth, Patient Educator | @amykuth

Article written in collaboration with Amber Koehler P.A.-C., M.S.

In a recent newsfeed post, we asked you what cancer topics you want to learn about. One topic that came up is chronic lymphocytic leukemia (CLL). We reached out to Amber Koehler P.A.-C., M.S., one of our CLL experts at Mayo Clinic, to help answer your questions about this condition.

What is the prognosis for someone with CLL?

Leukemia can be either acute (fast-growing) or chronic (slow growing). CLL is a type of chronic leukemia. CLL is often described as “something you will die with, not from.” While this can be true for many, it is important to note that there is a wide range of aggressiveness based on factors specific to each person. Thanks to the development of new medications and treatments over the past several years, much of the published research on life expectancy with CLL is now outdated. The new treatments work so well and for so long that we just don’t have the long-term data to predict prognosis with the same certainty that we used to have.

What we do have is a tool that was developed by Mayo Clinic called the CLL International Prognostic Index (CLL-IPI). This tool helps us predict the time to first treatment based on factors specific to your CLL – most of which we can learn about using blood tests.

We stage CLL using something called Rai staging. Rai staging is different than how other cancers are staged. Stage 4 CLL does not mean the same thing as stage 4 for other cancers, such as lung cancer or pancreatic cancer. The CLL-IPI score can predict prognosis more accurately than Rai staging alone.

What is the current treatment for CLL?

There have been many advances in CLL treatment in the past 15 years. We no longer treat CLL with traditional chemotherapy. Instead, we use targeted therapies that are more effective with fewer side effects. Targeted therapy uses medicines that attack specific chemicals in cancer cells, causing these cells to die.

We have both oral (by mouth) and intravenous (IV) targeted therapies. Some medicines are taken for a limited time, and others are taken for as long as they work, which is often for many years. The treatments can sometimes interact with other medications or supplements, so it is important to talk with your doctor before starting a new medication or supplement.

When should treatment start?

If your CLL is not causing bothersome symptoms, your doctor may wait to start treatment. This is called the “watch and wait” approach, although some doctors prefer to call it “active surveillance” as this better describes what your care team is doing during this time.

One thing your CLL care team will look at is your white blood cell count when deciding the right time for you to start treatment. There is no magic white blood cell number for when starting treatment is recommended. What is more important is what those white blood cells (CLL cells) are doing and whether they are causing other problems.

For example, are the cells building up in places like the bone marrow where they can cause problems? Think of it like weeds in the garden – the more CLL cells that build up there, the less room there is for healthy cells to grow. Typically, when this happens, we start to see a decrease in the number of red blood cells (hemoglobin) and platelets in your blood.

CLL cells can also build up in lymph nodes. When lymph nodes become large or bothersome, it may be time to start treatment. CLL cells can also build up in the spleen. The spleen sits in the left upper part of the stomach area. If the spleen gets too large, you may feel full more quickly and start to lose weight without trying.

Sometimes, as CLL progresses, you can develop what are called “B” symptoms, such as severe fatigue not explained by other reasons, losing weight without trying, drenching night sweats, or fevers without an infection. These symptoms may also be a sign it is time to start treatment.

How long does “watch and wait” usually last?

The best way to predict how long “watch and wait” will last is to use the CLL-IPI score. Mayo Clinic researchers have shown that in early stage CLL, the CLL-IPI score can predict the time to first treatment. A higher CLL-IPI score usually means a shorter time before needing treatment.

The length of the “watch and wait” period also depends on how early you are diagnosed with CLL. It can be common for patients to have the condition for a while before it is discovered.

How can I take action?

A diagnosis of CLL can bring emotional challenges such as fear, anxiety, and uncertainty. Although CLL is not yet curable, it is very treatable.

Some people say that CLL stands for “Choose Life over Leukemia”. Focus on what you can control. Practice a healthy lifestyle. Prioritize things that give you joy. Seek support. Stay informed. You are more than your condition. Keep living fully!

We would love to see your comments below. Share one way you "Choose Life over Leukemia" in your daily life. By sharing your experience, you can help others find hope and new ideas for their own journey.

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