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The “chronic” in chronic lymphocytic leukemia (CLL) means that it is an ongoing or lifelong disease. So it’s important to understand that the goal of treatment won’t be to cure you of the condition once and for all. Treatment may make the cancer go away for a while, but typically it comes back. Then you may start treatment again. This process could continue for decades.

The goal of your treatment may be one or more of the following:

  • Slow down or stop your disease by slowing the growth of CLL cells
  • Get your CLL into a period of remission where you no longer have signs of CLL or you feel well enough to go on with your daily life
  • Improve how you feel if you’re dealing with infection, fatigue, or other symptoms

The type of treatment your doctor recommends will depend on how much your cancer has progressed, the symptoms that might be involved, and your age and overall health.

Here’s what you can expect as you go through treatment.

Before Treatment

Unlike other types of cancer, CLL doesn’t necessarily respond better with earlier treatment. Doctors typically recommend waiting to start treatment until after your disease has started to progress or you have symptoms that bother you. Doctors call this the “watch and wait” approach. Some people don’t get symptoms for years or even decades as they wait.

During this time, you’ll have medical exams and bloodwork on a regular basis so your doctor can keep tabs on your disease progress. You may find these visits reassuring, or they may cause more anxiety, or both. As you watch and wait, your doctor may have you improve different parts of your health, such as quitting smoking or changing your diet. The goal during this time is to stay as healthy as possible and avoid unnecessary side effects of starting treatment before you truly need it.

During Treatment

Once symptoms arise, your doctor will recommend that you begin treatment. You’ll likely start on one or a combination of the following medications:

  • Monoclonal antibodies
  • Targeted drugs
  • Chemotherapy

You get them either through an IV tube into a vein, a pill you swallow, or a shot under the skin.

The goal of these treatments is to stop or slow the cancer or eliminate it and put you in remission for some period of time.

Some of these medications can cause uncomfortable side effects. When this happens, your doctor can treat these side effects – and the symptoms caused by the disease itself – with palliative care. This kind of treatment doesn’t slow down or stop the disease itself, but it helps reduce the side effects of treatment or symptoms of CLL itself. You might receive:

  • Immunoglobulins through an IV to treat any infections that keep coming back
  • Corticosteroids to help your body stop making antibodies that destroy red blood cells and/or platelets
  • A surgery to remove your spleen if your body is making antibodies against your own healthy blood cells
  • A drug called rituximab that can also help curb antibodies your body makes to attack healthy blood cells

These treatments aim to keep you feeling as good as possible during your cancer care.

After Treatment

When your doctor can’t find any sign of CLL cells after multiple tests, that means you’re in complete remission. If the leukemia has slowed but some evidence of disease still remains, you are in partial remission, which is common after most standard treatment for CLL. You may feel completely fine and have normal blood counts and lymph nodes, but some CLL cells still linger in your bone marrow.

Even if you reach remission, remember that CLL is a chronic, or ongoing, condition. You need to be prepared for the reality that the disease usually comes back, or recurs. This is called a relapse, and it means your cancer has come back after 6 months or more of no signs or symptoms. After treatment, you’ll have regular follow-up with your doctor to watch for relapse.

When it happens, your doctors will decide on your next treatment based on what treatments you’ve already had, how long ago you had them, and how good your health is overall. Once again, they’ll aim to stop or slow the cancer or even get you into remission again.

If your CLL doesn’t respond to treatment, this is called refractory CLL. It can be helpful to see more than one doctor to get second or even third opinions to be sure you’ve tried all the right approaches. By this time, there may be new treatments that weren’t available when you first developed CLL or a clinical trial that you could join.

People with CLL also face the risk of a new, unrelated second cancer. It’s possible to get any type of cancer after CLL, but you’re at highest risk for:

  • Skin cancer
  • Melanoma of the skin
  • Cancer of the larynx
  • Lung cancer
  • Colon cancer
  • Kaposi sarcoma
  • Soft tissue sarcoma

Because of this risk, it’s important to see your doctor regularly for well checks and get preventive screenings. Always let your doctor know if you’re having new symptoms.

Relapse, refractory CLL, and second cancers can be a lot to handle on your own. You might want to join a support group where you can connect with other people in the same situation. Ask your care team how to find a group, or check the website of the Leukemia and Lymphoma Society for resources. If the anxiety or stress of your condition is overwhelming, ask your doctor for a referral to a mental health professional.

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SOURCES:

Leukemia & Lymphoma Society: “CLL Treatment,” “Watch and Wait.”

American Cancer Society: “Typical Treatment of Chronic Lymphocytic Leukemia,” “Second Cancers After Chronic Lymphocytic Leukemia.”

Cancer.Net: “Leukemia – Chronic Lymphocytic – CLL: Types of Treatment.”