What Is Chronic Lymphocytic Leukemia?
Chronic lymphocytic leukemia (CLL) is a cancer that affects a type of white blood cell called a "lymphocyte."
Lymphocytes help your body fight infection. They're made in the soft center of your bones, called the marrow. If you have CLL, your body makes an abnormally high number of lymphocytes that aren't working right.
More adults get CLL than any other type of leukemia. It usually grows slowly, so you may not have symptoms for years.
Some people never need treatment, but if you do, it can slow the disease and ease symptoms. People who get medical care live longer today because doctors are diagnosing CLL earlier.
It's natural to have worries and questions about any serious condition. You don't have to face things alone. Tell your friends and family about any concerns you have. Let them know how they can help. And talk to your doctor about how to join a support group. It can help to speak to people who understand what you're going through.
In most cases, doctors don't know what causes CLL. You're more likely to get it if:
- You have a parent, sibling, or child who has CLL.
- You're middle-aged or older.
- You're a white man.
- You have relatives who are either Eastern European or Russian Jews.
If you were exposed to Agent Orange, an herbicide widely used during the Vietnam War, your chances of getting CLL may also be higher.
You may have no symptoms for a while. Over time, you may have:
- Swollen lymph nodes in your neck, armpits, stomach, or groin; lymph nodes are pea-sized glands in these and other areas of your body.
- Shortness of breath
- Pain or fullness in your stomach, which may be because the disease has made your spleen bigger
- Night sweats
- Fever and infections
- Loss of appetite and weight
Getting a Diagnosis
If you have one or more swollen lymph nodes, your doctor may ask:
- Have you had any recent infections?
- Have you had a recent injury?
- Do you have an immune system disease?
- Have you had a fever?
- Are you short of breath?
- Have you lost weight without trying to?
- What medications do you take?
Your doctor will give you a blood test if they think you may have CLL. The results show how many lymphocytes, platelets, and red and white cells are in your blood.
If your white blood cell counts are high, you will get a bone marrow aspiration and biopsy:
- Aspiration: Your doctor inserts a thin, hollow needle into the bone (usually, your hip) to take out a small amount of liquid marrow.
- Biopsy: Your doctor uses a slightly larger needle to remove a small amount of bone, marrow, and blood.
Your doctor will do both procedures during the same visit.
By checking the samples under a microscope for abnormal cells, your doctor can tell if CLL is in your body and how fast it's moving. They can also learn more about the genetic changes in the cells. This information may help you and your doctor plan your treatment.
Questions for Your Doctor
- What's the stage of my leukemia?
- Do I need treatment now?
- If not, how will we know when I need treatment?
- Will I need other tests before we decide?
- Should I get a second opinion?
- What are the side effects of treatment?
- How will it affect my daily life?
- What will we do if the leukemia returns?
Some types of CLL grow very slowly. If yours is in the early stages or it’s not causing any problems, you probably don't need treatment. Studies show that it doesn't help.
Even so, you should keep up with all your doctor visits. Your doctor will closely check to make sure your condition hasn't changed.
You may start treatment if your doctor notices a change, like the number of lymphocytes in your blood goes up quickly, there’s a drop in the number of your red blood cells, or a lymph node is getting bigger.
Your treatment may include:
Chemotherapy (chemo). These are drugs that kill or control cancer cells. Doctors often combine two or more drugs that work in different ways. You may get chemo by pill, shot, or IV. The drugs travel through your blood to reach and affect cells that are dividing too quickly all over your body. This includes certain healthy cells as well as cancer cells.
People usually get chemo in 3- to 4-week cycles that include a time of treatment and a time without treatment. This rest time gives your healthy cells time to rebuild and heal.
Side effects can include mouth sores, nausea, and low blood counts. But you can recover from that. Almost all side effects go away over time after treatment ends. And most chemo side effects can be treated or even prevented. If you have very serious side effects, you can talk to your doctor about adjusting your treatment plan.
Immunotherapy. These drugs help your body’s immune system recognize and destroy cancer cells. A type of immunotherapy called monoclonal antibodies is often used to treat CLL. They attach to certain proteins found on cancer cells and stimulate the immune system to destroy these cells. You get them through an IV or as a shot. Your doctor may give you this treatment on its own, but most people get it along with chemo.
Immunotherapy drugs cause different side effects than chemo does. Headache, fever, rash, and blood pressure changes are just a few examples. Some can be prevented, and all can be treated.
Targeted therapy. These drugs block certain proteins in and on cancer cells that help them survive and spread. They target proteins found in your CLL cells and spare healthy cells. These drugs are taken as pills.
Side effects depend on which targeted therapy is used. They can include low blood counts, diarrhea, nausea, fatigue, and skin rashes. These can and should be treated. Most go away after treatment.
Much less often, one of these treatments may be used:
Radiation therapy. This type of treatment uses high-energy rays, such as X-rays, to destroy cancer cells. It may be used to shrink swelling in a lymph node or your spleen, or to treat bone pain.
Surgery. It's very rare, but if chemo or radiation doesn't shrink an enlarged spleen, surgery may be done to take it out. This can help improve blood cell counts.
Leukapheresis. If you have a very high number of CLL cells in your blood when you get diagnosed, your doctor may use this treatment to lower them quickly. Your blood passes through a special machine that filters out the CLL cells. This is a short-term fix and you’ll need other treatment, like chemo or immunotherapy, to keep the cancer cells under control.
Clinical trials often offer other treatment options. These are research studies that scientists use to find better ways to treat diseases. They may be a way to try new treatments before they’re available to everyone. You always get at least the best available treatment in a clinical trial, but you may also get what the doctors think may be a new promising way to treat CLL. Your doctor can help you look for a trial and understand what’s involved, so you can decide if it’s an option you want to try.
Stem cell transplants. Researchers are studying new combinations of drugs and new ways of treating CLL to help people stay disease-free longer. One such treatment combines chemotherapy with a stem cell transplant. Most people don’t need this treatment for CLL.
Chemotherapy destroys cancer cells but also damages some healthy cells in the bone marrow.
The stem cell transplant supplies healthy young cells to help rebuild your immune system. These aren't the "embryonic" stem cells that you may have heard about. They usually come from a donor's bone marrow.
Close relatives, such as your brother or sister, are the best chance for a good match. If that doesn't work out, you need to get on a list of potential donors from strangers. Sometimes the best chance for the right stem cells for you will be from someone who has the same racial or ethnic background as you.
Before the transplant, you'll likely need to get treated with high doses of chemo for about a week or two. This can be a tough process because you may get side effects like nausea and mouth sores.
When the high-dose chemo is done, you'll start the transplant. The new stem cells are given to you through an IV. You won't feel any pain from this, and you'll be awake while it's happening.
After your transplant, it could take 2 to 6 weeks for the stem cells to multiply and start making new blood cells. During this time, you may be in the hospital, or at the very least, will need to make visits every day to get checked by your transplant team. It can take 6 months to a year until the number of normal blood cells in your body gets back to what it should be.
Taking Care of Yourself
CLL treatment can cause side effects such as nausea and fatigue in some people. If it happens to you, let your doctor know, so you can manage the problems.
- Ask your doctor about anti-nausea drugs. Therapeutic massage and acupuncture may also help control nausea and vomiting.
- Try walking, restorative yoga, breathing exercises, and meditation to curb fatigue and boost energy.
- On days when your energy and mood are low, set one small goal for the day. Take a walk, talk with a friend, or take a relaxing shower.
What You Can Expect
CLL often grows slowly. With good care, you can live well with it for many years.
Discuss all the treatment options with your doctor, find out about clinical trials, and get support from friends and family.
The Leukemia & Lymphoma Society has resources that can help you deal with different aspects of CLL, from financial to emotional issues. These resources include local education programs, support groups, online chats, and one-on-one support from someone who has been through it.