What Is Chronic Lymphocytic Leukemia?
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 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 he thinks you may have CLL. The results show how many lymphocytes, platelets, and red and white cells are in your blood.
- 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 how much CLL is in your body and how fast it's moving.
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?
If you have early stage CLL, you probably don't need treatment. Studies show that it doesn't help, as with some other cancers.
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 growing quickly, a decline in the number of your red blood cells, or swelling in a lymph node gets bigger.
Your treatment may include:
Chemotherapy. You may get this by pill, shot, or IV. Fludara (fludarabine) tends to work best to treat CLL. But doctors often combine two or more drugs that work in different ways to kill the cancer cells.
Radiation therapy. This type of treatment uses high-energy rays, such as X-rays, to destroy cancer cells. You probably won't need it, unless your doctor recommends it to shrink swelling in a lymph node, spleen, or other organ that's causing pain.
Second-line therapy. Venetoclax (Venclexta) is given to adults with a 17p deletion who have received at least one previous treatment for CLL.
Surgery. It's rare, but if chemotherapy or radiation doesn't reduce an enlarged spleen, doctors recommend surgery to take it out.
Researchers are studying new combinations of drugs and ways of treating CLL to help people stay disease-free longer. One such treatment combines chemotherapy with a stem cell transplant.
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 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.
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're 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.
You may want to ask your doctor if you can join a clinical trial. These trials test new drugs to see if they're safe and if they work. They often are a way for people to try new medicine that isn't available to everyone. Your doctor can tell you if one of these trials might be a good fit for you.
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 usually 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.