Chronic lymphocytic leukemia (CLL) is a type of cancer that affects the blood and bone marrow. Bone marrow is a soft, spongy substance within bones that produces blood cells. CLL is the result of various genetic mutations in the DNA of cells that produce blood. The exact cause of these mutations is unknown. These DNA changes occur over the course of a life span, rather than like other genetic changes that are passed down before birth.
If you have CLL, your bone marrow produces too many lymphocytes — a type of white blood cell. These lymphocytes don’t function properly. They cause further problems by getting in the way of other blood cells being produced.
Symptoms of CLL can vary depending on the stage or extent of the disease. You may not have symptoms early on. As the disease progresses, symptoms can include:
- enlarged lymph nodes
- night sweats
- weight loss
- frequent infections
- abdominal fullness
Make an appointment with your doctor if you develop any of the above symptoms. The sooner you receive a diagnosis, the better your outlook is.
CLL has a higher survival rate than many other cancers. The five-year survival rate is around 83 percent. This means that 83 percent of people with the condition are alive five years after diagnosis. However, in those over age 75, the five-year survival rate drops to less than 70 percent. As researchers continue to learn more about CLL, it becomes clear how difficult it can be to predict outcomes. There are myriad factors to take into account for treatment and survival. Outcomes of individuals with CLL are complicated by the absence or presence of a variety of cell markers, such as IGHV, CD38, and ZAP70, as well as specific gene changes.
According to the National Cancer Institute, in 2017 there will be an estimated 20,100 new cases of CLL in the United States. And the disease will cause an estimated 4,660 deaths in 2017.
Some people have a higher risk for developing CLL. The disease is more common in men than women, and it is more likely to affect those over the age of 60. In fact, nearly 80 percent of those newly diagnosed with CLL are over 60 years old. Caucasians are also more likely to develop this type of cancer.
Along with race and gender, family history of CLL or other blood disorders also increases your risk. Exposure to certain chemicals like herbicides and insecticides seems to increase risk as well.
Overall, chronic lymphocytic leukemia has a high survival rate, but several factors influence your outlook. These factors include the stage of the disease and how well you respond to treatment, along with certain cellular and genetic markers.
After a diagnosis, the next step is staging the disease. There are currently two staging systems in place for CLL: Rai and Binet.
Rai is more common in the United States, while Binet is more commonly used in Europe. Rai staging defines 5 stages from 0 to 4. Stage 0 is considered low risk, stage 1-2 is considered intermediate risk, and stage 3-4 is considered high risk. Risk is how quickly the disease is likely to progress. The higher the risk, the more quickly CLL is expected to advance. The Binet system uses A, B, and C.
Staging is determined based on a variety of factors such as blood counts and the involvement of the lymph nodes, liver, and spleen. Open lines of communication between you and your cancer specialist, or oncologist, are essential. They are an excellent resource for up-to-date information regarding your treatment and care. Since this disease is complex, they can also provide guidance based on your particular case of CLL.
Treatment may not be necessary right away if results from your bone marrow biopsy, imaging tests, and blood tests reveal an early stage with low risk. Age, disease risk and symptoms all play a role in helping to determine treatment options. The Mayo Clinic reports there is no proof that treating early stage CLL will extend lives. Many doctors forgo treatment at this early stage so people don’t experience side effects and possible complications. During early stages of CLL doctors regularly monitor the disease, and only begin treatment when it progresses.
If you have a more advanced stage of CLL with higher risk, different treatments can improve your survival rate. Treatments usually include a combination of chemotherapy drugs to kill cancer cells. You may also be a candidate for a bone marrow stem cell transplant. In this procedure, you’ll receive healthy adult blood stem cells from a donor. This can stimulate the production of your own healthy blood cells.
In younger patients who weren’t previously treated, who are in overall good health, and who have certain favorable cellular markers, the combination chemotherapy called FCR (fludarabine, cyclophosphamide, rituximab) has shown great promise. According to the journal Blood, this treatment can induce long-term survival and possibly a cure for a certain set of individuals.
The problem is that this treatment is not for everyone. Those over 65 years old, individuals with poor kidney function, as well as those with other health conditions may not tolerate this treatment. In some people, it can also increase the risk of infection and other cancers.
Living with cancer causes an array of different emotions. Some days you’ll feel good, and other days, not so good. At times you may feel overwhelmed, angry, afraid, nervous, or hopeful. Even if you’re in the low-risk stage of CLL and not receiving treatment, you may fear the disease progressing.
Express your feelings
Don’t keep your feelings bottled up inside. You may keep thoughts to yourself to avoid upsetting family or friends. But expressing how you feel is key to coping with the disease. Talk to a trusted family member or friend for reassurance and support, and allow yourself to grieve. It’s okay to cry. In most cases, you’ll feel better after an emotional release.
If you’re uncomfortable talking with others about your condition, write down your feelings in a journal. Also ask your doctor about cancer support groups. Or you could speak with a counselor who works with people with cancer.
A cancer diagnosis can invoke stress and anxiety. But the more you know and understand about the condition, the easier it’ll be to accept your new reality. The American Cancer Society recommends being your own advocate. Don’t wait for your doctor to educate you on CLL.
Research the condition and stay up-to-date on the latest treatments in order to ask thoughtful questions. Take notes during your doctor appointments, and ask your doctor to clarify information you don’t understand. It’s also important to find reliable information when looking online. Ask your doctor for a recommendation of where you can read up more about your condition.
Physical activity is another way to cope with a CLL diagnosis. Exercise is important because activity increases your brain’s production of endorphins. These are the “feel good” hormones. Exercise improves your mental outlook. It can also boost your immune system and help you fight disease. Go for a walk or a bike ride, or take a yoga class or another exercise class.
Take your mind off your disease
It can be difficult to get your mind off cancer. One way to cope is to find enjoyable activities that can help you unwind and relax. Explore a hobby, such as photography, art, dance, or crafts. For relaxation, consider guided imagery meditation. This technique allows you to focus on positive images to help you relax and reduce stress. And when you’re having a good day, use your energy to live life to the fullest, which can take your mind off your health.