Living as a Chronic Lymphocytic Leukemia Survivor

Chronic lymphocytic leukemia (CLL) is very hard to cure, but most people can live with the disease for many years or even decades.

Some people with CLL can live for years without treatment, but over time, most will need some type of treatment. Most people with CLL are treated on and off for years. Treatment may stop for a while, but it might never really end.

Learning to live with cancer that doesn’t go away can be difficult and stressful. But no matter what your situation is, there are steps you can take to live well, both physically and emotionally.

Follow-up care

Before, during, and after treatment for CLL, your cancer care team will want to watch you closely. It's very important to go to all your follow-up appointments.

During these visits, your cancer care team will ask you about any problems you are having. They might also order exams and lab tests to look for treatment side effects or signs of CLL.

Talking about your side effects

Almost any cancer treatment can have side effects. Some side effects may last for a few weeks to months, but others might last the rest of your life. This is the to talk to your cancer care team about any changes or problems you notice and any questions or concerns you have.

To learn more, see Managing Cancer-related Side Effects.

Treating recurrent CLL

Treatment of CLL is not expected to cure the disease. This means that even if there are no signs of leukemia after treatment (known as a complete remission), the leukemia is likely still there, and it might come back (recur) at some point.

If this happens, further treatment will depend on what treatments you've had before, how long it's been since your last treatment, your overall health and preferences, and other factors.

For more on how recurrent CLL is treated, see Typical Treatment of Chronic Lymphocytic Leukemia (CLL).

Preventing infections

Most people with CLL do not have normally functioning immune systems. This can raise your risk for certain infections. Some of the drugs used to treat CLL, such as alemtuzumab (Campath) and many chemotherapy drugs, can also increase this risk.

Your cancer care team may recommend vaccines, medicines, or other treatments to help prevent or control certain infections.

To learn more, see Supportive or Palliative Care for Chronic Lymphocytic Leukemia.

Asking your doctor for a survivorship care plan

Talk with your doctor about developing a survivorship care plan for you. This plan might include:

• A suggested schedule for follow-up exams and tests
• A schedule for other tests you might need in the future, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from your cancer or its treatment
• A list of possible late or long-term side effects from your treatment, including what to watch for and when you should contact your doctor
• Diet and physical activity suggestions
• Reminders to keep your appointments with your primary care provider, who will monitor your general health care

Keeping health insurance and copies of your medical records

During and after treatment, it’s very important to keep health insurance. Tests and doctor visits cost a lot, and you might need lifelong CLL treatment.

At some point, you might find yourself seeing a new doctor who doesn’t know your medical history. It’s important to keep copies of your medical records (or have access to them) so you can give your new doctor the details of your diagnosis and treatment.

Learn more in Keeping Copies of Important Medical Records.

Can I lower my risk of CLL progressing or coming back?

If you have CLL, you probably want to know if there are things you can do that might lower your risk of the cancer growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements.

Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure. Still, we do know that these types of changes can have positive effects on your health that extend beyond your risk of CLL or other cancers.

You can learn more in Cancer Risk and Prevention.

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of CLL progressing or coming back. This doesn’t mean that no supplements will help. But it’s important to know that none have been proven to do so.

In the United States, dietary supplements are not regulated like medicines. They don’t have to be proven effective (or even safe) before being sold, although there are limits on what they’re allowed to claim they can do.

If you’re thinking about taking any type of nutritional supplement, talk to your health care team first. They can help you decide which ones you can use safely while avoiding those that might be harmful.

Could I get a second cancer after treatment for CLL?

If you have CLL, you can still get other cancers. In fact, people with CLL are at a higher risk for getting some other types of cancer.

Sometimes, the CLL itself can progress to a faster-growing cancer, such as an aggressive type of non-Hodgkin lymphoma (see Typical Treatment of Chronic Lymphocytic Leukemia).

Some people with CLL might develop a new, unrelated cancer. This is called a second cancer.

People with CLL can get any type of second cancer, but they have an increased risk of:

• Skin cancer
• Melanoma of the skin
• Cancer of the larynx
• Lung cancer
• Colon cancer
• Kaposi sarcoma
• Soft tissue sarcoma
• Acute myeloid leukemia (AML)
• Myelodysplastic syndromes (MDS)

Some of this increased risk might be related to the CLL itself, such as when it weakens the body’s immune system. Other times, it might be due to CLL treatments, such as certain chemotherapy drugs.

If you have CLL, it’s important to see your doctor regularly. Let your doctor know if you have any new symptoms or problems. These may be from the CLL or from some other cancer or disease.

Also, be sure to get routine cancer screening tests and well check-ups. These can help find problems early, when they're usually easier to treat.

All people with CLL should avoid tobacco smoke, as smoking increases the risk of many cancers and might further increase the risk of some of the second cancers seen in people with CLL.

See Second Cancers for more information about the causes of second cancers.

Getting emotional support

Some amount of feeling depressed, anxious, or worried is normal when cancer is a part of your life. Some people are affected more than others. But everyone can benefit from help and support from other people, whether friends and family, religious groups, support groups, professional counselors, or others.

To learn more, see Living with Cancer as a Chronic Illness.