Chronic lymphocytic leukemia (CLL) is rarely able to be cured. Still, most people live for many years with the disease. Some people with CLL can live for years without treatment, but most eventually need to be treated. Most people with CLL are treated on and off for years. Treatment may stop for a while, but it never really ends. Learning to live with cancer that does not go away can be difficult and very stressful. See When Cancer Doesn't Go Away for more about this.
Before, during, and after treatment, your doctors will want to watch you closely. It is very important to go to all of your follow-up appointments. During these visits, your doctors will ask questions about any problems you may have and may do exams and lab tests or x-rays and scans to look for signs of cancer or treatment side effects. Almost any cancer treatment can have side effects. Some may last for a few weeks to months, but others can last the rest of your life. This is the time for you to talk to your cancer care team about any changes or problems you notice and any questions or concerns you have. It is important that you report any new symptoms to the doctor right away so that the cause can be found and treated, if needed.
Checkups may include careful physical exams, blood tests, and other tests as needed. A benefit of follow-up care is that it gives you a chance to discuss questions and concerns that can arise.
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 to come back again (recur) at some point. Further treatment will depend on what treatments you've had before, how long it's been since treatment, and your overall health. For more information on how recurrent CLL is treated, see “How is chronic lymphocytic leukemia treated?” For more general information on dealing with a recurrence, see When Your Cancer Comes Back: Cancer Recurrence.
It is important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.
Most people with CLL do not have normally functioning immune systems, which may raise their risk for certain infections. Some treatments for CLL, such as alemtuzumab (Campath) and many chemotherapy drugs, may also raise this risk. Your doctor may recommend vaccines or other medicines to help prevent or control certain infections.
People with CLL are also at increased risk of developing a second cancer. At least some of this increased risk may be due to the effects of CLL on the immune system. Treatments for CLL may also raise the risk of some cancers. The most common second cancers in people with CLL are skin and lung cancers, although other types of leukemia, lymphoma, and other blood cancers are also possible. It is important to be aware of this increased risk and to report any possible symptoms to your doctor right away.
Seeing a new doctor
At some point after your cancer diagnosis and treatment, you may find yourself seeing a new doctor who does not know anything about your medical history. It is important that you be able to give your new doctor the details of your diagnosis and treatment. Gathering these details soon after treatment may be easier than trying to get them at some point in the future. Make sure you have the following information handy:
- A copy of your pathology report(s) from any biopsies or surgeries
- If you had surgery, a copy of your operative report(s)
- If you were in the hospital, a copy of the discharge summary that doctors prepare when patients are sent home
- If you had radiation therapy, a copy of the treatment summary
- If you were treated with drugs (such as chemotherapy, monoclonal antibodies, or targeted therapy), a list of the drugs, drug doses, and when you took them
The doctor may want copies of this information for his records, but always keep copies for yourself.
Last Revised: 02/23/2016