Early symptoms of chronic lymphocytic leukemia (CLL) are usually minimal. The majority of people with CLL won’t receive treatment right after diagnosis. Instead, you may be monitored through a watch and wait approach.

Symptoms of disease progression include fatigue, weight loss, night sweats, and more frequent and serious infections. Once treatment starts, you’ll likely also experience side effects of the chemotherapy or immunotherapy medications until your disease goes into remission.

These symptoms, along with the side effects of treatment and the challenge of managing a chronic disease, can have a profound impact on your quality of life. While some life changes are inevitable, there are steps you can take to minimize the negative effects of CLL.

The first step to managing your quality of life is being armed with knowledge about what to expect.

Most people are diagnosed with CLL when the disease is at an early stage and they have no clinical symptoms. This means that you may not have any physical challenges in your day-to-day life at first.

If your CLL progresses, however, you might begin to feel tired and short of breath more often. You may need to rest and recharge throughout the day to keep your energy levels up. Fatigue is one of the most commonly reported symptoms in people with CLL, even in those diagnosed at an early stage.

Treatment can cause significant side effects, including nausea, hair loss, and frequent infections. Speak to your doctor about ways to minimize treatment side effects.

Since CLL attacks your immune system, susceptibility to infection can be a major problem. A simple respiratory infection can progress to pneumonia, which can take months to recover from.

Frequent infections on top of low energy levels can make working more difficult. Other symptoms, including increased bleeding and easy bruising, can make a physical job difficult and even unsafe.

Many people who experience symptoms also have night sweats, which can make getting a good night of sleep difficult. Stress and anxiety can also negatively impact sleep.

One way to manage sleep issues is by establishing proper sleep hygiene. For example:

  • Go to sleep at the same time each night.
  • Wind down before bed with a warm bath or shower and relaxing music.
  • Avoid looking at bright cell phone, TV, or computer screens before bed.
  • Invest in a comfortable bed and bedding.
  • Ensure your bedroom is cool, dark, and quiet.

Engaging in some exercise during the day, drinking plenty of water, and finding ways to reduce stress, such as meditation or deep breathing exercises, can also improve your sleep and overall quality of life.

An early stage CLL diagnosis is typically managed with a “watch and wait” approach. While this is the standard approach, you may find it difficult to get through each day knowing that you have cancer.

You may even feel that nothing is being done about the situation. Uncertainty about the future, and the impact of cancer on your family members, finances, and ability to work, can be stressful.

One study found that over half of patients reported thinking about their CLL diagnosis daily. Another study found that roughly one-fifth of people with CLL experienced substantial levels of anxiety. Worse anxiety was associated with active treatment.

Emotional support is crucial for people with a CLL diagnosis. If you’re experiencing anxiety and find yourself frequently worrying about your diagnosis, consider meeting with a mental health counselor or joining a support group.

Along with stress and anxiety, fatigue may make it hard for you to maintain a social life. But it doesn’t have to be that way.

Try your best to stay close to family and friends after your diagnosis. You may find that opening up about your diagnosis can lift some of the weight off your shoulders. You may also find speaking with a social worker helpful to improve communication between you and your loved ones.

Healthcare can be expensive. Whether you’re still able to work or not, any sort of chronic illness can make you concerned about finances. Try to take advantage of all financial resources available to you.

A social worker and non-profit organizations like the Patient Access Network (PAN) Foundation and the Leukemia and Lymphoma Society (LLS) can give you advice on where to start. A social worker can also help you navigate issues with insurance.

Most people with early stage CLL have no disease-related symptoms. But people with later stage CLL, especially those undergoing treatment, can find fatigue, pain, and sleep disturbances particularly challenging.

Ask your doctor for referrals to other healthcare providers, such as physical therapists, nutritionists, and pain specialists to help manage these quality of life concerns.