Early symptoms of chronic lymphocytic leukemia (CLL) are usually minimal. The majority of people with CLL won’t receive treatment right after diagnosis. Instead, a healthcare professional may suggest monitoring the condition through a watch and wait approach.

Symptoms of disease progression include:

  • fatigue
  • weight loss
  • night sweats
  • more frequent and serious infections

Once treatment starts, you’ll likely also experience side effects of the medications until the CLL goes into remission.

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

The first step to managing your quality of life is knowing what to expect.

Most people receive a CLL diagnosis 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 the 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 who get a diagnosis at an early stage.

People with CLL may also experience:

  • low grade fevers
  • unexplained weight loss
  • feelings of fullness

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

Since CLL attacks your immune system, you may be more likely to get a severe infection. For example, a simple respiratory infection can progress to pneumonia, which can take months to recover from.

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

You may want to speak with your boss about getting extra support to help lighten your workload and ask about the possibility of working remotely. Reach out to friends and family for help with daily tasks like cooking, cleaning, or running errands.

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

One way to manage sleep concerns is by establishing proper sleep hygiene, such as:

  • going to sleep at the same time each night
  • winding down before bed with a warm bath or shower and relaxing music
  • avoiding bright cell phone, TV, or computer screens before bed
  • investing in a comfortable bed and bedding
  • ensuring your bedroom is cool, dark, and quiet

Other ways to improve your sleep and overall quality of life include:

  • engaging in some exercise during the day
  • drinking plenty of water
  • finding ways to reduce stress, such as meditation or deep breathing exercises

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 cause stress.

In one 2021 study, anxiety or worry was the most frequently reported symptom among patients receiving their first treatment for CLL. Another study from 2017 found that roughly one-fifth of people with CLL experienced substantial levels of anxiety. Researchers associated worse anxiety 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 this doesn’t have to stop you from making and having close connections.

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 that speaking with a social worker helps improve communication between you and your loved ones.

Many people find support groups to be helpful when going through the cancer continuum. Organizations like the CLL Society and the Leukemia and Lymphoma Society (LLS) have resources that can point you to a support group in your area. The American Cancer Society also has a database that allows you to search for a support group.

Healthcare can cost a lot of money. Whether you’re still able to work or not, any sort of chronic health condition can cause concern about finances.

Try to take advantage of all financial resources available to you.

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

Patients with newly diagnosed CLL may wonder what their quality of life will look like with this health condition. Although it depends on the disease and treatment stage, these are some common questions people tend to have:

How does CLL make you feel?

If your CLL is in the early or low risk stages, you may not need to undergo treatment just yet — or ever. That said, you may still experience a negative impact on your mental health. Talking with friends and family or a counselor can help address this.

People whose disease is in the intermediate or high risk stages may notice a more significant impact on their quality of life.

One 2021 study suggests that decreased physical functioning is the symptom most commonly experienced in people with relapsed or refractory CLL. Researchers also note that decreased cognitive and emotional functioning was more frequent among these people than among those receiving their first line of treatment.

Can you live a “normal” life with CLL?

People with low risk CLL who are in the watch and wait stage will likely continue regular tasks without an effect on their physical abilities.

You may, however, have increased anxiety or worry about the future. Reaching out to a support group or counselor to help balance the emotional impact can help.

People with CLL in higher risk stages, who are currently undergoing treatment, may experience more physical symptoms as well as treatment side effects. Communicate openly with your doctor about your symptoms and side effects so that they can help you address them.

You may also want to reach out to friends and family or a nonprofit organization for support in completing regular tasks if CLL or your treatment is making it difficult to complete them.

What is the life expectancy after a CLL diagnosis?

Among people diagnosed with CLL, 86.9 percent survive for 5 years or more. Although people who receive a diagnosis when they’re under age 55 are more likely to live longer, the 5-year survival rate remains high for those over age 65.

Thanks to treatment advances over time, the survival rates for CLL have gradually increased.

Most people with early stage CLL have no condition-related symptoms. 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 professionals, such as physical therapists, nutritionists, and pain specialists to help manage these quality-of-life concerns.