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8 Ways To Live Better With CLL

Medically reviewed by Fatima Sharif, MBBS, FCPS
Written by Joan Grossman
Updated on April 8, 2024

Living with chronic lymphocytic leukemia can be challenging, but you can take steps to feel better and enjoy a high quality of life. Whether you’re currently treating CLL or monitoring your condition through watchful waiting, healthy lifestyle changes and basic precautions can protect your health and well-being.

How Can Chronic Lymphocytic Leukemia Affect Your Well-Being?

CLL is a type of cancer that affects white blood cells called lymphocytes. In CLL, lymphocytes become abnormal, and the bone marrow produces too many. CLL primarily affects B lymphocytes, or B cells, which are part of the immune system. In CLL, abnormal white blood cells impair the body’s ability to fight infection. They also crowd out red blood cells and platelets, lowering blood cell counts and leading to other symptoms. Additionally, involvement of the lymph nodes, liver, and spleen may cause symptoms like abdominal pain and loss of appetite.

In early stages, CLL may not cause any symptoms. As the disease progresses, it causes common symptoms like fatigue, swollen lymph nodes, unexpected weight loss, and night sweats.

CLL is diagnosed using blood tests, a physical exam, and an evaluation of your medical history. CLL progresses slowly. A range of effective treatment options, such as targeted therapies that attack cancer cells, can help most people with CLL maintain a fulfilling life for many years.

These tips can help you care for yourself while living with CLL.

1. Stay Physically Active

Research has shown that exercise and physical activity can improve fatigue, quality of life, and immune system function. Staying active is considered by many health care professionals to be an important component of cancer care.

A brisk walk or bike ride can provide moderate aerobic exercise (activity in which you feel a little out of breath). Strength and resistance training are also important to improve muscle strength and endurance. The American Cancer Society recommends 150 to 300 minutes of moderate exercise each week, but you can slowly work your way up to 30 minutes or more each day. Remember, any exercise is better than no exercise at all.

Ask your health care provider for a referral to a physical therapist who can design an exercise program that’s right for you.

2. Eat a Balanced Diet

Eating a well-balanced diet can support your overall health. A nutritious diet and healthy weight can also improve your strength during cancer treatment and help you better tolerate side effects. Research shows that a nutritious diet can help improve immune function and support healthy gut bacteria, which is associated with an effective immune system.

The Leukemia & Lymphoma Society says that the best diet for CLL includes plenty of fruits and vegetables, low-fat protein and dairy, whole grains, and olive oil or other healthy oils. Avoid foods with trans fats or added sugar, and try not to eat more than 2,300 milligrams of sodium (salt) each day.

Along with a nutritious diet, consider adopting these beneficial habits:

  • Drink plenty of water to stay hydrated.
  • Skip caffeinated beverages if you experience nausea or acid reflux.
  • Avoid smoking. By staying away from cigarettes, you improve cancer treatment outcomes, reduce side effects from treatment, and lower the risk of cancer returning or spreading to secondary cancers.
  • Eat iron-rich foods like meat, legumes, and nuts to prevent worsening of anemia caused by CLL.

If you drink alcohol, do so in moderation, and talk to your oncologist about your alcohol consumption.

3. Get Enough Sleep and Rest

Some members of MyLeukemiaTeam have asked, “Does CLL make you tired?” In fact, poor sleep quality is common for people with CLL. People with cancer can experience sleep disturbance or insomnia due to a number of factors, such as anxiety, pain, night sweats, or the side effects of radiation, chemotherapy, or medications. Losing sleep can impair your health and quality of life.

Good sleep hygiene can help you sleep better. Try these strategies:

  • Keep your bedroom cool, with a fan nearby in case you need it.
  • Sleep at similar times each day.
  • Avoid watching TV and looking at your phone or other screens at bedtime, because light from screens can disturb sleep.
  • Don’t go to bed if you’re either hungry or too full.
  • Sleep on a soft towel if you get night sweats.

If you’re experiencing daytime tiredness, make time to rest. Don’t feel guilty about napping when you need it. Quality sleep can improve your physical and mental health, support your immune system, and reduce stress.

4. Stay Positive and Manage Stress

A positive outlook can help you minimize stress and build resilience. It’s normal to have negative thoughts sometimes, and a diagnosis of CLL can cause anxiety and depression. But you can take steps to maintain a positive attitude despite a cancer diagnosis. Here are some ways you can manage stress and stay positive:

  • Cultivate an attitude of gratitude by focusing on things you’re thankful for, such as time with friends and family.
  • Do activities you enjoy, like reading, listening to music, or watching upbeat shows.
  • Spend time in nature to recharge and refresh your outlook.
  • Find meaning outside yourself, perhaps through volunteering or helping others.
  • Learn techniques for managing stress, such as mindfulness training, yoga, or tai chi.

Talk to your health care provider if you need help managing stress. You can get a referral for mental health counseling or cognitive behavioral therapy.

5. Stick to Your Treatment Plan

It’s essential to maintain your treatment plan. Attend all follow-up and monitoring appointments. If you have any other health conditions, keep them under control as much as possible. Untreated comorbidities — other health conditions you have at the same time — can affect your CLL treatment options and outcome. If you’re concerned about sticking to your treatment plan, talk to your health care team for support.

Get the best possible outcomes by sticking to your treatment plans for CLL and any other health conditions you have.

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6. Avoid Infections

People with CLL tend to get sick a lot. One member of MyLeukemiaTeam asked, “Does CLL make you immunocompromised?” In fact, CLL and its treatments can affect the immune system. People with CLL have a high risk of infection due to both immune dysfunction from the disease itself and immune suppression from treatments. The risk of infection rises the longer you have CLL, and infections among people living with CLL can be life-threatening. You can take simple steps to avoid infections and help protect your health.

Risk of infections goes up the longer you live with CLL, so it’s important to take precautions.

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The following strategies can help you avoid infections and stay healthy:

  • Wash your hands carefully and frequently.
  • Keep up to date with appropriate vaccines, particularly flu and pneumonia vaccines.
  • Delay live vaccines at least three months after completing your chemotherapy regimen for CLL. Talk to your oncology team before getting vaccines that contain live virus particles or bacteria.

People with CLL are advised to get vaccinated against COVID-19. Although vaccination reduces your risk of infection, don’t assume you’re fully protected against COVID-19 once you’re vaccinated. Take extra precautions, wear N95 masks indoors and in crowded environments, and maintain social distancing.

Get medical advice on how to mitigate risks if you’re thinking about attending a crowded event, especially if you’re currently in treatment. Your health care provider can also advise you on an appropriate vaccination schedule.

7. Talk to Loved Ones

Talking to family and close friends honestly about your experience with CLL can help you get the emotional support you need. Those who are closest to you may need guidance on how they can help you, and they may not know what to say. Once they understand your experience better, they’ll have more insight into how they can help.

Open communication with loved ones can help you make health care decisions and express your feelings about your condition. Staying connected to the people you care about is an important component of your self-care.

8. Connect With Others Living With Chronic Lymphocytic Leukemia

People with CLL can benefit from connecting with others who understand life with blood cancer. In-person support groups and online support groups, such as MyLeukemiaTeam, can provide a place to safely talk about life with CLL. Some members are veterans who have been living with CLL for 10, 20, or 30 years.

MyLeukemiaTeam members often discuss the support they get from one another. “We have to be faithful and rely on the support of family, friends, and this fabulous support group here,” wrote one member.

“You are not alone,” another member reminded others. “We are here to support one another.”

“With the help and support of our awesome members of MyLeukemiaTeam, we will get through this,” said another member. “Supporting each other and a positive outlook means a lot in this battle!”

Talk to Others Who Understand

MyLeukemiaTeam is the social network for people with leukemia and their loved ones. On MyLeukemiaTeam, more than 17,000 members come together to ask questions, give advice, and share their stories with others who understand life with leukemia.

Will you try any of these tips to feel better while living with CLL? What else helps you feel your best? Share your experience in the comments below, or start a conversation by posting on your Activities page.

Updated on April 8, 2024

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What Is The Life Span From Diagnosis Of T-pll?

April 18, 2024 by A MyLeukemiaTeam Member 10 answers
Fatima Sharif, MBBS, FCPS graduated from Aga Khan University, Pakistan, in 2017 after completing medical school. Learn more about her here.
Joan Grossman is a freelance writer, filmmaker, and consultant based in Brooklyn, NY. Learn more about her here.

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