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For people living with chronic lymphocytic leukemia, also called CLL, learning it’s time to move into active cancer treatment can be daunting.
In one way, it may be a relief to know that the uncertainty of the “watch and wait” period of CLL maintenance — sometimes called “watch and worry” — is over. Treatment also can help you feel better, improve your quality of life, and reduce troublesome symptoms such as fatigue, frequent fever, drenching night sweats, weight loss and abdominal pain.
At the same time, treatment brings its own challenges. It may be frustrating to navigate the financial burden of a chronic illness and balance treatment with your work responsibilities and family life. And although recent advances in CLL medicine mean more effective, tolerable options than ever, you may still experience side effects from your treatment.
But you don’t have to muddle through these challenges alone. Below, Mazie Tsang, M.D., M.A.S., M.S., a hematologist and CLL expert at Mayo Clinic in Arizona discusses how you can maintain your quality of life throughout your CLL treatment journey.
Small habits can have a big impact
There are a number of realistic, effective strategies to keep you living as well as possible during your CLL treatment. Dr. Tsang recommends talking to your cancer care team about the following:
- Regular health maintenance. When you have cancer treatments to worry about, it can be easy to let other aspects of your health fall to the wayside. But CLL can impact your immune system and leave you more vulnerable to infections. Your primary healthcare professional can help you stay on top of routine vaccinations as recommended by the Centers for Disease Control and Prevention for individuals with weakened immune systems, such as the flu, COVID-19 and pneumonia vaccinations. Additionally, CLL can increase the risk of developing other types of cancers, including skin cancer. Dr. Tsang recommends keeping up to date with all cancer screenings and getting a head-to-toe skin exam at least once a year.
- Exercise and diet. Most people know that eating a healthy diet and staying active comes with a range of health benefits. “Regular physical activity can improve immune function, energy levels, mental health and quality of life,” says Dr. Tsang. These benefits can be especially important as CLL can impact the immune system and cause fatigue. In addition, staying active can help you manage stress, cope with chronic illness and stay connected with friends.
- Vitamin D. Low vitamin D levels have been associated with a more rapid need for treatment and worse survival for people with CLL. As a result, Dr. Tsang says it is important to make sure your vitamin D levels are in the appropriate range. A 2024 study found that for people with CLL in the watch and wait period and those under 65 years of age, vitamin D supplements were associated with a delayed need to start treatment. Most study participants took vitamin D combined with calcium or as part of a multivitamin. The average dose was 400 international units (IU) daily. But your daily recommended dose can depend on your situation, so it’s a good idea to talk to your care team.
- Green tea extract. In a 2013 study, Mayo Clinic researchers found that epigallocatechin gallate (EGCG) — a green tea extract — may help reduce lymph node enlargement and absolute lymphocyte count in people with early-stage CLL. Participants in the study took a twice daily dose of 2,000 milligrams of EGCG for six months, though Dr. Tsang says a dose that high isn’t recommended outside of a research environment and close monitoring. “I do discuss the study and print the article out for my patients in case they would like to consider using EGCG, although I caution them about the lack of regulation for supplements,” Dr. Tsang says. “If people are still interested, I suggest drinking a couple of cups of green tea a day or consider taking a lower dose of EGCG once a day.” But before trying anything new, it’s important to consult with your care team about supplements and their potential risks.
- Immune system support. It’s not uncommon for people living with CLL to feel nervous about potential exposures to infection or illness. For people who are at higher risk of infections due to a condition called hypogammaglobulinemia, characterized by a low immunoglobulin G (IgG) level, Dr. Tsang says you may be given intravenous immunoglobulin infusions (IVIG) to boost the immune system, decrease risk of infection and shorten the illness period. Frequent hand-washing and wearing a mask in certain settings also can help protect you from infection.
- CLL support groups. From her research at Mayo Clinic, Dr. Tsang has found that anxiety is often one of the most notable quality-of-life issues for people after diagnosis. Support groups can help you cope with your emotions, get connected to resources and find solidarity with people who know firsthand what you are experiencing. If you have been diagnosed with CLL or are a caretaker of someone living with CLL, Dr. Tsang recommends resources through the CLL Society, Leukemia and Lymphoma Society, and the Lymphoma Research Foundation.
If you are concerned about any aspect of treatment or its impact on your daily life, it’s a good idea to have an open and honest discussion with your care team. When your care team understands the challenges you may be experiencing, team members are better able to provide supportive resources, recommend specialist care and help you navigate logistical barriers.
Ask about palliative care and integrative medicine
Often, all the healthy habits in the world aren’t enough to cope with a chronic illness. If you find yourself in need of more support, palliative care and integrative medicine can help.
Palliative care is a specialty service that offers a range of therapy options for people living with cancer and other serious illnesses. The goal is to improve quality of life and help you better cope with the side effects of treatment at all stages of illness. Palliative care is not the same as end-of-life care, also called hospice care, though it is possible that palliative care is covered under your health insurance’s hospice policy.
Palliative care can offer a range of benefits for people living with cancer and other chronic illnesses. According to the American Cancer Society, people who access palliative care experience a higher quality of life, better emotional well-being and less severe symptoms.
To help with your CLL symptoms and treatment side effects, you also may consider asking your care team or palliative care specialist about accessing complementary therapies alongside your primary cancer treatment. These options, referred to broadly as integrative medicine, may include:
- Acupuncture.
- Resilience training.
- Yoga.
- Massage therapy.
If you or your caretaker feel it’s time for more support, talk to your care team or social services about your options. You also may use a provider directory from the Center to Advance Palliative Care.
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