When George Valentine was diagnosed with chronic lymphocytic leukemia (CLL), he immediately started researching online. He read that he only had five to seven years to live. But now, 22 years later, Valentine has dealt with the highs and lows of living with CLL, even in the later stages.
“The best way for me to describe what I've gone through the last 20-plus years is that it’s like a hurdle in track,” Valentine says. “You jump over the hurdle and run, and then you jump over another hurdle and run. It’s exactly like that.”
What Is Advanced or Late-Stage CLL?
CLL cancer is a blood cancer that grows slowly. Many people don’t need treatment right away. Your doctor may watch and wait, regularly ordering tests to track your cancer. But during the later stages, you may have CLL symptoms.
“It is considered incurable but treatable with many options available, including clinical trials, that have the potential to give patients longer remissions and a better quality of life,” says Gwen Nichols, MD, chief medical officer of The Leukemia & Lymphoma Society.
Later-stage CLL means your symptoms or test results show certain changes, including:
- Increased number of lymphocytes (a type of white blood cell)
- Enlarged lymph nodes
- Enlarged spleen and/or liver
- Anemia (drop in the number of red blood cells)
- Drop in the number of platelets (thrombocytopenia)
Treatment Options for Advanced-Stage CLL
You may need to treat your later-stage CLL depending on your symptoms. “Treatment is designed to decrease the CLL cells and treat the associated lymph node enlargement and blood count abnormalities,” says Nichols.
There are several treatments for advanced CLL. Your plan depends on your symptoms, test results, and whether you’ve tried other therapies first. You might combine medications or try different options as your symptoms change or your cancer progresses.
“Today’s initial treatments offer most patients long periods of remission and a better quality of life,” says Nichols. “Targeted therapy and immunotherapy options are the most common first approaches when treatment begins.”
Targeted therapy
Targeted treatments focus directly on the cancer cells. These pills stop CLL cell growth but keep your healthy cells safe. Targeted therapies include:
- Bruton's tyrosine kinase (BTK) inhibitors like acalabrutinib (Calquence), ibrutinib (Imbruvica), pirtobrutinib (Jaypirca), and zanubrutinib (Brukinsa)
- Phosphatidylinositol 3-kinase (PI3K) inhibitors like duvelisib (Copiktra) and idelalisib (Zydelig)
- B-cell lymphoma 2 (BCL2) inhibitors like venetoclax (Venclexta)
Immunotherapy
Immunotherapy helps strengthen your immune system to fight off cancer cells. One type, called CAR T, teaches the T cells of your immune system to locate and kill CLL cells. You get this medication once in the hospital.
Another type of immunotherapy, monoclonal antibodies, attack and kill the cancer cells. These therapies, given alone or in combination with another medicine, include:
- Alemtuzumab (Campath)
- Obinutuzumab (Gazyva)
- Ofatumumab (Azerra)
- Rituximab (Rituxun)
Chemotherapy
Chemotherapy might be used if targeted or immunotherapy doesn’t work for you. It relies on strong drugs to kill cancer cells quickly. You’ll take chemo as a pill, through an IV in your vein, or combined with another medication.
Radiation
Radiation can lessen the pain from your CLL. The therapy uses high-energy X-rays to destroy the cancer. The painless treatment helps shrink your swollen lymph nodes or spleen, if that’s triggering your pain.
Stem cell transplant
If other treatments don’t work, a stem cell transplant may help. First, they’ll use strong chemotherapy to kill all the cells in your bone marrow, including the cancer. Next, they’ll collect stem cells through a bone marrow biopsy from a close relative or someone else. Finally, they’ll transplant these stem cells so you can make healthy blood cells again.
Treatment Side Effects
It’s important to talk to your doctor about any potential side effects before starting a new treatment, says Nichols.
“Patients with CLL have an impaired immune system due to their disease and the treatment, even when the treatment is successful,” she says. “Serious bacterial, viral, or fungal infections can occur, and patients should not ignore symptoms of infection, even if they seem minor, and report them to their health care team.”
For example, popular standard treatments like BTK inhibitors don’t usually have many side effects. Your doctor will watch your blood counts and any changes in blood pressure or heart rate. These medications can usually be given for years without problems.
However, the newer CAR T-cell therapy sometimes has more serious side effects. These can range from headaches and high fever to severe nausea and confusion.
Be sure to tell your doctor about any changes in symptoms no matter where you are in your treatment.
How to Live Well With Late-Stage CLL
“Healthy lifestyle habits, including regular exercise, staying hydrated, getting enough sleep, and maintaining a nutritious diet, can help those living with CLL feel better,” says Nichols.
Valentine says eat well, exercise, and work to keep stress under control. He used to play basketball, then took up running and played tennis. Now he’s more likely to play pickleball and golf, but he also walks 4 miles every other day.
“What you eat and the exercise you get prepares you for the next hurdle,” Valentine says. “I’m always physically ready for the next procedure.”
Managing Stress
It’s normal to be stressed when you have a condition like CLL. You might think about your outlook, medication side effects, or the cost of treatment.
Stress can negatively impact your body, especially if you’re living with a chronic condition like CLL. Daily stressors may also take a toll on your immune system, increasing your risk for infection. Keep stress in check to lower your risk for ulcers, gastrointestinal issues, heart conditions, diabetes, and depression.
“Some CLL patients might struggle emotionally because many are told they have ‘the good cancer,’” says Nichols. They might not experience the same side effects as someone who gets treatment for other cancers. “They tend to look ‘fine’ so friends and family sometimes don't realize how impactful having this cancer can be.”
Ease stress with yoga, meditation, or mindfulness. Or just take part in enjoyable hobbies that help you relax.
Build a Care Team
When you have a serious condition like CLL, make sure to build a care team. Your team can include your primary care doctor. Include your hematologist-oncologist or the doctor who’s treating your CLL, also called a blood cancer doctor.
If you have any other specialists, involve them in your care team. And consider seeing doctors in the same hospital system. They’ll easily share information and be aware of your care.
It also helps to have one friend or family member come to your doctor appointments. They can take notes, ask questions, or help you with any follow-up research.
Valentine said a key member of this care team should be a reliable, helpful pharmacist. “I see my doctor every three months, but I see my pharmacist at least once a week,” he says. “I meet with my pharmacist regularly to make sure my medications play nicely with each other.”
Make sure everyone shares your treatment plan, medication changes, and test results with each other, as needed. And don’t be afraid to ask questions if anything is unclear.
“You’re at the center of that care team,” Valentine says. “Everyone in there needs to understand they’re spokes on the wheel and you’re the hub.”
Finding Support for CLL
Talking to other people who are dealing with CLL can help you realize you don’t have to go through this alone. Talk to your doctor about patient groups and resources in your area. You can meet in person or find online support.
The Leukemia & Lymphoma Society is one place to start. You can chat with specialists who can discuss treatments. They can also help you deal with financial issues. You can find support groups for you, your family, and for caregivers.
“Living with cancer can be stressful in and of itself,” says Nichols. “A strong support system can help keep stress levels down.”
Show Sources
Photo Credit: monkeybusinessimages/Getty Images
SOURCES:
Cleveland Clinic: “Chronic Lymphocytic Leukemia.”
Mayo Clinic: “Chronic lymphocytic leukemia.”
National Cancer Institute: “Chronic Lymphocytic Leukemia Treatment (PDQ®)–Patient Version.”
University of Rochester Medical Center: “Chronic Lymphocytic Leukemia (CLL): Targeted Therapy.”
American Cancer Society: “What Is Chronic Lymphocytic Leukemia?” “Targeted Therapy Drugs for Chronic Lymphocytic Leukemia,” “Chemotherapy for Chronic Lymphocytic Leukemia (CLL),” “Stem Cell Transplant for Chronic Lymphocytic Leukemia,” “CAR T-cell Therapy and Its Side Effects,” “Radiation Therapy for Chronic Lymphocytic Leukemia,” “Typical Treatment of Chronic Lymphatic Leukemia.”
Leukemia & Lymphoma Society: “Beginning Treatment for CLL,” “Watch and Wait,” “FDA Approves First CAR T-Cell Therapy for Chronic Lymphocytic Leukemia,” “Information Specialists,” “Chronic lymphocytic leukemia (CLL),” “Radiation Therapy.”
The Malaysian Journal of Medical Sciences: “Life event, stress and illness.”
Gwen Nichols, MD, chief medical officer, The Leukemia & Lymphoma Society.
George Valentine, CLL patient and advocate.
