There are over 18,000 people diagnosed with chronic lymphocytic leukemia (CLL) each year, according to the American Cancer Society. If your loved one is one of them, it can feel overwhelming, both for them and for you. “People with CLL and their caregivers often hear at their first appointment that they have ‘the good cancer,’” says Jennifer Wilson, senior information specialist at the Leukemia and Lymphoma Society. “But those comments, while meant to be reassuring, can still be very difficult for patients and caregivers to hear. No one wants any form of cancer.”
How to Support Your Loved One After Diagnosis
When your loved one is diagnosed with CLL, their first response may be disbelief. “They often look and feel fine, and the condition was only picked up through routine bloodwork,” points out Brian Koffman, MD, chief medical officer of the CLL Society, who has CLL himself.
To top it off, your loved one’s cancer specialist may recommend no treatment at all. Up to 80% of people newly diagnosed with CLL don’t have symptoms, according to a 2023 study published in the medical journal JAMA. “The first step is usually watchful waiting, where a patient’s condition is closely monitored without any treatment until symptoms of the disease appear,” says Koffman. In fact, up to a third of people with CLL never need treatment, according to the JAMA paper. “It can be incredibly stressful, for both the patient themselves and their caregiver because they feel like their doctor isn’t doing anything,” says Koffman.
One way to help alleviate this anxiety -- for both of you -- is to be as proactive as possible. You can start by making sure that the doctor your loved one is seeing is a CLL specialist. This is someone who is a hematologist-oncologist, a doctor who specializes in treating blood cancer, says Wi
lson. This ensures that they will be up to date, not only on treatments but on the latest thinking that surrounds them. If you’re not sure where to start, you can find names on the American Society of Hematology’s website.
After you’ve done that, mentally reframe the disease. “This is a good time to point out to your loved one that while you’re in this watch-and-wait moment, you can both take the time to learn all that you can about CLL,” recommends Wilson. “I also always suggest to caregivers that they point out that there’s so much research going on right now, that by the time their loved one does require treatments, they may be even more effective and have fewer side effects.”
Wilson also recommends that caretakers attend every appointment with the CLL specialist. This way, your loved one can listen, and you can jot what the doctor says down. “My wife and I have gone to appointments together and walked out with completely different takes on what the doctor said,” notes Koffman. “She’s almost always right because I’m so emotionally engaged I don't process everything. She can take a step back and be a more impartial note-taker.”
Regardless, Wilson recommends that both the caregiver and the patient sit down together before a visit and write all their questions down. “Don’t leave the doctor’s office until they’re all answered,” she says.
How to Support Your Loved One During Actual Treatment
Much of your journey as a caregiver to someone with CLL is to be by their side during the watch and wait period. But when treatment starts, you’ll want to be there for them, too. Koffman recommends that you begin by reaching out to other caregivers to ask about their experience. “Both you and your loved one will have many questions about initial treatment,” he says. “It’s helpful for the caregiver to know, for example, that they should bring plenty of things to keep them busy during a 6-hour infusion, since their loved one will most likely be snoring because they were given medication to make them sleepy.”
During treatment, Koffman recommends that you keep a close eye on your loved one to make sure they aren’t overdoing it. “I recently went through a clinical trial for CLL, and experienced what’s known as a cytokine storm, where your immune system responds too aggressively to infection,” he recalls. “I had fever, chills, drenching night sweats, fatigue -- all of which left me useless. My wife really stepped in and became a gatekeeper during this time. She wouldn’t let me drive and was adamant that I not take work calls. I really needed someone to set those firm boundaries for me. Often the patients themselves are completely unaware of how debilitated they truly are.”
If your loved one is resistant to your taking such a front and center role, Wilson recommends that you stay active but more behind the scenes. “You can come up with a system to remind your loved one to remember to take their medications every day, or research financial resources for assistance with medical costs for copays,” she suggests. You’ll still want to go to follow-up doctor visits, too. “Caregivers often notice things a patient doesn’t, such as side effects, and this is information that their physician needs.” Since many CLL patients tend to be older (the average age of diagnosis is 70), they may also need your assistance to access online resources, such as the Leukemia and Lymphoma Society’s First Connections Program, which enables patients and their loved ones to connect with a trained peer volunteer.
Take Care of Yourself, Too
“CLL caregivers are the unsung heroes who make everything possible,” says Koffman. “They’re never supposed to complain or whine about what’s going on, even when they make huge sacrifices.” Koffman’s own wife, Patty, for example, had to put her career on hold so that the couple could temporarily relocate so that Koffman could go through a clinical trial. “Everyone talked about how brave I was to be part of this research, but no one ever talked about what Patty gave up making this happen,” he emphasizes.
Here are some things to do for yourself to make it easier:
Find support. It can be as simple as another friend who has a loved one with cancer, or it can be through therapy or a support group, says Koffman. Your loved one’s social worker or case manager may be able to help you find a therapist or support group. Groups like the CLL Society or the Leukemia & Lymphoma Foundation have resources, too.
Get help. When family and friends ask how you are, or offer to provide help, take them up on it. That usually means giving them specific tasks, notes Wilson. An adult child, for example, can deal with insurance agents to help you stay on top of medical costs, while another one can organize a meal train so that you don’t have to worry about cooking. Consider making a chart where others can sign up to help with daily or weekly caregiving tasks.
Give yourself a break. Make sure that you carve out time to do things you enjoy, whether it’s going for walks, playing with grandchildren, or watching your favorite TV show. Your loved one’s social worker can also help you find respite care if you aren’t comfortable leaving them alone.
Take care of your body. The stress of caregiving can take its toll, says Wilson. Follow these four healthy habits:
- Exercise regularly.
- Eat healthy foods.
- Stay hydrated.
- Get enough sleep.
If you find it’s hard to do these things or you have unhealthy habits like smoking, drinking too much alcohol, or using prescription meds improperly, get professional help.
It’s important to follow all of the above tips and not to feel guilty. “You won’t be able to help your loved one if you don’t put yourself first,” stresses Wilson.
Show Sources
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SOURCES:
Jennifer Wilson, LCSW, senior information specialist, Leukemia and Lymphoma Society.
Brian Koffman, MD, chief medical officer, CLL Society.
American Cancer Society: “Key Statistics for Chronic Lymphocytic Leukemia.”
Journal of the American Medical Association: “Diagnosis and Treatment of Chronic Lymphocytic Leukemia: A Review.”
American Society of Clinical Oncology: “Caregivers Taking Care of Themselves.”
