Published Aug 21, 2026

A Message for Caregivers: What to Know and When to Call for Help When Caring for CLL Patients

Medical Source: Dr. Yazan Samhouri
Banner MD Anderson Cancer Center

Details
Save This Video

Becoming a CLL Caregiver: What to Know

If you will be taking on a caregiver role for a patient with chronic lymphocytic leukemia (CLL), Dr. Yazan Samhouri, a hematologist at Banner MD Anderson Cancer Center in Arizona, recommends connecting with their care team to learn the basics about their condition and treatment plan.
Caregivers can help patients get to and from appointments, track side effects, and address other practical and emotional needs.
Recognizing serious symptoms — especially those patients may be too weak or confused to report themselves — is essential, as complications like infections or bleeding can escalate quickly.
Dr. Samhouri says the most important questions to ask the patient’s care team is, “When should I call you?” It’s critical to understand what symptoms or situations warrant an immediate call.

Caring for a loved one with chronic lymphocytic leukemia (CLL) might involve providing both physical and emotional support, and acting as a first line of defense in spotting problems before they become emergencies.

Dr. Yazan Samhouri, a hematologist and bone marrow transplant physician at Banner MD Anderson Cancer Center in Gilbert, Arizona, says getting informed about CLL and the treatment process is one of the most valuable things a caregiver can do before small issues become larger problems.

“My advice would be to learn about CLL and its treatment as the patient learns about them,” Dr. Samhouri tells SurvivorNet.

Nurses and other professionals involved in care can provide information and education to help reduce burden and help caregivers feel more confident in their roles.

Higher self-efficacy (a caregiver’s confidence in their ability to help) has been linked to less emotional distress, less anxiety, and a better quality of life for the caregiver.

The Practical, Everyday Role of a Caregiver

Your role as a caregiver for someone with CLL can evolve overtime and will depend largely on their treatment plan.

Whether a patient is on active surveillance (“watch and wait”) or starting a targeted therapy such as a BTK inhibitor (ibrutinib, acalabrutinib, zanubrutinib) or the BCL-2 inhibitor venetoclax, frequent blood work and office visits are standard, because clinicians are watching closely for early side effects and lab changes.

Caregivers may need to help with transportation to and from the doctor’s office. “They might need a drive or frequent blood work, especially in the first few weeks,” Dr. Samhouri says.

Whether you’re a partner, sibling, parent, friend, or even a child, stepping into the caregiver role means embracing both emotional and logistical support. Caregivers often serve as a steady presence through treatment, appointments, and everyday life.

The role of a caregiver can include:

Taking the patient to and from their appointments and asking key questions
Offering transportation and companionship during treatments
Tracking side effects, monitoring symptoms, and communicating with care teams
Connecting with social workers and patient navigators
Helping manage daily routines and providing reassurance in difficult moments

A Caregiver’s Role in Monitoring Symptoms

One of the most important jobs of a CLL patient caregiver is to keep a watchful eye on subtle changes within the patient and bring them to the attention of the patient and their doctor.

“Maybe the patient becomes too weak or something like this, and the caregiver really has to take action — and either bring them to the emergency room or call us,” Dr. Samhouri says.

Some of the most serious complications of CLL and its treatments, including infections related to low blood counts and bleeding risk associated with BTK inhibitors, can escalate quickly.

Similarly, drug labeling for BTK inhibitors like acalabrutinib specifically instructs patients to contact their doctor immediately or seek emergency care for signs of internal bleeding, such as confusion, severe headache, or blood in stool or urine.

When these symptoms appear, patients may be too fatigued, confused, or unwell to recognize or report them. A caregiver’s ability to notice and act can be critical.

‘When Should I Call?’

“For our caregivers, they should familiarize themselves with CLL as a disease, with the possible — or at least the main — side effects of treatment options. And mainly, ask the doctor: “When should I call you?” I think that’s an important question,” Dr. Samhouri says.

Since there is no single universal checklist that applies to every CLL patient, the threshold for when a patient and their caregiver should contact their doctor depends on the specific drug, dose, and the patient’s individual risk factors.

It may be helpful to ask your doctor directly, “When should I call you?” since he or she will know enough about the patient’s specific CLL diagnosis to provide individualized guidance rather than something a caregiver could look up in general terms.

Caregiving & Caring For Yourself

Caregiving is no small task. Research on cancer caregiving describes measurable physical, psychological, and financial burden among family caregivers, with a substantial share reporting elevated caregiver burden, anxiety, or depression tied to the intensity of the caregiving role.

Caregivers are also encouraged to seek mental health support and join caregiver support groups. These steps can reduce the risk of caregiver burnout, a condition marked by chronic fatigue, stress, and emotional strain caused by prioritizing someone else’s needs over your own.