CLL Treatment: How Will Daily Life Be Impacted?
- The first several weeks of CLL treatment are typically the most demanding, with side effects, frequent labs, and closer monitoring. This is true whether a patient is starting a BTK inhibitor (a type of targeted therapy) or a fixed‑duration combination like venetoclax (another targeted therapy) and obinutuzumab (a monoclonal antibody).
- “It may be a little bit of a rocky course for the initial few weeks, but once we get past four or five weeks, I would expect that it’s going to be much, much smoother after that,” says Dr. Kieron Dunleavy, of Georgetown Lombardi Comprehensive Cancer Center in Washington, D.C.
- Planning ahead by requesting short-term flexibility at work and making arrangements with a caregiver can make the early adjustment period far easier.
- Most patients settle into a more manageable routine after those first weeks.
Things typically get smoother after that, Dr. Kieron Dunleavy, a medical oncologist and hematologist at MedStar Georgetown University Hospital, Georgetown Lombardi Comprehensive Cancer Center, in Washington D.C., tells SurvivorNet.
Read MoreWhat to Expect from BTK Inhibitors
For patients starting a BTK inhibitor (Bruton’s tyrosine kinase inhibitors), a targeted therapy, as a single therapy, Dr. Dunleavy sets expectations early with his patients.“It may be a little bit of a rocky course for the initial few weeks, but once we get past four or five weeks, I would expect that it’s going to be much, much smoother after that,” Dr. Dunleavy tells SurvivorNet.
Dr. Dunleavy typically brings patients back to the clinic about two weeks after starting treatment to check their blood counts, then gradually spaces out visits to four weeks, six weeks, and beyond as patients stabilize.
Patients starting a fixed-duration regimen with obinutuzumab, a monoclonal antibody, and venetoclax, another targeted therapy, often have a more intensive early period.
“It is going to be a very bumpy ride for the first six or eight weeks,” Dr. Dunleavy says of this approach, which involves an initial phase of obinutuzumab followed by a gradual ramp-up of venetoclax, with frequent lab checks and clinic visits.
But he emphasizes that “just like the patients who get BTK inhibitors, once we get past that point, it’s very much smooth sailing after that.”
Planning Treatment Around Work
Since the early weeks of treatment can be demanding, Dr. Dunleavy generally advises patients to plan for some time away from a full workload, at least at the start.
“For the first few weeks, regardless of which of these treatments you’re going through, it is helpful if you can either take off work or have a schedule that’s not going to be too demanding,” he says.
He encourages patients to be upfront with their employer about what’s going on. In his experience, that conversation tends to go better than patients expect.
“I’ve never really encountered a situation where their boss or supervisor is not completely supportive,” Dr. Dunleavy says.
Working remotely, or scaling back responsibilities for a few weeks, is often a reasonable option while patients adjust to a new treatment.
Expert Resources for CLL Patients
- “Be Proud Of What You’re Doing” — Justine Almada’s Ode to Cancer Caregivers
- A Message For Glioma Caregivers: How To Support Your Loved One Through A Diagnosis
- Actor Kristen Bell Honors Cancer Caregivers: ‘I Know What it’s Like to Lose Someone’
- CLL Treatment: The Side Effects to Expect & Why Reporting All New Symptoms is Crucial
- CLL is Not Considered Curable So Treatment May Resume Years Later
- Determining When CLL Treatment is Needed
Advice for Caregivers
Family members and caregivers play an important role in supporting patients at the start of treatment, and Dr. Dunleavy says checking in often, especially at the start, is key.
“I think as caregivers, checking in with them more frequently at the very beginning and getting a sense of how they’re doing and what their needs are” is important, he says. “I think it’s better to check in more than less. Even if you check in too much, that’s okay, as opposed to checking in less.”
He notes that some patients have a genuinely difficult time right after starting treatment, so having more support available is generally the safer approach. As patients settle into treatment and begin to feel better — which most do after the first few weeks — caregiving can gradually be scaled back based on how the patient is doing.
The Takeaway for Patients
Whether a patient is starting a BTK inhibitor or a fixed-duration combination regimen, the pattern Dr. Dunleavy describes is consistent: a more intensive adjustment period in the first several weeks, followed by a much steadier course.
Planning ahead by arranging support at work, lining up caregivers, and knowing what symptoms to expect can make that initial stretch considerably easier to manage.
Questions To Ask Your Doctor
- What symptoms and side effects should I look out for during the first few weeks of treatment?
- How often will I be monitored?
- What are my options if side effects become too difficult?
- What should I let my caregiver know beforehand?
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