A CLL Diagnosis Doesn't Always Mean Treatment
- With chronic lymphocytic leukemia (CLL), doctors may use a “watch-and-wait” approach to monitor symptoms and disease progression before initiating treatment.
- “It can be such a slow-growing disease, you may not need treatment for quite a long time,” Dr. Alan Kerr, a malignant hematologist at Tampa General Hospital Cancer Institute, tells SurvivorNet.
- Between appointments, it is crucial to pay attention to any symptoms or changes you may be experiencing and report them immediately to your doctor.
- If disease progression is confirmed, it is important not to lose hope, as treatment for CLL has improved dramatically over the past decade. Among the most significant advances are BTK inhibitors, targeted therapies that block a protein CLL cells need to survive.
- BTK inhibitors, which can be taken at home in pill form, are a game-changing treatment method for CLL, as chemotherapy has become more phased out.
Determining whether a patient needs treatment is based on multiple factors, Dr. Alan Kerr, a malignant hematologist at Tampa General Hospital Cancer Institute, tells SurvivorNet.
Read MoreExpert Resources for CLL Patients
- The Workup For CLL: How Doctors Diagnose This Type of Blood Cancer
- CLL Treatment Decision Making — Exploring All Your Options To Find What’s Right For You
- Changing the Way CLL is Treated: What are BTK Inhibitors?
- ‘The Eye of the Tiger’ — Why Mindset and Lifestyle are So Important During Treatment for CLL
- CLL Treatment: The Side Effects to Expect & Why Reporting All New Symptoms is Crucial
‘Watchful Waiting’ & Monitoring For Symptoms
In between these “surveillance” appointments with your doctor, it is crucial to pay attention to any symptoms or changes you may be experiencing and report them immediately to your doctor.“Usually I’m seeing [my CLL patients] at least every three months and checking their labs, examining them, monitoring their symptoms, and making sure that I don’t see any progression of this disease. Because certainly if things change, I would like to get them on treatment as soon as possible,” Dr. Kerr stresses.
Dr. Kerr wants his patients, and all patients, to know that “you don’t have to wait three months until your next appointment. If you feel new symptoms, please give me a call and we can see you sooner,” he reiterates.
Signs that CLL may be progressing include:
- Enlarged lymph nodes
- Unexpected weight loss
- Extreme fatigue
- Night sweats
If a patient does experience changes and is confirmed to have disease progression, it is important not to lose hope, as there have been groundbreaking developments in this field.
“We’ve made great advances in the last 10 to 15 years,” Dr. Kerr says. “We’re really moving away from what we call cytotoxic chemotherapy. We don’t use that for CLL really anymore because we have better drugs.”
Targeted agents are now the preferred first-line treatment. “Often they’re oral therapies — it’s a pill you can take at home.”
“You can treat someone with CLL even in their 80s or 90s with some of these medications and they can be very effective,” Dr. Kerr adds.
What Happens If I Need Treatment?
For patients who need to begin treatment, whether after a diagnosis or some time after monitoring with the watch-and-wait approach, there are “two main things we look at,” Dr. Kerr says.
“One, are the characteristics of their CLL — we do specific genetic testing to look for certain mutations. There’s a mutation called p53, and we know that that usually correlates with a more aggressive disease. But we have a class of medications called BTK inhibitors that can work well in that population.”
Bruton tyrosine kinase inhibitors, also known as BTK inhibitors, block the enzyme BTK.
“Kinases are light switches,” Dr. Kerr says of these enzymes, which regulate many critical functions. “A kinase turns on and it sets a chain of events that helps that cell multiply and grow … so kinase inhibitors are flipping that switch off. You’re shutting down that cell growth and cell survival mechanism so that hopefully your CLL cells start to die off.”
Newer-Generation BTK Inhibitors
The first BTK inhibitor to come out was called Imbruvica or ibrutinib, Dr. Kerr explains.
“That was the medication that changed the game,” he says. “That data is really the reason why we don’t use chemotherapy for CLL anymore. However, there were some side effects from people who were on ibrutinib for a longer period of time.”
There are now newer generation BTK inhibitors, that may offer better side effect profiles, including:
- Zanubrutinib (Brukinsa)
- Acalabrutinib (Calquence)
“As far as picking between Brukinsa and Calquence, there’s no study where they compared the two drugs. We know both of them work well,” Dr. Kerr explains. “There’s really not a right or wrong answer when you’re picking between those two drugs. But in the frontline setting for someone who’s starting treatment, either one of those medications would be very good.”
Questions To Ask Your Doctor
- Why is “watch and wait” the best approach for me?
- Why don’t I need treatment right now?
- How often will I need blood tests and checkups?
- What are the benefits of delaying treatment?
- What symptoms could signal that it is time to start treatment?
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