Living With CLL: Symptoms To Look Out For & What To Expect When Treatment Begins

Dr. Park encourages patients to become familiar with what their lymph nodes normally feel like by checking their neck and underarms once or twice a week. Because lymph nodes can temporarily swell due to an infection or inflammation, she recommends contacting your hematologist if swelling lasts for two weeks or longer instead of resolving on its own.

In addition to persistent swollen lymph nodes, Dr. Park says patients should report “drenching night sweats” lasting two weeks or longer, unexplained fatigue, or other new symptoms that could signal the disease is progressing.

Hope With BTK Inhibitors

If these symptoms develop, your hematologist can determine whether they’re related to CLL and whether it’s time to begin treatment. For many people who require therapy, a typer of targeted therapy known as BTK inhibitors are among the treatments that have transformed CLL care.

Although BTK inhibitors are a common first-line option, there isn’t a single “best” choice for everyone. Some are taken continuously as long as they continue to work, while other first-line treatment approaches are given for a fixed period of time.

Dr. Park says choosing the right therapy depends on much more than the leukemia itself.

When recommending treatment, doctors may consider:

• Whether a patient prefers continuous treatment or a fixed-duration regimen
• The patient’s age and overall health
• Potential side effects
• How often they can travel to the clinic
• Personal preferences and lifestyle

“A lot of it is looking at when the patient was diagnosed, the age of the patient, and logistically how often can they come to the clinic,” Dr. Park explains. “Those are the biggest factors … as far as what kind of treatment we choose for that patient.”

For some people, taking a daily pill for as long as it continues to work is the most convenient approach. Others may prefer a fixed-duration treatment that ends after a set period, even if it involves more frequent clinic visits or infusions.

Once treatment begins, many patients wonder what they can expect while taking a BTK inhibitor.

What Can I Expect From Treatment?

Dr. Park says experiences vary, and some people require dose adjustments or a switch to a different BTK inhibitor to find the best fit.

“I think some patients either do really well, they just have no issue,” she says. “Or sometimes it’s just a little bit of trial and error figuring out that dose that really works for them.”

According to Dr. Park, some of the more common side effects of BTK inhibitors are:

• Fatigue
• Headaches
• Bruising or bleeding (particularly with older BTK inhibitors such as ibrutinib)

Many of these side effects can be managed without stopping treatment altogether. If they become difficult to manage, doctors can often lower the dose or switch to another BTK inhibitor with a different side-effect profile.

Because many people live with CLL for years — or even decades — finding a treatment they can tolerate is an important part of maintaining their quality of life.

With more targeted therapies available than ever before, Dr. Park says patients have reason to feel hopeful about the future of CLL treatment.

“We have options for you to continue and increase your longevity. It’s not the end just because you have a diagnosis,” she says.

Questions To Ask Your Doctor

• How can I monitor for potential signs of disease progression at home?
• What can I expect when beginning treatment?
• Is there anything that I can do to reduce treatment side effects?
• What if I am having trouble managing targeted therapy?

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