CLL expert Dr. Sheel Patel sheds light on exactly what to expect during “watch and wait” periods.

Chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL) are similar diseases. One occurs in the blood, and the other in the lymph nodes. They’re both diseases that have varied outcomes, depending on how aggressive the disease is, mostly dependent on the characteristics of the disease itself.

Some people with CLL or SLL can have a typical, expected life span without symptoms, and there may be no benefit to offering treatment because the medication may not improve their quality of life or extend their life span. The benefit of watching and waiting is that you don’t have to endure the potential side effects of treatment.

The “watch and wait” period isn’t a fixed or predetermined time. We get lab work every 3 months with a physical exam. If there are no signs of aggressive CLL activity after the initial year, you can follow up less frequently if desired.

We would stop the “watch and wait” period and start treatment if the CLL disease starts causing symptoms, uncomfortable swelling of lymph nodes or spleen, or if there’s anemia or thrombocytopenia (a decline in blood count).

The most common symptoms of CLL are significant fatigue, night sweats once a month, unexplained fevers for 2 weeks, or unintentional weight loss of more than 10% of body weight. If any of these symptoms occur, contact your doctor about further testing.

If you start to experience the symptoms above, avoid close physical contact with anyone who’s sick, as you may be more likely to get infections, and contact your doctor about further testing.

Contacting your doctor at the very first sign of these symptoms may not always be necessary, as symptoms of viral infections can mimic the symptoms of CLL. However, if symptoms last a long time, definitely contact your physician.

The “watch and wait” period generally has no lifestyle limitations. Try to avoid close physical contact with people who are sick and incorporate some lifestyle changes into your routine, including exercising regularly and eating a balanced diet. Discuss standard vaccinations with your doctor.

People with “active disease” usually need treatment. Treatment for CLL commonly includes medications in pill or intravenous (IV) form. This is called a chemoimmunotherapy combination. The pills can vary from BTK inhibitors (ibrutinib [Imbruvica], acalabrutinib [Calquence], zanubrutinib [Brukinsa]) to BCL2 inhibitors (venetoclax [Venclexta]). IV medication is usually obinutuzumab (Gazyva) or rituximab (Rituxan).

Traditional chemotherapy has fallen out of favor in many CLL cases. But certain factors might make sense for traditional chemotherapy use, such as the likelihood of the cancer responding to chemotherapy (the IgHV gene’s mutation status) and the person’s age.

Once you receive a diagnosis of CLL or SLL, many oncologists may recommend that you get lab testing frequently in the first year to determine whether the cancer is aggressive or slow to develop. This can determine how often you may need oncologist checkups in the future. Following this schedule is important in determining when a disease may require treatment.

Since CLL or SLL may have genetic causes, there may not be many drastic changes you can make to change the course of the progression of this disease. However, living a healthy lifestyle, including eliminating or reducing processed and sugar-based foods and exercising regularly, can positively affect your health.

CLL or SLL may not need to be a life changing diagnosis, especially in the “wait and watch” period. What’s more, people can try not to identify themselves solely by their disease or medical condition, as increased stress levels can lead to depression and other negative health impacts all around.

Caregivers can be outlets for discussion and support when people are going through the various stages of the disease, experiencing side effects of treatment, or just having uncertainty about the future.

Dr. Sheel Patel is an ABMS board certified physician in hematology, oncology, and internal medicine. Dr. Patel is a practicing physician at the Orlando VA Medical Center in Florida. He specializes in genitourinary oncology.