Receiving a diagnosis of chronic lymphocytic leukemia (CLL) may feel overwhelming, and it may be hard to understand what comes next. You’ll have to work with your healthcare team to establish a treatment plan that’s right for you.
Most people with CLL interact with a variety of healthcare professionals, including hematologists and medical oncologists. Depending on the type of therapy you receive, you may also work with a radiation oncologist or surgical oncologist.
As your healthcare team creates your treatment plan, it’s important to have open and honest discussions about your options. This can help you stay actively involved in decisions about the course of your treatment.
Here are six questions about CLL treatment to help you start discussing your options with your doctor.
The type of treatment used for CLL will depend on a variety of factors, including the disease stage and the symptoms you’re experiencing.
In most cases, people with CLL who require treatment will start medication to manage the disease. Healthcare professionals use a variety of targeted agents and chemotherapy drugs to treat CLL. These treatments may be used alone or in combination.
Some of the targeted treatment regimens most commonly used to treat CLL are:
- acalabrutinib (Calquence), with or without obinutuzumab (Gazyva)
- ibrutinib (Imbruvica)
- venetoclax (Venclexta) plus obinutuzumab (Gazyva)
Some other medications may also be used in CLL treatment combinations, including rituximab (Rituxan) and chemotherapy drugs such as bendamustine, fludarabine, pentostatin, or cyclophosphamide.
In general, targeted treatment options are preferred over chemotherapy, particularly for people who have not yet received any treatment for their CLL. This type of therapy works by specifically targeting cancer cells and the underlying processes that lead to disease. This helps minimize adverse effects.
Other types of treatment may also be used, depending on the potential complications that may occur. For example, radiation therapy or surgery may be used if only a specific part of the body is affected, such as the spleen or lymph nodes.
Some people may also require a procedure called leukapheresis, which is used to remove cells from the blood if it becomes too thick.
If a person’s CLL is very likely to progress, their doctor may also refer them for a possible stem cell transplant. Both leukapheresis and stem cell transplant will likely be used in combination with medications.
The choice of treatment in CLL depends on a variety of factors that you and your doctor will weigh together. In addition to the safety and effectiveness of various medical options, your doctor may want to discuss personal factors that will affect your treatment experiences, including:
- Cancer features: The type of treatment you receive may depend on how far your cancer has progressed, as well as whether certain types of genetic mutations can be detected in cancer cells.
- Your underlying health: Age and other underlying conditions, such as kidney disease, can affect how you respond to treatment and influence the likelihood of treatment success.
- Your personal treatment goals: CLL most commonly affects older adults, and the median age at diagnosis is
70 years. This may influence people’s priorities for treatment. Some people may wish to extend their life as long as possible, while others may prioritize comfort over longevity.
When discussing treatment options, it’s also important to consider how treatment is administered and what support you may need.
While you can take medications such as acalabrutinib and ibrutinib by mouth at home, healthcare professionals need to administer others via injection or infusion at a clinic. For these types of treatments, it may be helpful to have a support person to provide transportation.
Depending on your symptoms and blood counts at diagnosis, your doctor may recommend a watch-and-wait approach.
This approach is also known as active surveillance. Your doctor will not start treatment until symptoms appear or change. They will perform regular medical examinations and blood work during this time to make sure the disease is remaining stable and to quickly catch any signs of progression.
The watch-and-wait approach is considered standard care for people who have minimal changes in their blood values and no other symptoms of disease.
This type of approach has been shown to avoid the negative impacts of other forms of early CLL treatment without affecting survival outcomes in people whose CLL is considered low risk for progression.
Infection is a primary concern for people undergoing CLL treatment.
CLL is a disease of white blood cells, which are responsible for many typical immune responses. Because CLL disrupts the activity of these cells and CLL treatments further target these processes, people with CLL often cannot produce antibodies and are therefore at increased risk for infection.
To help prevent infections, your doctor may recommend getting vaccinated for influenza, shingles, pneumococcal pneumonia, and COVID-19 before beginning treatment.
Low blood cell counts are also common because CLL and its treatments can affect cells in the bone marrow, leading to problems with bleeding and clotting. Supportive care is often available to manage these complications.
Other side effects will depend on the specific type of treatment used, so it’s important to discuss details with your doctor when weighing your options. Some other common side effects you might expect with CLL treatments are:
- digestive issues such as nausea, vomiting, diarrhea, or loss of appetite
- heart rhythm disorders
- tumor lysis syndrome, if you are treated with the medication venetoclax
- hair loss, if you are treated with chemotherapy
In general, a cure for CLL is very rare. One study published in 2016 reported that people who received the CLL treatment regimen of fludarabine, cyclophosphamide, and rituximab maintained long periods of disease remission lasting up to 12.8 years after treatment.
While these results are encouraging, this treatment regimen is not for everyone. The treatment combination is tough, and people who are 65 or older or have poor kidney function may have difficulty tolerating the regimen.
That’s not to say that outlooks aren’t promising with other treatment options. From 2012 to 2018, nearly
Relapse after initial treatment is common in CLL, with most people experiencing a recurrence of their disease within 5 years of starting treatment.
In many cases, your doctor may suggest a different regimen made up of the medications described above. Depending on how quickly your disease relapses, they may suggest a more aggressive form of treatment to help manage your disease.
Your doctor may also have information about clinical trials of treatments that have shown promise for CLL but are not yet approved for everyday use.
There are many treatment options for CLL, and no single treatment is right for everyone.
When discussing options with your healthcare team, it can help to come prepared with questions to make sure you get all the information you need to make an informed decision.