Choosing CLL Treatment
If you’ve been diagnosed with chronic lymphocytic leukemia or small lymphocytic lymphoma (CLL/SLL), you have more treatment options than ever. But more options can make the decision process complex and overwhelming — both when you’re diagnosed with CLL/SLL and later, if treatment is needed.
“There are multiple new, excellent, targeted, non-chemotherapy treatment options for people diagnosed with CLL/SLL, but with so many good therapeutic options, treatment selection has become more complicated,” says Jacob Soumerai, MD, a hematologist-oncologist and CLL expert at Mass General Cancer Center.
“This becomes a much more nuanced and personalized series of discussions over time. We need to engage our patients in these discussions, so they understand the rationale behind each treatment decision, and to ensure that they have a voice in how we approach their care.”
Dr. Soumerai recently teamed up with the Lymphoma Research Foundation (LRF) and other experts across the nation to help. They created recommendations and tools to guide patients and local oncologists and hematologists through the process. They hope the resources will help patients everywhere receive the newest, most effective treatments for the disease — rather than the old standard of chemotherapy, which should no longer be used in CLL/SLL.
What is CLL/SLL?
CLL and SLL are essentially the same disease. This is a cancer of a type of white blood cell called a B lymphocyte (or B cell) in the bloodstream and bone marrow (a spongy material in the center of bones), which may also be found in the lymph nodes, spleen, and elsewhere.
CLL/SLL usually grows slowly, so people may live with the disease for years or decades without symptoms – 9 in 10 patients are without any symptoms when they’re first diagnosed. With modern therapies, most people with CLL/SLL live out their natural lives with the disease, although over time most require some therapy to control their CLL/SLL.
New options in treatment for CLL/SLL
Traditionally, CLL has been treated with chemotherapy, which is often effective. But it also causes many distressing side effects because it kills healthy cells in addition to cancer cells, and chemotherapy can cause leukemias. Newer targeted treatments are more effective with longer remissions and improved survival, and are also safer than traditional chemotherapy.
“Over the past decade or so, we’ve seen dramatic improvements in treatment options for patients with CLL. We previously used traditional chemotherapies, but these should no longer be used in CLL given the development of safer, more effective, and biologically targeted therapies,” Dr. Soumerai explains. “We’ve seen a significant reduction in the use of traditional chemotherapy, but we still see patients who are receiving chemotherapy — as many as 1 in 6 patients nationally — despite existing guidelines and recommendations.”
The new treatments include:
Bruton tyrosine kinase (BTK) inhibitors
These drugs work by binding to a protein called BTK, which is found on some types of cancer cells. Blocking BTK can stop cancer cells from growing. Examples include ibrutinib, acalabrutinib, zanubrutinib, and pirtobrutinib.
B-cell lymphoma 2 (BCL-2) inhibitors
These agents target a different type of protein, Bcl-2, to stop cancer cells from growing. One example in CLL is venetoclax.
Next-generation monoclonal antibody therapy
These drugs are a type of immunotherapy. They prompt the immune system to attack cancer. One example is obinutuzumab.
CAR T-cell therapy
This involves reengineering a patient’s own immune cells (T cells) such that they can target and kill cancer cells. One example in CLL is lisocabtagene maraleucel.
How to make treatment decisions
Oncologists and hematologists in local communities treat most people with CLL/SLL. But unlike subspecialists who only focus on CLL, they also care for patients with a wide variety of other cancer types. In a disease like CLL, where there are many good treatment options, it can be challenging to make personalized recommendations.
“It can be difficult to wade through all of the data and sort out what the best treatment option is for each individual patient and at each line of therapy,” Dr. Soumerai says.
He worked with the LRF to develop a comprehensive, practical guide that other health care providers can use to make complex CLL treatment recommendations and decisions. The “Consensus Recommendations from the 2024 Lymphoma Research Foundation Workshop on Treatment Selection and Sequencing in CLL or SLL” is now published in Blood Advances.
The LRF also has created patient education materials based on this work, which will soon be available in English and Spanish on their website. The resources encourage patients and health care providers to consider the following factors:
Symptoms and effects of the CLL
Other health conditions and other medications the patient is taking
Results of molecular and genetic testing
Patient preferences, including how each treatment could affect daily life
Potential benefits, risks, side effects of treatments, as well as how long treatment takes
“This document provides clear guidance on how to assess these factors and how to think about which factors should drive the decision-making for an individual patient with CLL,” Dr. Soumerai says.
Support from a CLL specialist and the LRF
Dr. Soumerai also encourages patients with CLL/SLL to consult with a CLL expert at key decision points — for example, when they are diagnosed or if a treatment is needed. He also recommends patients with CLL/SLL connect with organizations like the LRF, which help educate patients and providers. These organizations also support scientific research to develop the next generation of therapies for CLL.
Your local oncologist still leads your care. But a specialist can help you and your team come to a personalized treatment decision for the best possible outcome. A specialist also may have access to additional specialized testing. This may be helpful in your care — either to select treatment or to measure response to treatment. A specialist also may be able to recommend a clinical trial of the next generation of CLL/SLL treatment.
Working together with your providers, you can choose the best treatment option for you.
