Published on May 13, 2021
New NCCN Guidelines Inform MCL Decision-Making
The National Comprehensive Cancer Network (NCCN) has published updated patient guidelines for mantle cell lymphoma (MCL). The NCCN Guidelines for Patients® are based on the clinical practice guidelines for physicians but are written in an easy-to-understand format for patients and care partners.
“The guidelines provide a step-by-step guide of mantle cell lymphoma care from diagnosis to treatment,” Elizabeth Budde, MD, PhD, told Patient Power. “Patients who are either newly diagnosed or have recurrent mantle cell lymphoma can use these guidelines.”
Dr. Budde is a hematologist-oncologist and associate professor at City of Hope Comprehensive Cancer Center in Duarte, California. She is also a member of the NCCN expert panel that develops the guidelines.
“Management of mantle cell lymphoma has been evolving rapidly with the addition of new drugs, new combination therapies, and new diagnostic testing,” Dr. Budde said. “The guidelines are updated frequently to reflect new changes and provide the most current information.”
In the updated version of the guidelines, treatment options for induction therapy as well as second-line and subsequent therapy have been revised, based on updates to the clinical practice guidelines, which are continuously updated as new research emerges. The combination of bendamustine (Bendeka and Treanda) and rituximab (Rituxan), followed by rituximab and high-dose cytarabine was added as one of the preferred regimens for induction therapy in patients who are candidates for aggressive therapy (induction is the first phase of therapy for most patients with MCL). By contrast, the combination of bendamustine, bortezomib (Velcade), and rituximab is no longer listed as an option for second-line and subsequent therapy.
Other key updates include:
- Expanded information on the pathology and development of MCL
- Updated details on the diagnostic tests for MCL
- The single treatment chapter was divided into two revised and expanded chapters — one on early MCL and one on advanced MCL
- A new section was added on clinical trials, which can be an important treatment strategy for people with MCL
What is Mantle Cell Lymphoma?
Mantle cell lymphoma is a rare and aggressive subtype of non-Hodgkin lymphoma (NHL). It is diagnosed in one out of every 200,000 people in the United States each year. It is more common in men than in women, and the median age range at diagnosis is 60-70 years old.
Larry Fagan, who was diagnosed with MCL in 2012, moderates an online support group to help other patients find the information and resources they need. He shared the updated guidelines with his network.
“The NCCN patient guidelines on MCL has the information that everyone recently diagnosed needs to understand,” Fagan said. “It is also useful for patients already in treatment since the document is updated every two years as the physician guidelines are revised.”
Fagan encourages patients to stay on top of the latest research and to get a second opinion when possible.
Shared Decision-Making in Cancer Care
Studying your disease and the available treatment options will help you make informed decisions about your health. You can glean information from support groups and organizations like the Leukemia & Lymphoma Society and Lymphoma Research Foundation. The NCCN patient guidelines are another trusted resource.
“The guidelines serve as a useful source for education,” Dr. Budde said. “We encourage patients to read through the guidelines and use the information as a starting point for discussions with their cancer doctors.”
In addition to doing research, here are three more ways to foster shared decision-making throughout your treatment journey:
- Write everything down. Questions, side effects, promising new treatments you read about — write down everything you want to discuss with your oncology team and bring a list to your appointments. This will help you make the most of your time together.
- Ask questions until you understand. If you ask a question and do not understand the answer, ask your doctor to explain it again. They may have misunderstood the question or not realized they used clinical words or jargon when responding. Ask as many times as it takes to understand the answer.
- Get a second opinion. Your doctor will recommend the treatment they believe is best for you. With rare lymphomas, however, there are often multiple treatment approaches. A second opinion will give you a broader picture of the MCL treatment options available.
To prepare for your next appointment, download the updated MCL guidelines: NCCN Guidelines for Patients®: B-Cell Lymphomas - Mantle Cell Lymphoma.
What is NCCN?
Founded in 1995, NCCN is a not-for-profit alliance of 31 leading cancer centers across the United States devoted to patient care, research, and education. The network includes City of Hope, The University of Texas MD Anderson Cancer Center, Memorial Sloan Kettering Cancer Center, Mayo Clinic Cancer Center, and other world-renowned institutions.
For more information, visit NCCN.org/patientguidelines.
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