August 2026
Newsletter

Patient Profile: Cathy Booker

In May 2021, a routine mammogram unexpectedly changed the course of my life when it revealed an enlarged lymph node. I initially thought little of it — I had recently received a COVID vaccine, and I had experienced an enlarged lymph node years before that turned out to be nothing. Thankfully, the radiologist wasn't willing to make that assumption and insisted on a biopsy.

While waiting for the results, I developed excruciating abdominal pain and a dangerously high fever. I ended up in the ER and was diagnosed with severe diverticulitis, a tear in my colon, and sepsis. While lying in the hospital, frightened that I might not survive the infection, the surgeon who had performed my biopsy came in with another piece of news: the biopsy showed mantle cell lymphoma.

Ask the Expert

"I've heard that mantle cell lymphoma can change when it relapses. If my disease comes back after treatment, should I ask my doctor to repeat a biopsy or other tests? What disease characteristics should be re-evaluated, and how might those results affect my treatment options?"

Yes — repeat testing at relapse is worth asking for

Mantle cell lymphoma isn't always the same disease the second time around. Over time and after treatment, the lymphoma cells can change their genetics and behavior — a process sometimes called "clonal evolution." This is why most experts recommend a repeat biopsy when disease returns, rather than assuming it looks the same as it did at diagnosis. It's reasonable to ask your doctor: "Since my lymphoma came back, should we take a fresh tissue sample to see if it has changed?" A biopsy also helps confirm that what's growing back really is MCL and not a different condition, and it gives the medical team updated information to plan the next step of treatment rather than relying on results that may be years old.

What gets re-checked, and why it changes your options

At relapse, doctors typically look again at a handful of key features: the Ki-67 proliferation index (a measure of how fast the disease is growing — higher numbers generally mean more aggressive disease), whether the cells have changed shape into a "blastoid" or "pleomorphic" pattern (a sign of more aggressive transformation), and — especially important — whether the cells carry a TP53 gene mutation. TP53 acts like a built-in "quality control" gene that normally helps the body destroy damaged cells; when it's mutated, standard chemotherapy tends to work poorly, so doctors usually steer away from intensive chemo (including stem cell transplant) and instead favor targeted, non-chemotherapy options such as BTK inhibitors (like acalabrutinib or zanubrutinib), venetoclax (often combined with BTK inhibitors), or CAR T-cell therapy. Imaging (CT or PET/CT) and blood tests like LDH are also repeated to see how widespread the relapse is. Together, these updated results — not just the original diagnosis — are what your care team uses to match you with the most appropriate next treatment, and asking for them upfront can help you and your doctor have a more informed conversation about your options, including clinical trials.

Answer reviewed by Dr. Michael E. Williams, MD, ScM, FACP, University of Virginia.

Study Finds Gaps in Physician Skills for Managing Newer MCL Treatments

As treatment options for MCL have expanded, a new international study suggests that physician knowledge and experience in managing MCL have not always kept pace.

Researchers found notable gaps in physicians' ability to manage newer treatments — particularly CAR T-cell therapy — with some of the largest gaps reported outside academic cancer centers. The findings highlight opportunities to strengthen knowledge of newer MCL treatments in community health care settings, while also improving how patients are involved in treatment decisions.

MCLA Joins the Lymphoma Coalition

The Mantle Cell Lymphoma Alliance is honored to announce that we are now an Associate Member of the Lymphoma Coalition, a global network of more than 90 patient organizations in over 55 countries united by a shared vision of equity in lymphoma outcomes.

By joining the Coalition, MCLA connects the mantle cell lymphoma community to worldwide efforts in patient-centered information, patient advocacy, and initiatives such as the biennial Global Patient Survey and World Lymphoma Awareness Day. Together, we're working to ensure MCL patients and caregivers everywhere are seen, heard, and supported.

Developing New Treatments for Lymphoma and CLL: The Role of Clinical Trials and Patient Advocacy

Date: September 1, 2026
Hosted by: Lymphoma Research Foundation (LRF)

Dr. Jason Westin of MD Anderson and patient advocate Debbie Denardi will discuss how research, clinical trials, and patient advocacy help shape the development of new lymphoma and CLL treatments.

10th Annual National Patient Conference on Lymphoma & CLL

Date: October 14–16, 2026
Hosted by: Lymphoma Canada

This free, virtual conference for patients, caregivers, and healthcare professionals will feature leading experts sharing the latest information on lymphoma and CLL through live presentations and interactive sessions.

Educational Forum on Lymphoma

Date: October 10–11, 2026
Hosted by: Lymphoma Research Foundation (LRF)

This free, virtual forum for patients, survivors, and care partners will cover lymphoma and CLL treatment, clinical trials, research advances, and practical approaches to managing the disease.