Welcome to the September edition of the Mantle Cell Lymphoma Alliance newsletter! This September we recognized Blood Cancer Awareness Month, and MCLA worked throughout the month to raise awareness of mantle cell lymphoma and amplify the voices of those affected by it. One highlight was our fundraising campaign by Board members Kris Tuchek and Karen Holden, which received well over 100 individual donations and is featured in this newsletter.
Behind the scenes, we've also been busy advancing discussions with industry partners and creating new ways for patients and caregivers to connect. We plan to continue our monthly Voices meetups, with daytime and evening options, as a place to share experiences, tell us what's missing, hear what MCLA is working on, and help shape our priorities. We're also developing MCLA Connections, beginning with a virtual gathering for people newly diagnosed with MCL and longer-term patients willing to share their experiences.
In this issue, you'll find a trial update in our Research Corner, a new patient profile, the story behind the "Two Sisters, One Mission" fundraising campaign, and a look ahead at events of interest in the coming months.
We hope you enjoy the September newsletter and, as always, thank you for being part of the MCLA community.
A September to Remember: Together, We Made MCL Seen!
September was an extraordinary month for the Mantle Cell Lymphoma Alliance. Throughout Blood Cancer Awareness Month and on World Lymphoma Awareness Day, our community came together to raise awareness, share stories, and put faces to a disease that too often goes unseen.
Your response was remarkable. Our Two Sisters, One Mission fundraising campaign exceeded its goal, with generous matching donations helping make every gift go further. We also celebrated MCLA co-founder Kris's birthday and Rare Cancer Day with $23 on the 23rd, showing that every contribution, large or small, matters.
To everyone who shared their story, donated, introduced someone to MCLA, or helped spread the word: thank you. You didn't just help us raise funds. You helped us make MCL seen.
Turning Your Generosity into Action
One of the items that will be funded by these gifts is MCLA Compass, our new patient resource navigation tool, designed to help patients and caregivers find trustworthy information, support, and resources throughout their MCL journey. We're excited to tell you much more about Compass soon!
The Momentum Continues
September was an important milestone, but we're only getting started. We'll continue sharing the faces and voices of our MCL community, building connections, and turning your generosity into meaningful resources and investments in research for patients and caregivers.
Follow our Facebook page for more stories, updates on Compass, and opportunities to get involved.
To everyone who helped make September a success, thank you. Together, we're making MCL seen — and there are so many more stories still to tell.
Follow us on Facebook →Patient Profile: Ruth
I never imagined I would be writing about an experience like this.
Over the past few weeks, I've gone through multiple blood tests, a PET scan, and a bone marrow biopsy. I'm still waiting for the final answer, and on September 9, I'm supposed to finally get my diagnosis.
The strange part is that I don't feel sick.
I'm still active. I exercise six days a week. I continue doing the things I enjoy and living my life. From the outside, everything probably looks completely normal.
But inside, things feel very different.
Ruth shared this story with MCLA while she was still waiting for her final diagnosis.
Read Ruth's story →Long-Term Study Results Reinforce Benefit of Acalabrutinib in First-Line MCL Treatment
At the September 9–12 Society of Hematologic Oncology (SOHO) Annual Meeting, researchers presented updated results from the large phase 3 ECHO trial showing continued benefit from adding the BTK inhibitor acalabrutinib (Calquence) to bendamustine and rituximab (BR) as an initial treatment for older adults with MCL.
After approximately five years of follow-up, patients receiving acalabrutinib plus BR went a median of 72.5 months without their cancer progressing, compared with 47.8 months for patients receiving BR alone — an improvement of nearly two years for the median period that patients lived without their lymphoma worsening.
Article reviewed by Annie Xiao, MD, City of Hope, Duarte, CA.
Learn more →Ask the Expert
Why can blood and immune cell counts remain low after cancer treatment, and how long can recovery take?
Chemotherapy and other cancer treatments can damage or suppress rapidly dividing cells in the bone marrow. Bone marrow is the soft, spongy tissue inside certain bones where the body continually makes red blood cells, white blood cells, and platelets. Treatment can also deplete mature immune cells already circulating in the body and increase the risk for infections.
After treatment ends, the bone marrow and immune system need time to rebuild, and different cells recover at different rates. Some counts improve within weeks or months, while other cell types, including certain types of T-cells (a type of white blood cell that fights disease), B-cells, and immunoglobulin levels (antibodies that help the body fight infections), may take even longer. How far counts fall and how quickly these cells and the immune system recover can depend on the drugs and doses used, the length and intensity of treatment, prior anti-cancer treatments, whether lymphoma itself affected the bone marrow, and one's age and overall health.
Recovery is also not an all-or-nothing process. One type of blood cell may return to normal while another remains low, and even different types of T cells can recover at different rates. Some counts can remain below their pre-treatment level for an extended period, and in some cases may not fully return to their previous level. For this reason, doctors generally look not only at whether an individual result is marked "low," but also at how blood counts are changing over time. Doctors can also use temporary supportive treatments, such as intravenous immunoglobulin (IVIG) to raise antibody levels and pegfilgrastim to increase infection-fighting neutrophils. Patients with low blood or immune cell counts should talk with their doctor about whether these or other treatments, such as medications to prevent infections during immune system impairment, may be appropriate.
Answer reviewed by Dr. Michael E. Williams, MD, ScM, FACP, University of Virginia.
Lymphoma Research Foundation Educational Forum
Date: Oct. 10–11, 2026
Two-day virtual conference for patients with a special breakout session for MCL.
Lymphoma Research Foundation Educational Forum →Lymphoma Canada 10th Annual National Patient Conference
Date: Oct. 14–16, 2026
Three-day virtual conference for patients with a special breakout session for MCL (focusing on Canadian practice).
Lymphoma Canada 2026 →"MCL: The Journey" Facebook Support Group Lecture Series
Date: October 30, 10:00–11:00 a.m. EST
Erlene Seymour, MD, Medical Director Hematology, US Medical Affairs, BeOne Medicines, speaking to the Development of Clinical Trials in MCL.
Link: Pending
Warmly, The Mantle Cell Lymphoma Alliance
MCLA is grateful for the financial support of our first Founding Partner:
