HAIRY CELL LEUKEMIA FOUNDATION

An enlarged spleen is a common hairy cell leukemia (HCL) symptom. The HCL can cause abnormal or malignant B cells to collect, resulting in an enlarged spleen and discomfort for the patient. HCL affects the spleen, so patients may wonder why a splenectomy (surgical spleen removal) isn't used to treat the disease indefinitely. Removing the spleen does not cure HCL. Before investigators developed interferon, cladribine and other purine analogs in the late 1980s and early 1990s, a splenectomy was the only available treatment. However, doctors observed that while removing the spleen provided temporary relief and may have extended a patient's life span by a few years, it was not curative. Today, splenectomy is occasionally used when a patient's spleen is uncomfortably or dangerously large before chemotherapy or other treatment is administered. Removing the spleen requires surgery, which poses risks for the patient without curing the disease. We now know more about HCL, have seen the outstanding benefits of purine analogs for patients, and are developing non-chemotherapy and other treatment options for patients with HCL and HCLv. Removing the spleen is not usually the best option for a patient and does not treat the HCL indefinitely. This important question was discussed during our September 2024 HCL seminar held in Columbus, Ohio. We hope you will review the recording and transcript on our website. https://lnkd.in/gSXmqGqG

HCLF staff is attending the American Society of Hematology (ASH) conference this weekend in San Diego. While a rare disease like HCL can often get lost in such a large cancer conference, we’re thrilled that several HCL2025 grantees and their important work funded by patients within the HCLF are featured. It’s important to raise awareness about the HCL research and impact our foundation is making globally.

Dr. Reshmi Parameswaran, an HCL2025 grantee and associate professor at Case Western Reserve University, has published an article highlighting the exciting potential of BAFF CAR-T as a therapy for patients with Hairy Cell Leukemia Variant (HCLv). You can find the full article on our published research page: https://lnkd.in/epB6BiN We're thrilled to see progress and new data emerging from research funded via the HCL2025 initiative. Individual patients and families have contributed to this research effort; their support make new publications like this article possible.

Are you part of the HCL Patient Data Registry? We need you! You are the missing piece to advance our understanding of hairy cell leukemia further. Your journey with HCL will provide invaluable insights to researchers, ultimately leading to new drug development and improving patient care. The registry de-identifies and protects your data so you can join with confidence. To learn more and join the HCL Patient Data Registry, click the link and complete the online form. Registry staff will contact you.  https://lnkd.in/ebtHp45R Have you already joined the registry? We'd love to hear from you! Please share in the comments or message us. Why does HCL research matter to you? #HCLTogether #OurData #OurProgress

Today is our last HCL Variant community roundtable. If you or a loved one has HCLv, including the IGHV4-34 variant, please join us! 🗓️ Date: Today, Wednesday, December 4, 2024 🕰️ Time: 3 PM - 4 PM Eastern (12 PM - 1 PM Pacific, 2 PM - 3 PM Central) This is a safe space for individuals with the variant form of HCL and their families to connect. Register online to participate: https://lnkd.in/gsdUUnnw

This #GivingTuesday please think about the Hairy Cell Leukemia Foundation. Make a donation online and consider sharing this post on your social media to raise awareness. Your foundation is driven by dedicated staff, board members and volunteers, many of whom have a personal connection to HCL. Every program and research initiative we support is developed with real patients to make a positive, long-term impact for everyone with HCL or HCLv. Your generosity is greatly appreciated and makes a difference! https://lnkd.in/gwDK386N https://lnkd.in/eG_DbWzS

Tomorrow, December 2nd, join us for the final HCLF Women's Group roundtable of 2024! This is a great chance for all women impacted by HCL to connect, share experiences, and provide support in a friendly environment. The roundtable is moderated by HCLF staff and volunteers and your questions about diagnosis or treatment are welcome! HCLF Women’s Group Roundtable December 2, 2024 at 12:30 PM ET (11:30 AM CT | 9:30 AM PT) Link: https://lnkd.in/gMYPKmgN

🍂 Wishing everyone a safe and joyful Thanksgiving from the Hairy Cell Leukemia Foundation. 💚

Many people look forward to traveling this time of year. But what if you have a blood cancer, like hairy cell leukemia (HCL)? Are there travel tips you should consider? Before you embark on your journey, here are some questions to discuss with your healthcare team, courtesy of The University of Texas MD Anderson Cancer Center, an HCLF Center of Excellence. 👉 Check out their insights here: https://lnkd.in/gfkdSjQW

Join us in December for our Community Roundtables (the final two of the year)! Engage in empowering conversations with the Women's Group on December 2nd and explore insights about the HCL Variant on December 4th. These Zoom forums offer invaluable peer-to-peer support, moderated by dedicated HCLF staff and volunteers. We foster a respectful atmosphere to ensure everyone feels welcome. Let's connect and support each other! Sign-up below: https://lnkd.in/gJ5p-YUe