The Waldenstrom’s Weekly

December 12, 2021

Volume 1, Issue 35

The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is dedicated to supporting and educating everyone affected by WM while advancing the search for a cure. The IWMF provides access to The Waldenstrom’s Weekly as a free service to WM community members to share WM related news and events. For more information, please contact


WhiMSICAL Registry Patient-Entered Data Presented at ASH 2021 Conference!

2021 WMUK Patient-Doctor Summit
Congratulations to the over 550 patients worldwide who have entered their WM data into the WhiMSICAL Registry, which was presented this month at the annual American Society of Hematology conference, attended by over 25,000 clinicians and scientists from around the world. Your data has provided new insights into the effectiveness of bendamustine rituximab (BR) compared to BTK inhibitors like ibrutinib. The 5-minute presentation can be viewed HERE, and the poster with the data analysis is HERE. A summary of the findings includes:
  • 558 patients from 20 countries entered data into WhiMSICAL
  • When used as 1st line treatment, BR appeared to be the most effective
  • When used in the relapsed or refractory setting (2nd line and beyond), BTK inhibitors were superior, with the median time to the next therapy almost 3 years longer for BTK inhibitors (76 months vs 44 months for BR, p=0.02)
  • Patients on BTK inhibitors reported better quality of life than patients who had other treatments
Please continue to contribute your valuable data to the WhiMSICAL registry and encourage other WMers to join at and help advance WM research.
For any support with participation or further information on WhiMSICAL, click HERE, or contact

NCCN Guidelines Update

Each year, the US National Comprehensive Cancer Network (NCCN) publishes updated treatment guidelines for various forms of cancer, including Waldenstrom’s macroglobulinemia (WM). They provide two versions – one for patients, and one for clinical practitioners.
On December 7, 2021, an important update was made to the WM treatment guidelines for clinical practitioners. NCCN has now included venetoclax as a treatment option for previously treated patients with WM. It is anticipated that the patient version of the guidelines will be updated soon to also reflect this new addition.


Shop while Supporting the IWMF

Going shopping this holiday season? Consider supporting the IWMF at the same time with purchases made through Amazon.Smile
A percentage of all purchases go towards supporting the vital work of the IWMF (every time you shop!). Learn more by clicking here.


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