International Waldenstrom’s Macroglobulinemia Foundation



The worldwide coronavirus outbreak, declared a pandemic by the World Health Organization (WHO) on Wednesday, March 11, continues to be of great concern to WM patients and caregivers around the world.

·     A message from Dr. Steve Treon of DFCI (Dana Farber Cancer Institute) and adviser to the IWMF:

“I would like to share with you and the IWMF membership the paper which was just published in BLOOD as a FIRST EDITION. It describes the course of 6 WM patients on ibrutinib who contracted COVID-19. Please feel free to share with the membership. We are beginning two prospective multicenter trials in COVID-19 patients, one with ibrutinib and the other with zanubrutinib. Much of what we have learned about the Toll-receptor/MYD88 pathway in WM enabled us to re-purpose much of this knowledge to COVID-19 that exploits this pathway for producing lung injury. The IWMF enabled much of this learning, and we are grateful that the findings from those studies could be re-purposed against COVID-19.”

·     Please view the publication in BLOOD by clicking here(link is external). If you have any questions about the publication, please send them to Chris Patterson, Administrative Director for WM, Dana Farber Cancer Institute, Harvard Medical School ([email protected](link sends e-mail)) who will forward them along to Drs. Treon and Castillo.

·     In line with BTK inhibitors being considered to treat serious cases of coronavirus infection, zanubrutinib (Brukinsa) is now being considered in the mix of possible treatments. Click here (link is external)to read the Forbes article, which includes extensive mention of Dr. Treon and his work with WM patients, leading now to a Phase 2 trial in which he will be the principal investigator. We caution that BTK inhibitors are being considered to treat the most seriously ill coronavirus patients. They are not being suggested as prophylactic treatment to prevent infection, so people should not rush out and ask their doctors for zanubrutinib or other BTK inhibitors for this purpose.


·     On April 16 LLS (Leukemia & Lymphoma Society) hosted a special webinar, “Calming Anxiety and Fear: Coronavirus (COVID-19),” with Julie Larson, a Psychotherapist and Speaker-Educator. Please click here (link is external)for a listen only replay.

·     If you have questions specific to your personal health situation, please do not hesitate to contact your primary care physician and/or your blood cancer specialist.

·     As we all strive to self-impose quarantine measures and social distancing practices, we should remember that the IWMF does provide “virtual” support services, such as the online discussion list (IWMF Connect); Facebook (IWMF Official page and a private closed support group); and the phone/email-based Lifeline, where a fellow WMer is just a phone call or email away. Should you need social or emotional support, feel free to continue to reach out to the IWMF worldwide community and take advantage of these resources. NOTE: IWMF Affiliates in several countries also have country/region-specific Facebook pages and discussion groups – please visit the IWMF International Affiliates web page for further information (see list here).

·     Many in-person programs, partner meetings and conferences have been cancelled or rescheduled. Be sure to visit the IWMF Events Calendar by clicking here to learn about current events and new online patient education programs being offered on a variety of topics of interest.

In this time of global crisis, the IWMF wishes to extend its concern and support to everyone around the world who is affected by the coronavirus outbreak. Our hope continues to be for a speedy and effective resolution.

Carl Harrington 
IWMF Chair of the Board

Newton Guerin
IWMF President & CEO


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