Consensus Panel 6 (CP6) of the 11th International Workshop on Waldenström's Macroglobulinemia (IWWM-11) was tasked with reviewing the state of the art for diagnosis, prognosis, and therapy of AL amyloidosis associated with Waldenström macroglobulinemia (WM). Their report is available here.
Dr. Shayna Sarosiek of Dana-Farber Cancer Institute provided an update on Bing-Neel. This presentation was given to two IWMF support group meetings in April 2023. You can view it here. From IWMF Bing-Neel Co-Leader & Lifeline Volunteer, Julie Davidson: "The Bing-Neel Support Group just had our Spring meeting. We featured a wonderfully informative video by Dr. Shayna Sarosiek, senior physician at the Dana-Farber Cancer Institute’s Bing Center for Waldenstrom’s Macroglobulinemia. To be included on the group mailing list, or just to talk to someone about Bing-Neel Syndrome, contact Julie Davidson, IWMF Lifeline Volunteer for Bing-Neel at jefdavidson@icloud.com.
Consensus Panel 7 (CP7) of the 11th International Workshop on WM was convened to examine the current generation of completed and ongoing clinical trials involving novel agents, consider updated data on WM genomics, and make recommendations on the design and prioritization of future clinical trials. Their report is available here.
Consensus Panel 5 (CP5) of the 11th International Workshop on Waldenstrom's Macroglobulinemia (IWWM-11; held in October 2022) was tasked with reviewing the current data on the coronavirus disease-2019 (COVID-19) prophylaxis and management in patients with Waldenstrom's Macroglobulinemia (WM). Their report is available here.
Consensus Panel 3 (CP3) of the 11th International Workshop on Waldenström's Macroglobulinemia (IWWM-11) was tasked with reviewing the current molecular necessities and best way to access the minimum data required for a correct diagnosis and monitoring. Their report is available here.
The Consensus Panel 2 (CP2) of the 11th International Workshop on Waldenström's Macroglobulinemia (IWWM-11) has reviewed and incorporated current data to update the recommendations for treatment approaches in patients with relapsed or refractory WM (RRWM). Their report is available here.
Consensus Panel 1 (CP1) of the 11th International Workshop on Waldenstrom's Macroglobulinemia (IWWM-11) was tasked with updating guidelines for the management of symptomatic, treatment-naïve patients with WM. Their report is available here.
The IWMF has recently announced its first-ever financial assistance program, to assist those seeking second opinions with travel and lodging costs. According to their flyer, "in many cases, residents from outside the U.S. may be eligible". The WMFC has no further information on what opportunities this might bring for Canadians seeking second opinions, whether from elsewhere within Canada, or from the U.S. For more information, the flyer is accessible at this link. To quote from the IWMF's announcement: Over the past year, we have been collaborating with The National Organization for Rare Disorders (NORD) on a second opinion financial assistance [...]
On March 20th, 2023, we had an extremely thorough walk-through of questions and concerns one should think about when considering a second opinion. Catherine Caule, a patient advocate and community volunteer in Ottawa, presented her well-researched guidelines for navigating second opinions. Can I get one; when would I get one; and how and where would I get one. A "must view" for anyone considering a second opinion! You can see it on the WMFC YouTube channel at https://youtu.be/o-CPouLseQ4.
Two clinical trials are available for WM patients at various sites across Canada: https://clinicaltrials.gov/ct2/show/NCT04624906: Treatment naive patients; Bendamustine + Rituximab, plus one year of Acalabrutinib https://clinicaltrials.gov/ct2/show/NCT04728893: R/R patients; Nemtabrutinib (a non-covalent BTK inhibitor)
