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)
A summary of the 11th International Workshop on WM (iwWM) held October, 2022, has been published at https://link.springer.com/article/10.1007/s12254-023-00876-3. Click on the "Download PDF" box on the right.
Every two years, the International Workshop on WM (IWWM) brings together worldwide experts to share their latest understanding of the diagnosis and treatment of WM. It promotes "targeted research, clinical care methods, education, training, and advocacy for Waldenstrom’s macroglobulinemia". A report summarizing the presentations at the conference has been published, and is available at https://link.springer.com/article/10.1007/s12254-023-00876-3 -- click on the "Download PDF" box on the right. The chapters include summaries of presentations under the topics: New insights into BTKi treatment of Waldenström’s macroglobulinemia Management of WM patients previously exposed to BTK-inhibitors BTK inhibition in Waldenström’s macroglobulinemia: trial updates and biomarker analysis Emergent [...]
Partially funded by the WMFC and presented at ASH in December, 2022, this research identified three subtypes of WM. The full abstract that Dr. Hunter presented at ASH is available here. Two other WM-related abstracts using the multiomic analysis from Dr. Hunter’s research were also presented at ASH: An in-depth investigation into why epigenomic regulation is so important to MYD88 mutations is available here The data also has been applied to investigating why ibrutinib (and by extension other BTK inhibitors) may result in long Progression-Free Survival (PFS); that abstract is available here
Dr. Steve Treon of the Dana-Farber Cancer Institute presents a thorough summary of the latest knowledge of WM and its current and upcoming treatments. See https://youtu.be/JCrdW4VpNpw.
This journal article by a set of researchers from across Canada provides an overview of treatment options for WM, and their usage in current (2022) Canadian WM treatment. See https://www.mdpi.com/1718-7729/29/10/560.
Québec has become the first province to include financial coverage for any BTK inhibitor on its provincial drug formulary. This is excellent news for WMers in Québec. And we hope this will set an example for other provinces (although they are quite independent from one another in making such decisions). The announced coverage is for BeiGene's Brukinsa, or zanubrutinib. BeiGene's news release can be found here.
