News

This time of year, the presentations at the ASH (American Society of Hematology) Conference become available.  Remembering that conference presentations do not go through a full peer review (unlike journal articles), they do give us an idea of what research is being done, and what kinds of results are being seen. You can access 75 items that mention the word "macroglobulinemia", here.  We're not suggesting you investigate all of them, but they are certainly available for your perusal. There are three in particular, though, that you may find of note. This paper is an interim report on our Canadian BRAWM trial, [...]

Your editors recently acquired access to an older version of ChatGPT (3.5, if anyone is tracking these things).  Being of an inquiring mind, they gave the system the following instructions: "Always assume the request or question is asked in the context of Waldenstrom's Macroglobulinemia (WM). You will respond with information about Waldenstrom's Macroglobulinemia. This information must be based on the latest science and research." Then, of course, they told it "Write me a poem". Offered for your amusement, this was the result.  (And our apologies to the French translators!) In the realm of Waldenstrom's reign, A tale of cells that [...]

For those interested in keeping up with the latest research, abstracts from the 2023 American Society of Clinical Oncology (ASCO) Annual Meeting have been published.  Here’s a link to a search of the abstracts that mention WM -- seven of them. If you are looking for "what are the possible new treatments", there is one abstract, looking at a new BCL-2 inhibitor, that might be of interest. Of course, your interests may be in different abstracts.  As WMers, we are all so different when it comes to the details. And of course, ASCO should not be confused with ASH, which [...]

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 [...]

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 [...]

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.

We often hear from the Bing Center for Waldenström's Macroglobulinemia at the Dana-Farber Cancer Institute (DFCI).  Now let's hear from the Mayo Clinic. Dr. Morie Gertz has published "WM: 2023 Update on Diagnosis, Risk Stratification, and Management", available here.  It provides an extensive overview of the literature covering : how WM is diagnosed the risk stratification for the disease the various treatment options (regimens) for WM No new research results are presented; the article is a summary of existing knowledge, and thus can be useful to those looking to refresh their knowledge about the various treatment options. Most useful to the [...]

Every year, the American Society of Hematology (ASH) conference is an opportunity for the latest hematology research from around the world to be presented. Although conference presentations do not go through peer review (unlike journal articles), they do provide an opportunity to see what is coming down the research pipeline. You can access 68 (!!) items that mention the word "macroglobulinemia" here.  Of course, you may not want to look at all of them.  So here are a very few, that we think may be of interest. First of all, we would be remiss if we did not point out the [...]

Do you have a rare disease?  Are you a caregiver for a person with a rare disease? If you're reading this on the WMFC website, then the odds are that you answered "yes" to one of those questions! And so CORD, the Canadian Organization for Rare Disorders, needs your input on: The impact of your rare disease on you and your family, and Your perspectives on how Canadian health systems can improve access to rare disease medicines. They are running a survey for both patients and caregivers to gather your feedback. The second part of the survey, on policies around rare [...]