In partnership with the IWMF, we are thrilled to make available to you two booklets that are part of the Global Initiative for education of both patients and physicians, worldwide. And through the generosity of educational grants from BeiGene and Janssen, printed copies have been put in the mail to our WMFC members (as of about Nov. 1, 2023). And we will continue sending out copies to new members as long as our supplies last! Of course, you can download and print your own copies using the links below. The first booklet, Essential Information: A Patient's Guide, answers the questions you [...]
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This booklet provides a compilation of current knowledge on the diagnosis, treatment, and established protocols for WM. Complete with references to published papers, throughout, it has been modified with a small number of Canadian-specific footnotes. Authored by two WM specialist MDs from the Bing Center for WM at the Dana-Farber Cancer Institute, it is presented in partnership with the International Waldenstrom's Macroglobulinemia Foundation (IWMF).
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 [...]
Zanubrutinib vs Ibrutinib in Symptomatic WM: Final Analysis From the Randomized Phase III ASPEN Study2023-08-04T08:31:19-04:00
Quoting from the paper, published in ASCO's Journal of Clinical Oncology: "Extended follow-up results confirm improved long-term safety and tolerability of zanubrutinib compared with ibrutinib and support deeper, earlier, and more durable responses in patients with WM regardless of previous treatment or CXCR4 and MYD88 mutational statuses."
A concise summary of the entire 11th International Workshop on WM, entitled What we learned, and how it will impact scientific discovery and patient care, is available here, as published in the journal Seminars in Hematology.
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 [...]
May is Research Month Spring has sprung and with May upon us, it’s time to thank you for a successful Research Month. With our fundraising and research so intertwined we’d like to give you an idea of the current state of WM research and its future so we’ve put together a simplified snapshot of a complicated issue. The WMFC is always proud to remind you that most of our donations go towards funding research. Donations also fund our goal of taking patient education programmes like the Educational Forums online to make them more accessible across Canada. Your donations also go to [...]
Recently diagnosed and looking for a second opinion? Now there’s a travel and lodging assistance plan for Canadian WMers. Now available to WMers in Canada, the IWMF Travel & Lodging (T&L) Assistance Programme provides individuals with WM - or those being evaluated for WM - with financial assistance related to a second opinion about WM or confirmation of a WM diagnosis. The IWMF runs this programme in partnership with NORD, the U.S. National Organization for Rare Disorders, an American non-profit organization aiming to provide support for individuals with rare diseases. Download the NORD/IWMF flier about the Travel and Lodging Assistance programme [...]
You can donate your data too The nature of research is changing with the advent of AIs that can look for patterns in huge databases. Your blood test results can enrich this landscape of data that AIs hunt through looking for clues. There’s an Australian database project called Whimsical linked to CART, the Center for Analysis of Rare Diseases. Sharing your test results with the Whimsical study is another way to support WM research. Donating your data Sign up here to donate your data at CARTwheel - https://cart-wheel.biogrid.org.au/gui/Patient/Register.aspx The long Whimsical story – the official study - https://onlinelibrary.wiley.com/doi/10.1002/ajh.26173 The short Whimsical [...]