As we know, every WMer is unique. Equally unique is the impact the disease has on their family and loved ones. In September, 2022, Maclean's published this look at two WM diagnoses, and the impact on their families. See https://www.macleans.ca/longforms/finding-courage-and-calm/.
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The WMFC, in partnership with the Leukemia and Lymphoma Society of Canada (LLSC), is pleased to announce the availability of an Operating Grant for research into WM. An Operating Grant is a two-year grant designed to provide funding to research that may ultimately lead to a significant change in the understanding, diagnosis, or treatment of blood cancer -- in our case, specifically for WM. All the details are available at the LLSC website on Operating Grants, but the highlights of such an award are as follows: Available to researchers at Canadian institutions Funding is for up to $100,000 per year [...]
Ed. note: Many of us need to go the Emergency department from time to time, for things not related to WM. During the discussion of our symptoms with the triage nurse, there is the inevitable request along the lines of, "Tell me about your medical history". Of course, we obediently mention that we have "Waldenstrom's Macroglobulinemia". They express puzzlement. We spell it for them; they type it into our medical record. Possibly correctly. We explain that it is an indolent form of non-Hodgkin Lymphoma. That they understand. But not all non-Hodgkin Lymphomas have the same implications, when it comes to diagnostic [...]
How many WMers are there in Canada? And how do we know? The "urban myth" says "oh, there are about 150 people diagnosed with WM in Canada every year". But for some of us, this wasn't enough. We wanted to know. And it just wasn't enough to refer to the urban myth. The obvious place to look is, perhaps, the Canadian Cancer Society (the CCS). They publish an annual report containing extensive statistics on cancer in Canada. The latest one, for 2021, is an excellent reference. Unfortunately, while the CCS does a great job breaking down the various types of cancer, [...]
A project that has been a long time in the making came to fruition earlier this year. The goal of the WMFC was to have a series of video conferences led by key WM researchers, and to specifically invite Canadian Medical Professionals to learn more about our disease from those who know it best. This required a lot of things to come together: Availability of at least one key speaker. With the assistance of the Dana-Farber Cancer Institute, and in particular Christopher Patterson (the Administrative Director of the Bing Center for WM), we were able to get our program onto the [...]
For those interested in keeping up with the latest research, abstracts from the most recent American Society of Clinical Oncology (ASCO) Annual Meeting have been published. Here's a link to a search of the abstracts that mention WM. There are eight of them. (One of them is a video of Jorge Castillo, which, it appears, we cannot view without membership or registration fee to the ASCO meeting.) One abstract may be of particular interest, as it is a retrospective (after-the-fact) study comparing Bendamustine+Rituximab against Ibrutinib as first treatments for WM. Conclusion? "Both BR [Bendamustine+Rituximab] and Ibr [Ibrutinib] lead to comparable outcomes [...]
Our National Zoom meeting from May 24th, 2022, should be on every WMer's "must watch" list. Dr. Owen presented the Canadian treatment situation for WM, concisely summarizing what is available, the pros and cons of various options, and putting her current clinical trial with Nemtabrutinib into that context. The video is available here, on our YouTube channel. Dr. Owen is Associate Professor in the Division of Hematology & Hematological Malignancies, University of Calgary, and Hematologist at the Tom Baker Cancer Centre. She is also the Local Principal Investigator at the Tom Baker Cancer Centre for the clinical trial of Nemtabrutinib, which [...]
Did you know that over the past 5 years, the WMFC has committed over $750,000 to fund research for a cure and improved treatments for WM? Pretty darn good for an all-volunteer organization with so few patients having such a rare cancer. 80% of all WMFC donations go directly to WM Research! Research makes a difference. “Three years ago my whole world came crashing down when I was diagnosed with WM” says Anne. “Through the advocacy of the WMFC Toronto support group, I was connected with Dr. Berinstein about to open a new clinical trial. My participation in this trial changed [...]
Your donations to the WMFC are currently funding Dr. Zachary Hunter, of the Dana-Farber Cancer Institute in Boston, in a project entitled "Multiomic Analysis of DNA, RNA and Epigenomic Networks in WM". In support of our upcoming Research Month, he has provided us with an interim report. This comes in both a short form, and a long form. The long form is available here -- but be warned, it is more than 7 pages of very technical information and graphs. On the other hand, it provides fascinating insight into the technical challenges and depth of analysis that goes into modern genetic [...]
As you all know, the WM community has many members who are immunocompromised. This can be for several reasons: they are on, or have recently been on, chemotherapy treatment for the disease (especially Rituxin / Rituximab) they are on BTK inhibitors, which also have the effect of reducing our ability to manufacture antibodies in response to vaccines (as has been reported) the disease itself has resulted in lowering IgA, IgG, and other protective mechanisms, as the clonal B-cells proliferate; even without being in active treatment, WMers can be prone to pneumonia and other diseases These ways of being immunocompromised can mean [...]