Video

The WMFC was delighted to be able to bring you Dr. Shirley D'Sa from University College London (UK) Hospitals.  She presented to us on Friday Nov. 15th, 2024. Dr. D'Sa discussed two topics: Peripheral Neuropathy (PN), a common condition experienced by people with WM. Bing-Neel Syndrome, a less-common complication of WM. For both of these, Dr. D'Sa addressed the symptoms of these conditions, how they develop, how you can enable a swift and accurate diagnosis and how it is recommended to treat these conditions. We came away understanding that Peripheral Neuropathy is far more complex than one might have thought and [...]

In this (audio only) podcast, two doctors discuss the results of the Phase 3 ASPEN trial, which compared the efficacy and safety of zanubrutinib with that of ibrutinib.  But the second doctor is Dr. Carolyn Owen, Hematologist and Associate Professor of Hematology in Calgary.  She speaks (from about the 20:40 point onward), and includes comments on the challenges of accessing BTKi's in Alberta (and by extension, many provinces in Canada) and the rationale for the typical prescribing pattern for WM patients: BR first, and then BTKi's.

On Mar. 27/2024, Dr. Neil Berinstein of the Odette Cancer Centre at the Sunnybrook Hospital in Toronto put us in the driver's (ok, doctor's) seat!  After giving us the basics of WM diagnosis and treatment options, we were offered four case studies, and had to decide on their diagnosis and treatment.  Not as easy as it sounds!!  Once again, WM proves that "when you've met one WMer ... you've met one WMer" -- we are all so different from one another. Dr. Berinstein is also the Principal Investigator for the all-Canadian BRAWM trial, for previously untreated Canadian WM patients who now [...]

For those of you interested in a slightly bigger picture, this video, from The Leukemia & Lymphoma Society of Canada (LLSC), may be of interest.  At a high level, it presents an overview of Non-Hodgkin Lymphomas, including where they arise from, the spectrum of lymphomas from indolent to aggressive, and very good (but brief!) introductions to the various treatment modalities.   Of particular interest was a discussion of how sub-classification of lymphomas is leading to better treatments -- exactly what was done in the WMFC co-sponsored research from Dr. Hunter.  An overview of Minimal Residual Disease is useful as background for those [...]

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.

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.