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 firstname.lastname@example.org.
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.
Dr. David MacDonald of The Ottawa Hospital provided us with an extremely informative presentation at our National Zoom meeting on Oct. 26, 2022. One of the best presentations, done in layman's terms, covering a set of topics: How does WM originate in the body, and how does it relate to other lymphomas How have drugs been approved for WM in Canada How is WM treated in Canada ... including brief updates on clinical trials that Dr. MacDonald is involved in (and which we have covered in blog posts in the past): BRAWM nemtabrutinib Highly recommended viewing for anyone wanting a refresher [...]
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 [...]
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 [...]
We have a YouTube channel! https://www.youtube.com/channel/UCYDcXKrk4Nedjj_RIz1B_NQ will take you there. This channel has collected all of the WMFC videos we’ve been able to find, into one place. This includes the collection of videos from our 2019 Ed Forum, and many recordings of Zoom meetings, both older and more recent, that featured a guest speaker. Future WMFC videos (those recordings of Zoom meetings that feature a guest speaker, and our next Ed Forum) will be put there, too. One thing to be aware of: if you are looking at some of our older posts on this website, and you click on a [...]
On Feb. 9th 2022, Dr. Neil Berinstein of the Sunnybrook Cancer Research Institute provided us with an update on the BRAWM trial. That trial combines the standard-of-care Bendamustine + Rituximab, but adds in a BTK inhibitor, Acalabrutinib. He also gave us an view of how Covid impacts WM patients. And there was time for Q&A on both topics. View the video here, on the WMFC YouTube channel.
Megan Morrison, Registered Dietitian at the Princess Margaret Cancer Centre Malignant Hematology Program in Toronto spent time with us to talk about the role of nutrition and hydration during our journey with WM. Not everyone was able to attend the presentation live, so we recorded it. You can view the recording here: https://iwmf-wm.zoom.us/rec/share/YSZrtFh49bhnaGCOTpp58MXO19X-dHwbcjoVVpFe8D8w_krB1GClvS0uUXzt0ku2.0M9sTAXUPNvVsyos. You'll need a password to view the video. It is "L$?i+WY7" -- just the characters inside the double quotes. If you are copying and pasting this string, make sure you do not include the double quotes.
The IWMF brought Support Group Leaders from the US and Canada together to hear Dr. Morie Gertz of the Mayo Clinic, Rochester, MN. Dr. Gertz’s unique perspective and succinct, perceptive, precise messaging was absolutely priceless. Perhaps most useful to our newer members would be the first 20 minutes, during which he discussed the importance of understanding when to treat WM, and why "watch and wait" was such an important aspect of a treatment plan for WM. This was followed by an engaging Q&A covered everything from understanding COVID antibodies to the importance of consultations at Centers of Excellence to encouraging [...]
What would you like to know about participating in a Clinical Trial in Canada? Dr. Neil Berinstein, known to many of our readers, walked through many, many of the questions one might have. Think of it as "Clinical Trials 101". This was presented as a webcast through Lymphoma Canada on June 29, 2021. Dr. Berinstein himself is running a WM-specific clinical trial right now, so this is definitely appropriate to our WM community. For the description of the event from Lymphoma Canada, click here. And to view the webcast, you will have to click here, and supply your name and email [...]