News – Page 3 – Waldenstrom's Macroglobulinemia Foundation of Canada

WM and DVT — One Member’s Cautionary Story

2022-08-20T20:51:43-04:00

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 [...]

WM and DVT — One Member’s Cautionary Story2022-08-20T20:51:43-04:00

“Grand Rounds” with Dr. Steven Treon

2022-06-16T11:27:42-04:00

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 [...]

“Grand Rounds” with Dr. Steven Treon2022-06-16T11:27:42-04:00

Abstracts from ASCO

2022-06-10T12:31:11-04:00

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 [...]

Abstracts from ASCO2022-06-10T12:31:11-04:00

“What is my NEXT treatment?” with Dr. Carolyn Owen

2022-05-28T10:12:40-04:00

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 [...]

“What is my NEXT treatment?” with Dr. Carolyn Owen2022-05-28T10:12:40-04:00

Research Month: Interim Report from Dr. Hunter

2022-04-24T11:18:42-04:00

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 [...]

Research Month: Interim Report from Dr. Hunter2022-04-24T11:18:42-04:00

Help Promote Action on Rare Diseases!

2022-03-27T16:55:08-04:00

As WMers, we often talk about the challenges of getting access to new drugs, in Canada, to treat our rare diagnosis. The next step in promoting and taking action on rare diseases needs to be done now, and CORD, the Canadian Organization for Rare Disorders (https://www.raredisorders.ca/), is asking for everyone’s help. And they have made it easy for us to make our voices be heard! With the expected release of the Canadian Strategy for Drugs for Rare Diseases later this year including $500 million per year from the federal government, there is a once-in-a-lifetime opportunity for governments, health systems, industry, academia, [...]

Help Promote Action on Rare Diseases!2022-03-27T16:55:08-04:00

Paying for BTK Inhibitors in Canada

2022-03-24T17:03:18-04:00

BTK Inhibitor drugs such as Ibrutinib, Zanubrutinib, etc, are very good drugs for the treatment of WM, especially for relapsed and refractory WM. Unfortunately, unlike other drugs used in the treatment of WM, they are currently not generally funded by the Provinces for the treatment of WM, primarily because of their high cost. This is despite the fact that most of these drugs are approved by Health Canada for the treatment of WM. So, unlike other drugs used in the treatment of WM, paying for these drugs becomes an issue. We have addressed the question of "How does one manage the [...]

Paying for BTK Inhibitors in Canada2022-03-24T17:03:18-04:00

WMFC has a YouTube Channel!

2022-03-23T16:58:09-04:00

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 [...]

WMFC has a YouTube Channel!2022-03-23T16:58:09-04:00

BRAWM Trial Update from Dr. Neil Berinstein

2022-03-13T15:38:52-04:00

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.

BRAWM Trial Update from Dr. Neil Berinstein2022-03-13T15:38:52-04:00

Another Clinical Trial Available in Canada: Nemtabrutinib

2022-05-26T17:45:39-04:00

Nemtabrutinib (a.k.a. MK-1026 and ARQ 531) is a BTK inhibitor, but, similar to Pirtobrutinib (LOXO-305), has a reversible ("non-covalent") binding behaviour to the BTK site. (For more information on its chemistry, see this site.) An open-label phase 2 trial of Nemtabrutinib, including WM patients, is now recruiting at locations around the world. In particular, three (as of May 24/2022) Canadian locations are included: The Tom Baker Cancer Centre, Calgary, AB; Study co-ordinator is at (403) 521-3723 The Jewish General Hospital, Montreal, QC; Study co-ordinator is at (514) 340-8222, x24572 The Ottawa Hospital, Ottawa, ON; Study co-ordinator is at (613) 737-7700 (added [...]

Another Clinical Trial Available in Canada: Nemtabrutinib2022-05-26T17:45:39-04:00