Help Promote Action on Rare Diseases!


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 (, 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


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!


We have a YouTube channel! 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


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


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

Help Researchers Understand the Impact of Covid-19 on Canadian Blood Cancer Patients


A group of Canadian researchers is carrying on where earlier COVID-19 vaccine trials left off.  They are specifically recruiting patients with blood cancers to learn more about how the various vaccines have triggered antibody responses (or not).  We have received a specific statement that people with WM are indeed eligible to participate in the study, as long as you are not currently on an anti-CD20 treatment (i.e., Rituximab / Rituxin). From their web site: People with blood cancers have weakened immune systems due to their disease and the treatments they receive.  They also have a higher risk of severe [...]

Help Researchers Understand the Impact of Covid-19 on Canadian Blood Cancer Patients2022-02-03T12:43:55-05:00

2021 American Society of Hematology Conference: WM and Covid-19, and more


Every year, the American Society of Hematology (ASH) conference is an opportunity for the latest research from around the world to be presented.  Although conference presentations do not go through peer review (unlike journal articles), they do provide an opportunity to look into what is coming down the research pipeline. Two presentations touched on Waldenstrom's and Covid-19. reported on an ongoing study from Greece.  It compared the antibody response of WM and MM patients vaccinated with either the Pfizer or the Astra-Zeneca vaccines against a similar population of healthy controls.  Key quote:  "Active treatment with either rituximab or Bruton's Tyrosine [...]

2021 American Society of Hematology Conference: WM and Covid-19, and more2022-02-02T16:56:37-05:00

Journal article: BTK Inhibitors for the Treatment of WM: A Canadian Perspective


This journal article by Dr. Frederic Larose and our frequent contributor Dr. Christine Chen compares various BTK inhibitors, and also provides comparison with and rationale for the continued use of Bendamustine + Rituximab in the Canadian context.  No new research results are presented; the article is a summary of existing knowledge, and thus can be useful to those looking to refresh their knowledge about these drugs and their histories, and the place of the drugs in the Canadian healthcare system.  . Sections include: Current treatment landscape in Canada (very readable to the lay person) Molecular rationale for targeting Bruton’s tyrosine kinase [...]

Journal article: BTK Inhibitors for the Treatment of WM: A Canadian Perspective2022-02-02T16:56:00-05:00

A Coincidence and a Friendship Leads to Forming a Support Group


Written by Stu Boland, Co-Leader of the Alberta Support Group. It was 1999 when a group of 12 skiers made their first trip to Chatter Creek, British Columbia for 3 days of back-country downhill skiing – a cat-skiing experience like no other.  Living conditions were very rustic.  Ski conditions were nothing short of exceptional!! The trip was organized by Cam Fraser and some of his friends. Stu Boland was invited to join the group.  Stu and Cam knew each other through a mutual friend.  Stu, and Cam and his wife Jane, lived a few blocks apart in Southwest Calgary.  [...]

A Coincidence and a Friendship Leads to Forming a Support Group2021-11-02T16:31:08-04:00

Dr. Christine Chen video: an Introduction to WM


Dr. Christine Chen from the Princess Margaret Hospital in Toronto presented at the recent Lymphoma Canada National Patient Conference on Lymphoma and CLL which was held on Oct.14th and 15th.  This was one of several "breakout" sessions in which different Lymphoma varieties were discussed; it was important that WM was chosen as one of them. Her 45 minute presentation covered the following WM topics: Clinical features of WM How to diagnose WM When to start treatment First-line treatment options Second-line treatments and beyond Special situations And the discussion of treatments is, of course, from a Canadian point of view. Click [...]

Dr. Christine Chen video: an Introduction to WM2021-10-23T18:02:20-04:00
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