Daniel Zlatin, Author at Waldenstrom's Macroglobulinemia Foundation of Canada

How many of us are there, anyway?

2022-07-10T16:45:24-04:00

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, [...]

How many of us are there, anyway?2022-07-10T16:45:24-04:00

“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

How Your Donations to the WMFC are Put to Work

2022-05-14T17:08:06-04:00

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 [...]

How Your Donations to the WMFC are Put to Work2022-05-14T17:08:06-04:00

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

Paxlovid: Getting Hold of It

2022-04-25T18:09:30-04:00

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 [...]

Paxlovid: Getting Hold of It2022-04-25T18:09:30-04:00

Covid-19 Antiviral Treatments: Availability

2022-04-11T16:06:41-04:00

Paxlovid is an oral anti-viral treatment, approved by Health Canada. It is used only once one has contracted Covid-19, and usage must begin within 5 days of symptom onset. We know that some provinces, for example Ontario, have published a web page outlining how its limited quantities will be used, and who to contact if you think you are eligible. Top of the list of eligible people are immunocompromised people over the age of 18. But we do not have information on Paxlovid availability in all provinces. Or the availability of other treatments, in all provinces. If you can help [...]

Covid-19 Antiviral Treatments: Availability2022-04-11T16:06:41-04:00

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

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About Daniel Zlatin