Canadian Insights – Waldenstrom's Macroglobulinemia Foundation of Canada

WMFC and LLSC Announce a WM-focussed Operating Grant

2022-09-13T16:55:57-04:00

The WMFC, in partnership with the Leukemia and Lymphoma Society of Canada (LLSC), is pleased to announce the availability of an Operating Grant for research into WM. An Operating Grant is a two-year grant designed to provide funding to research that may ultimately lead to a significant change in the understanding, diagnosis, or treatment of blood cancer -- in our case, specifically for WM. All the details are available at the LLSC website on Operating Grants, but the highlights of such an award are as follows: Available to researchers at Canadian institutions Funding is for up to $100,000 per year [...]

WMFC and LLSC Announce a WM-focussed Operating Grant2022-09-13T16:55:57-04:00

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

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

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

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

Participating in a US-based trial from Canada … During a Pandemic

2022-02-04T17:28:07-05:00

Ed. Note, Oct., 2021: Ron Ternoway provides us valuable insights on what it is like to participate in a US-based clinical trial, from Canada, during a Pandemic. It's been over 14 years since my Waldenstrom's diagnosis, and I've spent half of them on clinical trials. I've shared my experiences from the patient point of view, first at the 2017 Phoenix Ed Forum (see link to video and slides below) and then in the October 2020 IWMF Torch newsletter (page 4): https://iwmf.wpengine.com/ron-ternoway-presentations/ https://iwmf.wpengine.com/wp-content/uploads/2020/10/torch-oct-2020.pdf For the past year, in these uncertain COVID times, I have been enrolled in a US-based clinical [...]

Participating in a US-based trial from Canada … During a Pandemic2022-02-04T17:28:07-05:00

CAR T-cell Progress in Canada

2021-09-25T12:04:55-04:00

In the two decades since I was diagnosed with WM, I have seen many changes in the treatment of our disease. Back then, my conventional treatment options were pretty well limited to cyclophosphamide or fludarabine. Rituximab treatment was reserved for those who had relapsed. How the times have changed! And the future holds even more promise with new and upcoming therapies. One of the most exciting developments is CAR T-cell therapy, which is being used, successfully, on WM patients in clinical trials and is considered to be potentially curative. Unfortunately, Canadian lymphoma CAR T-cell trial sites in Ottawa and Vancouver (NCT03765177) [...]

CAR T-cell Progress in Canada2021-09-25T12:04:55-04:00

World-class WM clinical trial in Canada

2021-06-26T15:39:36-04:00

This first article in our new, Canadian-focussed series, explores an important new WM clinical trial that is now up and running in Canada. This trial presents a unique opportunity for previously untreated WM patients who now require treatment for the first time. As a Canadian WM clinical trial, there are no trial costs associated with it for the patient. This trial is headquartered out of Sunnybrook Health Services Centre in Toronto, and the principal investigator is Dr. Neil Berinstein, who is well known and respected within the WM community. The trial is also now running at BCCancer in Vancouver. Halifax , [...]

World-class WM clinical trial in Canada2021-06-26T15:39:36-04:00