We plan to run occasional articles on this website about aspects of WM research and treatment, specific to Canada and Canadian patients. If you have any suggestions for topics that you would like to see explored or commented on, you can email your suggestions or questions to wm.in.Canada@wmfc.ca.
Although these are neither medical advice nor the opinion of the WMFC Board, we hope that as educational material, these help you navigate the Canadian world of WM.
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 costs […]
Participating in a US-based trial from Canada … During a Pandemic
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 […]
CAR T-cell Progress in Canada
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 ( […]
World-class WM clinical trial in Canada
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 , […]
