Canadian Insights

Ed. Note:  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 trial of [...]

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) [...]

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 , [...]