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):
For the past year, in these uncertain COVID times, I have been enrolled in a US-based clinical trial of LOXO-305, aka pirtobrutinib, a true next-generation BTK inhibitor which works differently than ibrutinib, acalabrutinib and zanubrutinib.
COVID has been a blessing and a curse for this Canuck lab rat.
I stopped writing this to do an online trial check-up with my Florida hematologist. Although on-site trial visits are scheduled every 4 weeks for the first year of my trial, Tele-Health has allowed me since June to do all my bloodwork, CT scans and EKGs in Halifax, meet in person with my family doctor, and email the test results to my trial nurse prior to my online appointments. If all goes according to plan, I will not need to travel until the end of November for my one-year anniversary on the trial.
Staying at home in the safest place in the world to ride out the pandemic has also relieved some pressure on my wallet. Although I followed my own advice from the articles above and asked exhaustive questions about the financial implications of trial participation, I was regularly blindsided by surprise billings, errors and omissions.
The uncertainty of international travel and (sort of) closed borders has been an enormous challenge – what was once a 4-hour flight from Halifax to Orlando is now a 12-hour ordeal through Toronto and Chicago. Although I qualified for essential medical exemption from quarantine, I still ended up spending nights in Montreal because of missed connections. And wearing an N-95 mask for hours on a packed US domestic flight, waiting for someone to punch the stewardess, is definitely an acquired taste.
The silver lining in the travel debacles was the wonderful travel agency employed by the drug trial sponsor – all bookings taken care of, all unforeseen developments capably handled by their 24/7 help desk. Capable, Compassionate, Caring – should you enroll in a US trial, I do hope that Colpitts Clinical Travel is at your service.
So, you ask, is it worth it? The time, the expense, the risk, the radiation?
A resounding yes on two counts – for my fellow WM travellers, and for me.
Any treatment you have ever had started as a clinical trial. And for me after 10 months on pirtobrutinib, all blood counts normal, absolutely no side-effects — full of energy, enthusiasm, and optimism.
Every moment for me is an opportunity for joy.
January 25, 2022: Start of cycle 15 of my clinical trial – back in Florida for 3 months and 4 trial appointments. There continue to be ups and downs — in the good sense – IgM at all-time low of 1.5, hemoglobin up to 150.
There are no more slots for WM patients in this trial, and the upcoming WM pirtobrutinib trial, slated to begin recruiting this fall, does not have any Canadian sites. Pity!
I am so grateful that The Universe delivered this opportunity to me when I needed it most, and hopeful that one day my fellow Canadian WMers can benefit from what has been for me the most effective therapy in my 15 years on this journey.