Reina Weiner

[Editor’s note:Reina Weiner, four-time clinical trial participant, is giving an in-depth look at her trial experience, obstacles she encountered and more on Wednesday, August 29th at Noon Pacific (3 PM Eastern, 2 PM Central) Have you registered for the webinar? Please be sure to join us to learn more about clinical trials from both patient and researcher perspectives.

Those are the words my husband heard repeatedly when I entered a clinical trial for multiple myelomaat The National Cancer Institute.  Even more pointed was the comment: “She’ll be a guinea pig!”  

As we think about knocking down the obstacles to clinical trials participation, what comes to mind is misinformation.  Therefore, I’d like to share what it’s like to participatein one and what a trial actually is. How do I know this?  Because I’ve participated in four clinical trials: A non-interventional one, two Phase II and a Phase III clinical trial, none of which had a placebo in the protocol (the fear of many patients.)   Believe it or not, many people are under the impression that cancer patients in clinical trials are there solely for scientific research with no regard to their personal health or the risks involved. Couldn’t be further from the truth.

I learned what actually goes into designing and maintaining a clinical trial when I worked as an Oncology Representative and National Oncology Trainer for the pharmaceutical industry. Very basically, trials are scientific studiesthat require painstaking planning, scrupulous oversight, the conscientious selection of an appropriate patient population with a clear endpoint—the goal of the research. And, those are just the barest specifics.

In every trial I participated in I was well cared for, followed diligently with a great deal of data constantly compiled as to my side effects, the efficacy of treatment and my response to it. Most importantly, I was grateful to receive what most patients want—the latest and greatest treatment for my multiple myeloma.  I’ve always felt safe in a clinical trial and yes, I would participate in another trial, if eligible.It’s true there are risks as there are in any treatment, but you learn about potential side effects and the length of the trial well before you consent to it. If the treatments become intolerable, patients are quickly removed from the trial and returned to their oncologist.  And, patients can leave the trial at any time for any reason. 

Education about clinical trials—the pros and cons—is essential to removing one of the most significant obstacles to trial participation—misinformation. Ask as many questions as you can think of until you’ve made an informed choice.   

Reina S. Weiner 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.