Skip to Navigation Skip to Search Skip to Content
Search All Centers

A Patient’s Perspective on Clinical Trials

Read Transcript
View next

Published on March 5, 2020

Key Takeaways

  • Clinical trials give patients access to innovative therapies, while advancing cancer research and refining treatment options. 
  • Drugs already approved for other diseases may be used in clinical trials to see if and how they can benefit CLL patients. 
  • Be an empowered patient—ask questions, do your own research, and find a doctor who takes the time to really understand your treatment goals.   

“Not only are you getting tomorrow’s drugs today, but you’re also helping others coming down the way,” says chronic lymphocytic leukemia (CLL) patient advocate Leslie Powell, explaining why she is passionate about clinical trials. After a lackluster response from her first two doctors, Leslie found a CLL specialist who took the time to understand and support her treatment goals. Watch now as Leslie shares her story and the importance of being an empowered patient. 

Featuring

Transcript | A Patient’s Perspective on Clinical Trials

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.

Andrew Schorr:         

Hello, Andrew Schorr here, and as you know I have chronic lymphocytic leukemia. I also have another condition myelofibrosis. There’s a drug that has been used in myelofibrosis called Jakafi or ruxolitinib, but they also tested it to see if it could help with fatigue for chronic lymphocytic leukemia. And this lady, was in a clinical trial for it, Leslie Powell from Austin. Thank you for being with us.

Leslie Powell:            

My pleasure. 

Andrew Schorr:         

Okay. So, this trial was—your fatigue with CLL was pretty bad?

Leslie Powell:            

It was extreme.

Andrew Schorr:         

Okay. 

Leslie Powell:            

I quit my job. It was bad.

Andrew Schorr:         

Really. So, they said maybe this drug for another condition could work, you were in that trial? 

Leslie Powell:            

Correct.

Andrew Schorr:         

Did it help?

Leslie Powell:            

Helped for about four months. A new lease on life, just completely 100 percent improvement.

Andrew Schorr:         

Okay, so, you decided to be in a clinical trial because you were just at your wits’ end?

Leslie Powell:            

Correct.

Andrew Schorr:         

What would you say to people about being in a clinical trial? 

Leslie Powell:            

I would encourage it highly. Not only are you getting tomorrow’s drugs today, but you’re also helping others coming down the way. 

Andrew Schorr:         

Right. Now, the answer’s not always going to be ding, ding, ding, it’s a breakthrough, it’s a cure. But that’s okay, right, trying to get at it, better answers.

Leslie Powell:            

Correct, it’s all about education and what’s working—what can they learn from it?

Andrew Schorr:         

Okay. I want to ask you another question about your CLL. You were living in North Carolina; you went to a local doctor. Did that doctor talk to you about trials at all? 

Leslie Powell:            

Not at all. Went to a local doctor first, and he was seeing breast cancer and all kinds of blood cancers, and I knew that that wasn’t who needed to stay with. So, I found a doctor in Durham, who had been with Duke and then formed his own practice. And there I was all excited, asking about a trial that I had heard about, did they know about it? And they were like, “Oh, that’s not for you, don’t worry about that.” And I just knew coming away from that appointment that I needed to get to someone who was more receptive to talking about trials. Because I knew for CLL, the cure isn’t here yet, and it was coming through trial, coming down the way.   

Andrew Schorr:         

And you ended up going to a CLL specialist. 

Leslie Powell:            

Correct.

Andrew Schorr:         

Okay.

Leslie Powell:            

At MD Anderson. 

Andrew Schorr:         

Okay. And so, what medicine are you on now? 

Leslie Powell:            

I’m taking venetoclax (Venclexta) right now. I did—I was on ibrutinib (Imbruvica) for about 18 months, added in venetoclax, and then now I’m on venetoclax only.

Andrew Schorr:         

Okay. And at some point, you’re hoping maybe you can stop?

Leslie Powell:            

That’s the plan. 

Andrew Schorr:         

Okay. So, you’re on this journey trying to figure out what’s right for you. 

Leslie Powell:            

Correct. 

Andrew Schorr:         

But you’re driving it.

Leslie Powell:            

For sure, I think just being a researcher and knowing what’s out there and guiding the doctor or asking the right questions. Even if you just ask a question and spurs the thought in his mind or her mind that, “Oh yeah, I do know a researcher, or I do know a trial about that.” 

Andrew Schorr:         

So, what’s your advice to other patients?

Leslie Powell:            

Get onto the Internet and find out what you can. Find out trials that are going on and if your doctor’s not asking you about it or talking to you about it, ask them. You drive your own ship.

Andrew Schorr:         

Okay. Leslie Powell, thank you. You don’t seem to be tired today. 

Leslie Powell:            

Nope, I’m good. 

Andrew Schorr:         

So, I’m really glad you’re doing well, thanks for being in a trial and would you be in a trial again?

Leslie Powell:            

Absolutely, hands down.

Andrew Schorr:         

Okay. Andrew Schorr and Leslie Powell in Austin. Remember, knowledge and being that powerful patient can be the best medicine of all.

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.

Recommended for You

View next