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Caring for Each Other Through Clinical Trials

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Published on March 10, 2020

Key Takeaways

“It’s not only good for you, it’s good for everyone…and there are so many things that can be learned from a trial,” says chronic lymphocytic leukemia (CLL) patient Carol Butler. Carol, who was diagnosed with CLL five years ago, has the rare 17p deletion and has been participating in a clinical trial for the past five months.

Watch now as Carol and her husband, John, discuss clinical trials with Patient Power Co-Founder Andrew Schorr, and share their story of being care partners for each other through two different cancer diagnoses.

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Transcript | Caring for Each Other Through 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 in Austin, Texas. We’re attending a conference for healthcare professionals, but I got some of my friends who are patients and care partners to come along, and we have Carol and John Butler from Austin. Carol is a CLL patient like me, five years with CLL, and for the last five months, she’s been in a trial. She is 17p-deleted, and it’s a trial looking at ibrutinib (Imbruvica), and how are you doing?

Carol Butler:                

I’m doing well.

Andrew Schorr:           

Okay. And John, you have to support her in the decision of being in a trial.

John Butler:                 

Well, I’m just—it’s payback time, because she was my support 14 years ago when I went through proton therapy at MD Anderson for prostate cancer. So, this is payback.

Andrew Schorr:           

Okay. So, in the idea of doing something experimental, I mean, ibrutinib is an approved drug, but they continue to see can it work in broader areas. That’s okay with you? You support that decision?

John Butler:                 

You bet, because it promises to take care of this problem, and it’s our problem.

Andrew Schorr:           

Okay. You’re a team. 

John Butler:                 

You bet. 

Carol Butler:                

Absolutely.

Andrew Schorr:           

Okay. So, Carol, what would you say to people about considering being in a trial?

Carol Butler:                

I would say absolutely, try it. It’s not only good for you, it’s good for everyone, and there are so many things that can be learned from a trial other than what they’re looking for in the original trial. Because I was on three pills a day and developed symptoms, complications—and they dropped me to one pill a day, and I’m able to handle it, and the one pill a day is still working just as well as the three.

Andrew Schorr:           

Right. They’re learning, and your white blood count—and, CLL patients will know—as 200 and what originally? 

Carol Butler:                

It’s 220. 

Andrew Schorr:           

And, what is it now? 

Carol Butler:                

It’s 38.

Andrew Schorr:           

Okay. So, she’s definitely gone in the right direction. How are you feeling?

Carol Butler:

I’m feeling good, and my red blood counts are all in good shape too.

Andrew Schorr:           

Okay. So, as they do trials, sometimes it’s for a new drug that’s never been out, sometimes it’s learning more about a drug that is out, and that’s your case with ibrutinib—learning more about it—and in the case of the 17p deletion, which sometimes people say is really scary, it seems to be working.

Carol Butler:                

Yes, thankfully.

Andrew Schorr:           

Okay. Well, thank you so much for being a trial patient. We wish you all the best. John, thank you for being a supportive care partner. 

John Butler:                 

I wouldn’t miss it for the world. 

Andrew Schorr:           

She supported you... 

John Butler:                 

You bet.

Andrew Schorr:           

...and now you’re supporting her.

John Butler:                 

That’s the way it’s supposed to be.

Andrew Schorr:           

Okay. Well... 

Carol Butler:                

...and, thank you for all you do.

John Butler:                 

Yes. Getting patients together is still one of the most important things you could do with any disease. 

Andrew Schorr:           

Right. And one more thing—what would you say, Carol, to people,  about maybe that first doctor they see about speaking up and asking about trials?

Carol Butler:                

Oh, absolutely. My initial doctor—my internist—didn’t even want me to—she thought it was overkill for me to go to MD Anderson, so absolutely ask about trials that are available. Anyone should.

Andrew Schorr:           

And, John, I know you feel strongly. You’ve got to go the extra mile to get what’s right for you. 

John Butler:                 

You bet. I researched everything I was going to do on prostate and wound up with proton at MD Anderson, and it was the best decision I ever made.

Andrew Schorr:           

Okay. So, whatever it is, you’re driving the bus, so you need to ask questions, right?

Carol Butler:                

Absolutely.

Andrew Schorr:           

Because you’re the ones living with the cancer.

Carol Butler:                

That’s right. 

John Butler:                 

That’s right.

Andrew Schorr:           

It’s your life. Okay, Carol and John from Austin and Andrew telling you that knowledge and considering a clinical trial can be the best medicine for you.

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.

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