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The Best CLL Treatment Might Be the Next One

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Published on March 31, 2021

The Process of Finding the Right CLL Treatment

With so many treatment options for patients with chronic lymphocytic leukemia (CLL), it sometimes takes a few tries to find the best treatment for your needs. Carol Butler, a CLL patient who is starting her second clinical trial in a few weeks, and Betty Goracke Olguin, a Nurse Practitioner at the Willamette Valley Cancer Institute and Research Center are here to share their experiences with CLL treatments and explain the value of clinical trials.

Support for this series has been provided by AbbVie Inc. and Genentech, Inc. Patient Power maintains complete editorial control and is solely responsible for program content.


Transcript | The Best CLL Treatment Might Be the Next One

Carol Butler: Hi, I'm Carol Butler and this is my CLL story.

Can You Share Your CLL Treatment Journey?

I thought I was super healthy. I went in for my regular physical and my white blood count was up. My doctor said, "Let's have another look in three months." And we did. And it was up even higher. So, she said, "I'm sorry, but you have chronic lymphocytic leukemia." And I was devastated. I immediately called MD Anderson and made an appointment. That summer, that was 2015, that summer I was diagnosed. They confirmed the diagnosis of chronic lymphocytic leukemia. I went to MD Anderson, was on watch and wait and there every six months for five years.

Betty Goracke Olguin: With all of the CLL treatment options available, sometimes it can be hard to make a decision. It's important to understand what side effects are associated with each treatment and the administration of the drug. Is it IV? Is it oral? And then considering your own strengths and limitations, you have transportation issues, how much time do you want to be in the clinic and discussing those treatment schedules with your physician and finding the best treatment for you.

Carol Butler: Then that summer of 2020, the white blood count started going up again. In September of 2020, I went on another drug, which was also a BTK inhibitor. My oncologist put me on a half dose to start. That was working wonderfully until I started developing some symptoms that sounded like AFib. I had to be taken off even though my blood counts for the first time this February, were in normal range. Now, thankfully, I'm going to be considered for another clinical trial, which will start in April.

What Advice Would You Give to Patients Considering a CLL Clinical Trial?

Betty Goracke Olguin: During your CLL journey, you may be given the opportunity to participate in a clinical trial. There are several misconceptions in participating in a clinical trial. One of them is that clinical trials are a last-ditch effort, and that is not true. Often, clinical trials are offered as a frontline treatment option. Additionally, there's a misconception that once you begin clinical trial participation, you can't get out of it. And clinical trials are all voluntary. At any time, even if the treatment is working, patients can withdraw their consent from the clinical trial and discontinue participation.

On a clinical trial, there is a lot of oversight, not just by your physician, but also by the clinical trial sponsor and their representatives, as well as a designated research nurse, data collectors and clinical trial monitors. There is specific criteria for ongoing clinical trial participation regarding progression of disease or toxicities. So, there's just a lot of caution and care while you are on a clinical trial. My advice would be to consider a clinical trial if your physician feels you may be eligible for one.

Carol Butler: The advice I'd give you if you're going to start a clinical trial is go for it. Be sure to talk with your doctor and tell them any symptoms that you may have, because it may be a dosing issue. But I would not hesitate to go on a clinical trial. They monitor you well and it could be a life-saving measure for you. 

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