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Does Participating in a CLL Trial Preclude Me From Other Treatments?

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Published on September 4, 2019

At a recent town meeting in Portland, a panel of experts, including Dr. Jeff Sharman, Dr. Michael Choi and Jeanne Schaffer, address concerns chronic lymphocytic leukemia (CLL) patients may have when considering a clinical trial. What if the side effects are too severe? Am I able to preserve my future treatment options? Watch now to learn more about chronic lymphocytic leukemia clinical trials.

This town meeting is sponsored by Pharmacyclics LLC and Janssen Biotech, Inc. It is produced by Patient Power in partnership with The CLL Global Research Foundation, The US Oncology Network, Compass Oncology, Willamette Valley Cancer Institute and Research Center, and The Leukemia & Lymphoma Society (LLS).

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The Leukemia & Lymphoma Society (LLS) Compass Oncology The US Oncology Network Willamette Valley Cancer Institute and Research Center

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Transcript | Does Participating in a CLL Trial Preclude Me From Other Treatments?

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.

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:          

So, here we are living with a long-term condition. Jeff, can the people who are in trials—and you applauded, you led the applause. Can we help you get as a researcher to the goal line faster? 

Dr. Sharman:              

Oh, my gosh, yeah. The applause is very sincere. The people who do research studies, you are entrusting us with a process at a very vulnerable moment. It doesn’t always go right. It’s something where we’re pushing the envelope together. I have the highest regard for my research patients because they’ve accepted risk. 

I always tell patients that it’s the study in service of you rather than you in service of the study. As soon as it looks like this study isn’t working for you or the side effects are too great, we’re gonna peel you out of it. We’re not gonna force you to stay in something that isn’t serving your own health interests. But 2014 was not that long ago and that really was on the shoulders of the people who stood up and said, “Yes, I’ve been a part of it.”  

Jeanne Schaffer:         

I think that’s one of the myths that people think, “Oh, I’m gonna sign on in this and I’m gonna go through it and get to the end of it.” That’s not true. It’s totally voluntary. You can withdraw at any time for any reason. We don’t push it if you’re having side effects. You can come off a trial. 

Andrew Schorr:          

I’ll mention two things about that. First of all, when I was in the FCR trial, the trial was for six cycles. Some of you have had six cycles of it. At that time, at least I had a lot of nausea with it. 

So, in the blood, my blood was pretty normal after three cycles and I said to the research nurse, “I think I want to stop. I don’t like the nausea. Look at the blood.” They said, “Our study is you should go on for six cycles because we think the effect on the bone marrow and on your CLL will be more durable.” So, I stuck it out. 

So, what happened? 17-year remission—now, did that come from the extra three cycles? I don't know. But that was the idea behind it. So, you’re talking to the nurse all the time and you reasonable doubt. 

One other question for you, Jeanne, is somebody might say, “Well, if I’m in this trial, does it preclude me from something that could be better?” So, because of trial criteria—so, I know it’s tricky, but we want to preserve our options. So, what do you say to people?  

Jeanne Schaffer:         

Usually, if they have questions that need a doctor to address, I would send them back to a doctor. But a lot of times, a trial is a good thing to do first if you want to try something that we’re still studying, it doesn’t usually exclude you from something else in the future as far as something that’s approved. In vice versa, it could work. You might try something that’s approved, then it excludes from a study. If you need a second treatment, the study… 

 

Andrew Schorr:          

…Michael, you’re nodding. That’s what I worry about. I want to preserve all my options. 

Dr. Choi:                     

I agree with Jeanne’s point. Sometimes studies are designed or the hypotheses can be improved upon ibrutinib (Imbruvica). So, the study will be ibrutinib with another drug, but then those studies will say if you’ve had ibrutinib already, then you’re not eligible because either we’re stacking the deck, we know ibrutinib is working for this patient or we already know ibrutinib has it, but I would say it’s usually not the other way around where something you’ve gotten in an investigational manner excludes standard treatments in the future. 

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.