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How Can CLL Patients Talk to Their Doctors About Clinical Trials?

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Published on September 13, 2019

Those living with chronic lymphocytic leukemia (CLL) want to know what their choices are for treatment, including clinical trial opportunities. Is there an open trial that’s suitable for me? How can I learn more about enrollment? CLL experts Dr. Jeffrey Menashe, Dr. Jeff Sharman and Jeanne Schaffer discuss ways a healthcare team can help CLL patients navigate trials. Watch now to learn about navigating 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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What a wonderful time we had! We were excited like fans at a rock concert, but our rock stars were the medical experts.

— Lynn, CLL town meeting attendee

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

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Transcript |

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, Dr. Menashe, you’re a community oncologist. You’re using usually approved therapies but yet in Eugene, where he is, or down in San Diego or up the road in Seattle, what do you say to your patients about trials or when do you say, “Mrs. Jones, maybe we should consider a trial for you?” 


Dr. Menashe:              

Well, it’s very disease and patient-specific. Before venetoclax (Venclexta), obintuzumab (Gazyva) was in trial and certainly for applicable patients, that would have been a very appropriate treatment and it’s weighed out against the off-protocol or regularly available treatments such as ibrutinib or even FCR, depending on the situation. 

So, to me, in CLL, usually, it has been less part of the discussion first line, but for subsequent lines of treatment, it becomes a greater and greater part of it. 


Andrew Schorr:          

Okay. So, Jeff Sharman, what do you tell people—do you discuss, put it all out there if somebody comes to you, whether they are newly diagnosed or coming into a consultation, their CLL has reared its head again, do you say, “Here’s what we got approved, here’s what we’ve got in trials?” Do you put it all out on the table? 


Dr. Sharman:              

That’s almost exactly how we do it. The discussion is, “Okay, here are your three, four, five choices.” But I think it’s hard sometimes when we shift that burden onto the patient and they’re kind of saying, “Which one do I do?” There’s informing, but there’s also guiding. I oftentimes say information without judgement is just anxiety. So, you can get information, but if you don’t know how to process it, it’s hard to navigate that. 

So, clinical trials, I think one of the myths is that it’s for patients who have end stage disease or something like that. That couldn’t be farther from the truth. I’m doing a CLL study right now for patients who have never been treated before. If I were to need CLL, it’s the treatment I would want. 

So, it’s not practical for everybody. That particular study is kind of time intensive and you have to be at the treatment facility a lot for this little chunk of time and this little chunk of time. That doesn’t work for some patients who may have to travel big distances. So, a lot of it’s like, “Okay, here are the options. Here are your values, your goals. Let’s take this list of five down to two and why don’t you work with me to figure out which of this one seems to resonate most with you.” 


Andrew Schorr:          

Right. So, one way of finding a trial is if with your doctor, if you discuss, “What do you know about what is going on or what trials are you doing?” and then you can talk to other patients, to some degree, either here or online to find out—not necessarily that it’s right for you, but you can get a sense of what’s going on. 

Then there’s a website, clinicaltrials.gov, which people around the world use to see. Then obviously, if you’re outside the US, you find out are these trials available near where you are? 

So, Jeanne, back to you—so, let’s say I enroll in a trial. I’ve got to sign a lot of papers. 


Jeanne Schaffer:         

Yes. The first thing is you meet with your doctor and—well, this is how it works at our clinic—they meet with the doctor and then they would sit down with me and we would go through the consent. A consent can be 20 pages. A consent can be 35-40 pages, but we go through and the consent will talk about what the trial is going to look like, what your time is gonna look like in the clinic. It goes over the drugs. It goes over side effects. 


Andrew Schorr:          

You talk about cost. 


Jeanne Schaffer:         

We talk about cost because patients think that clinical trial means everything is paid for and that’s not true. So, we always want to make sure that patients are aware that some things will be billed to their insurance. We always check the patient’s insurance before we put them on a clinical trial. In Oregon, most trials are covered, but we do touch on that because that’s important. 

Andrew Schorr:          

Okay. So, now, I’m in a trial. You’re trying to figure out different things, like maybe the side effects for certain treatment. Do you encourage me to call you? 


Jeanne Schaffer:         

Definitely. They have my—when you’re on a clinical trial, you usually have a contact, your nurse, your research nurse. You get to dial her directly. You don’t have to go through the big phone tree at your clinic. So, we are kind of a navigator for all of that. I tell them always to call me even if you think the side effect is minimal or not related. It’s really the doctor’s job to decide the severity and the cause of that side effect. 

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.