Published on November 15, 2017
Advanced practice nurse Kristen Carter and Dr. Faith Davies from the UAMS Myeloma Institute explains to myeloma patients what point in the course of treatment is appropriate to participate in a clinical trial, and compares trials to standard care. Dr. Gareth Morgan also discusses the importance of understanding the different phases of clinical trials. Tune in to find out.
This town meeting is sponsored by Amgen, Janssen Pharmaceuticals and Takeda Oncology. It is produced by Patient Power in partnership with the UAMS Myeloma Institute.
Transcript | Understanding “Different Kinds of Clinical Trials” in Myeloma
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Kristen, when should patients consider participating in a clinical trial?
That's a good question. I’m still a firm believer in our total therapy program so I feel like if you have a young, healthy patient especially in a low-risk setting, you still want to go for that treatment that we know is going to knock their cancer out. We want to go with the tried-and-true method first. And then once they relapse, at first relapse maybe that’s when you consider a clinical trial, not initially up front.
I know we have some high-risk smoldering trials that we’re looking at before we would consider treatment to do a smoldering trial, and that may be a place to consider a clinical trial there. But if you have someone in active disease that’s symptomatic, I still feel that treating with the tried-and-true methods up front is very important for long-term remission.
I tend to agree with Kristen. I think one of the important things is that there’s different kinds of clinical trials.
So there are some clinical trials where we do use the tried-and-tested method, but then we’re adding a little bit extra to it to make it better.
And so some of those trials we do up front, so the patient gets the tried-and-tested method, but then there’s like the cherry on the top of the cake—or we hope it’s going to be—that we add on. Whereas in the relapse setting and maybe the multiple reflex and refractory setting, those might be the areas where we’re not quite sure, which is the best study drug to have, and therefore we may be comparing a couple of drugs.
Okay, I’m going to ask the question directly that is in everyone’s mind right now in our audience both here and online. You participate in a clinical trial, you’re just a guinea pig, right?
Why not? You’re experimenting on us.
These clinical trials are always backed up by scientific method. And before it even reaches a patient, you’re going to do testing in the lab. We’re not practicing on people. Of course, there’s always the element of the unknown, and that’s when we use new drugs. But I hate that. I had a patient who used to call himself White Rat Number 5, and I was like, you are not White Rat Number 5. You’re a person that we’re trying something new on.
People need to understand the settings of trials. There are experiments where people give of themselves, which is the Phase I study where you’re testing safety, applicability. What we’re talking about here are the later phased studies, and so Phase II and Phase III studies are different. They’re not experiments; they’re ways of developing and getting new drugs to more people, but the only drugs really that go into those studies you’ve already got experience with them, and you know they’re active.
We here wouldn’t dream of doing an experiment up front, but we would dream regularly of using new agents in that setting. And that’s what patients really need to realize this; go in the trial, collect the data, all of that but understand what phase of study it is.
I know that patients can get information regarding clinical trials online at clinicaltrials.gov, and also at our website, the power clinical trials search tool which is available in the myeloma center at Patientpower.info. But beyond consulting Dr. Google, as it were, what should a patient say to their nurse, to their doctor, to their nurse practitioner? How should they broach the subject of clinical trial? How do they bring it up?
I think that is always a conversation to have with your doctor at home for sure, to start out. And you know if I were a patient and I’m interested in a clinical trial, the first thing I would want to know is what are the pros and cons. What are the possible side effects, what benefit doing the clinical trial versus doing a different regimen that’s already on the market; what would that benefit me personally if I were a patient? Those are important questions, especially in a relapsed setting.