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Expert Perspective: Optimizing Care Through Clinical Trials for Myeloma

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Published on August 11, 2016

What are the benefits to participating in multiple myeloma clinical trials? Dr. Faith Davies of UAMS Myeloma Institute responds to questions about accessing optimal care for individual myeloma patients. Dr. Davies discusses the ever increasing myeloma treatment arsenal that includes new medications and genetic testing. To get tomorrow's medicine today, myeloma expert Dr. Davies recommends joining a clinical trial, involving your family and building a partnership between your local oncologist and myeloma specialist. "Don't go on a journey without a good, detailed map!"

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Transcript | Expert Perspective: Optimizing Care Through Clinical Trials for Myeloma

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:

Okay. Hello and welcome to Patient Power.  I'm Andrew Schorr.  We're on location at the University of Arkansas for Medical Sciences, the myeloma institute, and one of the guiding lights here now is Dr. Faith Davies who helps run the clinical research program here.  Thank you for being with us again on Patient Power.

Dr. Davies:

Thank you for having me.

Andrew Schorr:

Things continue to change. You have many drugs that you're studying, combination therapies, oral therapies, infused therapies and transplant, of course, still plays a role.  How today do you analyze what a patient needs individualized for them? Testing seems really important.

 

Dr. Davies:

Yeah, no, it is.  In the past, we've always tried to individualize treatment based on I guess patient factors, so how aggressive their disease is, whether they've had side effects to treatments before, what side effects the new treatments may give them, whether they're fit or whether they may be less fit. But now many of the new tests we can perform can help us individualize the treatment a little better.

So for instance, we're able to look at the genetics of the tumor, and we're able to potentially suggest better treatments for some patients.  So there's some—it's still very early days, but there's some new evidence to suggest that maybe some of the new proteasome inhibitors, such as carfilzomib (Kyprolis) and  (Ninlaro) may be better for patients that have previously been thought of having bad disease, so those patients with a 414 or a 17p deletion.

There [are] also some newer drugs coming through which might actually be good for other patients with genetic abnormalities.  So patients with a cancer mutation of an 1114, they look as if they might respond well to a brand-new drug called venetoclax (Venclexta), which actually used to be a drug for CLL. 

Andrew Schorr:

Mm-hmm, okay.  So it—let's face it, though, some people maybe are diagnosed at a community center, and they're not so up on this. But yet it's so important for people to get the right treatment.  So is the sense now with things changing that they at least need a consultation maybe or this analysis at a myeloma center so that a plan that certainly could be worked out locally as well as at the university center can be right for them?

Dr. Davies:

So I think so.  I think we're very much moving towards that, I guess for two reasons.  Myeloma treatment's changing so dramatically that making sure that you can see somebody who is really up to date on the treatment is going to be important, but then as you say you can also see somebody who can do all of the new tests. It's also important, though, that you keep contact with the local oncologists, because they're going to be delivering the care. And so that communication between maybe a more specialist center and the local oncologist is going to be very important. 

And it's maybe a new thing that doctors are also battling with a little bit as well, because often some doctors feel a little uncomfortable with that.  But I think people are moving round to seeing it as a good idea.

One of the patients said to me yesterday, actually, it was quite interesting, he described it as you wouldn't go on a journey without having a really good detailed map. And I think that's probably the area we're at now, is that trying to get as much information we can find out about the myeloma so that we can then decide on the best route for treatment and so on—be that through bone marrow tests, the genetic tests or indeed even the imaging tests like the MRI and the PET scan. 

Andrew Schorr:

So a partnership—the patient is almost the glue for a partnership might be between a local oncologist and folks like you. 

Dr. Davies:

Yes. No, and I think it's really important as you say that it's a glue. It's a partnership, it's not one versus the other.  It's a definite partnership, because that's the ideal way of giving good quality care.

Andrew Schorr:

Okay. Now you have a lot of drugs in research, but over the last year or so we've had I think six…

Dr. Davies:

Yes. It's been crazy.

Andrew Schorr:

…at least six new drugs. So the whole question is about combinations and also about patients considering being in a clinical trial, because some of those medicines you're studying could be—could give them tomorrow's medicine today in combination maybe with another one. 

So what would you say to patients about considering clinical trials knowing that the patients who are in the clinical trials led to those six approvals?  Why should they consider a clinical trial? 

Dr. Davies:

So I think there are a number of advantages about being in a clinical trial.  As you say, you're often exposed to many new drugs that you may not be able to get through your insurance company or with your local doctor. As well, you're—it sounds kind of crazy—you often go through a little bit more vigorous testing and a more closer follow?up, and so you sometimes get a better standard of care. Okay? 

Clearly, it comes with a few disadvantages, because you have to stick to the time points that are given in the study, but I think generally the—I guess the potential for having a new therapy and being cared for potentially in the optimum way is good.

Often with a clinical trial, though, some, you will definitely get the new therapy, others you'd actually get the standard treatment, which is still good. But there is always that kind of side of things as well.  So you have to look at the whole picture and decide whether it's going to be good for you or not. 

Andrew Schorr:

Now, there are studies, though, being designed that have what you call a cross?over. 

Dr. Davies:

Yep.

Andrew Schorr:

So if something that some people are getting in the trial is proving to be a big deal, ethically then you say to the people who are in the other arm, we're going to switch you over, right?

Dr. Davies:

Yes, that's right. And that's really important. That makes it—it makes it more difficult for the statisticians and the regulatory authorities, but it makes it much more attractive not only for the patient but also for the doctor. It's—you want to be involved and to be able to have that potential for the new drug.  

What's interesting recently actually is a number of the studies that have gone through, they've actually when they've shown that the drugs had a benefit all of those patients that received the standard treatment arm then had the opportunity to move over and get the newer treatment arm as well. 

Andrew Schorr:

So with this pace of change, somebody new comes to you.  They're terribly overwrought with the diagnosis of myeloma.  Are you hopeful for them? 

Dr. Davies:

Definitely.  I mean, I think we now look at where we are now, as you say, compared to where we were a year ago, even compared to where we were five years ago, and the—I don't think we ever mentioned the C word, the cure word. We're now talking about cure. We're certainly talking about being able to give patients a long and—survival.  In some instance, it may always mean that the patient is on a little bit of treatment so a bit more like a blood pressure treatment or whatever.

We're not quite there yet, but certainly we were never able to talk about those things before, and now we're at—you know, really, I think we're hopefully getting to the state where we can manage this and indeed cure it in many cases. 

Andrew Schorr:

Wow. That's so encouraging.  So would you say it's so important now with this change and with this hope that the patient, the family play an active role in the dialogue about what's right for them? 

Dr. Davies:

Definitely. No ifs, no buts.  We—as I say, when we're talking about individualizing treatment we're not only talking about choosing the right drug, but we need to be talking about choosing the right drug for the patient and the family.  And we're—again with the side effects being different, we need the patient to be active.  We need the patient to hopefully not have any side effects, so being engaged in the conversation. And we—as I say, we never used to talk about being able to work while having therapy, maintaining a normal life. We were talking about survivorship issues, so minimizing side effects, and all of those things are really important, so, yeah. 

Andrew Schorr:

Well, it's so great we can have that conversation now, and thank you for leading the way.  And you used this—hope of this word cure. You're a relatively younger physician, so hopefully early on still in your career you and your colleagues can make this happen.  I wish you all the best.

Dr. Davies:

Lovely. Thank you so much.  

Andrew Schorr:

Thank you for your devotion to patients. 

Dr. Davies:

Thank you. 

Andrew Schorr:

Here at the University of Arkansas For Medical Sciences, a lot of work going on in myeloma.  It's been going on for many years, pioneering work. Hopefully, you will connect with a leading center such as this that's right for you, build that bridge with your local doctor, so you and your family get the care that's right for you, and really capture that hope that Dr. Davies is talking about.

I'm Andrew Schorr. Remember, knowledge can be the best medicine of all. 

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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