Skip to Navigation Skip to Search Skip to Content
Search All Centers

Considering a Myeloma Clinical Trial? An Expert Explains

Read Transcript Download/Print Transcript

Published on September 20, 2016

Is participation in a clinical trial a good idea? Is it safe? Patient Power founder and host, Andrew Schorr gets the conversation started with two myeloma specialists from UAMS Myeloma Institute: Dr. Gareth Morgan and Dr. Faith Davies . Together, they discuss overcoming the fear of participation while addressing factors such as being a guinea pig and obtaining all the correct information. For more information on clinical trials, check out our partners SparkCures and Myeloma Crowd.

Featuring

Partners

The UAMS Myeloma Institute

You might also like

Transcript | Considering a Myeloma Clinical Trial? An Expert Explains

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:

Dr. Davies, so clinical trials, so a lot of people are afraid of them. They say I don’t want to be a guinea pig, or maybe the patient feels good. They bring home sometimes some very legalistic papers. This bad thing could happen. This could happen. Black boxes, big, bold letters, stuff like that.

And the husband—and wife—says I don’t feel comfortable with that. But yet, we’ve had 6 new medicines approved in the last year. You guys are working on really cool stuff. I think you used the word cool or groovy you were saying. 

Dr. Morgan:         

This tells you how old I am.

Andrew Schorr:                  

All right. So what would you say to people about considering clinical trials?

Dr. Davies:            

So I think you’re right. The way we’ve really made such amazing advances in the last few years has been the patients that have been willing to take part in clinical trials. There are different types of clinical trials. And some clinical trials, we know that the drug already works, and we’re really comparing our, I guess, older-fashioned drugs to the one of the newer drugs that we know works, but we don’t know which one works better. Whereas there are other clinical trials where, actually, we don’t know if the drug works.

And it’s important to chat with your doctor but also the research team as well as having a look on the Internet and coming to patient groups to really see what kind of trial you’re being offered. Because it may, actually, be that you’re being offered a new and groovy, new drug, which we know is going to be, or we believe, is going to be effective.

It’s just it’s not been freely available yet. And so you’re not, actually, being a guinea pig. You’re actually, potentially, getting something that’s very good. Clearly, there are many advantages to being in the trials—so access to drugs and so on. But there’s also a commitment from the patients as well and the fact that you do need to maybe attend more regularly, potentially have a few extra tests, which may be a good thing because you may get improved care. But there are pros and cons to it. But I agree with you. Reading the information sheet, even myself as a doctor, I find very difficult.

And I always try and remind patients that, if you read the back of a headache pill, the leaflet in there, you would probably never take the headache pill. 

So it’s important to sit down with your team and your family and really read through and find out which are the important things to know about. 

Andrew Schorr:                  

So I’ve been in two clinical trials. One trial, I think, saved my life from leukemia. And the other one, I had a deep vein thrombosis, I know Sean has had some, maybe others of you, and it ended up by being monitored for a blood thinner, they found this other cancer where, fortunately, there was a drug for it. So the monitoring really looks at your whole person and I think is good attention to your health. So there are a lot of benefits to being in it. Sadly, in the U.S., less than 5 percent of adults with cancer are in clinical trials—not true at the University of Arkansas here, but, generally, a much lower percentage. 

And so for those of you watching all over the world, on the Internet, or wherever you may be, it should be part of the discussion. It’s very fair for you to say to the doctor who is across the table in the exam room, say are there trials for me? And if you don’t know what a good resource is, and I want to point out one that’s on our slide that we have up here, and maybe you’re following along on the Internet, both ourselves and a group called Myeloma Crowd, and they’re a partner of ours, Myelomacrowd.org, we work with a group called SparkCures started by a man whose mom died of myeloma, Brian McMahon.

And so you can find on Patient Power and on Myeloma Crowd, you can click through and SparkCures, you put in your ZIP code and some information about what you know about your myeloma, and it is searching the big database of clinicaltrials.gov for trials and where they are. And then, you can connect with a center such as this one, University of Arkansas.

But I would say make that part of your surveillance for your myeloma. Make that part of the plan. And, Gareth, there’s nothing wrong with saying to your doctor or community oncologist, hey, can we include that in the discussion and being active as a patient or a family member.

Dr. Morgan:         

The more active the patient is, the better their care. So it’s a kind of huge paradigm shift in treatment. So it’s a relationship between the patient and the doctor. It’s not a dictatorship. And that’s really, really important. And, again, it’s organizations like yourself that are helping to spread that word. 

Andrew Schorr:                  

So, Faith, I just want to say, it seems like with this revolution going on in myeloma, approved medicines and the things going on in the lab, you, Dr. van Rhee, are all involved in these, it would be a shame if somebody didn’t ask. If myeloma passed them by, their disease progressed, and there were options. And they simply didn’t know. 

Dr. Davies:            

I completely agree. There are so very many new drugs out there. And the ability, again, as we were saying earlier to match a patient to the correct drug. And so I think it’s really important that patients are engaged in this process that they do ask about clinical trials—and that the local doctors encourage people to enter clinical trials as well, I really do.

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.