Myeloma Patient Perspective: Making the Decision to Join a Clinical Trial

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Topics include: Understanding and Patient Stories

Clinical trials are at the center of medical research and may offer hope to multiple myeloma patients seeking a new avenue for treatment. Although a healthcare team may strongly recommend a specific trial, enrollment is ultimately a voluntary decision made by the patient. Like all other treatment options, many people wonder what a trial is like, whether it’s a good option for them, and thoughtfully weigh the risks and benefits. A panel of patients living with myeloma, including Cherie Rineker, Matt Williams, Barb Hansen, Eric Wolf and Brian Helstein, discuss things to consider before joining a clinical trial, reasons why they chose to participate and share their experience versus expectation. 

This is a Patient Empowerment Network program, produced by Patient Power. We thank AbbVie, Celgene, Sanofi and Amgen for their support.

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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.

Cherie Rineker:

So what's a myeloma clinical trial like?  The experiences are probably as vast as the amount of patients that are in it.  Matt, allow me to start with you.  What made you decide to join a trial, and how did your experiences compare to the actual expectations that you had? 

And then Seattle Cancer Care Alliance came up with a study that I heard about just through word of mouth.  Although I was a patient there I was not aware of it.  Somebody told me on social media about it, and I got my name on the list.  And my doctor told me I wouldn't make it, that it wasn't going to open in time for me, and he was kind enough on his own time to do some searching for me and found the City of Hope trial that targeted my 17p deletion problem. 

And so I was willing and eager and trying to get in everywhere and was continually disappointed being turned down, and I thought it was going to happen again there for sure.  And I was lucky, there was a doctor, the Dr. Green there was—opened it up a little bit.  There was many reasons for him to exclude me, but somehow I just squeaked in there, and my story is very similar to yours.  Shortly after, in 28 days, I had no sign of myeloma in my marrow or my blood. 

There was a little bit left in my PET scan, but I just got back last week from Seattle and there's zero sign of myeloma now after my 90-day test.  So I'm just so grateful for clinical trials and to be able to finally get into the CAR-T trial. 

And I must say I'm somewhat rebellious about things.  I have a dermatologist at this point who does not like me to go running out in the sunlight without a hat, without a long-sleeved shirt.  If he had his way, I would also have ski mask and tights on.  No exposure to sunlight, and I have been known to go for a long run in my running shorts and shoes. 

This was not going into a clinical trial where I was going to be told you're going to take these drugs on this day, you're going to show up at such and such a time on that day.  I knew that I was going to have to be disciplined, and I was going to have to follow exactly the protocol of the trial if it was going to be of any benefit to other people.  So I made that compromise.  I'll go running without a shirt once a month or whatever, and I will be at the doctor's office at, you know, 10:15 if that's the time I've been summoned for. 

I don't know any other way to put it.  It was a matter of being disciplined so I could share so that others could benefit from this. 

But like yourself and Matt, there are other clinical trials that we seek out on our own part, because we need those to manage our disease, and that was the case with the other two trials I've been on. You know, the one I'm on now is because, as much as we don't like to admit it, our options are limited, and so this is a trial that's there and available and the timing lines up, and so you do it. 

Also, I have kind of a science background and my son does cancer research, and I know that the new science isn't going to happen without clinical trials.  I'm a real advocate for clinical trials and did—I volunteered for Colorado Cancer Research Program, which coordinates all the trials.  So it's been a rewarding experience.  

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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Page last updated on January 18, 2019