What's a Myeloma Clinical Trial Like? Patients Share Their Experiences

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Topics include: Treatment and Patient Stories

Many times, clinical trials are associated with advancing cancer research and evaluating innovative treatments, but what is trial participation really like for patients? During this Myeloma Patient Café, Patient Power host and multiple myeloma patient, Cherie Rineker, explores the clinical trial process from the patient perspective. Why do people decide to join a trial? How does expectation vs. actual experience compare? Hear from four patients living with multiple myeloma; Brian, Barb, Matt and Eric, as they walk through their treatment path, what led to a clinical trial, their unique view of following trial protocol and trial results. Can one trial be a bridge to the next therapy? The patient panel will also discuss their individual involvement with as many as four different clinical trials, novel agents like CAR T-cell therapy, anti-body drug conjugate, gene sequencing and more. 

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

At the time that I was considering undergoing a stem cell transplant I was offered one clinical trial through City of Hope which formally is identified as BNTCTN0702.  It was a three?arm stem cell transplant trial where one arm would get two stem cell transplants, one arm would get a single stem cell transplant and go directly to maintenance, and a third arm would get the stem cell transplant, go through consolidation therapy and then go to maintenance.  And I was in that third arm at the time that that was offered to me—I work in higher ed, and at the time that that was offered to me I said, certainly.  If I'm going to be sick somebody besides me needs to learn from this.  So I signed up for that.  

And when I was going through the consolidation therapy they asked me if I wanted to participate in another trial that was—that was attempting to monitor my maintenance and so that they wanted me on a specific maintenance regimen, and I signed up for that one. So I was on maintenance from that from spring of 2012 through September of 2017.  

And I have been in four different trials.  The first one I don't remember.  It was pretty minor, just a different combination of drugs that were common drugs. And then my second one was my cells with radioactive antibody isotope injection and then followed by an allotransplant.  And I had a stem cell transplant before that, so that was my second one within a year. And then I wasn't given much time left, and I was sent to City of Hope for a study on an agent to help with deletion 17p, and that was followed—let me look at my notes here.  Idasanutlin and ixazomib (Ninlaro) with dexamethasone (Decadron), and that helped bridge the gap.  I wouldn't have made it to my CAR-T trial without that.  And then eventually just recently finished up a CAR T-cell trial in Seattle.  

Since then I was on a drug trial that did not work.  And then most recently I am currently on a trial.  It's an antibody-drug conjugate trial through City of Hope, and as part of that I did a gene sequencing trial.  So four different trials, and currently on an antibody?drug conjugate trial. 

And my doctor had talked about a stem cell transplant for me, and then later I found out, like two weeks later I found out it was going to be part of this trial and didn't want to participate.  And when they said it was going to be a 15-year trial I said, yeah, sign me up.  So I had the stem cell transplant October of 2017, and then was given the maintenance drug the following February, and then took that maintenance drug for five years and have been in remission ever since then. 

But they went ahead and did a stem cell transplant followed by another, and then I went through a total of 13 lines of therapy.  And when the 13th wasn't successful, relapsed again in December of last year, I told my oncologist that—who wants to put me on four chemo drugs instead of the usually three, I said I want to try out the CAR-T.  

So very, very sick, I started making the trips to Sarah Cannon, which is about a 14-hour drive from our house. And was accepted into the trial and received my CAR-Ts on the 12th of March, and a few weeks later I showed no myeloma at all in my blood and then also none on the PET scan and none in my bone marrow.  So what 13 lines of treatment were not able to do over 65 months, CAR-T basically gave me my life back within weeks.  And I've become a big proponent of trials ever since.  

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.  

Did any of you have that issue or an issue of travel, money, or health that made getting into a trial challenging?  Matt, start with you.  I know you had to travel very far.  

And, yeah, it was very expensive, and yeah, over time it's really taken a toll on all of our savings and investments and all of that stuff.  But it's worth it, you know.  Money can be remade and we can live simpler.  And so it was very much worth it.  If I wasn't flexible with that type of stuff I wouldn't be alive, so I had to do it.  And I would go to any lengths to find help and an answer to my problem.  

Can anyone tell me about how they found out about the trial they joined?  Eric, can we start with you?  Today, online offers a tremendous amount of resources.  Which one, if any, did you use, and how do you stay informed about the latest trials?  

Also, of course, read blogs and read information from the IMF and other things that are coming out. And that all leads to trying to make the best decision.  So in the case of my current trial it was a matter of talking with my doctor and look at actually three different trials that were available, any of which could have been a good fit for me.  

And then it's a matter of which one—then it's kind of a matter of timing, right?  It's just are you sick enough, ironically, to meet all the qualifications for this or that particular trial.  And so that's kind of how I made the decision in concert with my doctor looking at the options available.  

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 July 2, 2018