Published on August 1, 2018
Patients considering a clinical trial may want to be aware of the obstacles others have faced to better prepare for potential challenges. What are the current barriers to enrollment? Why are some on the fence about joining? A panel of patients living with multiple myeloma, including Cherie Rineker, Matt Williams, Barb Hansen, Eric Wolf and Brian Helstein, address difficult things they encountered; financially, emotionally and physically, and share the ways they overcame and made the decision to join a trial. How does travel and family affect a person’s ability to participate? The panel also shares their perspective on finding information about new trials, relocating, resources for support, and making treatment decisions with children in mind.
This is a Patient Empowerment Network program, produced by Patient Power. We thank AbbVie, Celgene, Sanofi and Amgen for their support.
Transcript | What Are the Challenges Myeloma Patients Face During a Clinical Trial?
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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.
Yes. When was I was diagnosed I was in Alaska. There wasn't really a myeloma specialist, and we got online right away and found the Seattle Cancer Care Alliance, and we're really happy there and found a great doctor there. But we had—for my first transplant we relocated down there for 10 months. Luckily, they had a little school and some--for our kids and some housing. But it was expensive. It wasn't free. They had a social worker that helped us a lot, and we did some fund-raising. Lots of really great friends that helped out and just really streamlined our finances and our bills and sold a lot of stuff to fund it.
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.
Right. Right. Thank you. Thank you. I totally understand what you mean, having a young child in my family myself. We have four beautiful daughters. So thank you. We're glad you chose to hang in there.
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?
A little bit like Matt. I made the decision to move to an area where I knew there would be good support when retired from the military, so I moved up into the LA area near City of Hope knowing that they had fantastic care and availability of trials and other things like that. So I get most of my information through them.
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.
Right. Thank you. Thank you for sharing that. Brian, what about you?
I was on the fence about having a stem cell transplant, not on the fence about joining a trial. And the--my caregiver, my darling wife, basically pushed me off the fence and said, you will have this. I've heard your doctor say that you will have a much better opportunity for long-term survival if you go through with this.
So at City of Hope, as I was being interviewed and prepped for the stem cell transplant, they gave me a list of options which included amongst other things the participation in a trial. And I was impressed with what they were looking at. I was impressed with what the options were. Unlike Eric's comment about the shingles trial where he might have gotten a placebo, there was no placebo involved here. There was standard of care treatment, there was standard of care plus and standard of care plus plus, which was what was going to be offered.
So it was at that point a fairly easy decision saying, okay, I have made this commitment to go ahead with the transplant, so let's see about going ahead with the trial and, as I say, being disciplined enough for follow directions. But it wasn't—there was no hesitation about it. It was not something where there was a specific start date, again, like Eric, where I needed to fit in or I needed to be so sick or so healthy. It was very much you're going to do a stem cell transplant, and then beyond that we're going to put you into one of these three arms and we will monitor you from that point.
Right. Right. Thank you, Brian. Barb, I'm not sure. Did I already asked you this question, or do you have anything to add?
Well, my stem cell transplant was part of a clinical trial, and when my doctor said to me with a stem cell transplant you might be able to take a drug holiday. That was appealing to me, so that combined, you know, being part of the clinical trial then was a bit of a driving force. I hated being on dexamethasone. I did not sleep well for, well, a long time.
And then, you know, I just can't encourage people enough to find a multiple myeloma specialist who really knows this complicated disease and treats people individually and just knows what's best for the patient. And I was very glad that I joined the clinical trial, and I certainly advocate for them whenever I get a chance to. Thank you.