Patient-to-Patient Advice: Finding Support During the Clinical Trial Process

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Topics include: Understanding , Patient Stories and Emotional Well-Being

For people considering next steps on their treatment journey, it may be beneficial to hear from others who have ventured down a similar path. A panel of multiple myeloma patients, including Cherie Rineker, Matt Williams, Barb Hansen, Eric Wolf and Brian Helstein, provide valuable insight from their experience on what has helped them throughout their journey and tips for others participating in a clinical trial. The panel explains where to go for information about the condition and treatment options, how to find relevant clinical trials, financial resources and more. How can people better mentally prepare for their fight against cancer? The panel also discusses developing emotional resilience, connecting with others, and effective communication with their medical team. Watch now to learn more.

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:

Of course, if you're fortunate enough to be associated with a cancer research center like City of Hope, then that's a great opportunity.  They have posters throughout the campus about different trials that are going on, and of course I can reach out to my doctor at any time and look at those things. But I think that all goes into our calculation of how we're going to manage our disease and what's the next step for us.  

It's—different people have—and I've ebbed and flowed over the years about how much I want to be involved, and sometimes you just want to take a break.  You just want to just do whatever my doctor says, and I don't want to think about this disease for a while.  I just want a couple of months off.  We have that option, but it always comes back and comes to the forefront.   

So I think as??the advice is to look ahead, think ahead, keep up with what's out there, but don't let it overwhelm you.  At some point you have to live your life and just not—you can't live for the disease, live every day thinking about the disease.  

And then I got into some Facebook chat room type stuff where I was getting more information, and that's where I met you.  And you recommended SparkCures, so it kind of led to that.  And I was doing my own stuff, and I met couple other people that kind of were like Brian, helping out.  

But ironically, it turned out to be, you know, I like sending little messages, private messages to people and making acquaintances, and I became friends with this guy, Grant, from South Africa.  And he's the one who told me about the trial that I finally got into, and it was at the very hospital that I was at, but I was unaware of it.  And he told me so early I got my name in there.   

So I think, leading up to your question, persistence, you know, and don't give up.  And just take it one day at a time.  And I like the advice of don't get overwhelmed with it and just keep a good attitude.  And then ultimately be flexible.  There's a lot of help out there and I'm continuing to be helped with my air fare and stuff like that, I forgot to mention before.  

 

And so there's a lot of—don't get overwhelmed by the money.  There's some help out there for that, too.  And just one day at time and don't give up and just try to reach out to other people and get—the personal information, one patient to another online probably ended up being the most beneficial to me.  

 

And just the other day there was a gentleman who just basically said, I'm at the end of the line, can't do no more, and I've been working really hard today and yesterday to write letters and talk to my doctors and to try and get him, because I know when we're that sick sometimes it's really hard for us to do it ourselves.  So absolutely there's support you can get online. 

And then the other avenue I have is through The Leukemia & Lymphoma Society first connection program. The Patti Robinson first connection program where I get calls from the society asking me if I'm available to talk to a person who is in another part of the country or here in Colorado.  And so it's a person who just wants a call. They're either newly diagnosed or they're going to go through a stem cell transplant or they're considering a clinical trial, and so we chat and talk and I, you know, point out what I've been through and what has worked for me.  

Always encourage them to talk to their doctor, and I don't give medical advice by any means, and it's encouraging.  Very rewarding to talk to people like that.  

Barb was just talking about talking with, working with her doctors, and one of the things that I think all of us will agree on is you have to feel comfortable with your doctor, and if you don't, it's time to find a different doctor, a different treatment facility, whatever.  You need to be comfortable as you're working with these people.   

And, again, I think it was you, Eric, said sometimes you want to turn your mind off and stop worrying about this thing for a little bit.  I find that that's fairly easy to do as long as I keep in front of me why I'm prepared to keep fighting, to keep going.  At that point, having made that decision, having put that focus on, it makes it easier for me not to focus on being sick.  And that's something I would tell somebody, is why are you here?  What do you want to do with the time you've got left?  

None of us are getting out of here alive.  Seriously. All a diagnosis of multiple myeloma does is say, okay, you've got something that can kill you, and now you can put a name on it.  That's bringing home in a very visceral way something that we probably intellectually knew but were not emotionally prepared to deal with.  And so focusing in on what's important becomes very important part of moving forward.   

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Page last updated on April 22, 2019