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

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Cherie Rineker:

So what advice do any of you—do we all have for those myeloma patients that feel overwhelmed now and through the entire process, what they can do when they feel they're running out of time or options?  What is it that you would like to tell them?  What has helped you on the Internet?  I know Brian at SparkCures really helped me to find the trial that I got into, BB2121, a Celgene CAR?T trial that ended up giving me my life back.  Just like Matt, I only had a couple months left.  What would you tell others?  Eric, do you maybe care to answer that first?  

Eric Wolf:

Yeah.  So this disease of course is real science?e, and we're always thinking one step ahead, what's the next thing, what's the next thing?  So part of that calculation should be clinical trials, and so you have to keep up with what's going on with those.  There's a lot of information out there in different blogs on Cancer Care Network, on Sparks, and those types of things.  

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.  

Cherie Rineker:

Right.  I think we all agree with that, Eric.  Matt, what would be any of the advice you would give?  

Matt Williams:

Just going back to how I accessed some of the trials.  It started with me, just through my doctors.  I had three trials that were just recommended by my specialist, and then it led to—once I got to the CAR?T cell therapy it was a little harder to find. And I started with the Leukemia and Lymphoma Society, and they were very helpful, and they actually taught me how to do a little searching myself.  

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.  

Cherie Rineker:

Thank you, Matt.  And I completely agree with you.  I'm pretty busy on Facebook myself, and I had people pushing me when my body and my mind could not handle any more and I wanted to give up.  And there was one lady in particular who just kept nagging me about it, and just to quiet her up I started following her advice and stuff.  And then one thing led to another, and I'm sitting here today because of these personal experiences.  

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. 

Matt Williams:

One more thing, Cherie. I forgot to mention, it's so important, Patient Power has been amazing with their videos and these interviews, and it really helped get me pointed in the right direction as well and some hope about CAR?T cell and a little extra information and got me excited and added some hope to my journey.   

Cherie Rineker:

Absolutely. Absolutely.  We owe a lot to Patient Power.  What about you, Barb?  

Barb Hansen:

I'm very pro clinical trials, and I do have a couple of venues where I'm able to encourage people to check out that option.  One is our multiple myeloma journey partner program, and because I tell my story there having had a stem cell transplant I also include the clinical the trial stories. And so when I'm doing that I encourage people to check out the possibility, the option of going through a clinical trial.  And here in the United States we really need to encourage people to do that.  

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.  

Cherie Rineker:

Thank you, Barb.  Yeah, you just taught me about two things I'd never heard of, so that is wonderful.  And I really think when patients talk to each other we can tell other things that the pretty pamphlets that are sent along with our lenalidomides (Revlimids) or our carfilzomibs (Velcades) doesn't always talk about all the things that we really experience.  So it's wonderful to hear a person who's been there explain things to us.  You, Brian?  

Brian Helstein:

What I would tell somebody, first of all, is take a deep breath.  It ain't going to kill you today.  And then the second thing, as we move forward with this, after you've had that deep breath, start evaluating what's important to you, how hard are you prepared to fight this.  This goes to what Matt was talking about, the kind of thing that Eric was talking about. What drives you?  What motivates you to keep going, and to keep those things in your mind?  It will make a tremendous difference in how you approach your various treatment options, the people you work with.  

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.   

Cherie Rineker:

Having a purpose in life is so very important.  I always tell people that even when you have cancer you can beat this disease if you keep in your mind you can, like you said, know what's important, why you're fighting to stay here, and then just do what you have to do.  Absolutely.  

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.