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MPN Patient Says, "Clinical Trials Kept Me Alive"

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Published on February 28, 2020

Key Takeaways

Myeloproliferative neoplasm (MPN) patient Jeanie Fuelberg and her care partner Ben share their clinical trial experience and offer words of advice to the Patient Power community.

Watch as Jeanie discusses her 15+ year MPN journey, including participating in the original ruxolitinib (Jakafi) clinical trial in 2009 and how Ben supported her through it.

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Transcript | MPN Patient Says, "Clinical Trials Kept Me Alive"

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.

Andrew Schorr:                     

Hello, it’s Andrew here in Austin, Texas. We’re attending a conference and some of my friends who are patients have come along. This is Jeanie Fuelberg, did I get it right? From Dripping Springs, Texas. And her husband Ben. Jeanie is going through the MPN gauntlet, right? ET, PV, then myelofibrosis. First of all, how you doing?

Jeanie Fuelberg:                        

Good.

Andrew Schorr:                     

Okay. Now, we are talking people about clinical trials. You had earlier been on ruxolitinib (Jakafi), right?

Jeanie:                        

Yes, yes.

Andrew:                     

But now you are in a trial for what?

Jeanie Fuelberg:                        

I think it’s to sort of backup Jakafi. Jakafi had begun to kind of, I don’t want to say not work, it’s still working, but this is to help bring up my hemoglobin counts.

Andrew Schoorr:                     

Okay, all right.

Jeanie Fuelberg:                        

And probably other things, too.

Andrew Schorr:                     

How’re you doing so far with it?

Jeanie Fuelberg:                        

I’m doing great, no negative anything about it.

Andrew Schorr:                     

Okay, what would you say to people about being in a clinical trial? What would you say just to the MPN audience? Go ahead, tell them.

Jeanie Fuelberg:                        

Clinical trials have basically kept me alive. In 2005, I was given four to five years to live, and here I am. And it’s because, well of course I had wonderful doctors and God, but also these clinical trials have kept me alive. And I’m so grateful.

Andrew Schorr:                     

Okay. So, this is your care partner, Ben.

Jeanie Fuelberg:                        

Yes.

Andrew Schorr:                     

Ben, what would you say to—I mean, you had to support her in these decisions. I’m sure you talked about it. What would you say about the role of the care partner as people get into this world of experimental medicine and choosing whether it’s right for them?

Ben Fuelberg:                           

I think it takes a lot of communication between the patient and the caregiver. Personally, I think it is all very worth it. It has been a journey that has been interesting, but we’ve been so blessed. We’ve been so fortunate to get in to the early Jakafi test and now in another early test and all of them have been very effective. She’s able to function well, she’s, I mean, it’s all worth it. It takes time, it takes effort, but it’s all worth it.

Jeanie Fuelberg:                        

Absolutely.

Andrew Schorr:                     

So, let me just point one thing out, I went on Jakafi, or ruxolitinib, in 2012, it had been approved. But you went on Jakafi when?

Jeanie Fuelberg:                        

2009.

Andrew Schorr:                     

As a trial patient. If she had not been in the trial and other people like her, there would have been no Jakafi for me. So, first of all I’m going to give you a big kiss.

Jeanie Fuelberg:                        

Oh. Thank you.

Andrew Schorr:                     

Thank you so much.

Jeanie Fuelberg:                        

Thank you.

Andrew Schorr:

So, this is what it’s about, folks, is really paying it forward. She may be doing that now with another drug that she’s getting benefit from that may be approved someday. And it’s because people have the courage to be in trials. Thank you so much, Jeanie. 

Jeanie Fuelberg:                        

Thank you.

Andrew Schorr:                     

Ben, maybe someday I’ll make it to Dripping Springs.

Jeanie Fuelberg:                        

I hope so.

Ben Fuelberg:                           

You should do that.

Jeanie Fuelberg:                        

Always welcome.

Andrew Schorr:                     

Okay. Okay. Thank you. All right, all of us in Austin, Andrew Schorr reminding you that knowledge and looking into clinical trials can be the best medicine of all.

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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