Andrew Schorr talks with patient advocate, Voncille “Peppe” Fryou about her journey with cancer and clinical trials. She begins by explaining that after 10 years without an accurate diagnosis, Peppe finally found out why she was tired all the time…Primary Myelofibrosis (PMF). To beat this disease, she has been enrolled in four different clinical trials, and is now currently participating in the PRM-151 trial. One thing she has learned from her experience is that patients need to be active participants in their studies. Watch the video below for Peppe’s full story and advice on clinical trials.

Persevering Through Clinical Trials from Patient Empowerment Network on Vimeo.

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Andrew:    

Peppe, you’re from where in Louisiana?

Peppe:    

Lafayette, Louisiana, which is on the Gulf Coast.

Andrew:     

And you were diagnosed with primary myelofibrosis just like me right off the bat.

Peppe:

Um-hmm.

Andrew:     

How did it present itself?

Peppe:   

I was tired all the time. For years and years, I was tired. And we did all sorts of tests, and they would come back negative. The only thing they ever came back with was Epstein Barr virus, which they said I had chronic fatigue syndrome.

Andrew:  

So you went how many years before you got an accurate diagnosis?

Peppe:  

Let’s see, probably 10 years.

Andrew:

So it can happen. So you have this diagnosis, and you were very sick.

Peppe:

Yeah.

Andrew:

You eventually got over here to MD Anderson, Dr. Verstovsek. And you’ve been in a number of clinical trials.

Peppe:

Yes.

Andrew:

And you’ve had highs and lows with those. It’s not always been perfect at all.

Peppe:

Exactly. Sometimes, particularly me, I started off well, but didn’t end out very well. I sort of started off good, and then I just started going downhill. And so Dr. V says we’re going to try something else. We’re going to try something else. Are you for that? Yeah. We made a pact. He said as long as he’s being a doctor that I have to stay here and be his patient. So I stayed on his butt all the time. You got to keep me alive, doc. Get busy. And he did.

Andrew:

So you’re on one of these trials we mentioned, the PRM-151 trial.

Peppe:     

Yes.

Andrew:  

What does that involve?

Peppe:     

I get an IV. I go through my clinicals. I get an IV. And I go home. No side effects, nothing.

Andrew: 

Is this an infused medicine?

Peppe:  

Yes. Several years ago, I had a port put in because of some of the medications that would make my counts drop. I needed blood transfusions. And the vein thing got old real fast because it was years I needed the transfusions. So I had a port put in. The doctor did a botched job with that. I had another port put in. He did a terrible job with that. So I came to MD Anderson and said put me a port in. And now, I have an excellent port, and everything works fine. And it’s just hook me up, and –

Andrew:    

One last thing is so you’ve had quite an adventure with myelofibrosis. What’s your view of today and the future right now?

Peppe:     

Oh, we’ve come so far. I mean, like I said, this is my fourth study. Plus, I was on the medication Jakafi. It really wasn’t – he may disagree with me. It really wasn’t a good drug for me. And I put on 50 pounds. And I’m just too little for that. But I’ve gotten that weight off. But I think that it’s important that patients stay active in the studies. I’ll tell you why I agreed to team up with Dr. V. I had a friend years ago that had Hep C. And she got in on a study someplace in New Orleans, Tulane or some place. And she stayed on that study through hell and back. She fell asleep at her desk. But if she missed days of work, they were going to back off on her medication. And her best survival rate was taking it full force. So she did it. She did it. She’s still alive today. And so that’s my hope and my dream for all of us is that our experts are going to find what it is that we need to be cured or control it.

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