Allen Melançon: Why Should Patients Consider a Clinical Trial?

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Topics include: Patient Stories

Why should patients consider a clinical trial?  Meet Allen Melançon, a 17p CLL survivor who was diagnosed in 2012.  Visiting with Patient Power founder, Allen tells his story of life with CLL and how he came to find the right treatment for him. After coping with medication side effects and switching treatment approaches, Allen explains how he is doing today. 

Provided by CLL Global Research Foundation, which received support from AbbVie Inc., Genentech Inc., Gilead Sciences, Pharmacyclics, Inc., Teva Pharmaceuticals and TG Therapeutics. In partnership with The University of Texas MD Anderson Cancer Center.

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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. 

Andrew Schorr:

Hello and welcome to Patient Power.  I'm Andrew Schorr.  Well, I'm happy to be with a new friend who is living with CLL.  His first name is Allen.  He has sort of a Cajun last name, so I'm going to let him say it.  

Allen Melançon:

It's Melançon. 

Andrew Schorr:

Okay.  Allen Melançon. 

Allen Melançon:

That's correct. 

Andrew Schorr:

Okay.  And Allen, you've been living with CLL since what year? 

Allen Melançon:

Since 2012. 

Andrew Schorr:

Okay.  And it was like a routine blood test. 

Allen Melançon:

Yes.  I had no symptoms whatsoever.  I went to my doctor, and he—when I went in for the follow?up after the blood test he asked me if I had some type of infection.  I told him no.  He said, well, your white blood cell count is very elevated.  He said, I'm going to send you for another blood test.  And he did, and it came back high again, and that's where my journey started. 

Andrew Schorr:

Okay.  Now, your journey has included a few different medicines. 

Allen Melançon:

Yes.  

Andrew Schorr:

So the first one was one that's one of the breakthrough medicines that's come out in the last few years, Imbruvica, or ibrutinib. 

Allen Melançon:

That's correct. 

Andrew Schorr:

And that worked for you for a while.  

Allen Melançon:

Yes.  It worked very well.  I started that in 2013, towards the end of 2013, and I was on it for about three years.  And after about two years, I pretty much plateaued out, but my white blood cell count was still pretty high, and it never dropped for like a year. 

Andrew Schorr:

Okay.  Now, you were in a clinical trial. 

Allen Melançon:

Yes. 

Andrew Schorr:

And then you were in a clinical trial that combined one of these immunotherapies.  They've been trying to figure out does it work for CLL.  The one you were on is called nivolumab (Opdivo). 

Allen Melançon:

That's correct. 

Andrew Schorr:

Did that pan out for you, or it wasn't giving you good result? 

Allen Melançon:

No, it was doing fairly well for me.  It did bring my blood counts down but still not, not to where it needed to be.  But after about three to four months, I started developing aches in all my joints, my knees, my fingers, my wrists, my elbows. So the doctor decided to take me off of that and put me on the trial that I'm on now, which is venetoclax, or Venclexta. 

Andrew Schorr:

Right.  And you're on that, and I believe—did it turn out that they identified this chromosomal abnormality 17p? 

Allen Melançon:

Yes. 

Andrew Schorr:

Which is what that drug is approved for… 

Allen Melançon:

Yes. 

Andrew Schorr:

…for people with that.  So how are you doing on Venclexta?  

Allen Melançon:

It's a miracle drug.  I feel normal.  My energy level came back.  I'm able to work full?time.  No side effects whatsoever, so it's doing very well for me.  My blood counts are normal. 

Andrew Schorr:

Allen, you decided to be in a clinical trial.  A lot of people are hesitant about clinical trials, or they don't even hear about them.   

Allen Melançon:

That's right. 

Andrew Schorr:

Why did you choose to participate in a clinical trial? 

Allen Melançon:

Well, I felt that it was the best option for me to get into a clinical trial, because you're on the edge of the best drugs. And Dr. Keating here at MD Anderson recommended that I join one of the clinical trials, and I thought that that would be a good fit for me. 

Andrew Schorr:

What would you say to other patients?  Would you say they should consider being in a clinical trial? 

Allen Melançon:

Sure.  I think they should consider it, because it's really helped my life. 

Andrew Schorr:

Yeah, it really, really has.  What's your thought about the future now?  So you're feeling good.  I know you go hunting and fishing… 

Allen Melançon:

Sure. 

Andrew Schorr:

…you do what you want.  How do you see the future, even though you've been living with CLL? 

Allen Melançon:

I see my future as being cured.  I mean, I feel that well.  I feel better than I've felt in many years.  I can do the things I want to do.  I even started mowing my own grass. 

Andrew Schorr:

All right.  Well, and you have children and grandchildren, right? 

Allen Melançon:

Yes.  Got two sons, and I've got three stepdaughters, and I've got four grandkids. 

Andrew Schorr:

Wow.  Well, all the best to you for a long life with good health. 

Allen Melançon:

Thank you. 

Andrew Schorr:

And doing all the hunting and fishing and everything you want to do.  Allen is joining us here.  He lives outside Houston, and you see now he's been following modern medicine and getting what's right for him, and it's made all the difference. 

Make sure that that's what you get too.  Ask questions and see if one medicine isn't working out or not working out any longer, is there something else.  Be an advocate for yourself.  I'm Andrew Schorr.  Remember, knowledge 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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Page last updated on March 27, 2017