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CLL With an Active Lifestyle: James Miller’s Diagnosis Story

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Published on July 30, 2019

Meet James Miller as he shares his story navigating through uncertainty following a chronic lymphocytic leukemia (CLL) diagnosis during Christmas of 2005. James also discusses his love for running and golf, and how he maintains an active lifestyle after participating in a clinical trial.

This program is sponsored by Pharmacyclics. This organization has no editorial control. It is produced solely by Patient Power.

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I consider myself a pretty well educated CLL patient but there was much presented today that was new to me, and much more that expanded upon what I already knew or filled in missing bits of information.

— CLL Event attendee

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Transcript | CLL With an Active Lifestyle: James Miller’s Diagnosis Story

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.

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:                      

Hi, James. Welcome to the program.

James Miller:              

Hi. How are you?

Andrew Schorr:          

I’m good. I’m happy to say. So, James, let’s see if I have your story right. So, first of all, you were a practicing attorney in Los Angeles in a law firm, have a routine blood test in 2010, and then find out something’s out of whack, and at Christmas dinner, you’re told—no, 2005. Which year was it?

James Miller:              

It was 2005 at Christmas. I went in for a general physical, and then, at Christmas dinner, when I’m about to toast everybody, the doctor called. It was a Sunday night, and that just never happens. He called me and informed me I had something called CLL. And so, from there, the journey began.

Andrew Schorr:          

A lousy Christmas present. Okay, so, you went several years before you had treatment, and then you did have the FCR, like I’ve had and Carol had. Typically, people would have six cycles. You just had three, right? And then, it didn’t last.

James Miller:              

Yeah. Well, an intervening fact was after I got diagnosed in 2005, I was on watchful waiting for five years, until 2010. In 2010, I acquired a 17p deletion. At that point—which, as I understand it, is the worst form of CLL—and I became a—I won’t call it—an “experimental patient” or whatever. I’m number eight of eight experimental patients, or whatever they call them.

Andrew Schorr:          

Clinical trial patients.

James Miller:              

Clinical trial patients, right. I still am, up to this day. So, I’ve been given a number of treatments that are outside the norm.

Andrew Schorr:          

Okay. So, you’ve had FCR, but you’ve also had a drug that’s called venetoclax or Venclexta, and you were in a trial for that, and that worked for quite a while, and then you were able to stop treatment, and now you’re in treatment after a 14-month interval of no treatment, I believe. You’re in treatment again.

James Miller:              

Yeah. I started FCR—excuse me, Venclexta—and after—six months or nine months, I was –

Andrew Schorr:          

MRD?

James Miller:              

MRD negative, FISH normal. He did two bone marrow biopsies—one each in my left hip and right hip—to confirm all that. During this period of time, I believe the doctor indicated that they had, in some of the clinical trials he supervised, several of the patients that went MR- negative, FISH normal, and they continued to take the drug and built up a resistance to it. So, he took me off the drug, and I was off the drug for about 14 months before it came back.

Andrew Schorr:          

You’re on venetoclax and obinutuzumab, or Venclexta plus Gazyva are the trade names, in combination, and you’re doing well, and you told me you went running today or yesterday.

James Miller:              

Yesterday, I went running. I had a general physical with the same doctor who had diagnosed the CLL originally, and he said, “You need to start exercising, and don’t drink any sodas.” Apparently, they have something in them—7-Ups and Pepsis—that aren’t good for the bones. So, I used to be a runner. That was one of my first loves, and I ran 10Ks and marathons. So, I went out and ran for 20 minutes, and it felt great.

Andrew Schorr:          

James, you have five grandchildren, right?

James Miller:              

Yes.

 

Andrew Schorr:          

So, James, it started at Christmas dinner, led ultimately to treatment, clinical trials, treatment, remission, treatment again now—you have pills to take and infusions to get sometimes as well. How have you navigated the uncertainty of this? Do you see it as a rollercoaster? How do you see it?

James Miller:              

You compartmentalize. I’m an expert at it. Being an attorney, I had to deal with a lot of different things. I was a criminal prosecutor in the L.A. DA’s office for three years and private practice, and a lot of demands were being made upon me, so I took one problem at a time, just focused on that, and forgot about the rest until I had to deal with it. 

And so, when I was diagnosed, I didn’t really know what it meant. I didn’t know what the word “chronic” meant until a couple years ago. So, it was just something that came up, and I had to show up. And so, my role is not to sit there and worry and try to do my own research or anything. I’ve got one of the best CLL doctors in the world. That was the best thing I did for myself because I did that myself by going online and getting a referral from a local guy. So, the only time I focus in on it is if I have to go do an infusion or have an appointment, that kind of thing.

Other than that, it really has not affected me. I still play golf regularly, I retired in 2014 after 40 years of practice, play golf two or three days a week, now I’m starting to run again as of yesterday, which was a real love of mine in my youth, and I’m just very positive. I don’t sit there and worry. It is what it is. My job is just to simply show up for the appointments. The one counterbalance is it seems that I’m a doctor’s office an awful lot right now because I have—like every CLL patient, I have skin cancer.

I think I’ve had in the mid-50s Mohs surgeries, and I go in for these full body scans every 60 days. One time, he hit me with liquid nitrogen 128 times. And, I’ve had about 55 Mohs surgeries. So, that takes three days. That’s a bit of a burden, particularly when Dr. Kipps’ appointments are down in San Diego and travel like that. That’s the only weight on my shoulders, is just taking away from a little bit of my retirement, if you will. But, on the other hand, it beats the alternative.

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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