Andy’s Story: How I Manage CLL and Multiple Sclerosis

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Topics include: Patient Stories

Andy, a CLL patient advocate who also has multiple sclerosis (MS), shares his story during Patient Power’s recent town meeting in Denver. Following two rounds of treatment—first with FCR (fludarabine, cyclophosphamide, rituximab)and now in a clinical trial with ibrutinib (Imbruvica) —Andy offers his advice for living well. “I do what I can to make sure that my life is as good as it can be to make sure I’mthere for my sons and the rest of my family,” Andy says.

This program was made possible by Pharmacyclics LLC and Janssen Biotech, Inc. Produced in partnership with Rocky Mountain Cancer Centers.

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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. 

Jeff Folloder:

Andy, tell us a little bit about how you came to learn that you were a CLL survivor and what you’ve done to get here today.

Andy:    

As it’s been mentioned before, there are a lot of times you get identified as a patient of CLL by virtue of a regular doctor visit, and that’s what my circumstance was. He called me back and says there’s an abnormality. We need to run the test again. And it was 70,000 at that point. And at that point he also referred me to Dr. Burke. And from there, it was that watch-and-wait, as was mentioned before, and it was however many months, several months, and the numbers kept going up,and the rest of the markers continued to go a little sideways. 

And then it was time to go into some treatment. That worked great. I went into full remission. 

Jeff Folloder:     

What was that first treatment?

Andy:    

It was FCR, quite the cocktail. I went through a lot of the ups and downs with that treatment every 28 days. I lost a lot of weight in between, went up and down and up and down, and ultimately I ended up only needing to do five of the six rounds, which was awesome to not have to do number six. And then I went into full remission, which was great. And then I relapsed.

Jeff Folloder:     

When was that?

Andy:    

That was in November of ’15.

Jeff Folloder:     

Okay, so about a year later?

Andy:    

Yeah. That was in the form of what was mentioned previously, the 17P deletion form of chromosome, and I’m not going to speak very intelligently here, but the chromosome that blocks the growth of tumors in the body. For that, I get to take the three pills every day and virtually for the rest of my life until these two gentlemen to my far right come up with some cures. But for now, I’m living well, if you will, with that, and here I am. 

Jeff Folloder:     

What are the pills that you’re taking right now? 

Andy:    

Ibrutinib (Imbruvica).

Jeff Folloder:     

Ibrutinib. Any side effects to taking the ibrutinib?

Andy:    

Yeah, and it comes and goes, and it’s becoming a little stronger as of lately, but I get a lot of the joint and muscle pain. Throughout the time, the duration that I’ve been taking it, it comes on stronger certain periodsof time, and then it kind of fades away a little bit.

I also have some digestive issues periodically. But through taking other pills, other medicines that can mitigate that a little bit, it’s just a matter of again, living well by eating the right foods and doing the right things for your body. That certainly helps. It’s not going to fix it but do the best you can. 

Jeff Folloder:     

What parts of your daily life right now do you consider living well? What is making you happy right now? 

Andy:    

What’s making me happy is knowing that I’m a survivor, one.

Two, I’m involved in a trial that ultimately is going to help somebody else down the road. I have a family to consider, three boys and of course my wife, as well. Knowing that whatever it is that comes out of this, somebody else is going to gain something down the road. There’s a true upside to that, and really that’s the key to this is knowing that somebody else is going to benefit. Maybe not next year, maybe not 10 years from now, but maybe so. You never know.

Jeff Folloder:     

At the risk of starting some domestic discord, would your caregivers say that you’re living well? Basically, I’m asking what are you… 

Andy:    

You’d have to ask her that.

Jeff Folloder:     

What are you hiding from your medical care providers?

Because you’re male, I’m male, we all hide it when we go in for our checkups, and Dr. Burke says, “So how are we doing today?” “I’m fine.” 

Andy:    

I’m a little more vocal than that. He knows that about me. A lot of it is you’re catching me at the right time of the day, because I have energy most of the time in the morning. Mornings are my best time. I get to the afternoons and I get to early evening, and I’m wiped out. And of course I’m back to working full time. I’m doing eight to 10 hours a day at the office when I can, and it doesn’t happen every day. You do what you’ve got to do. I get to the end of the day, I’m tired. I get to the end of the week, and I’m even more tired. I get to the weekend, and I tend to sleep a lot. 

Jeff Folloder:     

Well, that’s okay. If you’ll remember, when we first introduced this gentleman, we learned that he hadanother issue going on.

You have MS, correct? 

Andy:    

That is correct.

Jeff Folloder:     

Tell us a little bit about how you’re managing both CLL and MS simultaneously, because that’s got to have something to do with the being tired in the afternoon and the weekends.

Andy:    

There are a lot of pills every day. That’s a big part of the management of that, taking 16 pills every morning and then a couple more at night. And then also managing side effects or after effects of having shingles in between the first bout of the CLL and then the relapse, which has affected my right eye, which I can’t see very well out of. So I do a lot of drops and a lot of other things associated to that. The MS for me, and I am incredibly blessed in that I have been with some great doctors.

Dr. Burke included in there has been phenomenal in guiding me in this path. It’s critical in everybody’s future to make sure you have a good relationship with that doctor. The ones that I’ve been associated with have really put me down a good path. And for me anyways with the MS, getting on heavy doses of vitamin D every day have kept me from needing to take the other types of medications associated with MS. I’m in remission for that as well. I don't have any onsets now that I’m on 16 or 2,000 IUs of vitamin D every day.

That obviously is—I’m assuming they’re all connected in some way or another. Again, the two gentlemen to my right can speak to that much more intelligently than I can. But I manage through it, and I do what 

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 August 25, 2017