Managing and Monitoring CLL Treatment Side Effects

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Topics include: Treatment and Living Well

How important is it to mention treatment side effects to your healthcare team? Are all of those blood draws really necessary, too?  Dr. Nicole Lamanna of Columbia University Medical Center, Physician Assistant Jamie Lynn Gibbons of MD Anderson Cancer Center, and Patient Power founder Andrew Schorr discuss the nature of treatment-related side effects, what your doctor may be looking for, and steps your healthcare team can make to alleviate symptoms. 

Provided by CLL Global Research Foundation, which received support from AbbVie Inc., Genentech Inc., Gilead Sciences, Janssen Pharmaceuticals, Inc., Pharmacyclics, Inc. and Teva Pharmaceuticals.

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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:       

So now we're moving into the age of more oral therapies.  So we have people who have been on ibrutinib (Imbruvica) or idelalisib (Zydelig), or there may be others.  So you have a job.

Your job is to take a powerful medicine, or maybe even ultimately a combination of medicines, to do your part.  It’s not where we all just went, and we had the infusion, and they administered all the medicines, and we went home.  So that’s part one.  So first of all, taking the medicines as appropriate.  But the other is reporting what’s going on for you.  Now, Nicole, I want to ask you.  These powerful medicines that have been coming out, as well as we knew with the infused therapies, they can have side effects.

And they vary for people.  Not everybody's the same.  And also they can develop over time.  So, for instance, even with some of the newer medicines that were approved last year, you have to watch for certain things, right? 

Dr. Lamanna:      

Absolutely.  This is a big teaching point in my clinic, as well.  So whether you're on a clinical trial or not on a clinical trial with the agents that are approved, this is a big deal.

Because I get worried that people go: oh, great it’s a pill, so I can take it, and I'll see ya’ three months from now.  That’s not the case.  We’re very concerned about the—some of these side effects are potentially very hazardous.  I actually am very old-fashioned, and I'm bringing you in actually the very next week to just go over and review again side effects and making sure that you're handling the first five days of the pill okay, that you're doing okay.

So there are potential side effects that you have to be reminded of.  And yes, we want you to go and enjoy your life, and the whole point is to maintain quality of life when you're on an oral therapy.  But that doesn’t mean we have to—we want an open dialogue, because some of these side effects can happen later, and we want to know about them.  And so we try to educate folks about all the potential side effects, so they know to call, or they don’t have any doubts about calling even if it’s minor, because then we can just follow up with them the next day.

So it’s really, really important.  People call them non-chemotherapy.  But as I tried to point out before, chlorambucil (Leukeran) was the oldest oral chemotherapy we had for CLL.

And that was oral, too.  So I don't like to call them—I don't know what term you want to use for them, but they still have side effects.  They’re still—in my view, they are chemotherapy; they’re just different.  They’re more targeted.

Andrew Schorr:                  

And very few—ever listen to those radio ads?  If you’re outside the U.S., you don’t hear any of this. But radio ads for some drugs—usually not these drugs but other drugs—and they list the long—the FDA requires a list of this can happen, and this can happen, and this can happen.

Most of them don’t happen to most people, but some or one of them happen to some people.  So it’s hard to know which is gonna be for you.  So take Imbruvica.  Some people have had to go off it over time, because they had myalgias or joint pain.  For other people, not.  You have to talk about how you’ve been feeling.  Some people might have certain heart issues.  And so one drug might be a better choice for them, and their hearts have to be monitored.

So you have to speak up, whether it’s with Jamie, with your physician; you have to have that, because these are powerful medicines.  This is not just something you get over the counter.  Now you're taking it.  You have to tell them, because you're not in the clinic where you're getting the infusion, and they’re watching you right then.

Jamie Lynn Gibbons:       

I just want to touch on another thing.  We speak about side effects, and I think patients always think that they will be feeling them.  But you have to also keep in mind, especially if you're taking an oral agent, that’s being metabolized.  It’s going through your kidneys, it’s going through your liver.  We ask patients to get blood work a lot.  And I don't think patients really realize what we’re looking for or the importance of that.  Because you might have your liver enzymes shooting through the roof, but you're feeling fine.

And for us, that’s very important because we’ll need to hold your drug or dosage adjust.  So even if you're feeling fine, it’s important to go to those appointments even if you think: oh, I feel great; why do I need to go waste my afternoon, take a couple hours off work today to get my blood drawn?

Because you might not see that, but we will pick up on that, and that’s very important for us.

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 February 19, 2016