[ ] Expert Advice on CLL and Supplements

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Topics include: Living Well and Treatment

When it comes to CLL and supplements, what’s safe? Could supplements help or harm CLL patients? In this segment, Patient Power founder Andrew Schorr asks for advice from an expert panel, including Dr. Michael Keating, Dr. Nicole Lamanna and Dr. Zeev Estrov. Learn why Dr. Estrov ends the conversation with a poignant quote, “Google is very good for self-education.  But Google is a very bad doctor.”

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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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:    

So well, first of all, I just want to ask you, I asked you many years ago, this is probably about 19 years ago, somebody said I should drink carrot juice.  And you talked about things that could get in the way.

It could affect the drug therapy or whatever the course of treatment was that you, as a cancer expert, were recommending for me. So could we talk a little bit about things? And you’ve had however many years of people asking you this.  What do you say to people about whether it’s supplements, juicing, all kinds of things. And then I’m going to ask Jamie about communication, too, about this. But how about just from a treatment point of view, what we can do ourselves that’s to the good or maybe not. 

Dr. Keating:         

I think that when people are on any treatment, they shouldn’t take any supplements or extraordinary amounts of anything. I had a patient who his wife loved him very much. And she was juicing with carrots. And then he strolled in the door, and he looked orange.  And his spleen had increased from about 3 centimeters under the ribs down to 9.

And his white count had gone up.  And there are some patients that have actually retinoid receptors on their leukemic cells.  And it made them grow. And when she stopped loving him so much and stopped giving him the juice, everything came back to normal. And the other thing is that things that are as simple as grapefruit juice have very marked effect on metabolism of a lot of different drugs. So unless you’re absolutely sure that the drugs that you’re taking are not affected by grapefruit, just don’t drink grapefruit, particularly when you’re on any of the treatments. Certainly, for ibrutinib (Imbruvica), you don’t go on grapefruit juice. 

So by and large, it’s a very simplistic thing that I say. And it’s trite, but I still believe it.

You eat what you want to eat in moderation and drink what you want to drink in moderation.  And don’t take other agents that we don’t know what they do in your body, because none of these alternative therapies have really been studied generally—and certainly not in a situation where there’s an impaired immune system. And so basically do that, and do the things you like to do and not what you’re told you should do by a spouse or others. And that was wrong. 

Andrew Schorr:                  

So, Nicole, I have a question for you about this. So any of us who go in a shopping mall, there’s often one of these vitamin stores or something like that.

And they usually have a big poster out front, immune building. And we know we have compromised immune systems. We talk about that allowing the cancer to develop, etc. So it sounds good to me.  And often, they say, you start to talk to someone, and they say the drug companies will tell you this.  There’s been a conspiracy for you not to know that this bottle of pills or on the Internet as well, is going to boost your immune system. And people are always trying to sell you stuff if you hung around the Internet, too. 

So is there a deep, dark secret that there is something I’ll find in that store on the Internet that’s going to restore my immune system? 

Dr. Lamanna:      

So the Internet is very good, but it’s also very dangerous.  You can Google anything, and there are cancer diets. There’s cancer this, there’s cancer that.  But the truth of the matter is we haven’t tested not only in all cancers but then in specific cancers, people under different circumstances, they may be on other concomitant medications or chemotherapy treatments. We really don’t know. 

And so don’t get me wrong, many cancer treatments have come from plants and alternative forms of medications. But we don’t know how their interaction is. So I do the same thing with my patients that Michael does with his. I tell them if they’re not on treatment, and they actually want to dabble in some vitamins that they need to go through that list with me. That I need to, actually, because everything you process, whether it’s over the counter or not, needs to go through your kidneys and your liver. And your other organs need to metabolize these agents. And somebody should be keeping an eye on those organ functions. 

And on chemotherapy, for sure, absolutely not.  So it’s absolutely important that supplements or juicing or something that you buy from the drug store that you’re saying or the specialty shops that you actually discuss that with your practitioners, because it really is vital, because there are interactions. I just had a woman that absolutely you could raise your liver enzymes or your kidney function tests by taking alternative medicines that you didn’t know may harm your organs. And you’re taking them in high doses. So I agree, moderation in everything. 

Andrew Schorr:                  

So Dr. Estrov, so any of the stuff, even though it’s not a prescription medicine, has affected on your body, right? And we often don’t pay attention maybe enough to what’s going on.

Dr. Estrov:           

So one thing, the substances are not FDA approved. Nobody is monitoring it. So somebody went and tested. What’s in there, and what’s on the label? There was a huge discrepancy. So you think you are taking something you don’t—number one.  Number two, we don’t know. Nobody studies it. When we do clinical trials, we test things all the time. Nobody is doing it. So if you do something extreme, and then you don’t tell your doctor because you don’t want to be embarrassed, it’s terrible. Suddenly, a patient shows up, and his liver function test is extremely abnormal.  And then try to figure out what happened.

And we have to be very, very careful.  Now, one thing, Google is very good for self-education.  But Google is a bad doctor.  Learn as much as you can and then consult with your medical team. 

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 21, 2016