How Can CLL Patients Boost Their Immunity Safely?

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Topics include: Living With Chronic Lymphocytic Leukemia

What strategies can chronic lymphocytic leukemia (CLL) patients use to prevent respiratory or nasal infections? During this Patient Café segment, a panel of patients living with CLL including Patient Power founder Andrew Schorr, Jay Blatt and Adrian Warnock, shares tips for boosting immunity in a safe way. The panel also explains what precautions to take and why it’s important to consult with your doctor about diet and supplements. 

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc. and Pharmacyclics for their support. These organizations have no editorial control and Patient Power is solely responsible for program content.

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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:          

Well, I've been living with CLL for a long time. I have a chronic cough sometimes, there you go. One of the things, though, that we were worried about, and Esther was part of these discussions, is sinus infections. And we were talking about sinuses a minute ago. And so, Dr. Kipps, who’s another doctor at UC San Diego, he said, first of all, you can be prone to infections with CLL, and in your sinuses, the bacteria can have what he called a pool party. 

So, what do you do about it? Do you just—antibiotics all the time? He said, “You should try a nasal wash, every day.”

Esther Schorr:             

A neti pot.

Andrew Schorr:          

A neti pot, or there’s some other ways. You can get a little squeeze ball. 

Adrian Warnock:        

Yeah, but this is a little bit more, sorry this is not supposed to be product placement, but this is a bit more pleasant than a neti pot. I just spray this. It’s a sort of A-line spray. I find that really, really good.

Andrew Schorr:          

Right, and I have something similar, so I went to the local pharmacy. There’s a little bottle you can get, and you put little saline packets in it, and warm water, and it has a filter, and every morning, I do a nasal wash and guess what, no infections. Now, I'm doing other things, as well like I get immunoglobulin once a month, which my doctor thinks is important for me. But the point is, it’s what I can do, and it’s like what you can do Adrian. This is something we can do. We may be prone to nasal infections that could be respiratory infections, could be pneumonia, which is bad news for us with CLL. And you’ve had pneumonia, right, Adrian?

Adrian Warnock:                                

Yeah, that’s right, and throat infections, yes.

Andrew Schorr:          

I’ve had it, too. So, this is serious business for us. So, these are things, whether it’s diet, whether it’s exercise, whether it’s communication about hot flashes, all of these things. And Esther, when I speak up about something, you normally say, “Call the clinic,” Right?

Esther Schorr:             

Yes. And the calling the clinic is two-fold. One is, I agree completely with everything everybody said, the kind of thing that you’re doing, Jay, makes perfect sense. You’ve studied it. You’re taking an approach. 

The only caution that I would give Andrew, and especially since I made a mistake early on of doing something we shouldn’t have done, is don’t take on some kind of a supplementary or what you think is a complementary remedy, because you’ve read about it, because five people said it works for the, That if you’re gonna take something on, at least discuss it with your doctor. So, I’ll just tell this quick story, when Andrew was first diagnosed, one of the things we did, besides finding a specialist, we went to a naturopath. Remember this, Andrew? And he said, “Oh, you need to take mega doses of,” I don't know what it was, Vitamin A or D, it was one of the vitamins. 

And then when he finally got to see the specialist at MD Anderson, he said, “So, what supplements are you taking?” and he said, “Well the one thing I am doing is, we’re juicing,” which was okay, “But I’m taking this mega dose of whatever.” And he said, “You know, I think you should probably stop that, because there’s studies that have recently come out that say that it could cause the proliferation of CLL cells. It was like “Eh.”

So, I just tell the story, because the kind of thing you’re doing, Jay, sounds like you’re done a lot of research. I'm assuming your physician knows about it. Those kinds of things are good, to complement whatever else is going on, but to make sure that he’s on the same page about whether there’s some potential downside to it.

Jay Blatt:                     

Absolutely. I’ve gotten some—somehow, I’ve gotten some kind of notoriety, you know, and that’s not good or bad. But I’ve had an average of two emails or phone calls a week, people literally asking me, “What can I do?” So, I'm a year away from becoming a counselor, a macrobiotic counselor. So, I've been studying this for four years. So, I tell him, from a patient’s perspective, and some of the things they’re doing are just crazy. 

And I literally say, “Look.” Always preface it with, “Discuss this with your CLL specialist. And if you are doing something, chart your results, and see, on a quarterly basis, how your liver function is doing. When I was first diagnosed, my liver was, my ALT was 92, which is 50 points too high. Within six months, it went down to 30, which was normal. I had diverticulosis. I had acid reflux disease. That’s all gone now. But it didn’t happen overnight, and you do things gradually. And every step you take, you check with your doctor. 

And candidly, I have a wonderful doctor. I don’t want to mention his name, because I don’t wanna—but he is the tops in my opinion. And he does not necessarily believe that what I’m doing is going to affect my CLL that much, but what he does like is the results. He likes seeingme healthy. He likes seeing my blood counts looking so good and stable, and I don’t expect a medical doctor to believe in the dogma that I believe in. I'm using that medical doctor for his knowledge, and it should be a collaborative-type thing.

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 June 25, 2019