Skip to Navigation Skip to Search Skip to Content
Search All Centers

What Do CLL Patients Need to Know About Coronavirus?

Read Transcript
View next

Published on April 7, 2020

Key Takeaways

  • If you have a CLL diagnosis, your immune system is already imperfect, and you are at a higher risk for infection—even if you are still in the watch-and-wait phase. 
  • Cancer centers are assessing appointments on an individual basis: Can the treatment be postponed? Can the visit be done with telemedicine? Is the risk of missing the treatment greater than the risk of travel?
  • Unfortunately, there is nothing you can do or take to boost your immune system. But washing your hands, avoiding crowds and being kind to your body—by getting enough sleep, eating healthy foods and managing stress—will help.  

The current uncertainty surrounding the COVID-19 virus has left chronic lymphocytic leukemia (CLL) patients wondering how they should handle their upcoming treatments and what they should be doing, if anything, to boost their immune systems right now.  

Dr. Sydney Hester, an infectious disease specialist from Nashville, Tennessee, leads the discussion by answering common questions and explaining how cancer centers are evaluating upcoming appointments on a patient-by-patient basis.

Dr. Hester is joined by Dr. Ian Flinn from Tennessee Oncology, and nurse practitioner Camille Ballance. Watch now as three experts offer advice and best practices for staying healthy during this unprecedented time.

This program is sponsored by AbbVie, Inc., Genentech, Inc. and Adaptive Biotechnologies. These organizations have no editorial control. It is produced by Patient Power in partnership with Tennessee Oncology, Bag It, and CLL Society. Patient Power is solely responsible for program content. 

Featuring

Transcript | What Do CLL Patients Need to Know About Coronavirus?

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.

Recorded on March 28, 2020

Esther Schorr:
Hi there, this is Esther Schorr. On March 28th, Andrew and I co-hosted a virtual town meeting. Let's listen in as Dr. Sydney Hester, Dr. Ian Flinn and Camille Ballance discuss infections and CLL.

Andrew Schorr:
There are many treatments, and it's really become personalized medicine, but help us understand why now as we think more about infection versus maybe solid tumors or some other cancers, it's a little more worrisome. What is it about CLL that sets us up for infection?

Dr. Hester:
That's a great question, Andy. So, as far as CLL, there are several different aspects that affect the immune system that really cause problems with leading to different infection risks that we see. One of them is just the inherent immune defects that a patient with CLL acquires just by having problems with their lymphocytes.

As far as the immune system, one thing that you have a problem with is forming gamma globulins, you can get hypogammaglobulinemia, which affects about 25 percent of people, right at the time of their diagnosis. And in the midst of, as they're living with CLL, almost two-thirds of patients can have problems with their gamma globulin levels. And what those do is they basically help your body produce antibodies which help fight different types of infections, especially bacterial infections. Another problem is you can have abnormal T cells and B cells, which are what your lymphocytes do.

Those can lead to problems with different viral infections, and sometimes it's fungal infections. You can have abnormal T-cell subsets and have very low B cell and defects in your B-cell populations. And because of those we can see different infections that patients can be susceptible to. That I'll get into in just a minute. And then thirdly, you can see defects in something called complement, which also is another way that your immune system can fight various types of infections, including just neutrophils, which people hear about. They talk about your ANC or absolute neutrophil count, so that can be affected with CLL. Your white blood cell count can be high. It can be sometimes normal, and sometimes it can be low depending on where you are in the spectrum of disease and your chemotherapy treatments that you're getting. So all of those inherent immune defects can lead to patients experiencing different types of infections, especially those of the mucosal membranes—so respiratory infections, sinus infections, pneumonias, urinary tract infections, and even cellulitis or skin and soft tissue infections.

Andrew Schorr:
Wait, so let me just stop you for one second just so we all get it. So if you are diagnosed with CLL, even at time of diagnosis and you haven't had any treatments and you're in our watching worry phase, perhaps, your immune system is not perfect.

Dr. Hester:
Correct. That is correct.

Andrew Schorr:
Okay, go right ahead. Go ahead. You were going to tell us more.

Dr. Hester:
There is a spectrum, just like everything in medicine, and kind of in life is there's a spectrum of disease. So someone who may come in very healthy and not have any other health conditions or chronic health conditions, and may live a very healthy and active lifestyle and not be at risk of having frequent colds and be able to work out and work full-time and do all the things they want to with their family and friends. And then there may be people who walk into their diagnosis of CLL with having several other chronic medical conditions. Then all that plays into how effected your immune spot response is to various infections.

Esther Schorr:
And so, Dr. Hester, I want to interject a question that has come up not only just now from somebody in our audience, but we're getting that question in the context of the coronavirus. If a patient is either in active treatment for CLL, or they're on maintenance and they're supposed to be going into the clinic for regular checkups, and some of them sometimes have to fly to a medical center. The question really is how do they weigh the risk/benefit of keeping those appointments? What should they do in trying to decide that?

Dr. Hester:
Esther, that is a great question, and that is something that I think every cancer center is dealing with right now and trying to work with each patient individually with their treatment plan, whether things can be placed on hold, whether, if they're just having an appointment, if it can be on the telephone or telemedicine, a virtual visit, sort of like what we're doing right now? Or is it really impactful and going to be necessary for the patient to come with all the risk associated? With either travel as you mentioned, Esther, to that doctor's appointment even just coming to the doctor's office itself, are there a lot of things that are being done across the nation and I would say even across the world to make sure that office visits are as safe as possible for patients to come and continue to get the care that they receive.

But they're probably going to get a phone call before even coming to ensure that they're not having any worries, some symptoms of the coronavirus and make sure that it's safe for them to come to that office space if they're coming to the physical location of their doctor's office to have any type of treatment. And then there's a separate conversation of do we want to keep you on treatment? Do we need to make any adjustments, or does that need to be placed on pause for right now because of what's going on in the world?

Esther Schorr:
So it really is between you and your doctor?

Andrew Schorr:
Yeah, it is individual.

Esther Schorr:
Yeah.

Andrew Schorr:
Let me ask Ian Flinn a question, Ian. So we have many patients now who are on oral therapies, and they're taking it at home. And maybe things are going well, and that's the story we will hear about with Nate and with John. So is there any reason that you know of that their medicines should be changed or stopped while they're worried about the coronavirus? Ian.

Dr. Flinn:
I think it's back to the individual. And some of these therapies significantly improve your immune system. And so if that's the case, then you wouldn't want to prematurely stop them. On the other hand, there's a balance. Sometimes they can lower your neutrophil count and if you're having problems with that, it might be important to consider pausing just for this period of time that, that we're in. So I don't think there's a blanket answer here that you can say for all patients, it's really based on the individual—and not only that, but where the person is in the treatment cycle, if they've been on it for a long time and probably don't need to do anything different with some of these new targeted therapies.

Andrew Schorr:
Okay.

Esther Schorr:
I have one other follow-up question, Andrew. And this could either be for Dr. Flinn, for any of the experts. So a number of people have asked, is there anything I can do to boost my immune system? More vitamin D, more sun, are there other oral treatments, UVB light, zinc?

Andrew Schorr:
Let’s ask Dr. Hester that.

Esther Schorr:
Yeah.

Dr. Hester:
I get that question every day.

Esther Schorr:
I'm sure you do.

Dr. Hester:
The short answer is no. There's not anything you can take or do to boost your immune system per se. But I think there are a lot of very good practices and wise things that we can all do to make sure we're not putting ourselves at increased risk, and those have been clearly stated not only through the CDC but through a lot of media sources washing our hands frequently.

This sounds really trite, because we say it all the time, but it is the cornerstone of how I live every day as an infectious disease specialist, seeing bad infections every single day, affecting people, washing your hands properly with soap and water. If you don't have that ,using hand gel of 60 percent alcohol or more, social distancing, staying away from crowds and folks, especially for our cancer patients with CLL, really avoiding being around other people who are sick and certainly not being in large groups of people. Kind of hunkering down right now.

Those are probably the most important things that you could do, but unfortunately there's not a more vitamin C or more medication that one could take to boost the immune system per se.

Andrew Schorr:
Dr. Hester, some of the people we've been talking about in Patient Power doing a whole series about the coronavirus specifically. The doctors have said, “Get sleep, try to lower your stress.” So stress, sleep, eating right, exercise, all of those things help you be stronger.

Dr. Hester:
Sure. Just taking care of yourself and I'd say being kind to your body is good practice all the time and especially when we're in the midst of—where there's a lot of infection risk around us, whether it's the flu season or COVID-19 season.

Andrew Schorr:
Okay. One other thing then, many people with CLL, I was diagnosed at 45 and, Nate, who you're going to meet was pretty young when he was diagnosed, but many people are 70 or 80 and they may have other conditions as well—diabetes, cardiovascular disease. So I know these are yet other factors. Would you suggest that people with CLL, and we'll ask Camille and Dr. Flinn as well, stay close to home, stay home if they can?

Dr. Hester:
Absolutely. Absolutely.

Andrew Schorr:
Okay, doc. Well, Camille, what are you telling people we want to get you in the discussion? I'm sure you're getting calls all the time. They say, “Oh, my God, I'm a CLL patient, yeah am taking my pills at home.” It varies right now around the U.S. and depending upon what country we have our viewers from what the policies are vary, what are you telling people, Camille?

Camille Ballance:
Stay at home. I'm telling people to stay at home if they can. All of our CLL patients are higher risk—some are more than others, if they're neutropenic or on active therapy and they're not cruising right along. So I really tell them to stay at home. I've been telling them not to travel for a while, even before it got so bad—but when it was just looking like the cases were starting to trickle in the United States. But yeah, stay at home. And even if you have family members that are healthcare providers that are around, it can be possibly around patients that have it. They probably need to stay away for now. As hard as that is, I think we need to be as careful as possible until the cases start to go down, until it becomes more under control.

Andrew Schorr:
Okay. So, Ian, let me ask you this question. I call him Ian because I've known him a long time. Ian so some people, and Dr. Hester mentioned this about immunoglobulins, some of us get infused immunoglobulin. I get it once a month. Okay. And I have had no infections for two years. So it does the job. So first of all, should I come, should that schedule stay in? Maybe, Dr. Hester, you'll weigh in on this. And I also understand that immunoglobulin is passing onto us immunities from plasma from somebody else, but we don't have the plasma of people who've had COVID-19 yet. They're talking about that as an approach. So, it may help with other kinds of infections, but it won't be protective yet for COVID. But should we have it? So, Dr. Hester, why don't you start first? Should people get immunoglobulin, or is that just an individual discussion with their doctor?

Dr. Hester:
It's definitely individual discussion with the doctor. I can tell you that prophylactic use of infused immunoglobulin is not recommended. There are risks associated with the infusion of immunoglobulin, and really only a certain subset of patients should receive immunoglobulin. Now this is obviously something to talk between you and your physician, but from an infectious diseases perspective, we would recommend that people get IVIG only when they have several recurrent severe infections and their immunoglobulin level is very low, less than 500, and then you come up with a plan with your doctor. But there's really no recommendation to use it in a setting of prophylaxis.

Andrew Schorr:
Okay. And it's not going to help with COVID right now?

Dr. Hester:
We don't know that yet. So recently, early this week, there were some papers that went out about using something called convalescent plasma, which has been used for over a hundred years in treating various infections from measles, polio, Ebola, and it was used with some success in small numbers of patients with Ebola. We don't know yet how that is going to work with COVID-19 disease, but there are some experiments that are going on right now with patients.

Andrew Schorr:
We just don't know. So, Ian, what about your patients who do get IVIG? Is that again an individual discussion?

Dr. Flinn:
It is. I think Sydney said it correctly, that the studies in CLL patients are, that IVIG only is helpful, only beneficial when people have demonstrated several bacterial infections, serious bacterial infections and have low immunoglobin levels. And those patients using it, getting it once a month, you can decrease the risk of bacterial infections.

But by and large, it has not changed the incidence of viral infections. And so, that really probably wouldn't be an expectation. So I think it really depends if someone's had several life-threatening pneumonias and has very low immunoglobin levels, and I would recommend that they'd probably continue to come in. And again, this might vary from where you are in Nashville, I think right now it makes sense. If you were in New York City, maybe that wouldn't make sense. You might not want to do that, but I think this will change over time here.

I think the other issue is that we have a shortage, so we can't get IVIG for many of our patients right now. And so we're triaging who has the most need and the worst infections and treating those patients.

Camille Ballance:
Lately I've been, we would have to look and see, “Okay, who's gotten doses recently, what are their IgG levels?” And then we have to pick and choose who's at most risk to get it. And lately we've been putting a lot of that off, because the risk is higher for them to come into the clinic and get exposed.

Andrew Schorr:
Camille, Dr. Flinn used the word shortage. With the oral therapies and we've checked with a number of the companies. We said, “Is there any concern about getting refills?” Because one of the recommendations, maybe it was when the CDC or wherever it was, get your refills and many of us get it mail order. So actually, I got a 90-day supply that's being sent to me on Tuesday, but I haven't heard of any shortages in getting the oral medicine refills. Have you, Camille?

Camille Ballance:
No, we have not come across that yet.

Andrew Schorr:
Okay. Why don't we go on, Dr. Hester, just to sum up with the COVID-19, coronavirus, so we have a new kind of virus that none of us have been exposed to. CLL patients have been more at risk anyway for infection wherever they are in their journey. And now we have something new. Camille says, “Stay close to home.” This is where we need to do all those things you mentioned and recognize that we are at risk. Dr. Hester, correct, did I get it right?

Dr. Hester:
That is correct.

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.

 Recommended for You

View next