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How Can CLL Patients Minimize Their Risk of Exposure to Coronavirus?

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Published on March 20, 2020

Key Takeaways

  • To avoid exposure, limit the amount of unessential appointments, and see which can be delayed or done as a remote visit.
  • Pay attention to symptoms like fever, cough or shortness of breath, and call your provider if you feel symptomatic.

In a worrisome time with the spread of COVID-19, chronic lymphocytic leukemia patients, who are by definition considered immunocompromised, have many concerns about treatment, appointments and day-to-day work and family life.

Leading experts Dr. Justin Taylor, from Memorial Sloan Kettering Cancer Center, and Dr. Farrukh Awan, from UT Southwestern Medical Center, joined Patient Power to answer questions from the CLL community and discuss the recommended protective measures to take. 

Watch as both doctors share safety guidelines for CLL patients to help reduce their risk of exposure during the coronavirus outbreak.

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Transcript | How Can CLL Patients Minimize Their Risk of Exposure to 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.

Andrew Schorr:
And hello from rainy Southern California, Andrew Schorr here. Dr. Justin Taylor from Memorial Sloan-Kettering is joining us from New York, and we'll get Dr. Farrukh Awan to join us from UT Southwestern and there he is. So two noted CLL experts and over the next 30 minutes we're going to answer your questions as best we can as it relates to those of us living with CLL, I have for about 24 years, in this time of worry about this virus that none of us have been exposed to. So first of all, I want to ask Dr. Taylor. Dr. Taylor, you're in New York city, which right now has more COVID-19 coronavirus cases than any, and you're at a noted cancer center, Memorial Sloan Kettering. People are really worried in New York because of the density. First of all, are CLL patients at higher risk?

Dr. Taylor:
Yeah, thank you, Andrew. And you're right that I think we've now surpassed Washington State as the highest number of cases and we have a lot of people living in the city, so it's definitely a very worrisome time to live in, especially if you have a chronic disease like a CLL. And the short answer to your question is that we don't quite know yet. The evidence that we do know is based on data coming out of China, where they have had this coronavirus epidemic there since early in the year. And there was a paper published in The Lancet Oncology, that's a medical journal and in that report they published, they looked at about 2,700 cases where they could confirm a coronavirus infection with this new coronavirus.

And they had only, out of that patient group, they had 18 patients with cancer. And so they did report that that was maybe higher than would be expected by the incidence of cancer in the general population there. However, none of those patients that they described had CLL. And there were some other things about that study that not everyone's quite convinced that cancer patients are at that much of a higher risk, although it makes sense from what we know about being immunosuppressed, especially in CLL, especially patients that are on treatment. So I think we're very cognizant of that fact, and we're always on alert for any infections in our patients, but I think everyone's watching very closely.

Andrew Schorr:
Okay. So, Dr. Awan, your comment on that? I mean some of us, not by you guys, but some of us were told when you're diagnosed with CLL, “CLL is the good kind of cancer to have.” I know you never say that to people, but unfortunately some of us heard that. And so now we're worried though, knowing that we've had a lymphocyte problem and lymphocytes are part of our immune system. What's your view about whether we should consider ourselves , knowing there's heterogeneity among CLL patients?

Dr. Awan:
Thank you, Andrew. I'm really glad to be joining at this important point in our lives, I guess. But before I say anything, I just wanted to have a shout-out to Lindsay, who just messaged me on the chat. So she's in Ohio, and I know her from before. So hi, Lindsey. How are you? And I completely agree with what Justin said. I think the problem we are dealing with right now is, we just don't have enough data coming out that I am aware of, that I've seen on patients who have a cancer, patients who are immunocompromised, patients who are undergoing treatments either with chemotherapy or with targeted agents. These patients who may not mount a febrile response or will not necessarily have a fever if they do get infected by the virus. So I feel that our patients are unique in that sense that they may not exhibit typical signs, so it becomes challenging to screen them properly.

We just don't know how they will respond. I think we all realize and recognize that patients with CLL are immunocompromised. They're not just immunocompromised based on the B-cell function, but they're also immunocompromised based on the T-cell function and the NK cell function, so their whole immunity is compromised. And even in early stage patients, I think that's been documented over and over again, response to vaccines, every which way you look at it, our patients are at a higher risk. So I feel that our patients need to take extra care in limiting exposure and getting medical attention as quickly as possible. And I feel that it's a very serious problem for our patients, and we need to be very aggressive with our patients and try to minimize exposure as much as possible at this stage.

Andrew Schorr:
Okay. So, Dr. Taylor, we're getting a lot of questions. So Linda asked, "What about..." so let's start with routine visits. So Linda was supposed to go to the dentist, should she defer that? But I'll even extend that, some of us get , immunoglobulin infusions or have follow-up visits with practitioners such as you. So what do we defer, what do we not defer? Justin?

Dr. Taylor:
Yeah, I can speak from our experience here, and this may vary dependent on the region of the country you live in. Although I would caution that even if your state doesn't have many cases right now, it's spreading within the U.S., so it's more than likely going to spread to your state. So you might start taking these precautions now. But in a state like New York or California Bay Area or Washington, I know that what's occurred is that we are trying to limit the amount of those appointments that are unnecessary, and that's hard to define. For an instance, if it's a dental problem that could be—that was the question, if it could be put off, if it's something that's elective or the pain can be managed for some time, especially just cleanings, those should be put off.

In terms of the appointments with the providers, we've started contacting our patients selectively by going through the list of patients and seeing which ones are just a routine follow-up where we would be doing maybe a physical exam and a blood count but nothing else and trying to see if we can move that to a telephone visit, or we can just ask the patient if they felt any lymph nodes and defer the blood count for now so that they don't have to come into this area where we have lots of transmission. And so I think—you also brought up the idea of IVIG and treatments. Maybe I won't get into treatments yet, but just for IVIG, that is something that helps the immune system.

But in this case, since this is a coronavirus, nobody has ever been exposed to, as you mentioned, the immunity is not there in the population yet. So getting IVIG wouldn't protect you specifically against this coronavirus, although it may help for other infections, and I haven't had to cross that bridge yet, but my view would probably be that that might be an issue where you talk one-on-one with your doctor about whether that should be delayed. Again, that also would vary if you're in an area where it's not so high transmission yet, that might be okay for the time being. But I know that here in New York we're trying to limit any unnecessary visit at all or any visits that could now be delayed.

Andrew Schorr:
Dr. Awan, for you, are you doing any telemedicine? And also if something's on one of the oral therapies for CLL, is there any reason to hesitate to take any of those at this time?

Dr. Awan:
Yeah, so I agree with what Justin just said. We have incorporated these practices in our clinic and on the outpatient side, and we are talking to the patients day by day, list by list and see if the patient does not need to be in the clinic or in the hospital for any reason, we defer those visits by a few weeks at this time, maybe longer in the future. If a patient is actively on treatment and they need their refills as part of a clinical trial, then we are trying to do that as quickly and as efficiently as possible. If patients are on ongoing treatment, the things that we are recommending is rather than coming in, we talk to them on the phone and then have them get a blood test with a local lab, which may not be as crowded as coming to the hospital and waiting in the waiting room.

So, I think we're utilizing local labs, utilizing primary care physicians to do the lab quickly, fax us the results, and we can talk on the phone. That's for patients who absolutely need to get their labs checked every so often. And if somebody is actively on the chemotherapy and needs the care, obviously those patients we can't avoid. The last question was about IVIG and in those cases, most of our patients can probably go a few weeks without getting replenished. So I feel that the risk of exposure is much higher with them being in this environment rather than getting the IVIG two or three or four weeks later. So, at this point, we are deferring all scheduled IVIG, unless there's a reason that we can't avoid it.

And lastly, in terms of the official telemedicine, and if there's a way that doctors can use that legally, there are already provisions in place. On the inpatient side when patients are admitted to the hospital, if they're in quarantine or if there are in an isolation room that very few are limited number of physicians would need to go in and expose themselves. The rest we can talk from a phone outside of the patient's room or remotely, we can talk to them. We're also trying to implement that on the outpatient side. We have a Medicare and the FDA and CDC approved way of communicating with those patients so that it's legally binding, and it's a reimbursable for us, and it's not an extra burden for the patient, and it limits their risk. There are multiple ways and efforts in place already to do telemedicine. And I think we're actually doing this today. We've started doing it today on our inpatient side and tomorrow on the outpatient side.

Andrew Schorr:
Great. Now we've gotten a lot of questions from our audience about working. Some people are business owners, some people are employees. But they're living with CLL. Maybe they've been in remission for a long time, but maybe they're in active treatment. What are you telling people? I know it's individually—in one lady, Judy, who owns a business, so she's having all our employees sanitize and wash hands, and they're wiping things down, but she still feels she needs to go to work. So, Justin, what about people working right now rather than sheltering in place?

Dr. Taylor:
I mean for that, I guess we're going by what the guidance from the public health officials are. Each state is doing things differently now, and each city might even be doing things differently. I know one of the recommendations from the Centers for Disease Control, the CDC, has said for older patients, they strongly consider whether they go out, and of course CLL tends to be in older patients. How exactly older is defined we can discuss, but even without a diagnosis of CLL, it seems that the most severe cases are in elderly patients. In the studies that have come out of China or Italy, for example, the risk really went up above 50. It started as young as 50 years old that the risk went from a general 1 percent to about 5 percent mortality.

And then in the 70s to 80s it was about 13 percent and 18 or 20 percent for the above 80-year-old patients. Again where you make a cutoff to what is considered older or elderly, that hasn't been defined. But in general the CDC is saying older patients are at higher risk of getting severe disease and might want to just limit what they're doing to essential activities.

I guess if you're a small business owner, and that's essential to your survival that is a decision one has to make. I think if your work is something like our work even, they're asking us to work from home on days when we don't have to be in the hospital or out in the clinic. And if your work allows you to work from home, definitely make that choice. I guess if you don't have the option, that is a much tougher choice.

Andrew Schorr:
Dr. Awan, we're getting lots of questions, and folks, we'll probably try to keep doing this series as we can through these weeks. That's our plan, and we are grateful to have Dr. Taylor with us from New York and Dr. Awan from Dallas. There's a big Facebook group that my friend Jeff Folloder runs, and people there have been asking a couple of things. Should I stay away from my grandkids, Dr. Awan? And can I still go outside to exercise?

Dr. Awan:
Yes. I think those are really important questions, and questions that get asked every day from us. I feel that at this point for your safety, and for the safety of people around you, it's best to minimize exposure as much as possible. Especially for the CLL patients who are considered immunocompromised, even if they have a normal count, even if they're on ibrutinib (Imbruvica) for two years, and even if they have a normalized EG level, I think by definition all our patients are considered immune-compromised. So we feel that they are at the highest risk. Hopefully all of our patients, and most of our young people will be fine and will recover just fine from this infection, but we just don't want to take any chances. At this point, I'm personally not recommending any travel, even if it's to a cousin or an uncle, or brothers and sisters, or grandkids in Austin, for example, from Dallas, because that just exposes you to unnecessary risks.

And the same thing with domestic or in-city travel, I think minimizing visits to the grocery stores, the restaurants, any crowded places, hopefully a lot of them have already shut down, and they're not letting people congregate. But it's just to minimize exposure. Hopefully we will come out of this without any problems, and everyone would go back to life as normal. But at least for the next couple of months, I feel that unless we start seeing that curve flattening out, and the number of infections going down, we should be cautious because even one person dying from this disease, or this infection, is just one person too many. So I feel that even though if you look at the numbers of people dying per age group, it's the highest in patients above 60 and 70 and 80 as they get older, the mortality rate goes up.

But if you put everybody together, the mortality rate has been a steady 4 percent, and this is despite the fact that the westernized countries with very good healthcare system, a lot of resources, they're the ones who have started reporting these cases. And despite that, with excellent healthcare facilities, their mortality rate hasn't changed at all over the last two months or so, and it's been a steady 4 percent across the board.

I feel that this virus does impact our more immune-compromised, our more at-risk patients. It's really not worth it if you just hunker down, stay in place, limit your interactions for a month or two, and hopefully this will pass.

Andrew Schorr:
Right. Well, let me just comment, because folks you're asking questions that I think they're answering. Maria is a nurse, I guess, she works in a front line in a hospital, but she's a CLL patient, and she's been on an IVIG, but we're talking about how protective is that? She said, “Should I consider going on leave?” I'm not, I can't give you advice Maria. But it sounds like from what Dr. Awan is saying, you are at risk. You're on the front line, and you're in Los Angeles where there are a lot of cases.

We did have a question, Dr. Taylor about somebody who's in Boston, but they normally live in a small town in New York and he's wondering, "Well, should I get back to my small town, so I'm with my family in my environment?" But knowing that if I needed care, he goes to Dana-Farber I think, or maybe to you in New York, should he be where he's going to need care, or should he be where he can be sequestered, if you will? What are you, what do you say, Dr. Taylor?

Dr. Taylor:
Yeah, tough choice. Before I forget, I wanted to say on a personal note, I have young kids, and I'm not letting them see their grandparents. So, it's tough. But with FaceTime and things like that, I think we can go through this like Dr. Awan said, it's just a short time, and the benefits will be much, if we can blunt the growth curve of this virus.

But as to the specific question of whether to be isolated or be near a hospital, I think the symptoms do start pretty rapidly after one's been exposed, as opposed to like the flu where they can be insidious for a week. The incubation period is anywhere from two days to 14 days, but average is five days. And the experience is that once the symptoms start, which are fever, cough, they can rapidly escalate. I think if you're living in remote New York, that's a few hours from the nearest hospital, that that might actually be a problem if you think you might've been exposed. But on the other hand, if you live all by yourself and you're not going to have any contact with anybody, that could be a safe bet. But I don't have a great answer to that specific case.

Andrew Schorr:
Yeah. I think we're learning, Dr. Awan, so people are also concerned about family members, their care partner, maybe their Millennial kid who goes to work every day, or whatever it is. What are you telling patients who are often older with CLL about not just contact with grandkids, but other people that may be in their home who go in and out more often?

Dr. Awan:
Those are the difficult situations. I think for people with young kids, as far as I'm aware of all schools have been closed until at least the 3rd of April, maybe longer. So that will help. That will help limit the exposure. Then I think we all have to realize that the number of cases that are being reported every day, they're not slowing down. They are at a very consistent base over the last few days. Similarly the deaths have been fairly consistent. The rates are not slowing down at this time. We also have to realize that this is still in a time when we have limited access to testing. I feel that only a fraction of patients are being tested. If you had more easy access to testing, I know that some hospitals, for example, our hospital has an in-house asset, and their turnaround time is very quick, but a lot of hospitals, especially in small rural areas, may not have even have access to that.

I feel that once more and more of labs start coming online, we will see that the number of infections will go up dramatically, and that will probably be a better estimate of how many people are getting infected every day, and then obviously similarly that would track with how many people are dying, unfortunately. So I think we're still not even in the beginning of this epidemic in the U.S., and I still think it's just beginning to take off, and we don't really understand the true extent of this. It's really hard to predict how long this will last. I feel that, from other countries’ experience, they had to create drastic measures, and even then it took them a few months to get this thing under control. So I'm not sure how this will all pan out. So I would feel that in the absence of easy access to testing, the drive-throughs that are happening in Korea, we're not quite there yet. We have it in a few places in Dallas, but not everywhere.

People should pay attention to symptoms. And if you feel that you're coming down with a fever or a flu-like symptoms, you should take the step and quarantine yourself and not expose your grandparents, not expose your parents to that. That's the sacrifice. Maybe limit the exposure and if you have to drop some stuff off, drop it outside their room, drop it outside their house, maybe not have contact. The social distancing, I think it's an easy first step. And obviously if you're actively coughing and sneezing, you should definitely stay away from enclosed spaces. So I feel that this will go on for a while. How will it impact our access to different medications? We're already running short of masks and gloves and personal protective equipment. How will it impact delivery of other medicines? Nobody knows the answer to that. Blood supply is already short. So these are all challenges that are basically unique with this problem, and we just have to be resilient, and I think we'll be fine.

Andrew Schorr:
Well, I sure hope so. Dr. Taylor, I just saw a question come by where somebody was saying, “I have a fever, and I'm feeling short of breath.” Now, I know this can go along with other things too, and they said, “Should I go to the hospital now?” And my understanding, correct me if I'm wrong, is what you want them to do is call? Is that right?

Dr. Taylor:
Yeah, that's right. We're telling everybody we can and trying to get the message out in various ways, but we want people to call before they come, because as was just mentioned, if you have symptoms and you're coming to a crowded area, like an emergency room, we want to make sure that we're keeping other people safe and get you quarantined. So definitely call ahead of time. We're even screening people at the door, so that doesn't happen, and separating them out if they have symptoms, putting a mask on them and separating them out from the rest of the patients so that we can try to decrease the amount of exposure that's going on in our emergency departments. I think right now the guidance is that you would need to report to the Department of Public Health, whatever that is for your locality, about how best to get a test, or call your primary care doctor to see if they offer the tests, or if one of these drive-throughs is available, you still have to have a doctor's note for that drive-through.

So still call your primary doctor. You don't have to go to the office. They can send you a prescription, and then you can go to the drive-through and get the testing there just to avoid walking into a crowded emergency department, and you don't know—maybe what you have is not coronavirus, but maybe it is.

Andrew Schorr:
Right. So, Dr. Awan, did we answer the question about exercise? Like here, I am not in New York City, so it's not densely populated. Can I get out of the house and walk the dog and exercise if I'm keeping my distance from other people? And I don't know, where you are in Dallas, what it's like there.

Dr. Awan:
So we don't have any restrictions. I heard that California might have a shelter-in-place kind of restriction. So in the absence of that, I think people should exercise caution. If they expect that they would be in close proximity to other people, then I would probably advise against it. But I would imagine that if you're by yourself and if you're going for a walk and it's not very crowded, then it should be okay, although I would probably defer to the experts on that, but I would imagine that if there's not a lot of people around, that should be fine.

One thing that I just wanted to add is, even though we're all talking about testing, the important question right now is, okay, if the patient is tested positive, what do you do? So in the hospital, at this point, we're not doing anything that you wouldn't be able to do at home in the early stages. For example, if the patient just has a fever or a cough, we are giving them supportive care with acetaminophen (Tylenol), with anti-inflammatory agents possibly, depending on the symptoms. If they have a pneumonia, we give them antibiotics. If they have coughing, we give them cough medicine. So it's a lot of symptom-directed treatment. So basically we're supporting them. But a lot of the patients who are not very sick, they can probably do the same things at home. But obviously if you start getting sick, then you should come into the hospital.

Now, the problem that happens is that the hospital and healthcare systems are under a lot of pressure and under a lot of stress right now to isolate those patients so that other healthcare providers, the team members, other patients in the hospital don't get exposed to that person. And I think that's where the challenge is. So the challenge is really how do you effectively quarantine those patients who may not be very sick and who may not need a lot of things, but they're definitely infectious to other people. So I think those are important issues that we are having to deal with as the volumes of patients who get positive tested are increasing. So at this point, the hospital would be under a lot of pressure to handle those patients. So if you can, if you have on my cough or a mild fever, it may not be a bad idea initially, at least, to see how it goes over the next day or two, and obviously if you start not feeling good, by all means come into the hospital.

Andrew Schorr:
Okay. Folks, we're going to go... If the doctors can stick with us, maybe another few minutes. Justin, Farrukh?

Dr. Awan:
Sure.

Andrew Schorr:
... okay. Just a few more minutes.

Dr. Taylor:
Yeah.

Andrew Schorr:
We know how busy you are. We're flooded with questions. So, Dr. Taylor, many people are on different medicines that they get refills for, whether it's imbruvica or veneotclax (Venclexta), acalabrutinib (Calquence) were all the different names, and even a trial medicine that's oral, and we wonder whether, first of all, some of the ingredients for these medicines come from China or other places where commerce is somewhat limited, do we have to worry, or have you heard anything about a worry of supply of our medicine?

Dr. Taylor:
I haven't heard anything specific to CLL medicines. I know it's a general concern that some medicines and some masks are made overseas, and that might be causing a shortage. I've typically been telling all of the patients to get a 90-day supply. Sometimes if your insurance doesn't like that, you can do change over to mail order supply, and that will give you 90 days, just so that during this period where we might be experiencing the hardest times, you at least know you have your medications with you and if you can't leave the house, then you have the supply there. So that's one recommendation. I actually thought you were going to ask if people were concerned about the infection coming over in the medicines, and I don't think we have to worry about that at all. This virus can survive on surfaces, but not more than a couple of days, and if you have any concerns, you can leave the package for another day without touching it, or wipe it down.

Andrew Schorr:
Okay. Dr. Awan, you mentioned something earlier about CLL being a condition that definitely affects the immune system. One of the immune responses we have is fever, that people normally would have. And so we got a question that came in. Do CLL patients experience the same symptoms? Like would we less likely have a fever? Or in other words, the things that they're saying, do you have a fever, cough, shortness of breath, would it be any different for a CLL patient?

Dr. Awan:
Yeah, so I don't think we know, I haven't seen any evidence that supports that they would behave any differently. But we do see in our practices, patients who are on chemotherapy, if they have low neutrophil count, they don't always necessarily mount a fever response. So a lot of times we have to go by judgment. We have to go by their heart rate, we have to go by the blood pressure, how they look on a certain day. Fortunately, our patients are not functionally neutropenic. Most of the time, they have enough neutrophils, so I would expect that they would be able to mount some sort of a fever response. But I wouldn't be surprised if my patients present with atypical symptoms and not the classic symptoms that normal people who have a robust immune system would have a response to the COVID-19 infection.

But another thing about the surface thing is, it's very interesting, there's a paper that just came out, yesterday I think, in the New England Journal of Medicine. And they've gone through the different surfaces and how long the virus can survive on metal versus cardboard versus different types of surfaces. So I think that's a nice, interesting read. It's a quick study that they've done in the lab, tested different types of coronaviruses, and it's informative. But basically you can persist on the surface off different objects for a fairly reasonable amount of time. And one of the questions I just saw was, can it be transferred on the fur of a pet or a dog, for example. Unfortunately, every season we see a number of cat bite and dog infections in our patients all the time. So not just the coronavirus, but a lot of other bacteria and viruses from animals, we see them on a regular basis, and I would imagine that those animals and their furs and their skins would probably be the same as human skin and other surfaces. So they will probably have some—I guess they would probably latch onto that surface for a while. I don't know how long, but that would be a possibility, that if the pet gets the coronavirus, maybe they can serve as a carrier.

Andrew Schorr:
Whoa.

Dr. Awan:
So that's another interesting question. I don't know how to answer that, but I would imagine that they would be on the skin for a while.

Andrew Schorr:
Well, my dog's right here. Justin, so some people have SLL rather than CLL, very closely related. Is there any reason to think that that immunity or lack of immunity is different in CLL patients?

Dr. Taylor:
No, I wouldn't think of it that differently, CLL may have more bone marrow blood involvement and therefore may risk more of the neutropenia that was just mentioned. But typically we don't see much neutropenia in CLL patients unless its due to some treatment. So, I wouldn't think of them differently, I don't know if, Farrukh, you do.

Dr. Awan:
No, I agree. I think for me CLL and SLL are the same entities. That's a exact same disease as far as I'm concerned.

Andrew Schorr:
Okay. So, Justin, a question for you is, so we have a lot of people on oral therapies and they wonder how these oral therapies affect their immunity. And they've been doing well. They've been on, one fellow wrote in, he's been on Ibrutinib for years, is there any reason to stop or take a vacation from a medicine? Or if it's not broken, if you will, don't fix it. Stay the course.

Dr. Taylor:
That's a good question. We've heavily been telling people, don't stop any medications without talking to your doctor first if you're already taking something.

If you have untreated CLL or maybe you don't need treatment at the moment, that could be a discussion about whether you wait to start a treatment right now. Instead of starting it right now, maybe you can wait to start it until this dies down a little bit, if that's an option.

For the people who it's not an option and they're already on some treatment that they need to stay on, we've been advising them to not stop any treatment unless you discuss it with your physician.

Andrew Schorr:
Okay. So, Farrukh, so a question related to, we talked about discontinuing medicines, not, we talked about immunity, and a lot of people wrote in about their IGs, a lot of us have, especially through your institutions, we have a connection to our electronic medical record. And you will post our test results, and often you do a lot of testing, not just CBC but whole bunch. I know mine is H's and L's, highs and lows. It's all over the place. Is there anything I can tell about the strength of my immune system from these numbers, whether they're below normal, above normal, whatever? Or is it really to discuss it with you, my provider, to get a sense of how much risk we're at? Farrukh, you want to take that one?

Dr. Awan:
Sure. So, that's a great question. I think there are certain things we test for on a regular basis, and those are mostly numerical things. For example, we check the neutrophil count. And if the neutrophil count is above 500 or a 1,000 or 1,500, that puts you at a different risk for getting certain types of infections. So neutrophil count is always done as part of your complete blood test. So, that's something that we do on a regular basis.

Similarly, if you are lymphopenic or if you have a low lymphocyte count for whatever reason, we can always look at that. But what we don't test is these—and then we can also look at IgG levels and obviously you can see if IgG levels are high or low, and are they in the normal range or not. So those are the numeric things that we follow.

But I think what I was trying to emphasize even earlier to you was, there are a lot of these functional assays that we don't do on a regular basis. Occasionally we do them, but these are not easily accessible, these are not regularly done.

And those are the ones, for example, the NK cell function. How is your natural killer cell function? What about your B-cell function? How strongly do you mount a response? And what about your humoral response or your ability to make new antibodies? So I think those are just functional assays that we don't do on a regular basis. So that's why there's no way to assess them. But from historic data, we know that patients with CLL have an impaired immune system.

With regards to Ibrutinib or other therapies, let's talk specifically about ibrutinib. The data on ibrutinib is all over the place. We have published that the risk of infection is very low, and ibrutinib might impair or ibrutinib might repair the immune system to some extent. So it might actually help the immune system. There are other reports that Ibrutinib might increase the risk of certain infections.

So I think we generally don't know exactly how this is going to all work out, but generally if the disease is under better control, you would have less infections. Or you would be at a slightly less risk. So if somebody has been on Ibrutinib for a while, unless there's other reasons to stop it, I would not recommend that they stop it.

Now, that's maybe not the case with other drugs: idelalisib (Zydelig), other BI3K kinase inhibitors, venetoclax. If you are getting neutropenic, if you have other infections, you should manage them according to that situation. But just because there might be a theoretically higher risk of getting the COVID-19 infection, you should not just stop the drug in anticipation, because you don't know how this will pan out, because you're also risking that you are losing control of the disease, which might actually be more devastating than the virus. So, you have to really balance this out. So, I would not stop any medication without talking to your physician. And do it based on the situation.

Andrew Schorr:
Wow. Well, folks, we're flooded with questions and so what Esther and I are going to do and Patient Power, we will be doing this recurrently. I'm sure, maybe we'll have Dr Taylor and Dr Awan back, but they've got busy stuff to do. Dr Ferrajoli from MD Anderson has volunteered already for next week, so we'll plan this, and we'll let you know.

We do have a CLL Town Hall meeting coming up a week from Saturday. There will be an infectious disease doctor from Nashville to talk overall about our infection risk, bacterial as well as viral and COVID-19. And then a gentleman that I'm sure both of these fellows know, Dr Ian Flynn with Tennessee Oncology. He'll be with us as a CLL expert as we talk about that. So, be sure to be signed up for that. You can sign up on the Patient Power website under Upcoming Events. Keep sending in your questions, comments@patientpower.info.

I just want to summarize a couple of things. See if my professors here agree with me, because I'm living with it just like you folks are. We have our 22-year-old son living here and he's symptom free but we're not letting him go anywhere. We are walking the dog but maybe I'm going to think twice about definitely washing my hands after I touched the dog. But I'm staying close to home. My wife is the one who does the shopping, and she wears gloves when she does grocery shopping, and is very careful.

But basically, if I developed symptoms, I would call first. I wouldn't assume it's COVID-19, could be the flu, could be a cold, could be whatever. And I just want to applaud, I know in Spain, and maybe folks you've seen in Spain where people are definitely locked down, every night I think at 8 o'clock they go to their balcony and applaud our healthcare providers, and so join me folks. I want to thank that—in Italy, they're singing, but in Spain, Jeff, they're applauding, but thank you so much for volunteering your time. Justin Taylor from Memorial Sloan Kettering and Farrukh Awan from UT Southwestern in Dallas.

There will be a replay we will post. Keep asking your questions, and we'll get to it. Gentlemen, thank you so much for being with us today. Thank you so much. The replay will be posted on Patient Power. Thanks gentlemen, we'll let you go, okay.

Dr. Awan:
Thank you, it was a pleasure.

Andrew Schorr:
All right, and as I like to say, Karen, our producer, knowledge can be the best medicine of all. We'll see you. Bye-bye.

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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