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Living With CLL During Coronavirus

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Published on May 29, 2020

Have any chronic lymphocytic leukemia (CLL) patients contracted COVID-19? If cancer patients are at a higher risk, how can you protect yourself?

In Part 2 of this Answers Now program, host Andrew Schorr talks to Dr. Matthew Davids, from Dana-Farber Cancer Institute, and CLL patient advocate Michele Nadeem-Baker. Dr. Davids shares his experience with CLL patients and COVID-19 in his practice. They also discuss the different types of coronavirus tests, if you should get tested, how to protect yourself as states open back up, and more. Watch now for expert advice.  

In case you missed Part 1, watch here: What’s My Current Risk for Coronavirus?

Although this is a sponsored program, Patient Power maintains editorial control and is solely responsible for the content of this program.

[Due to extreme load on our website and Zoom platform, viewers may experience a time delay between the audio and video of the interview - please note the transcript can be read below.]

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Transcript | Living With CLL During 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 May 22, 2020

Andrew Schorr:
So, Dr. Davids, you talked about what we don't know. What do we know? And it sounds like going back to what you said is you have not seen a flood of CLL patients coming in. I imagine you've seen the gamut though. Have you seen some people that just are at home and get better, and some people have come to the hospital? And also, maybe embedded in that is when do you want to hear from them, where you're saying, "Mrs. Jones, I need you to come in" or if Michele developed certain symptoms, what do you want to know about where you're saying, "We need to see you"?

Dr. Davids:
So, as you know, we have a very large CLL practice at Dana-Farber between myself and Dr. Brown and other lymphoma physicians, certainly, well over a thousand CLL patients who we're seeing on a regular basis. And as far as I know, and I've been pulling our collective group every week, we've only had three patients with CLL so far who've been diagnosed with COVID-19. None of them have gotten very sick. One of them was hospitalized for a few days but was discharged and did fine. One of them was very minimally symptomatic, had some aching, chills and no fever, and with testing was positive. And a third is struggling a bit right now, still at home, hasn't needed to be admitted, but has been having persistent fever. This patient has some significant other co-morbidities, meaning other medical conditions.

So again, I've been pleasantly surprised so far. I think a lot of that is a credit to our CLL patients doing such a good job of staying out of harm's way. I do worry a bit as patients like the one you mentioned, the nurse who needs to go back to work, as CLL patients get back out into the world, I think that risk will go up.

Andrew Schorr:
Okay. So precautions, handwashing. We can all listen to the news about what they say about wiping things down. Michele, you're wiping all your groceries down and everything. So handwashing, wearing a mask, trying not to venture out or being very cautious when we are. So, people say, "Well, gee, I want to walk in the park. I want to be outdoors. I won't be close to people or ride my bike." You have beautiful bikeways in Boston.

Dr. Davids:
Yeah.

Andrew Schorr:
Somebody says, "Come on, Dr. Davids, I've got to get out. I'm going crazy." What do you say?

Dr. Davids:
Yeah, I think that's fine, actually. I think I've encouraged my patients to get outside and just be mindful of who else is around. I actually myself went for a hike with the family recently, and we wound up on a trail that was pretty popular, and there were a lot of people around. And even though we were wearing masks, we were a bit uncomfortable with that. So, I think being smart about when you go,  maybe you go early in the morning or times when places aren't too popular. And if you do see other people and you can avoid them, move to the other side of the street or whatever. So I think as long as you're sensible about how you do it, certainly you can get outside, and I think that's good for mental health in addition to physical health.

Andrew Schorr:
Right. Here over this way, a couple of blocks is the Pacific Ocean and the beach and the boardwalk. A zillion people this weekend, I don't go there.

Dr. Davids:
No.

Andrew Schorr:
You go this way, you go into some remote trails where I don't have to worry about other people, I do have to worry about rattlesnakes. And I hate snakes. But being mindful of that, there are places that we can go wearing a mask.
Okay. Let's talk about testing a little bit. So, Michele, I assume you've had no test yet, right? No coronavirus test.

Michele Nadeem-Baker:
I have not yet been tested for coronavirus. No. And actually, that led me to a question in that when we start getting tested our usual tests for CLL, will that be included in our battery of tests as patients?

Andrew Schorr:
Yeah. So, when somebody comes to see you, they get a blood test. Are you going to start doing coronavirus testing, or when does that come up? As all the public health people say, "Test, test, test, test.”

Dr. Davids:
So I think we should just be clear. There are two main types of testing that we're talking about here. So one is testing for the active infection, which would typically be this nasopharyngeal swab, that has become a rapid test now. There's an antigen test as well. So that's one category to detect active infection. And then there's the serologic or antibody testing, which can be done much later to look for evidence of prior infection. So, I certainly don't think there would be any plans to do that first type of test, the active infection test for all patients. That wouldn't make sense. But I think what Michele is alluding to is the serological testing to see if patients have been previously exposed.       

This is a pretty murky area right now, even outside of CLL. So, people are struggling even in the general population of what does it mean to have a positive antibody test? How accurate is the test that you had? There are four other types of coronaviruses, and a lot of these tests are pretty nonspecific. So it may just be picking up that you had the common cold a few months ago.      

So I think, even outside of CLL, we need to do a better job of understanding the test characteristics and how accurate they are. And I think this is going to be particularly challenging in CLL because as you guys know, the antibody responses that CLL patients make are sometimes not the same as people who don't have CLL. So there may be what we call false negatives, where a patient with CLL has been previously exposed and just hasn't developed antibodies. There may also be a situation where a CLL patient has developed the antibodies, and so they might falsely be reassured that they're immune, and they may still be susceptible to the infection.

Andrew Schorr:
Wow. Okay. I should just mention that next Wednesday, we're going to have two of my favorite people, although you're among my favorite people, but Susan Leclair and Jim Griffith, who are also in Massachusetts, Professor Emeritus from the University of Massachusetts. We're going to talk specifically about testing.

Now, supposedly a vaccine is a year to a year-and-a-half off. If it's less than that, wouldn't that be great? But, Dr. Davids, CLL patients know that their immune system is different. So what can we expect with the vaccine? Will we mount the response we're supposed to have with a vaccine? Or is that one of these just “I don't know” questions?

Dr. Davids:
Yeah. It's a tough one. We don't know. We know from our past experience with vaccines in CLL patients that they typically do not mount as vigorous of a response as people who don't have CLL, but they do typically have some response. So, for example, with influenza vaccination, pneumococcal vaccination, we certainly do think there's benefit for vaccination. We advocate that for all our CLL patients. But we do worry a bit that it might not be quite as helpful as it would be for someone without CLL because of some of these immune issues. And I think that's particularly relevant for patients who are on active therapy, especially the CD20 antibodies like rituximab (Rituxan) or obinutuzumab (Gazyva), but even probably the BTK inhibitor drugs probably do impair the ability to mount a response to a vaccine. So I think getting people vaccinated, hopefully off therapy is going to be the approach as best we can.

Andrew Schorr:
Right. But with flu shots, I've heard of some people because they were on treatment that they got double flu shots or things like that. Can it be compensated for, if you will?

Dr. Davids:
I think that's definitely an area to look into. I'm not aware of rigorous evidence supporting that, even with flu shots. But I think particularly for patients on treatment, sometimes we've had our infectious diseases specialist say, "Don't even bother with the flu shot, patients aren't going to mount a response," but we usually do it anyway just in case.

Andrew Schorr:
Here's one, Dr. David, “If I have symptoms of COVID-19 or I'm diagnosed with COVID-19, what role should my CLL specialist play in my treatment?”

Dr. Davids:
Yeah. I think I could speak for most of the CLL specialists and say that we would certainly want to be involved and part of the discussion. I think a lot of it depends on the patient's relationship with their primary care physician and also where they are in the CLL course. If they've been on watchful waiting and haven't had prior treatments, often starting with the primary care physician is fine. Obviously, if it's a patient who's on active treatment or recently completed treatment, that's a patient where we want to be in the driver's seat and really micromanaging everything that's going on. But I think regardless, keep us involved, and we're happy to provide perspective.

Andrew Schorr:
Okay. So if Michele, and I hope to God this doesn't happen to Michele, but if Michele is concerned she has a fever, should she also have at home a pulse oximeter or some other kind of device? So when she calls you, there's some information she could give to help you make a determination what you want to do?

Dr. Davids:
I certainly don't think it's absolutely mandatory to have a pulse oximeter. Could it be helpful to have that additional piece of information? I guess a little bit, but I rely more on the patient's subjective feeling about their breathing. I'll do a little informal test with them and have them count to 15 and see if they get out of breath as they're talking on the phone. So there are some little tricks we can use there. And I've been going through this with my patient that I mentioned before, who's struggling with COVID-19 at home right now, still having persistent fevers and debating, “Do I come into the hospital or not?” As you know, coming into the hospital involves some of its own risks, and the patient's doing okay at home right now. So unless he becomes really much more symptomatic, I think it's better for him to be at home.

Andrew Schorr:
Now, Michele, you went to Dana-Farber during this time that you've been quarantining yourself, so was that for a blood test, or can you share?

Michele Nadeem-Baker:
Sure. So my appointments have been virtual with Dr. Brown, and this was for blood work. They preferred it be done there, but I must say the experience was something very surreal and very different than what a normal visit to Dana-Farber would be, in that they're taking this very seriously. There was hardly anyone there, where normally, when you wait for blood work at Dana-Farber, anyway, it's standing room only. There was only one other patient and myself.           

The nurse who was taking my blood said that I was only her 10th patient, and when I asked how many she would usually have by then she said 50 at that point in the day. So it was very different. And I'm curious how long things like that are going to last as well in protecting patients like us and when things will get back to normal, or that's probably not even known. I don't know.

Andrew Schorr:
You felt protected.

Michele Nadeem-Baker:
Very protected. And although I wore a mask in, I was given a different one to put on, which I thought was great protocol.

Andrew Schorr:
And I should mention Dr. Davids, and Michele knows this and maybe some of our viewers, I did decide to keep getting monthly IVIG infusions. I go to an outlying clinic that's part of the UC San Diego system, but it's not the big hospital. So I'm around fewer people, but boy, they screened me in the mask, and they have far fewer people, everybody's protected. So that's a question we keep getting for people who need, whether it's a blood test, monitoring or immunoglobulin, how do you feel now that patients are protected?

Dr. Davids:
Yeah, I do feel that patients are protected, but I think it also is a good opportunity to just reconsider just how necessary a particular blood draw or infusion is. Sometimes there's a gray area of how much information we need, and sometimes we can get by with not checking a particular lab point, for example. So I think just being judicious about the interactions with the healthcare system are a good idea. But also if you need the care, if you need the IVIG, to not hesitate to do it, because I think the healthcare system is really adapting and making it as safe as possible.

Andrew Schorr:
Okay. Let me skip ahead for a minute to research. So before all this happened, we patients keep having our early warning radar saying what could be next for us, for instance, CAR T-cell therapy, should we need it. And I know a few CLL patients who've had it, and obviously it's a big gun in immunotherapy, just like transplant has been. Is research moving forward in CLL, so that and in combining medicines—I know you and I spoke at ASH—and there's all this combination work that's going on, is CLL research going on? And if it is, if a patient's in a trial, can that continue?

Dr. Davids:
So obviously, there are different types of research. There's everything from more basic laboratory research through what we call more translational, the interface between the lab and the clinic, and then the true clinical trials. And I think the laboratory research has certainly been impacted the most by this, in the sense that all of our labs have been closed for the last couple of months. And that has actually limited our ability to collect samples from the patients on the trials, unfortunately. So we've, we've lost some opportunities there to learn about the samples. But nonetheless, the clinical trials have generally moved along, and we've kept them going.        

For patients where we didn't need to treat them right away, we've dragged our feet a little bit, and we're going to try to slowly get them started on treatment now. But for most of our patients who are on clinical trials, it's been full steam ahead with their treatments, both because they need the treatment and also, we need to continue to learn about CLL and the optimal therapies, because we need that information to help future patients.

Andrew Schorr:
Right. But like CAR T, you're in the hospital too, and stuff like that. And I imagine, I don't know if it's this way at Dana-Farber, many other places, you can't have someone with you.

Dr. Davids:
That's right. That's been a big change, and it's been very tough understandably for a lot of our patients, that they could not have visitors. But we've been able to continue doing CAR T-based therapies as well as autologous transplants, for example, all these things have gone on. It's been challenging.

Andrew Schorr:
Wow. Okay. So, Michele, you've been living like I have. How have you kept your head on straight through this? And what do you want to say to other patients as there are still many things that Dr. Davids and his colleagues say we don't know the answer yet?

Michele Nadeem-Baker:
Well, I would suggest that we all, as Dr. Davids was saying, do need to continue to be cautious because we need to protect ourselves. So I have had my moments, they were tougher in the first month. I must say that we all, as humans get used to something if it's repeated, and I'd say that we need to hold tight for a while. Get outside as much as you can to get fresh air, because it helps. And to continue doing virtual events like this and Zoom calls with family, and that is how I've been able to get through this. And also, I am participating in as many, I should say, virtual events where you also learn. And that is how I have been dealing. So it's a change. We all know it's not forever, and we all know it's not ending yet, and just hold tight and be patient, but it will eventually end.

Andrew Schorr:
Right. And we're still dealing with CLL, so that's why with Dr. Davids and his colleagues who do research, keep working on it, because we want you guys to cure it. And long after, hopefully the pandemic subsides, we'll want to know that we can live better and live broadly and actively with CLL.
Michele, we're going to let you go, thank you so much for being with us.

Michele Nadeem-Baker:
Thank you.

Andrew Schorr:
I really appreciate it. And our best to Brian and walks with Gabby, okay?
And, Dr. Matt Davids, just a summary from you. So we said, be cautious, communicate with your doctor. Although we know we have an immune system that's affected, you haven't seen a great calamity generally in an area that's been definitely affected by coronavirus. So that gives us hope. Any final comment you want to make, Matt?

Dr. Davids:
Yeah. A couple things. One is that when this started, we, in my mind at least, were viewing this as a sprint. We get through the next couple of months, and then we reopen, and we're good to go. But, I think we've realized over the last several weeks that this is more like a marathon, and we're still in the first few miles here. And really until we have an effective vaccine, which may not be for a year or two, we need to continue to be cautious, as Michele was saying. So I fully support that.        

But I can reassure you that the CLL research is going on and really still at a fast pace. You can ask my family, I've been as busy as ever, working from home and developing new research projects and new collaborations, and moving things along. So I think there's a lot of optimism still that we're able to move our research forward in CLL, and the patients I think hopefully will benefit from that in the future.

Andrew Schorr:
Okay. Dr. Matt Davids, who is associate director of CLL at the very famous Dana-Farber Cancer Institute, and assistant, or is it associate professor at Harvard?

Dr. Davids:
Assistant professor for now.

Andrew Schorr:
Okay. Well, someday you'll be the top dog. Thank you so much for being with us, Dr. Matt Davids. And have a good, safe Memorial Day weekend for your patients and with your family. Okay.

Dr. Davids:
Thank you so much, Andrew.

Andrew Schorr:
All right. I'm Andrew Schorr, and we have so much to talk about. Remember, we're going to be doing these programs every two weeks. So in the week of June 1st, another program. We've had so many questions, we're going to have more coming in. We'll keep trying to get to them. And again, it's a moving target of what we know, just like what we just heard from the CDC, that maybe we don't have to wipe down all our groceries all the time and about surfaces. So we'll find out.          

Remember that on Wednesday, and we've had almost 200 people here, just the dynamic duo of testing, Susan Leclair and her husband, Jim Griffith, they're going to be with us, also from Massachusetts for another 30-minute program, taking your questions specifically about testing. And as Dr. Davids said, what's still unknown about specificity in testing, and let's see, selectivity and specificity. I don't know, Jim will educate us again so we really know, should we be tested and how much can we rely on it?

In the meantime, if you're with us here in the U.S., it is Memorial Day weekend. There are going to be a lot of people running around, but I think those of us living with CLL have to be more conservative. Connect with family, do things that you can enjoy, but really stay at home or close to home. Thank you so much for being with us. As I always like to end my programs, I say, I'm Andrew Schorr, and knowledge can be the best medicine of all.

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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