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What’s My Current Risk for Coronavirus?

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Published on May 28, 2020

What's the latest data on the risk of getting COVID-19? What do chronic lymphocytic leukemia (CLL) patients need to know about potential complications? And how can patients and their families stay safe?

In Part 1 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. They discuss whether or not CLL patients are more susceptible to the coronavirus, if co-morbidities play a factor and if BTK inhibitors can help. They also share day-to-day safety advice as states begin to open back up.  Watch now to learn more.

Watch Part 2 here: Does Living With CLL Increase My Risk for Coronavirus?

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

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Transcript | What’s My Current Risk for 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:

Greetings. Welcome to the CLL Answers Live program. I'm Andrew Schorr, down in Southern California near San Diego. And I want to thank our sponsors for supporting this program today. It's Pharmacyclics and Janssen, and they're very committed to the CLL community. And I want to thank sponsors generally, who are supporting us as our intention is to do these programs every two weeks. So we've got a lot of questions, folks, that you've sent in already. Our guest, Dr. Matt Davids, is a busy guy, and we appreciate him devoting the time now.   

So let's introduce our guests. So joining us from Boston, the Dana-Farber Cancer Institute is Dr. Matt Davids. Matt, give us your title again. I want to make sure we get it right.

Dr. Davids:

I'm the associate director of the CLL Center at Dana-Farber, and I'm also an assistant professor of medicine at Harvard Medical School in Boston.

Andrew Schorr:

Okay. And you're an investigator, so you have, I think, more than a dozen CLL clinical trials going on, right?

Dr. Davids:

That's right. And in addition to that and taking care of CLL patients, I also run a research laboratory focused on CLL.

Andrew Schorr:

Okay. All right. Let's have a dear friend of ours from Boston, who is a CLL patient, many of you know her, Michele Nadeem-Baker. Michele, you've been living with CLL how long now?

Michele Nadeem-Baker:

Since the end of 2012. So that's eight years.

Andrew Schorr:

Right. And you are a Dana-Farber patient, and you were telling me just before the program you've been going nowhere, except you did go to Dana-Farber, right?

Michele Nadeem-Baker:

That has been my big outing, and today starts week 11. I can't even believe it. 11 weeks. 71 days, that is.

Andrew Schorr:

Oh, my. Okay. So you got your chocolate Lab, Gabby. We may see join the program at some point.

Michele Nadeem-Baker:

She may.

Andrew Schorr:

Your husband, Brian. You're cooking and doing exercise at home, walking the dog and that's it, right?

Michele Nadeem-Baker:

That's it for being in public. It is. And doing everything at home. Luckily we have a yard so I can get outside and garden, and the weather is turning, but that's it. And I've taken up all sorts of new things, I never cooked before. But it also gives us time to be grateful for what we have.

Andrew Schorr:

Well, absolutely. Okay. Dr. Davids, so you are in what's been a hot spot for coronavirus. So given your experience in Boston and Massachusetts and a CLL specialist, what is your experience there with CLL in the coronavirus?

Dr. Davids:

So, let me just preface all the remarks today by saying that we're probably going to end up having more questions than answers in terms of right now. We don't have a lot of data on CLL patients that's been aggregated. But I think the first question that you're asking is certainly one I can address in terms of my own experience with CLL patients and coronavirus.       

As you alluded to, Boston has really been the second most common area for coronavirus after the New York, New Jersey area. So we've seen quite a few cases coming through our hospitals and it's really transformed how we're caring for patients through telemedicine and other ways, and the hospitals have been quite full with coronavirus patients.         

One of my fears in all of this is that there would be a huge wave of infections in our CLL patients. We know that historically CLL patients are at a higher risk of infections, but I would say that at least so far, I've been pleasantly surprised that we've only had a handful of our CLL patients who have been infected. I think that does speak to how good our patients are at following these self-isolation orders and staying out of harm's way, and really emphasizes to me how important it is that they continue to do that. Even as we start to open up the state again and get people back out, I think CLL patients need to be particularly cautious.

Andrew Schorr:

All right. So we've had a lot of questions though. People say, "Well, I'm in watch and wait," or, "I'm on a certain treatment," or, "I've been in remission for a number of years,” “I'm MRD-negative." Do you have any sense of whether the coronavirus experience varies based on that? Or is it more about what you call co-morbidities? Do they have heart issues or diabetes or overweight or age, whatever?

Dr. Davids:

So that's the first one I can say we don't know. That's a critical question that we're looking at trying to gather evidence for now. I think historically we have seen that patients who have had prior chemotherapy-based regimens or even novel agent regimens have a higher risk of infections than patients who are on watch and wait, because the disease itself can impair the immune system. But so can the treatments, particularly for patients who are on active treatment, probably to a lesser degree in patients who have completed treatment and are in remission, but there can be some long-lasting effects of the treatments on the immune system.    

So, I think we don't know how much increased risk patients are after treatment compared to watch and wait. It may not be as big of a difference as we expect. We're going to need the data to really guide us there.

Andrew Schorr:

Now, Michele, among the treatments you've had is ibrutinib (Imbruvica), right?

Michele Nadeem-Baker:

That's correct.

Andrew Schorr:

So you probably are well aware, I heard that a few weeks ago, there were articles about whether a BTK inhibitor, Bruton’s tyrosine kinase inhibitor of which ibrutinib is one, whether that could have some effects in limiting the really bad effects of the COVID-19. So did you wonder whether that protected you, Michele, to some degree, that you have that medicine?

Michele Nadeem-Baker:

I did wonder, and I also had regretted that I was no longer on it when I started reading that, because I didn't know if there were any benefits still in me, which is something I do wonder, because I have been off it now about a year. Is there a cumulative effect, and have they even found if it will protect us?

Andrew Schorr:

Let's ask one of the experts. So, Dr. Davids, you're well aware of that and maybe, I guess there are studies going on unrelated to BTK inhibitors among many other medicines for the cytokine storm, I think you call it, really when people are very advanced with COVID-19. Do we know anything about these CLL BTK inhibitors?

Dr. Davids:

So I can speak to that directly. I was a co-author on that paper, and really our hypothesis is that there may be a protective effect of the BTK inhibitors. And exactly as you're alluding to one of the issues people run into when they get the COVID-19 infection is a massive inflammatory response and that that can often lead to the breathing difficulties and the need for mechanical ventilation. So some of these same chemicals that get released that cause inflammation are the very same chemicals that can be blocked by the BTK inhibitor drugs like ibrutinib and like acalabrutinib (Calquence).       

So, we think this is something that really should be studied, and it is being studied. We actually have a study that's open now at Dana-Farber, looking at ibrutinib for all patients. It's actually not specific to CLL or even to cancer patients. It's for any patient who gets COVID-19 to try to blunt that inflammatory response. We don't know how the study is going to turn out yet, so we don't know if it's going to be beneficial. I think if there is benefit, it's going to be in the patients who are actively on the drug. So I think having had ibrutinib a year ago, or even a week ago is not going to be protective. So you would need to actually restart the drug to have some benefit. And it would really be in the situation where you had a known infection with COVID and were doing it in the context of a trial.

Andrew Schorr:

Dr. Davids, I want to go back to this whole specificity of CLL. So we have people who maybe have long remissions. I had a 17-year remission after FCR, and after the sinus infection subsided and things like that, I had a pretty normal life. I didn't think about CLL that much for a long time. So then you're out, you're active, et cetera. So now the country, all 50 States are opening up. As we do this program, here in the U.S .it's Memorial Day weekend, people want to go out and be active like they have before. What are you telling your CLL patients, and does it vary by where they are in their CLL journey?

Dr. Davids:

So I've been pretty conservative with what I'm telling my patients, because I think there really is uncertainty now about whether patients who are on watch and wait are at less risk than patients who have been through prior treatment. And I think to me, it seems pretty clear, patients who are on active treatment are at the highest risk right now. So for those patients, it's pretty clear-cut. I tell them to remain in self-isolation, really don't re-integrate at all into society, even as things start to open up.           

I think for patients who are on watch and wait, or have been treated in the past and have been in remission now for some time, maybe I feel a little more comfortable starting to relax things a bit, but it still makes me quite nervous in the absence of data. So for most of my patients, I'm telling them really to still err on the side of caution, stay home. If you have a partner who can be the one to go out and get the groceries, have them go out, or get the food delivered, and really continue to lay low for now until we have more effective treatments and hopefully eventually a vaccine,

Andrew Schorr:

Okay. Michele, you and I are patients. So you've been home for weeks and weeks except walking the dog. Brian, your husband, is there with you. So how do you do the activities of daily living? Are the groceries being delivered? Does Brian go get them? What do you do?

Michele Nadeem-Baker:

So I will say there is one big, huge fear in our home, and my husband is considered a necessary employee.

Andrew Schorr:

He's a government employee.

Michele Nadeem-Baker:

He goes into work daily into his lab. Of course, they wear protective equipment, but I do have that fear. We've set up protocols that he shares actually with all of his employees and with his entire organization as to what we do to mitigate this. So we have our own at-home mitigation methods. But I do know there is the danger that perhaps when still something could happen. But I do say, if people have their spouses or anyone in their home going back out, they still have to, as Dr. Davids was saying, be conservative and not to let up on that. And that's one of the things we will continue. We've discussed it.

The other thing is the way we do things now is we get things delivered when possible, I will not touch the things until they are sprayed, wiped with some type of high enough disinfectant that will take away the germs. So that is how we're dealing, and we will continue, and I will continue at least for the foreseeable future to be very conservative, even though I would love to go out. I will start to go maybe for a walk on the beach if it's not crowded in off hours, but again, it'll be alone.

Andrew Schorr:

Okay. One word by the way, and Dr. Davids maybe saw this. The CDC came out with something maybe yesterday or last night saying they're not so worried about you getting it from surfaces. There's a little less worry about that now as we learn about the virus. And that's something I want to ask you about. There's a lot we don't know, right? And certainly, us CLL patients are saying, "Well, tell me about if I have 17p in the virus, and tell me if I'm taking a BTK or venetoclax (Venclexta)," or whatever. "How's it different?" Are you in your CLL world of investigators around the world talking to one another, trying to get us answers?

Dr. Davids:

We absolutely are. And I would say, we're in pretty dark times right now, but to me, this has been one bright spot, which is that there's been really an incredible collaboration between investigators around the world. Here in the U.S., Dr. Anthony Mato, my dear friend at Memorial Sloan Kettering has led an effort to pull together data from over 40 different academic centers, and now is also collaborating with the group in Europe. The European Research Initiative on CLL (ERIC) group there for CLL is doing a lot of good work around this as well. So rather than each institution trying to report their own single center experience, we're now putting these together, so we can look at the initial several hundred patients with CLL who unfortunately have been diagnosed with COVID-19 infection, and to really start to tease out some of these questions that you've brought up, which are the key questions. And I think by pooling our resources, we're going to have enough data to say something meaningful for patients.

Andrew Schorr:

Okay. Which is why we're going to be doing these programs going forward, folks, every two weeks. And we'll get Dr. Mato on a program for sure.           

So here's a question we got in, and this is really about going to work. And obviously, people have different kinds of work. This person I'm going to tell you about is right in the center of it. She says, "I'm a watch-and-wait patient. When is it possible for me to go back to work again? And what if I'm an RN working in an ICU?" Which is sort of ground zero. Yeah, I saw your reaction.

Dr. Davids:

Yeah.

Andrew Schorr:

She wants to know, first of all, let's talk about her. I assume it's a woman, shouldn't say that. It could be a male or female RN, but what about where you work? And in that situation too, what do you say?

Dr. Davids:

Yeah, that's a tough one. That's someone who could potentially be on the front lines and at higher risk of exposure. I would say that at our institution, it's a large institution, we have not had any documented cases where healthcare workers have acquired the infection from patients or other people that they're managing. And we've had very good supplies of the PPE, and we're very careful with that. So I think that that is helpful, but we do know that CLL patients are immunosuppressed, even if they're on watch and wait. So I think for this person, if there's any way they can continue to stay out of work, that would be the conservative approach right now. But if they absolutely do have to return, I think if they have the proper protective equipment, that risk is probably low.

Andrew Schorr:

Right. And maybe they can be reassigned in the hospital. I know my daughter-in-law is a nurse practitioner in LA. She was able to get an assignment doing basically telemedicine. She had a lot of concerns for her family. 

I will mention going forward in one of these programs we'll do, we will do one on work issues, because you may be saying as a CLL patient, "It is unsafe for me to go back into that work environment. What are my rights? What are the options?" And I think we're going to have to talk about that. We'll talk about financial issues too, because let's face it folks, here in the U.S., more than 40 million people who have filed for unemployment and probably many others, who've lost their work, and we're talking about in CLL, often medicines managing CLL chronically, but where you have a co-pay, depending upon your insurance, lots of issues like that.     

Okay. 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"?

To be continued in Part 2….

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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