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Coronavirus: Separating Fact From Fiction for CLL Patients

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Published on April 16, 2020

Key Takeaways

“We're learning every day, and we're modifying and adjusting based on what we learn,” says Dr. William Wierda, from The University of Houston MD Anderson Cancer Center, as new information continues to come to light on the novel coronavirus. 

Can cancer medicines be used to treat COVID-19? Does the effect of the virus vary by CLL subtype? Is ibrutinib (Imbruvica) being mixed with Coca-Cola? Watch to hear expert perspectives on questions like these and more.

With much misinformation circulating online, Dr. Wierda and Dr. Kerry Rogers, from The James Comprehensive Cancer Center at OSU, joined Patient Power to help chronic lymphocytic leukemia patients separate fact from fiction and explain how care is being modified during the pandemic.

Although this is a sponsored program, PatientPower 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 | Coronavirus: Separating Fact From Fiction for CLL Patients

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 April 15, 2020

Andrew Schorr:
Hello, it’s Andrew Schorr from Southern California, a CLL patient for now, 24 years. Welcome to this program sponsored by Pharmacyclics and Janssen. We appreciate their support, although, like any sponsor of Patient Power, they have no editorial control. We have two noted experts and CLL specialists with us, and I’d like to ask them to join us. Coming from Houston Texas is Dr. William Wierda from the leukemia department at MD Anderson. Also joining us from Columbus, Ohio in the James Cancer Center at Ohio State is Dr. Kerry Rogers, so welcome. Bill, what is your title at MD Anderson?

Dr. Wierda:
I have several titles. I'm in charge of the CLL program here. I am a deputy chair for the Department of Leukemia. I'm the center medical director for leukemia which is our outpatient operations. I'm an executive medical director for our inpatient medical services.

Andrew Schorr:
It makes me think you are a busy guy. I'm sure. Thank you for your time being with us. Kerry Rogers, what's your position at Ohio State?

Dr. Rogers:
My title is a little bit less impressive than Dr. Wierda's. I'm an assistant Professor in the Division of Hematology and part of the CLL program. I also take care of people with hairy cell leukemia.

Andrew Schorr:
All right. We have tons of questions, and believe it or not, presto, we have approaching 200 people online with us. Mostly people living with CLL, other people, perhaps even from industry are very interested in what you're saying or maybe even government. Let's start with what's been in the news. An article came out in Forbes, and there were other comments that quoted your boss, I guess, Kerry, Dr. John Byrd. It was talking about whether a BTK inhibitor, Bruton tyrosine kinase inhibitor, like acalabrutinib (Calquence) or ibrutinib (Imbruvica), or one in trials, zanubrutinib (Brukinsa), there may be others. Whether that could either have some, I don't know, prevention or amelioration of the COVID-19 virus, or whether for the sickest people, it could be used as a treatment to alleviate or lessen the cytokine storm.
 
Kerry, why don't you talk about that since John Byrd was quoted, and I wanted to ask Bill's opinion too?

Dr. Rogers:
As we all know, 
COVID-19or the disease caused by the SARS-CoV-2 virus has a whole spectrum of illnesses it causes from a group of people that have no symptoms whatsoever or something like just temporary loss of taste or smell to people who are very, very sick, require ICU care, or end up on a ventilator and people that die from it. Part of what we are learning makes this so much worse clinically for some people that get this infection is something called cytokine storm. It's an immune activation that causes problems in the body, and it's in response to this virus. So, some of the treatments, not just the potential for use of BTK inhibitors, but things you might have heard of in the news like tocilizumab (Actemra) are geared towards blocking this immune inflammatory response, hoping that people won't get as sick if their immune system's not as activated.
 
One of the mechanisms of BTK inhibitors is that it inhibits some cell signaling pathways, not just in leukemia cells, but in healthy cells that reduce these inflammatory pathways that we think are causing some of the severe illness in COVID-19 patients. This is talking about use in people not with CLL, necessarily, but also in people without CLL to reduce this cytokine or inflammatory response hoping that people who are critically ill that are in ICU or who are in a category where you think they're going to go on to be critically ill might not be as sick if we can reduce this response using a BTK inhibitor
 
It's actually the mechanism of the drug that causes a benefit in CLL in some cancers can also be used to block a specific type of inflammation that theoretically might help people who get very sick from COVID-19 survive their illness and recover more quickly.

Andrew Schorr:
Dr. Wierda, at this point, we don't know. I mean, some people are trying, but we just don't know.

Dr. Wierda:
We don't know how well it works for the severe respiratory distress that some of these patients are in requiring sometimes ventilator support, et cetera. We don't know how well it is in terms of modulating that process.

Andrew Schorr:
Kerry, another question for you. Some of the reports said that ibrutinib was being mixed with Coca-Cola. Maybe I didn't misunderstand it, and I get 
immunoglobulin infusions and some people have had FCR or BR different infused therapies that said, "Gosh, are they going to inject Coca-Cola with ibrutinib in my veins?" I got that wrong. Maybe you could explain it.

Dr. Rogers:
The short answer is no. It's not going in an IV. The only way we know currently to give people ibrutinib is through an oral route, so people swallow it. The problem is in people who have become very sick, especially those who are on a ventilator, as a practical matter, you just can't swallow pills, so doctors and nurses put special tubes through usually the nose into the stomach to administer medications, fluids, things people need. For anyone who's seen ibrutinib, it's either a pill or a capsule, and you just can't get it through that tube into the stomach to help the patient. So what you can do is a some are crushable.
 
Ibrutinib, I know for sure the capsules can be opened, and then Coca-Cola is mixed with it because it's very acidic. Obviously, Coca-Cola can go in someone's stomach, right? You mix actually the ibrutinib medication with the Coca-Cola, and then that allows it to be administered via a tube so that it can get into someone's stomach without them actually needing to swallow a pill if they're too ill to swallow a bunch of pills.

Andrew Schorr:
That clarifies it. Dr. Wierda, so right now, people are wondering, "Can a cancer medicine like a BTK or maybe some others be protective?" This whole idea of trying to figure it out. You're the major research center. Where are we now if someone develops COVID or trying to prevent it among people like me or others with CLL, who are vulnerable?

Dr. Wierda:
When I think about COVID and think about therapeutic approaches to treating COVID, I think about things in two phases. One phase is where you're exposed to the virus, and the virus infects cells that are in the respiratory tract. During that infection, the virus is multiplying and growing. Therapeutically, what we would want if we wanted to intervene in that step of the process, we would want a drug or treatment that directly affects or inhibits the replication of the virus. There are a number of drugs that have been identified and are being tested for inhibiting and affecting the viral replication so that that will reduce the amount of infection and reduce the amount of virus that's present.
 
There's the replication, infection replication step. Then there's the immune step where the body's immune system will react against the virus. In that response against the virus and eliminating the virus, you get all of the things that we see in these patients who become severely ill. The severe illnesses usually don't happen until about a week or longer after the infection begins. A week or so after patients have developed their first fever, that's when they get really sick. That's really from the activation and overactivation of the immune system and some of the chemical messengers that the immune system makes, et cetera.
 
Intervention at that step is, as Kerry was just talking about, modulating, down modulating the immune system; ibrutinib and BTK inhibitors may be effective in that. Tocilizumab has been used, and so there are other candidates of drugs that perhaps intervene and affect that portion of the clinical trajectory of the COVID infection. You still want an immune response because you want patients to be immune to it so that if they get exposed to it a second time, and there have been experiences reported in terms of using steroids.
 
One of the common ways that we suppress the immune system in that setting has been steroids, particularly with the CAR-T strategies. We used tocilizumab. We used steroids. The jury's really still out in terms of whether or not steroids are effective. We've been doing this for a relatively short period of time, and we're still learning, and we have a lot of ideas. We really need to test those ideas, and we need to do that in a clinical trial-type setting.

Andrew Schorr:
A couple of comments I want to make, first of all, you guys have sent me tons of questions. Esther Schorr, my partner who’s behind the scenes, and she'll send questions beyond these. If you have a question now, and the doctors have agreed we can go longer than 30 minutes, just use that Q&A button at the bottom of the Zoom screen. A lot of people ask the same type of questions, so I'm synthesizing that as we go along. But hit the Q&A button, and we'll do our best to get to as many as we can.
 
Here's an area. Darryl asked this question, Dr. Rogers, “A lot of people are wondering, but you may not know the answer to yet, does the effect of the virus vary by..” we talked a little bit about what maybe medicine you're taking, but where you are in your CLL journey or even the subtype of CLL you have, or even, he asked about your blood type. He's got O positive. Is it different for him and somebody else? We don't know, do we?

Dr. Rogers:
I mean, there are two questions there, one about the CLL and one about the blood type. In terms of the CLL, we don't have enough experience yet to answer those questions, so there might be differences, but it will take a lot more experience to be able to answer that. I'd always like to think that no one will get sick, so we'll never have to have that experience, but I'm pretty sure that eventually, we'll see enough patients with COVID and CLL to answer. We're making an effort to collect experiences of people with CLL who gets COVID-19 across academic centers to make sure that we can get everyone's information together to do our very best to answer those questions.
 
For myself, I've been telling people and I believe that because people living with CLL are at 
a higher risk for infections even when they have never required treatment, I do think that anyone with CLL, in remission, on treatment or who has never needed treatment is at a higher risk for more severe illness from SARS-CoV-2 were they to be infected with it. I think those other very good questions are something we're just going to have to learn. The blood group one is also interesting. There was a paper out of China looking at how many people severe illness had rich blood types.
 
I looked at it, and I wasn't impressed that there were enough patients to draw really firm conclusions from that right now. I haven't myself read too much into blood groups, although there is some information circulating out there that certain blood groups may be more or less susceptible. I would like to see a higher number of people, and learn a little bit more about COVID-19 before I would be convinced that someone was really at higher risk based on their ABO blood type.

Andrew Schorr:
Some answers we don't have. Bill, you help now run the CLL Global Research Foundation, CLL specialists around the world. Are you guys talking, and are you making an effort, whether a registry or something, so that CLL patients around the world who may develop the virus make sure the data is helping everyone?

Dr. Wierda:
There have been a number of efforts to coordinate data collection and reporting. There are several of us who are communicating and collecting data, and those data will be summarized and reported. The easy answer to that is yes. It's not been through the global foundation. It's really more been the community itself coordinating and saying, "Oh, can we share information about patients that we have with CLL, and how they're doing, and what are our practices and approaches that we're using for our patients, what's working, what's not working?"
 
It's much easier to do that these days than it was 10, 20 years ago, because we have the Internet, and we have emails. It is ongoing. Yes.

Andrew Schorr:
Kerry, so you're in a major research center, so people wonder—many people are in your trials or Dr. Wierda's trials. Before this all happened, we were talking about combination therapies of a BTK inhibitor with venetoclax (Venclexta) or other combinations. Pretty exciting combinations maybe to be more effective against CLL than ever before. Is that full stop, or where are we with that? Also, the monitoring you need to do when normally people would come to Ohio State, maybe they can't.

Dr. Rogers:
This was actually, I think, been a very challenging aspect of this pandemic for us. CLL patients are sometimes in a more fortunate position where starting treatment, you get a window to do it. It's not like you have to do it today. This has affected our clinical trials on two fronts. One is when people could start treatment in a clinical trial and also how to make sure that people who are currently receiving treatment in the clinical trial stay safe. For people looking at starting treatment, because our clinical trials require more visits and more face time, sometimes more testing and more healthcare exposures. For people with other options, we've been prescribing less trial treatment for people starting just because it's probably safer for them right now.
 
Also, hopefully, and have been successful in trying to delay anyone starting treatments until several weeks from now when things are a little better known, and it might be safer to have in-person visits, because I think that's important when you start a new treatment. For people currently enrolled in clinical trials, our Institutional Review Board and the sponsors of all our studies and the National Cancer Institute have all been pretty aligned with what we want to do which is try to keep people as safe as possible. We've been conducting 
telemedicine visit for a lot of our clinical trial visits, and in some cases, getting people to have their blood drawn when needed at a local lab, which is less people and less risk than coming to our hospital.
 
Then shipping oral agents. For some of the IV agents, it still makes sense for people to come, or some of those have been omitted, because it's too risky to come to a major hospital during this time. For people that live out of state too, it's very challenging, because just the amount of travel needed to come to Ohio State might put them at very high risk. For people already getting treatment in the clinical trial, we've worked through all the regulatory and administrative issues for the most part to do telemedicine visits when appropriate, have them get labs in their local area and ship them the drug. It is not as good as an in-person visit, but like anything, it's always a risk/benefit. The benefit of them doing telemedicine and being able to stay on their steady treatment is still there, and then the risk of coming to the academic centers is excessive right now. Once this gets straightened out, we'll have people back for in-person visits, but we've put a lot of effort, my whole clinic team and the clinical trials office.

Andrew Schorr:
I just want to put in a plug, in a couple of hours Esther's going to host a program on telemedicine with another hematologist oncologist, Dr. Mike Thompson from Milwaukee. Esther's going to do a role play with him. How does it work for a patient, and can you be confident? If some of you can rejoin us for that, we're really going to walk through telemedicine, which you all are doing. Bill Wierda, so now, people are wondering not just about trials, but also other treatments that they're having. For instance, I get immunoglobulin, IVIG. Two questions about that, how do we know with our doctor whether we should continue on that and at the same schedule?
 
Also, some patients have been fearful that there would be a shortage, and then I'm going to add one other part of it. We understand that immunoglobulin is pooled from people donating blood and passing on antibodies. Would COVID antibodies be ending up in IVIG at some future time where we'd get our IVIG, we'd be protected from various infections, including that? That's a bunch of stuff. First, should we get it on the regular schedule, and also shortage and protection?

Dr. Wierda:
If you're getting it already, you're getting it for a reason. That's because you have low antibody levels, and you're at increased risk for infection. There isn't anything about what's happening right now that would make that any different other than the risk of going to the doctor and interacting and exposed to people who could be COVID-positive. I think it's really a balance between what's your risk of being exposed to something by going to the doctor's office versus the benefit that you get from the IVIG? The patients that I have on IVIG are on it because they have had a significant infection, a pneumonia for example.
 
That risk does decrease as we go into the spring and the summer months, so I'm a little bit more flexible in terms of holding off on IVIG during those summer months when the risk is lower for infection. I think right now, we're trying to do everything that we can to allow patients not to have to go to the doctor, not to have to have labs checked or to have a doctor visit. But if a patient is really dependent on it for preventing infection, I think it is worthwhile continuing. But I think, again, you have to balance the risks for exposure with the benefit.

Andrew Schorr:
Supply?

Dr. Wierda:
Supply, we don't know yet. We are seeing other infections arising in patients with COVID infections, and so there is—although you don't get protection from COVID with IVIG, you may get protection. Individuals who have COVID even if they're not CLL patients may have some protection by getting IVIG, and so we just have to wait and see. There may be a shortage. I don't know for sure if that's going to happen. It depends on what the usage is. It's a little bit different a process compared with donating blood in terms of how they produce IVIG. They don't have the same screening procedures, et cetera.
 
They don't screen out, for example, patients or individuals, donors who've had hepatitis in the past, so you get antibodies against hepatitis in the IVIG product. They do detergent wash it. So it's a safe product when patients receive it, but the screening process and the donor process is different for IVIG than it is for blood products, where they do screen out for blood products for infections like hepatitis.

Andrew Schorr:
Lastly, there are people affected by COVID who developed the antibodies, and we'll talk about antibody testing along the way. Will that end up in IVIG?

Dr. Wierda:
Yes, it could if an individual donates who's had a COVID infection and has recovered. There is work right now, and we've heard from the FDA director, Steve Hahn, about trials with hyper-immune plasma from individuals who've recovered from COVID being used as a therapy for COVID infections. You may have what's called passive immunity by getting antibodies against COVID if the preparation of IVIG that you get includes plasma from a donor who's had a cleared infection from COVID.

Andrew Schorr:
Kerry, we talked about a lot there, but how does it work for you practically with Mr. Jones or Mrs. Rodriguez, a specific patient? Should I come in? Should I stay on the same schedule? For instance, if somebody was getting obinutuzumab (Gazyva), an infusion, as part of their Venclexta combination, what about that? People are worried about the schedules. How does it apply to them? What are you telling people?

Dr. Rogers:
I think that for every individual patient, it is an individual decision. That is what the need for that treatment is or what the benefit is weighed against the increased risk of coming for the treatment. For people that have been doing obinutuzumab and venetoclax, which is also the brand name is Venclexta as you were mentioning, if you've gotten a lot of obinutuzumab infusions already, everything's going great, and the CLL is controlled. It's probably not worth it to come in just for an obinutuzumab infusion. However, if it's something you really need, like you just started venetoclax and you absolutely need to continue on it and come for monitoring for tumor lysis, well, yes, then it's very important that you keep those visits.
 
For my own patients, I've been looking ahead at who's supposed to come in the weeks coming up and going through for each individual person, and deciding depending on where they live, how safe it is to do this thing; to come if they live very far away or not, also how important that treatment is for them. I think that's what Dr. Wierda was mentioning for the IVIG too. It matters to that person. How long have they been on it? Is it summer? How many infections were they getting? You just have to decide. I think that that's a discussion that has to be made with every individual and their doctor.
 
I also have people that I see that also get care locally, and some local cancer centers have done an outstanding job, removing two-thirds of the chairs from the waiting room, so no one's together. Everyone's wearing masks, washing their [inaudible] something. We screen everyone on the way into the cancer center for exposure to COVID or symptoms. It also depends on where people are going, what the risk is, but it's definitely how much benefit this treatment is to them right now. There are cases where I thought the potential benefit of infusion for someone was not worth the risk of them coming.

Andrew Schorr:
Dr. Wierda, we have a lot of people, and I was this way for four years, on 
watch and wait. If I understood Dr. Rogers correctly, watch and wait or more advanced CLL, we're all at risk. There are certain precautions we all need to take. Do you tell watch-and-wait patients anything different than somebody else?

Dr. Wierda:
No, not right now. I mean, everyone is at risk, whether or not you have CLL. I think the recommendations right now are for social distancing. That really is the thing that is making potentially going to make the biggest difference in terms of how bad this outbreak is going to be, et cetera. So everybody should be social distancing. Everybody should be being very vigilant about handwashing, whether you have CLL or not. I think patients with CLL whether they're in watch and wait or on treatment are at a bit higher risk, because their immune system does not work quite as well as if those individuals who don't have CLL, so they need to be extra careful. They need to minimize and do everything that they can to reduce their risk for exposure, et cetera.

Andrew Schorr:
Kerry, I had FCR years ago, and for an extended time after that, I got sinus infections. Even at some point, did, like Dr. Wierda mentioned, got pneumonia, which then argued for the IVIG, which I continue to get, but it subsided after a while. Let's say somebody's been on Venclexta and obinutuzumab. Then minimal residual disease or measurable residual disease negative, they feel, "I'm good." You would still consider them vulnerable, right?

Dr. Rogers:
Yes. All of the treatments that people can get, FCR being a chemoimmunotherapy or the BTK inhibitors as well, venetoclax, obinutuzumab, which is an anti-CD20 monoclonal antibody, all of them impact the immune system in various ways. I do think that the duration you've been on it does affect how your immune system is impacted, by the treatment, but I would never say that there's a time where that doesn't have an impact on the immune system, or everything is perfectly fine. Don't worry about it, that this doesn't increase your risk.
 
Someone that just finished a treatment when their healthy lymphocytes, which are infection fighting cells are lower, that's going to be a different type of risk than someone that finished treatment many years ago and has had more immune recovery after something like the chemotherapy. I don't think there's a time where I'd say, "Oh great, this is fine. Don't worry about it." Since we know that even people with MBL, which is of course, it's a pre-CLL condition, where there are very little CLL cells in the blood are at higher risk for infection. I think that this is just something that people will live with indefinitely.

Andrew Schorr:
Dr. Wierda, that leads to another area that a lot of people are asking about. We're hearing the news, discussion federally, and even in some states here, where I am in California, about opening up, getting the economy going, people going back to work. We say, "Well, gee, you guys have talked now for 30 minutes about our vulnerability, wherever we are in CLL. We want to get back to work,” or “we're a volunteer,” or “we are working.” Whatever it is, “We want to get out of the house.” How are we going to do that? How long is that going to take?

Dr. Wierda:
I don't know. There was a report I saw yesterday on the television. That was, I think, a Harvard analysis that indicated that we would be social distancing through 2022, so we don't know yet. It's going to depend on how long before we get an effective vaccine. It may be easier if we have readily available testing and can do intensive testing to see who's been exposed, who's got immunity, et cetera. I've been working on this and preparing MD Anderson with our leadership for the last two months, and the one thing I can say is that things change daily.
 
The discussion that we might have next week about this will probably be different than what we would have today. We're learning every day, and we're modifying and adjusting based on what we learn and we know. I do think it's going to be a while before we're back to being routinely working and in some type of routine. I don't think our routine is going to be back to the way it was six months ago for quite a while though.

Andrew Schorr:
Kerry, so we have people who are watching, and we have over 200 people. Folks, we'll go another 15, 20 minutes or so, and then we’ve got to let the doctors do everything else they have to do. People do have certain roles now. We have people with CLL who are even healthcare providers. They're all saying, "Well, should I go on disability? Should I stop? What should I do?"

Dr. Rogers:
That is a very individual decision depending on what your job function is. Some people who are healthcare providers might be able to do other things at their job that aren't direct patient care or would avoid COVID. I have definitely advised my patients who have CLL who have jobs that have a high level of potential exposure right now, people who are healthcare providers, definitely, but also things like bus drivers, or something where you're interacting with the public in a situation where you can't protect yourself to do FMLA or short term disability or whatever to make sure that they are not exposed to COVID-19.
 
Some of them have chosen not to do that, which I think is very reasonable. This is whether or not you work or accept risk is always an individual choice, but I would advise people with a high degree of contact with the public that this is not safe to be doing right now. And if there are options to work from home, change your job responsibilities or short of that, use FMLA or 
disabilityI have recommended that people do that. Some people work in a manner where they don't get exposed to many other people, and that's obviously fine.

Andrew Schorr:
I'm very fortunate for that. In a week or so, we're actually going to have on another hematologist in the multiple myeloma area from Boston, Dr. Raje. She was stricken with COVID as was her husband, a physician who was quite sick. Maybe she'll share a little bit of that, but I just want to say on behalf of the community right now, “Thank you, thank you, thank you as healthcare providers for going to work and being around patients.” Bill, that was the next thing I want to ask you about. We're getting questions. Do you at MD Anderson now have experience with CLL patients who've been diagnosed with COVID? If so, what's happened?

Dr. Wierda:
We have had patients with CLL who have had infection, and there have been varying degrees of severity of illness for those individuals. I probably shouldn't give too much detail about the particular patients who we've seen just because of confidentiality concerns, but we have seen patients here with CLL, who have had COVID infections. We've had patients recover from their COVID infection, and gone to the ambulatory setting. Yes, we are seeing those patients.

Andrew Schorr:
Kerry, how about you?

Dr. Rogers:
I'm in Central Ohio, and Ohio is currently oddly very good at pandemics, so we've made a huge impact here with early social distancing led by the state government. I've actually not had any of my CLL patients or any of I know within our group get COVID-19 that were treated here.

Andrew Schorr:
That's good news. Bruce asked the question. He said, "Because we are immunocompromised as a CLL patient, will our immune systems be less likely to go into cytokine storm?" Kerry, do you want to take that one?

Dr. Rogers:
I think that's an outstanding question. I don't know the answer to yet. If Dr. Wierda does, I'll let him take a shot at it, but I don't really know the answer to that yet.

Dr. Wierda:
I don't know for certain, but I would speculate that you may not see the severe reaction. I would worry though, about an overwhelming infection, because the body's immune system is really not able to eliminate the virus as it should if the immune system's not working well.

Andrew Schorr:
Okay, so, about vaccines. We know it's a ways off, quite a ways off, so we've always been asking you questions about vaccines. Should we have the zoster vaccine (Shingrix) for shingles? Should we have the pneumonia vaccine? Do we know anything about what they're working on, Kerry, related to vaccines and whether it will be safe for CLL patients?

Dr. Rogers:
I think that's an outstanding question. I know there are vaccines that are currently in clinical trials for mostly frontline healthcare providers. That's what I've heard about so far, and at least one of them is a killed vaccine, which I would presume to be safe. Usually for our CLL patients, killed vaccines we consider safe, and live ones are the ones where we think that there might be some risk there. Ultimately, which vaccine ends up being successful is unknown at this point. Then even if it's a killed vaccine, I think it'll be a while before we get safety data in immunocompromised individuals, so we'll just have to see if we get a vaccine, what it's like and what the safety data is before saying whether or not that's safe in CLL patients, and of course, like Shingrix, we will eventually get experience in people living with CLL.
 
I've had a lot of my CLL patients ask me, "Do I have to wait until there's a vaccine that works in CLL patients that's proven before I can see my grandkids again?" I think that is such a tough question, because it is so hard to be away from loved ones in terms of at least physically close to your loved ones. This is all about risk. There are lots of vaccines that if you get enough people in the community, not people living with CLL, but people that don't have CLL protected, the spread will drop so the risk will be low enough that then it would make sense to be out in public, even if there isn't a vaccine that's demonstrated to be safe for CLL patients.
 
I don't know that even with a vaccine, the risk of COVID-19 of anybody getting it is ever going to be zero, but for myself, I think you’ve got to wait till you get to a low enough level for who you're contacting and what communities are in that you would feel comfortable.

Andrew Schorr:
Well, this is going to emerge over time. Dr. Wierda, so people take other medicines. Leslie wrote in and says if hydroxychloroquine (Plaquenil) suppresses the immune system, is that harmful to CLL patients who have a suppressed immune system already?

Dr. Wierda:
I have patients who are on Plaquenil, and we use other immunosuppressive therapies if they have an autoimmune process. If it's indicated and there's an active autoimmune phenomena in patients with CLL, we do use it to treat that. Another example would be CD20 antibody, rituximab (Rituxan) for patients who have autoimmune thrombocytopenia or autoimmune hemolytic anemia. We do use Plaquenil. I have used Plaquenil, particularly in patients who have autoimmune problems.

Andrew Schorr:
Kerry, we got a question from Abdinner, if I got it right. He said he's on RCVP combination therapy. I guess that—let me see if I get it right: Rituxan, cyclophosphamide (Cytoxan), V is vincristine (Marqibo or Vincasar PFS) maybe. I don't know. Great, and prednisone.

Dr. Rogers:
Yes.

Andrew Schorr:
He's on that, and he's supposed to go in for his fourth cycle, but he just can't get there. He's out of the country. He's in not in the U.S. He's in another country, but he says, "What impact do you think it would be if he can't continue right now?" He's had four cycles.

Dr. Rogers:
I mean, that's an outstanding question for that person to ask their doctor. Even if they can't get there, they should have a way to communicate with their treating physician, but if he's already gotten four cycles and it's worked, then if you can't get it, you can delay and then reassess if it's time to do a treatment or what treatment is best when you can get back with your healthcare provider. Usually, by that far into treatment, people have had some response to their CLL so that they're not ill enough from it, that waiting would be an issue. That's 100 percent a discussion he has to have with his doctor.

Andrew Schorr:

Dr. Wierda, you're at a major research center as Dr. Rogers is. It seems like there are a lot of drugs in trials. I mean, President Trump had mentioned hydroxychloroquine. He was talking about that a lot, but we've talked about BTK inhibitors. I did a program the other day related to another condition I have, a JAK inhibitor, another pathway to try to reduce inflammation. You guys must be looking at a lot trying to figure it out and for which patient with which underlying condition too, right?

Dr. Wierda:
For sure. I mean, that's one effort that we've been working on for the past several weeks in terms of coordinating. Everybody's got a good idea. There are a lot of ideas that are circulating around. We have a collaborative group that's working on research, particularly related to COVID and therapeutics and coordinating. What are we going to test? How are we going to test it? How are we going to coordinate those trials being done here? For sure, there's a lot of activity.
 
A lot of our cancer research has slowed down, because our patients are not able to come in as they were, and we're doing some telemedicine, and so many of our investigators are thinking about and focused on COVID and how to treat it and what are some of the things that we have access to that might be useful, for example, ibrutinib and acalabrutinib (Calquence).

Andrew Schorr:
Kerry, people are hearing all different kinds of things on the Internet. We at Patient Power and our friends who run the major Facebook CLL groups are really careful about this, but there was a buzz a couple of weeks ago and a fellow put out a warning about how the sickest people with COVID had been taking, I think…

Dr. Wierda:
…non-steroidals.

Andrew Schorr:
They were taking steroids.

Dr. Wierda:
Non-steroidals.

Andrew Schorr:
Non-steroids, sorry. Non-steroids. What about that? Should I stop taking acetaminophen (Tylenol) or ibuprofen (Advil or Motrin) or whatever?

Dr. Rogers:
It was non-steroidal anti-inflammatory. An acetaminophen or Tylenol is the most common brand name for that, actually is in a different category. Other than making sure you don't overdose on it, I'm not sure that acetaminophen or Tylenol has the same implication, but there's a lot of buzz about ibuprofen, which is branded as Advil or Motrin and similar drugs there. The latest update I saw on that, it wasn't really firm that that was causing an issue. I haven't actually seen any high quality scientific data, but Dr. Wierda is nodding. I don't know if you've seen something about this. I don't.

Dr. Wierda:
No, I mean, just that we've been telling people not to take it because of the early data that was coming out, not to take the non-steroidals like Advil, naproxen (Aleve), those types of drugs. Tylenol was thought to be safe. Still, it's thought to be safe.

Dr. Rogers:
I think it depends too on why you're taking it. I don't know that people are sick and think they have COVID. That's different. If you are isolated, you're not high-risk for COVID, and you've been taking it for occasional knee arthritis, I think that may be something that you could continue as opposed to taking it for an illness that could be COVID.

Andrew Schorr:
Folks, I mentioned that with Dr. Mike Thompson from Milwaukee, we're going to do a program in a couple of hours on telemedicine, but let's ask specifically about CLL. Bill, if you were my doctor and you've been my doctor some of the time, if you normally would be checking my lymph nodes and my spleen, and I'd go to the MD Anderson lab. I get the blood test right there. You don't have that now in that way. How does telemedicine help you and me stay up on my CLL? How do you do that?

Dr. Wierda:
I mean, it depends on where you're at with regard to your treatment. If you're in a watch, so over the last four weeks, I have been doing what would be considered telemedicine mostly connecting by phone calls, asking patients to get their labs checked locally, and on the phone call asking if they're on treatment, if they're having side effects or toxicities from their treatment, if they're having any symptoms or problems, and making any adjustments based on that conversation. I don't have an option to do an exam, but you can tell a lot of what's going on just by talking to the patients asking them questions and reviewing their labs.
 
There are patients who do have active disease that I have had to come in and examine them, and have had to start patients on a new treatment for example if their disease is active, or they've developed resistance to the treatment that they're on. We are also able to do video calls now. Through Epic, we can do a Zoom call like we're doing now, where we can see the patient, and not just speak to them. Mostly, up until now, we've been doing phone calls to check in with patients. I think we're just going to have to delay their next visit for a few months until things are settled down and quieted down, and we know that they can come in safely.

Andrew Schorr:
Kerry, go ahead.

Dr. Rogers:

I was going to add that we started doing phone, but we've had increased video capabilities. One really nice thing that I've enjoyed about doing those is, I think, it's nice to actually see someone, so I think the quality of visualizing them is a little bit helpful over phone calls. Some people are able to, but one really fun thing is I've gotten to meet a lot of my patients' pets, their cats and dogs.

Andrew Schorr:
I’ve got Donovan here, and he's been barking some of the time, because the gardener is outside.

Dr. Rogers:
It was just fun, because I hear about patients' pets, and I've gotten to see a few of them. It was just a nice way to get to know some of the people I've been seeing for a while a little bit better.

Andrew Schorr:

I have to put Donovan on for a starring role. By the way, I mentioned this in a little Facebook thing earlier today. We're all trying to have a routine while we're shut in. If you have a pet, I know I want the dog with a mask on, around here, and that's helped me a lot. Just a couple more things because we will do a continuing series as best as we can in CLL. What about starting people on therapy, Kerry? Some people may be determined that you want them to start on venetoclax, but there's a protocol related to that. How do you do that?

Dr. Rogers:
I've had actually someone that recently, in the last couple of weeks, that had to start on venetoclax. That was clearly the best treatment. This was what needed to happen, and it needed to happen now and couldn't wait. I've done it. I think you have to really sit down with that person and figure out how far away do they live, et cetera. This person lived close to our center so was able to come and be monitored here in infusion. Of course, we take a lot of steps to protect everyone that's coming to the James Cancer Hospital. That worked out okay, but I know one of my colleagues has someone that needed venetoclax too that's coming from a distance, so we did something that is not their traditional way to prescribe it but that we have a lot of experience with, which is hospitalizing them to get them to the target dose quickly.
 
Then you have to monitor people really closely for tumor lysis, because it's safer to just keep them in their hospital room, get a room, get it done, and then be able to send them home on the drug. We've done it, but I think you have to sit down with the patient and decide what the safest way for that individual is. It can definitely be done, but it does require a little more thinking through some of those angles than usual.

Andrew Schorr:
Related to trials, they're still moving forward like some of these combination studies. Bill, you're still trying to get those answers.

Dr. Wierda:
Yes, but it's more difficult right now because we don't—for example, our research nurse staff, they're all working remotely. They all work from home. We don't have the same infrastructure, and our clinic volumes are way down. They've been way down for the last few weeks, because we've been trying to manage patients remotely and keeping them home. That will ramp up, I think, over time as time goes on, but I think clinical research has really slowed down. Laboratory research has really, really slowed down, but clinical research has slowed down. It's more difficult to put patients on studies right now. Hopefully that will improve soon.

Andrew Schorr:
Well, we're going to do everything we can for you. We've gone a long time. We want to let you back to your patients. I want to give you a chance to make a final comment to the CLL community. We have 200 people who've been with us straight through. We'll plan to do other programs like this with your peers in the CLL clinical community. Kerry Rogers, first you, what do you want to say to folks now who are worried? We're worried.

Dr. Rogers:
What I would say for people living with CLL that are worried is that you're right to be worried, that everyone should be worried, people with CLL and people without, that this is a difficult time. It's especially difficult for people that are potentially higher risk for severe 
COVID-19 infectionWhat I would also like to say is that while we are learning a lot and the information is changing almost every day, this is not forever. We will get through this, so make sure that you do what you need to do to cope with this as a person, whether it's having video chat dinner parties or walking outside on your property. Do what you need to get through this, because it's not forever, and we will eventually learn how you can get back to the things that you love doing.

Andrew Schorr:
Kerry Rogers, I want to thank you so much for being with us from Ohio State, and all the work you and a huge team works on in leukemia there. Dr. Bill Wierda, in MD Anderson, how about you, a comment you'd want to make to not just your patients but patients worldwide living with CLL and their families?

Dr. Wierda:
I think it's probably the message for everybody, and that is that, as Kerry said, we will get through this. There are a lot of very, very smart people working on this. I think the U.S. has been really on the forefront of medical science and developing new therapies. We have a very innovative infrastructure for discovery. We will get through it. We don't know how long it's going to be. I think it's important to listen to the doctors, listen to the science. It's important to do the clinical trials that we need to do that shows that treatments are actually effective. I think it's going to be a while before we get back to a new normal, but there will be a new normal, and we're here for our patients. That's for sure.

Andrew Schorr:
Well, we have 200 people now who want to give you virtual hugs.

Dr. Wierda:
Great.

Andrew Schorr:
Please pass that on to your nurses, researchers, colleagues and around the world as you talk to them. We want to thank Dr. Bill Wierda from MD Anderson for being with us, Dr. Kerry Rogers from Ohio State. We will do more programs. Send in your questions, your comments@patientpower.info. Bill, we'll let you go. Kerry, we'll let you go. Thank you so much. You can hit the little button, and you'll pop away. I just want to remind people if you can, we'll go through this telemedicine exercise with Mike Thompson who's also a noted hematologist-oncologist shortly.
 
All that's on the Patient Power website. How does it work? Mike's a wonderful guy, Esther will be hosting that. Thank you so much for being with us. Andrew Schorr here living with CLL, bur for a long time, we will get through this. I'm glad my dog cooperated pretty well. Thank you for understanding. Remember, 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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