Published on April 7, 2020
- Talk with your doctor about getting a prescription to do blood work at a local lab.
- If you normally benefit from taking an NSAID for other health reasons, it’s not recommended to suddenly stop.
- Elective procedures should be deferred, but if you need attention for an acute medical issue, call your doctor.
In an unsettling time for both patients and healthcare professionals, the coronavirus situation and resulted lockdown has given rise to many concerns from chronic lymphocytic leukemia patients about their cancer care - in addition to the risks of contracting the virus.
Leading expert Dr. Nicole Lamanna, from New York-Presbyterian Columbia University Medical Center, joined Patient Power for a Q&A session on the implications of the COVID-19 outbreak for the CLL community.
Watch as Dr. Lamanna discusses ways to find a safe balance between taking protective measures and managing CLL. Dr. Lamanna also explains the current procedures for symptomatic patients and where we are with CLL-specific coronavirus data.
[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.]
Transcript | How Will the Coronavirus Affect CLL Treatment?
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 April 3, 2020
Hello from wherever you may be, it's Andrew Schorr here with Patient Power. Thank you so much for joining us for this live webinar on issues related to the coronavirus, COVID-19 situation—and people like me and probably like you, or your loved one, living with chronic lymphocytic leukemia or maybe a related condition, SLL.
So, I'm in Southern California, but let's be joined by Dr. Nicole Lamanna, who is our dear friend at Columbia Presbyterian Medical Center in New York City. Dr. Lamanna, welcome back to Patient Power.
Hi. So, Nicole, you are in thick of it. We're all going to be facing it, or we all are to varying degrees. But where you are, at one of the largest medical centers in New York. First, just tell us what the situation is there and how it's been relating to your CLL patients.
Yeah, so, obviously, thank you for having me here. It's always nice to talk to you all. And obviously this is difficult times for everybody, so I think things are constantly evolving and changing. So, as more data and as we gain more experience for everybody on the call, I think that just, understand that there are a lot of things that we don't know yet, and are constantly evolving, even how we're dealing with things on a day-to-day basis.
So, from the outpatient setting for my practice, for the CLL folks, and I think many of you probably have this from your own experience with your physicians, is that clearly if we can telemed or keep most patients out of the hospital or out of obviously in the areas where there's a congregation of folks in general, we're trying to telemedicine and do phone calls and video calls for patients who are otherwise okay and well, okay?
And so, local labs, if needed—meaning if the labs are needed to be done, so that you can get them out to a close lab that might be empty or quiet and then having a telemedicine visit with your physician, is what we're doing for most of our patients.
Obviously, there are patients who are sick, and we don't want folks who are sick not getting medical attention. So I'm still seeing patients that are needing—whether they're getting intravenous medicines or whether blood support products, other things that require them to actually come in for their visit and be in the infusion center—those folks we are seeing. And so, we're open for business in that sense, because there are some patients that do need to be seen, because they have varying issues or complications due to their CLL and really need to be in.
That being said, the hospital has done a really great job of trying to—the outpatient environment is much quieter, given what's going on, which is very different. We'll talk about inpatient in a second. But, so patients are actually, when they come to the clinic areas, are actually going through screening questions. If there's a concern that a patient has even a possibility of having the COVID-19 virus, they're actually getting swabbed and sent home so that we know that they're safe to come back to the clinic. Within 24 hours, we get those results, actually shorter than that, but by the time you call the patient to let them know the results the day, then they know it's safe to come, because we have to protect the patients who are getting infusions in the cancer center—and so that they're not exposing everybody as well.
So, they're being screened before coming to see me in the clinic to make sure everything is all right. And then, we're dealing with that accordingly. So, there are no visitors as well, so we're limiting the visiting, as many hospitals are limiting visitation policy, so really just the patients as long as they can come on their own, they're the ones who are coming in and their visitors or family members or friends really aren't allowed in for the time being.
And so that's how we're dealing with it from an outpatient perspective, inpatient is obviously a completely different issue being part of what's going on from a major hospital center, that is obviously receiving and transferring patients who are very, very ill with the COVID virus. There are units that are dealing just for patients, whether they have cancer or not, that are COVID-positive.
We're still running our other services, so my inpatient leukemia service is still, has patients, but if we have positive COVID virus patients, we're trying to put them on a different unit that we're still taking care of those individuals, but that we're trying to keep the patients who are in the hospital for other reasons, who don't otherwise have COVID to try to make sure we can decrease infection spread and risk to the inpatients that are currently there. So there are many COVID units currently in the hospital that are dealing with this.
Okay. Nicole, and I've known Dr. Lamanna a long time, so I'm going to call you by your first name, Nicole, the number one thing people want to underscore and understand is, by having CLL, and maybe wherever you are on the continuum, watch and wait, or you're on multiple therapies, are we at higher risk, both for getting the virus and complications?
Yeah, it's not that the CLL puts you necessarily at a greater risk for getting the virus, right, because I think everyone is equally capable of infecting each other, in terms of infection receiving risk. The issue about the CLL folks, or actually cancer patients in general, is that the data that we have is limited, but for some of the early reports out of China and other, actually some other early reports from other areas as well, that the cancer patients in general, are obviously at a higher risk of complications if they are infected with the virus, because of their immune systems.
And also remember, for our CLL folks, many CLL folks are also older to begin with, right? So if your median age at diagnosis in their 70s, we know that age alone puts people at a greater complication risk, other co-morbidities, other medical problems. And so, all these things taken into conjunction together, puts folks with CLL, at higher risk from complications of getting the virus, and as I said, the early data from cancer patients as a group, because unfortunately, our CLL data we're gathering now, right?
So, where there are registries that already running both for cancer patients and for CLL patients specifically, to look at what's happening with our CLL folks and our cancer patients, but the early data as I said, en masse, on cancer patients, there's no doubt there's a higher risk of complications. There is no doubt that there is a higher risk, and we're seeing this on the inpatient unit of patients requiring ventilation and being in the ICU, who have cancer.
So certainly, the severity of folks with cancer, in terms of their outcome, is poor compared to the non-cancer patients. And that's what we're seeing as well.
Okay. I know it's tough for you as a provider and a lot of extra anxiety for us as patients. I want to mention a couple of things to you, first of all, we're going to approach about 150 people listening and watching, and we want to invite people, I've got many questions that people have sent to Esther, who is our producer, and myself, and Maui, our director, so we're going to through those, as many as we can.
Dr. Lamanna has graciously said we can go longer than 30 minutes, so we'll see how it goes. If you have a question that comes up for you along the way, at the bottom of the Zoom window, is a little Q&A button. So if you hit that, that goes to Esther, Esther kind of triages questions to me, don't use the chat, or there's another thing where you raise your hand. Don't do that—the Q&A button, okay.
So, let's see where the discussion goes. One thing that's very current, Nicole, and I've been getting messages from people in other countries, too. And President Trump mentioned it, kind of obliquely yesterday and maybe Dr. Fauci and others—and that is about whether we should be wearing masks if we have to go out at all? So, first of all, what's your thought? What's happening in New York?
Well, yeah, so, it's different, most people are from what I gather, in the local areas, because New York is a little densely populated, so it's a little different here, right? Because the exposure of folks who are living in apartments and then going on the street, most people are wearing masks, because of the proximity.
I think again, I think it depends on where you're living and what's around you. So for folks who are home and live in the suburbs, and have a backyard and a big block and things like that, I think you don't necessarily, if you're going to go talk a walk and get some fresh air, there's a lot more room where you live, I think you don't have to wear a mask.
I think that if you're going into the stores to the grocery stores, hopefully many of you are trying to stay home and stay isolated as best you can. And so, if you have to make that trip into the grocery store, then I think that it's not unreasonable to wear a mask and gloves to do that, because I don't know how busy the grocery stores are, depending upon where you live, again.
So, I think that's completely appropriate to do, it's just, you're just trying to take precautions. You're trying to be smart. So in denser areas, I think that's much more needed, than if again, if you're living outside and you want to take a walk in the fresh air and there's nobody around, I think that's completely fine not to wear a mask.
But other areas, it just depends on where you're living.
Okay. So, I went to the clinic here, near San Diego, the smaller, local clinic for immunoglobulin that I've been getting for two years, and haven't had any infections. And I understand from all of our discussions the IVIG does not protect against the COVID virus, okay. I'm clear about that. But, if somebody routinely has been getting this, first, should we continue, and is there a supply?
Yeah. You're putting me on the spot. I'm just teasing. I think this is going to be, I'm going to tell you in my practice, and again, please check with your physicians, I do not want to speak over your own doctor. I think this is a tricky question, because obviously, there's a sense of wanting to protect a balance between what you're doing, and protect your patients at the same time. And so, IVIG is a supportive, albeit important, I understand, but supportive medicine and I think that if somebody is otherwise doing well, I'm actually trying to push my patients off a little bit.
In other words, trying to delay their IVIG treatments right now, because I don't think that that's life-saving in and of the moment. And I am more concerned about folks who might then come in, as best as we can, with our screening, with our patients who are coming in to the infusion center and the hospital, it still puts you at risk for acquiring the COVID virus from asymptomatic or from staff and workers and things like that.
And so, I'm actually pushing off a lot of them, if they are not needed, because I think that I am not sure if it's worth that risk right now to do. And I think that there's a lot of lack of data even though I have, I give a lot of IVIG to CLL patients. I think that the understanding of how long do we keep somebody on gamma globulin, things like that, is still evolving. Forget the COVID virus, I think that we need to do some real clinical trial work with the use of IVIG in our CLL patients to really understand the benefit or how long do you keep somebody on it? Do we use the levels? There's a whole other conversation we can have about IVIG. But in my practice, I've been deferring patients who are otherwise well, if they do not need to come to the center, so that does include IVIG patients.
And the supplies, because it's made from blood products—and we know that blood donations—are down.
Yeah, absolutely. Right now, blood donations are down, although I'm going to tell you from being part of the conversations with our blood center for example, thankfully, we're doing okay. But the expectation is that it will continue and that we may have issues with that. But in New York, they’re still getting some good donations and are doing all right for the time being.
But yes, there's a concern, because there already was a shortage of IVIG even before the issues with COVID came about. And so, we were already sort of dealing with a shortage that we were having with gamma globulin in general, and so, I think that is a possibility. But I also, given the fact that I think many of us might be pushing off our patients about getting IVIG, at least during this acute phase, it may wind up being okay, just because I think many of us are foregoing some of those treatments for our patients.
Okay. Nicole, when I go for IVIG infusions, my doctors want me to get a monthly blood test, because I'm on an active therapy. Some people come to you, in New York City maybe from afar. But you do want that data about a blood test, so what do we do if people need a blood test? What do we do then?
Yeah, so, I think depending upon again, individual circumstances with their practice and their patients, if somebody is coming into visit me, they're actually coming in anyway. I can get the blood while they're seeing me, because that's real time, and I get the results in a half-hour.
But if they're not coming in and they're doing telemedicine visits, so one is, is whether or not if you're in the active observation, and are not on treatment, depending upon what your prior blood counts were I think some of that probably could be pushed off or spread out so the frequency of blood tests aren't as often. And you can get a prescription to do blood work locally, so you don't have to come in and a lot of the labs from the patients that I've been dealing with, are very quiet.
And I'll instruct my patients, go first thing in the morning, very early, to that lab. It's usually fairly, the labs are pretty empty right now as well. So that they're in and out very quickly. So, if you do need blood work, there are ways to do this, that I think don't necessarily have to pull you in to being in a major environment where the exposure might be greater.
If there's not a need to really get the blood work so soon, I think that we're all probably balancing and extending time periods, given what's going on. I think that that's not unreasonable to do, depending upon what each patient is going through. If somebody is on active therapy, I think that's a different thing. If the doctor needs blood work then again, it can work doing it at a local lab or if you're already coming in to see the doctor, they might be getting that in real time. I think that's fine.
But I think the general gist is to try to defer things that aren't necessary, if you need be, particularly because I think it will take some time before we hit a plateau in the United States. And so, even with the plateau, there's going to be people who are still recovering from infection and to be frank, from what that I've been dealing with here, some people really take a long time to improve and get better, so I think even with the plateau, you're going to see a long tail, that's going to take a while for people to recover from their infections. So you're still at risk for acquiring the virus.
So, folks, questions are flooding in and we'll do as many as we can. Hit the Q&A button. A lot of the questions obviously are on similar issues. And I'm going to try to go through those logically. Some patients are in active therapy that includes infused therapy. So, it could be rituximab (Rituxan), it could be obinutuzumab-rituximab (Gazyva-Rituxan) or Gazyva.
One gentleman wrote in, said, "Well, I've had the five cycles of Gazyva, and then I'm getting the venetoclax, and I have one more to go, what about that?"
Yeah. Fair enough. And I know that there's a concern again, there's a concern about, can I postpone a final treatment versus, and how does that affect my disease in the long run, right? So, what is the implication about my disease?
Again, this is a balance. And so I think that there might be, and you need to discuss that with your physician. I think that sometimes, it might be a-okay to say that last one infusion is okay to give that up. To forgo certain treatments, I think part of that also depends on the characteristics of your disease and what's going on with your blood work and so on and so forth. So again, that discussion has to be done with your physician, but there are some patients where it may be prudent to say, "This is enough, and we can cut that short."
There are others, I think that's not appropriate that these patients really do need to benefit from their whole treatment and others where I think, depending upon their, again, disease characteristics, whether or not they've got anemia, thrombocytopenia, some of them really do need to continue their therapy and take that. They need the benefit of their therapy, and others I think you can scale back.
So that has to be an individual, I think a case-by-case basis, rather than blanking that out to all patients. I think that really has to be a discussion with your physician, because I've done both. It really depends on what's going on with that patient, that individual and what I think they need for their disease.
Okay. Just to be clear, and folks, we spoke about this earlier, some people are just coming on now. So, related to anyone with CLL, whether you're 50 years old, or 80 years old, whether you're in watch and wait, or whether you're in active treatment, we all should generally assume, if I heard you before, that we are at higher risk of complications, should we develop the virus, correct?
Okay. So that answers some questions for people. Because they're saying, "Well, I look at my blood counts, they're pretty normal. Or I've been in remission for a long time, or I am not on any therapy, just now." Whatever. But generally, just by having CLL, right, my immune system is not perfect, right?
I mean, I don't want to belabor, because I know that, look, there are plenty of CLL patients, that actually, your immune systems are really not terribly impaired, okay? And your blood counts could be fine. But as I said, there are probably more things than just your CLL that's going on. You might be older, you might have other medical problems. And those are the ones that we're seeing. We'll get the CLL-specific data, as things are evolving. And we're having more experience with CLL COVID-positive patients.
Then we'll actually be able to be a little bit more specific about some of this that some of these questions are not yet answerable, because we haven't looked at CLL patients specifically with COVID yet in any mass. And we're acquiring this data now, obviously going through this and living with this. So we'll be able to break that down. So, when I talked about lumping the cancer patients in, unfortunately, that's what we've got right now, right?
So, we can make some generalizations, but again, if you have CLL, the likelihood is you're an older person to begin with, in the majority of patients. And you may have other medical problems as well. So all these things taken into consideration, in addition of your diagnosis, I think makes you have the potential of having, from what I'm seeing on the inpatient units, certainly having more complications than our non-cancer patients, or non-related are not, other people without co-morbidities. And so that's the issue.
Okay. And that is independent right now from what little you know, whether or not you've been in therapy.
So, this is communication. If someone isn't feeling well, should they right off the bat, tell whatever provider they talk to, "I have CLL."
I'm on medicines.
I do. Yeah, absolutely. Hopefully, the patient, so if somebody has CLL, so for those listening, if you get sick, I'm hoping—in a way, this isn't much of a stretch as a leukemia doctor, because I hammer into my patients anyway, this concept. So, if they're getting sick, I'm asking them to call me regardless, this I think obviously with this going on, obviously now, globally, has put this forth for everybody.
But the point is is that if you're getting sick, you should be conversing with your provider, regardless, because I think that that is important. It'll help them figure out how to co-manage given the current environment and what we're doing. And, Andrew, we can talk about what we're doing for our folks that we suspect may have COVID with CLL.
It can help the provider help you, sort of triage your symptoms and figure out what to do with them, because obviously, you could have other infections in addition, right, so, whether that's separate from the virus or along with the virus, there may be something else going on. So certainly, if you're not conversing with your CLL physician about your symptoms, then at least your primary care, and yes I would tell them that you have CLL.
Okay. Well, let's do what you were just alluding to right now. If you're my doctor, and I get in touch with you, maybe and we do telemedicine, or however we do it, and you say, "Let me hear your cough, Andrew." Or, "Do you have a sore throat?" Or, whatever you might do, and it's suspected of COVID, what happens then?
Yeah, so what we're trying to do right now is that we're trying to keep most people home if their symptoms are pretty mild. And I know this could be somewhat of a moving target. So, for my patients, and there are many that I've suspected might have COVID, if they're otherwise okay, so first is me trying to triage their symptoms and decide if I think that they also may or may not need antibiotics. And I know this is controversial, so really, I think again, it's up to your physician about whether or not they think maybe something else may be going on.
Do they have sinusitis, do you have pneumonia? Remember those are the common things for our CLL patients anyway, so first is deciding when I speak to them about whether or not they need antibiotics or not. And then, it's sort of, actually checking in with them very frequently, there are some of my patients I know they're going to kill me, some of my folks that I'm literally texting daily, or calling every other day to sort of check in and see how they're feeling, how are they doing? So on and so forth. And we're trying to keep them home.
The folks that are really sick of course, if I think that they need to come in, they're sick enough that the likelihood is they may wind up getting admitted, and we're set up to do that and put them in isolation until they're ruled out that they have COVID or not—and if they need antibiotics and what not.
So doing everything we normally do for CLL patients that we think have infectious complications but need to be admitted for the workup, we're doing it differently, because we're not bringing them into the clinic. Normally I would bring them into the clinic and do all this as an outpatient. But we're because of that sort of concern about trying to keep the non-COVID patients infection-free, they're getting screened. And if they need to be swabbed, sent home. Or, they're coming in because they're sick enough to be admitted. They're coming in and being isolated right away, and then being checked. And we're doing what we normally do for our leukemia patients.
So, we're trying to keep the majority of people with mild respiratory symptoms, cough, low-grade fevers, chills, at home. And then me making the decision about whether or not I think they also need antibiotics, given their symptoms. And then checking in with them frequently to make sure that they're recovering or how they're doing, because that will knee-jerk whether or not I think they need to come in sooner and be evaluated.
Right. So, I should just remind our audience, and we've got 150 people with us now, we will go longer than the 30 minutes. Dr. Lamanna is at Columbia Presbyterian Medical Center in New York. I went there as a little kid, I grew up in New York. It's a huge medical center. And it's right now, in our biggest hot spot in the country of COVID and high density, so what she's been describing are the procedures that probably will roll out to at least major medical centers around the country or even elsewhere in the world.
So, I think, pay attention to this. Okay. So, lots of questions coming in. Again, hit the Q&A button, it goes to my wife, Esther, who's been my partner in my CLL journey for 24 years. She's very familiar with this, and she's helping us see the questions. We got many in advance.
Some of us take as a prophylaxis, you'd call it, for Shingles, acyclovir (Sitavig or Zovirax), which is an anti-viral medicine. So, people were asking whether or not that offers any protection. Any idea?
As far as we know, no. But its mechanism is not what I would think would help for the COVID virus. But again, these are things that we don't know yet. I know many folks have brought up about all different sorts of medicines to try to protect themselves from the COVID virus, given what you're reading and hearing online.
We are actually already in the process of doing clinical trials on both cancer patients and non-cancer patients with COVID to look at different medications to see if it really does help or not in our more acutely ill patients.
And so, we're doing that on the inpatient side of things. I say as an outpatient, we are not routinely, because I know this is going to, Andrew, come up in some of your other questions, we are not routinely giving hydroxychloroquine (Plaquenil) and other medications and things like that to patients just to give them, because there are side effects potentially of those medications, and we don't have that data yet. It's evolving, obviously in clinical trials. And I think that's what's important, is that we really need to sort of see how this is in a true fashion, rather than just doing this willy-nilly.
And because there may be interactions with other people's medications. And there's a shortage of these medicines, because they are being on a clinical trial. And so, we're not routinely giving people these medications at home as a prophylaxis, so on and so forth. And so, we're not doing that—at least, we're not doing that. Others might be, but so I think that we don't know about some of these other medicines that might be helpful, but I think that if you're on prophylaxis with acyclovir or valacyclovir (Valtrex), normally, there's nothing wrong with continuing to take your other medications. We do not have data yet to show that that's necessarily better or helps the virus.
Nicole, so people, things go out in social media. A lot of the people here, we know through social media, so somebody was sending out a video the other day and said, "Well, his doctor friend said the people who are dying of COVID had ibuprofen (Advil) in their blood." Or stuff like that. So, people worry, is there, if they took an NSAID, I think you call it, do we know any of this stuff?
Yeah. And that's something we're obviously looking into as well. Again, the data is still very immature about some of these things, I think if you're normally taking these medicines for other reasons, and need them, okay, I know this is again, I would check with your providers. But let's say there is somebody with extremely bad arthritis, and you're taking your anti-inflammatory medicine, and it really works for you, I wouldn't not stop. I wouldn't all of a sudden, change what you're doing, because there's a lot of misinformation and different data that's going out there. And I think it's more complex than that, about knowing whether or not NSAIDs are making something more a concern for the viral repercussion.
And so, I think that's problematic until we sort of sort that out and as I said there, we are obviously looking at this in the inpatient setting with the sicker patients. So we don't know that per se, so I wouldn't necessarily change your habits. If you are saying, “I've heard this, and this is not something I necessarily need to live with,” and you want to not hold your inflammatory, again this isn't a life-saving medicine. For those who say, "I want to avoid something, because I take it once in a blue moon," there's nothing wrong with that.
Because there's a lot we don't know. But if you're somebody who really needs it for their arthritis and you're otherwise home and your self-isolating and doing well, I would continue your medicines. I wouldn't change your paradigm of your medicines just because of the fear when there's a lot we don't know yet. And you can talk to your providers about that.
If you're not sure of how to weigh the risk-benefit ratio of some of the medications you're on, just so that you don't stop something that's maybe important for you, and vice versa. If you don't need it, then you don't need it. That's a different issue.
We're going to get into the medicines now in a second, and we spoke about further infusions of Gazyva and things like that. And that's individual, Carl you had asked a question about related to, should we call our local PCP, primary care doctor or CLL specialist? I think you said, Nicole, what you're doing, you want people to call you. And I would take that too. I'm very close with my doctor, Tom Kipps, here in San Diego and his nurse, Sharon has been his nurse forever. And that's who I call.
And I call Sharon. I go on the electronic medical record, which they're seeing all the time. MyChart is what they use. They answer promptly, et cetera.
Okay. So let's talk about medicines. There are people on the BTK inhibitors, so ibrutinib, acalabrutinib (Calquence), and they wonder does it help or hurt, in their setting them up for COVID? Should they keep taking it? Should they change the dose? I know it's individualized, but just generally, should we have any concern about these medicines? And then also talk a little bit about supply, because people know the pharmaceutical companies have components that come from all over the world.
Yeah. I mean, those are all really good questions. And forgive me for saying, obviously, things are going to be evolving, and they could be changing. Right now, I am not recommending a change in what patients are doing with regards to their medications, their oral medications that they're taking at home. As I said, the IV is a different issue, depending.
The oral medicines, I would take them as you normally should for your disease. We don't know that, most patients actually particularly folks who have been on the BTK inhibitors for a prolonged period of time from the original CLL data, that we know that actually patient's immunity, their infectious complications actually improve or decrease over time the longer they're on some of these BTK inhibitors.
So it's not that we think that all of a sudden, you being on this medicine should make it worse. If anything, it probably has helped your immune system from your CLL standpoint, in general. If you've been on these medicines for a while, in general, the infectious complications decrease over time. Again, that doesn't mean that you can't get sick from the COVID, as I alluded to earlier. But I wouldn't stop your medicines, per se, just because of that.
My patients, I think there's, some of us do this a little differently with our patients who get admitted to the hospital, right, so, whether it's COVID or for not COVID, right? So let's talk about in the era of non-COVID infections, if one of my CLL patients came in with pneumonia and was very sick, there are times I would hold their medicines when they're in the hospital, because they might needing a procedure or bronchoscopy or other procedures, and the BTK inhibitors can increase the risk of bleeding.
And so, during the, if they're in the hospital setting, oftentimes, I will hold current oral therapies ,because they're going through this very active infectious issue with potential complications. And I may have to do things, and so I will often hold their oral medications if they're in the hospital and they're ill.
Outpatient-wise, that's not what I'm doing as standard of practice. And so, I think you should continue your medicines right now, unless your doctor is telling you, again, discuss this with your physician—unless they're telling you otherwise for a different reasons. Now with regards to, Andrew, you brought up about supply and demand, with regards to obtaining these medications, right now, from the gist that I'm getting from a lot of the specialty pharmacies, right now things are okay.
Obviously, there's always a concern that that could be a future issue. Right now it seems to be okay. But there's no doubt that there are certain, and we're hearing about certain medications, other medications, that are limited in supply. And so that certainly could become an issue, but I don't know if I would risk changing that now, just yet. Because we just, I just don't know. So I haven't been telling people to sacrifice their medicines per se, because of the unknown just yet.
Okay. And just to further, we talked about the BTK inhibitors, venetoclax works differently. It's a different class. Is there anything different there?
No, I wouldn't suggest different with any of the orals right now, in terms of what you're doing.
Okay. I will mention to the audience, I have another condition where I take another oral therapy, myelofibrosis. And so, what I did right off the bat, with a big co-pay on Medicare Part D is, I did get a 90-day supply, which Medicare authorized.
And I think that's definitely not unreasonable, right? So, depending upon your insurance coverage, and how you get your medications, if the doctor, as long as it's covered and it's not a problem if the doctor can write for a longer prescription, just show that you have it in reserve. I for sure, we've been definitely doing that. I think that's not an unreasonable thing to do, to have that extra. I always actually tell my folks to make sure they call and get their supply a little earlier anyway, so that they have a little bit of an extra stash so that in the prior to this COVID environment, if they were traveling or whatnot, they wouldn't have to fret and worry that they were going down to their last pill. And they had travel plans, right?
So, I do think it's important to build up a little stash. And if your physician and more importantly, it's not the physician who'll have a problem writing this, but if your insurance company covers a three-month, allows for a three-month supply, I don't think that's unreasonable.
Okay. I want to just tell everybody, Dr. Lamanna is in the thick of it in New York City, but she's graciously said she could be with us a little bit longer. And we do have about 150 people on, so I want to cover some other things about it.
So, Nicole, there are people including some who work with essential jobs, some people with CLL, who are healthcare providers. So they're saying, if a nurse on your team had CLL, she or he might say, "Gee, Dr. Lamanna, should I keep coming in?"
Yeah, this is a tougher question. Actually, this goes two ways, right? So, the questions I've been getting a lot are, A, for the person who may have a compromised immune system is currently working or that person's home but their loved one is working, and they live in the same household, what do they do?
And to talk about both of those, clearly, this is a typical situation to be in and part of it. Thankfully right now, obviously, a lot of the personnel who are considered, and again, I know the term is very poor to say non-essential. I think everybody is essential.
But for them to say that, so a lot of people are automatically at home and not working right now, during this current environment, so that's good. I think if you're stuck in a job that you have to work, but you're older or have other co-morbidities, and have CLL, it does obviously is a concern that you have a higher likelihood, because you're out in circulation that eventually you might contract the virus from someone through common contact and exposure.
And there's only so much you can do. So I think that if you are concerned in your job, so I think part of this depends on what your employer, a lot of our patients, if they get a letter from me, because of what their work is, “Can I work from home?” If they're employer is completely fine with that, I have no problems writing that letter.
So I don't think that's a problem, but, of course, there are many employers that may not allow for that because of what's going on or can’t do that, and then you're kind of stuck, and you don't want to lose your job. So I think it partly depends on whether you have the ability to be able to work from home. And if you can, I think that's great, and you should take advantage of that.
Obviously, there are folks who can't do that, and then you really need to try to use protective equipment, depending upon where your work environment is and what you're being exposed to. If you're in an office that's isolated, and you can control cleaning your desk and whatnot, and you're fine, because you're in an office and locked up, I think that's okay.
If you're on the front lines or you’re healthcare personnel, Andrew, as you had mentioned before, and you're needed, I think you need to use protective equipment and do what you can. There are some of those folks who are, depending again on their employers, allowed to have letters from their physicians who might allow them to do other things that are still vital. But being at home, because they could take calls and they can talk to patients and they could do other things that are vital to being a healthcare worker, but still do it from home and telemedicine.
So there may be different ways to strategize that, and you need to work with your employer. With regards to folks who may have loved ones who are working outside the house, and they're home, but they have that exposure, that's tricky too. And I think if you have again, it partly depends on your home circumstances, if you have the ability to isolate yourself from your loved one who is going out and about or being in the workforce. I tried to protect my family when I go home and sort of staying isolated as best I can from them, during this real acute time period, that's what I'm doing.
If you have the ability to do that and sort of be locked in a room and whatnot and having little exposure, that way you got to do the best you can do, because obviously your family member may have to work, and there's nothing you can do about it. So you just need to be practical and smart and do the best you can. And the current environment that we have, I know it's difficult.
Nicole, I've met your kids, you want to hug your daughters, I know.
Well, you know that technology with the phone thing works really well.
Okay. And this one tugs at your heart, too. We have some people who feel well but who have CLL who want to volunteer or are volunteers to help others. Maybe they're helping the elderly, maybe they want to buy groceries, maybe they're working at some, they want to work at a soup kitchen or whatever. But what I'm hearing from you is, in those sorts of environments where you may be around a lot of other people, maybe you have to think twice about it.
Yeah. I mean, again, across the board, I know everybody has got different circumstances, and I don't want to blanket it, because essentially—I know we can say that—in addition to CLL patients, if you have other medical problems, that everybody should be self-quarantined and isolating. And I understand that that's not necessarily practical. That means nobody should be working or helping other individuals.
And that's not what I mean. I think that you have to be smart and prudent and practical, again, I'm worried about my older folks with co-morbidities and who have CLL, but there are many different kinds of ways that you could be helpful, too, right? So I think that there are other ways that you might be able to volunteer your services that don't necessarily require you in such close contact with folks. And I applaud the folks who got online for you, Andrew, and are saying, "We'd like to help."
There are other ways to do this, particular with donations and things that you might be able to have someone else pick things up for you or do things-
You have to be creative to think about different ways that you might be able to help or offer your services being on phone calls and things like that. And again, there are other ways that you might be able to help without being really so directly in a close quarantined area with other folks that put you at risk.
Okay. So, I've been getting notes from my dentist, that I was scheduled for teeth cleaning or this or that, fortunately, I live in fear of having needing a root canal or something. What about those either kind of routine clinical visits, dentists or doctor, or even if, oh my God, you have a toothache, and you’re terrified of going.
Awesome question, actually that's a great one to bring up. Again, I've been sort of telling my folks and for my folks who know me well, when I sound like a broken record, because I'm always actually talking every visit with them about their healthcare maintenance and what they haven't done. This is one of those times I'm giving my patients a pass.
So this is not the time to do elective procedures per se. And as you know, or have read, or heard online or on the news, many hospitals have obviously closed elective surgeries, right? And elective is, again, a great term depending upon what's elective. A hip replacement that's not emergent, they're postponing, right?
So in terms of getting your teeth cleaned, getting your mammogram, this is not the time. So, I would defer elective procedures right now that aren't necessary. I'm actually surprised your dentist is still open for that, because they're really seeing emergent cases. So if you have an abscess, emergent is different, right?
So, what I try to tell patients is that's why it's important to have that communication either with your physician, your oncologist, or with your primary, whoever is your good ally, because I know that's not the same across the board. I know, Andrew, we've talked about that some docs have them call their primary care, and that's fine too. Whoever is your go-to, that they can help you.
So if somebody has an abscess and you need antibiotics, we can call in antibiotics to the pharmacy. So the point is, if it needs to be seen, you need to be seen, right? So, we don't want patients having acute issues that don't get dealt with because they're so fearful about coming to see their physician. If it's emergent and it's needed, the physician and team need to help guide you with that problem. So they could either take care of it when you're at home, if they need antibiotics or if they say, "You need to be seen, I want you to come in." So that you're not getting sicker at home, because you're not dealing with an acute issue.
So elective things should be deferred for now, until we sort of see how things go over the next couple of months. But if you need attention or you need to talk to someone about an acute medical issue, a dental abscess, things like that, because you need antibiotics, you need to call and have that dealt with. We don't want people getting sick at home just because they're afraid to get medical care. That doesn't make sense either.
Okay. Nicole, we've got really smart patients who are sending questions. We'll just go a few more minutes if we can. So, some of us get tests for our IgG levels, whether you’re getting immunoglobulin or not, we wonder is there anything that we can gather from those numbers that tell us about immunity to COVID?
Not yet. Not as far as we know, yet. So, no. The short, I wish I could expand upon that, but we really don't know, if again, the immunoglobulin levels in my head are sort of one aspect of your immune system, right? So, but they don't cover, it's sort of poor surrogate marker for everything that our body deals with to fight off infections whether viral or otherwise, and so it's just one marker. So I don't think that in this acute setting we have enough data to know how that plays into folks with COVID. Hopefully we'll gather some of this maybe on the registries that if somebody's levels are better, do they have less complications if they become positive versus those who have, who are hypogammaglobulinemic? We don't have that data yet. So in the short of it, unfortunately, I don't think we could use that right now to know.
Okay. So, Jeff was saying, "Okay, you're talking about gathering data, when will you have some that can be shared with the CLL community?"
Fair enough. It's ongoing. So, there are registries that are going on now. So it just depends on how many of those, of the patients with CLL that will all be able to add together as a group, and we're working obviously with other centers to do this en masse. The tricky thing I think, to be frank, and I think that we have to be careful with this data, is that remember, there are many patients that might be positive, and we don't know that they're positive.
And because they haven't been able to be tested, right? Yet. And so that could be a little problematic with interpreting some of the data too, because then you may assume that from the, depending upon how the data looks, that patients who are only, ones who are tested might be sicker, because those are the ones who got tested because they were sicker, where there may be a huge number of patients who might have mild symptoms and be positive and completely okay. And so, we do have to be careful about the data, but at least we need to try to start capturing it, so we can make some heads or tails.
So, I wish I could tell you when, I think it depends on how quickly we have more of our CLL folks, CLL-specific data with all the centers involved. So I think it's going to take a little time.
Maybe you could make sense of something for us. Some of the patients have asked about this concept of cytokine storm, and is that what leads to somebody's demise, and how does that relate to someone with CLL?
Yeah. So let's separate that a little bit, I think. There are obviously cytokines in our body that, there are many, and that can get set off when somebody gets acutely ill. And with COVID, there is no doubt that there are some data that certain cytokines really become acutely elevated during the active infection that may contribute to some of the respiratory issues that are going on. And, in fact, there are clinical trials looking at certain ways to mediate or inhibit certain cytokines per se, in these acutely ill patients, and there are clinical trials that are running.
Now, CLL patients always, I think some of you, are savvy enough when we talk about therapies like CAR T, when we talk about cytokine release syndrome, you're making those analogies and those leaps about whether that is an impact.
And again, certainly, in CLL, this wouldn't be something that we would normally without depending upon the treatments, would normally don't see this in a patient who is either on active observation or on most therapies for CLL, we really talk about it when we talk about things like CAR T cell, certain therapies that can activate the cytokine syndrome.
Now, the flip to the question may be that if you're asking is, would patients with CLL, if they get COVID, be more at risk for having a severe cytokine release syndrome due to the virus, and that again, is something that we don't know. We'll see whether or not we have any data to show that otherwise. As I said, the issue I'm bringing about is I think that because of a patient’s cancer diagnosis, and that we are seeing is that there's no doubt the cancer patients have more, a poorer outcome in general compared to non-cancer patients.
Possibly related to the fact that their immune systems are compromised, and the question is, are those measures of these cytokines going to be worse in that individual? And that certainly could be the truth. So we don't have, again, unfortunately, I wish I could tell you that, it's too immature for CLL per se, there is data that patients who are leukopenic, so low white counts, that their outcomes is poor in leukopenic patients.
And again, so this stuff is all evolving on a daily basis, and I say that, unfortunately, the jury is still out. I can't say that CLL patients per se are going to have a worse cytokine or that their immune system is poor, and there are other mechanisms that spurn on the cytokine release and makes it that those guys have a poorer outcome. That data is still being, obviously, gathered.
Okay. Folks, I want to tell you, just as we just go a couple of minutes longer is, many of you are coming on now and asking questions that Dr. Lamanna did answer, for instance about ibrutinib (Imbruvica) and your immune system, things like that. We'll have a replay and a full transcript hopefully by the beginning of next week. We're working as fast as we can. We covered a lot.
You mentioned CAR T, and so we know that for some of the sickest, most advanced CLL patients, they are in trials for CAR T. And they really need it. Is that moving forward, Nicole?
Yeah, it's a really good question. So, without getting caught up in too many things that could get me into trouble, I think patients who are absolutely needing their CLL therapy, that obviously many of us are trying to, those are the folks that we're really trying to, and many of you are on other clinical trials as well.
And so, as you know from being on some of these clinical trials and participating, you might be working out arrangements with your physicians that you are still getting your medicine, because you need it. And they may be working out different arrangements with you regarding whether those are telemedicine visits, they might be forgoing certain evaluations on the clinical trials, because they're not as necessary obviously in this acute situation. Again, given what's going on and the concern about trying to keep you all protected, but yet you still need the vital medicines that you need to treat your CLL, because you've been through maybe many therapies and things like that.
So I think that the physicians, the PIs, all of us investigators are really trying to get people their vital medications for those who really need it. And so, we'll get to CAR in a second, but I think that obviously, that's an ongoing discussion to have with your physician and team. But I have to say in most respects, everybody is trying to do our due diligence to keep you guys going with your medications and your trial visits or trial medication that those who really need it. So that's the good news, is that we're really trying to make sure you get the vital medicines you need for your CLL.
CAR T is a little different. And myelosuppressive therapy is a little different. So there's no doubt that, and this is probably again, talk to your physicians and because each sponsor may be dealing with this differently. So, the investigations or the particular clinical trials, there are some that are putting a halt or pausing, I should say, newer, enrolling newer patients at the present time, because of the concern of the fact that they, if you're getting an intense therapy that already has issues with cytokine release, and if you happen to wind up getting COVID, the question is, how well are you going to do? And so, there is a concern, and that, and I'll extend that leap not just to CAR T, but even to allogeneic stem cell transplant.
And so even for the present time, there probably, many centers are deferring or reducing, depending, taking it on a case-by-case basis about how to strategize or make a hierarchy of who needs to be treated right away and who can be deferred a little bit of time and maybe have some sort of bridging therapy and other things to help them with their disease, rather than risk the fact that they might be neutropenic for a long time, and then get concerns about whether or not they get COVID, because they're very heavily myelosuppressed, or immunosuppressed.
And so, there's a balance issue that's going on across the board. And so I think that you need to take that, you need to discuss that with your physician, your providers if you're one of those folks that is either needing those therapies or getting close to those therapies. Obviously everybody is trying to be very creative about how to handle their patients with regards to their therapy. For the most part, thankfully, for CLL, we can work around things and use alternative therapies.
But there's no doubt that there's going to be a halt or a pause, I should say, on some of the trials that there might be more intensive therapies or transplants, or things involve—depending upon the facility, the sponsor, and what's going on at that center at the time. So, stay tuned, unfortunately.
We've gone almost an hour, folks. I want to let Dr. Lamanna go in just a second. I just wanted to mention a few things. One is, we'll do more programs, I'm trying to chase after the Ohio State folks, which is another major center. Kerry Rogers and the other folks there, Dr. Byrd, and we'll do another program. We're saving all the questions. Keep sending them to email@example.com.
I wanted to end by saying to you, Dr. Lamanna, in the thick of it in New York City, what can we do as patients to help you? Whether we're in New York and in your practice, or whether we're anywhere, what can we do to help you and other CLL specialists? How do we help you, because you're doing so much for us?
That's very nice. It's overwhelming what's going on. There is not much, I think that you need to, I think the things I just want to stress to you all as we understand this is a very unsettling time for both patients and providers and everybody alike, both physically and mentally, but also economically. So we understand that this is far-reaching in so many different aspects. We want you guys to be safe. The point is, is that you can have more than one thing going on, besides getting the COVID virus. If you're safe, talk to your physician and providers. We are trying to, we don't want, everybody wants to be tested.
I think part of the issue is that to help, if you want to help providers, we don't, we're trying to, we know that at some point, many of us are going to wind up getting sick or have antibodies and been exposed, and we're trying to make sure that we have enough staff on hand to take care of all the patients who need to be taken care of.
So, not overwhelming the medical system from that standpoint is important right now. So we can spread it out, because at some point we all expect to be out for a little while. So if you're sick, just try to make sure you're being proactive about communicating with your team, your physician about your symptoms, so we can try to triage and manage as much as we can at home for you all, so that you stay safe. And if we can manage you and keep you home, that's what we would prefer to do right now.
Clearly, if you're sick and you need to come in, we're ready to take care of you. We have units that are dedicated and leukemia docs and other docs to take care of your problems if you're acutely ill and you need to be in the hospital, you need to be in.
But if you can stay home, I think that would be helpful to providers and everybody to try to stay safe and not get infected. So that will decrease sort of, help us use our resources as best we can during this time period where it's difficult. And that's why the social distancing and things like that, because we're really trying to try protect as many of you out there as possible, so that you don't all get sick and get overwhelmed and really ill that you need to come in, and then obviously the resources aren't there for you.
So I think that's the best thing, if you can do a lot of online, I know it's hard not to be with grandchildren and your children. If you could do online Skyping and FaceTiming and things like that to keep up the social aspects and not lose it mentally, that that's important to do, is keep yourself occupied and busy. Do get some fresh air if you can and have the ability, because you're not crowded out in an apartment or whatnot.
Keep your mental aspects and faculties about you and just be—let's not try to be alarmists. Let's be practical and considerate and thoughtful about what you need and then convey any concerns with your physician teams about your medications. All these questions, you guys are all asking about your therapies are all important, but you need to pass them along with your physician so that, don't take just my word for it. Everybody is going to do this a little differently as we get our data about what's going on.
And so, some of you, I think might need your therapy, others, there may be different issues where you can forgo things and so you need to, the doctor needs to help weigh those risks and benefits for you, individually until we have better data. I think that's the best I can say for now.
Well, that was plenty. Folks, we planned to go 30 minutes, and we've gone an hour. Dr. Lamanna's email and pager are going off. Nicole Lamanna, thank you so much. You and the other CLL team members there in New York, and your colleagues around the world, who are so devoted to us, thank you so much for being with us and giving us your time. We hope that your patients that you see in New York will do well. And we're going to do our best on our end to protect ourselves.
Folks there will be a replay. There will a transcript. Take a look at that. We'll play another CLL program. Send your questions to firstname.lastname@example.org. I just want to thank industry as well. The folks at Pharmacyclics and Janssen have helped support this program, and others are piling on because they have a commitment to the community for us to be smart. They have no control over what Dr. Lamanna or any experts or what I'm saying, what you're asking, but we're all in it together. Nicole Lamanna, from Columbia Presbyterian in New York, all the best to you, your patients, your team, and your family, Nicole. All the best.
Thank you, stay safe everybody.
Yeah, thank you so much. I'm Andrew Schorr in California, Dr. Lamanna in New York City, 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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