Skip to Navigation Skip to Search Skip to Content
Search All Centers

MPNs and Coronavirus: Expert Advice for Patients

Read Transcript

Published on March 24, 2020

Key Takeaways

Patient Power founder Andrew Schorr is joined by renowned myeloproliferative neoplasm specialist Dr. Naveen Pemmaraju, from The University of Texas MD Anderson Cancer Center, to discuss the recommended precautions for MPN patients during the coronavirus outbreak.

Listen in on this Ask the Expert podcast as Dr. Pemmaraju explains the risks for MPN patients in particular, and shares guidelines on treatment, follow-up visits, interacting with family members and more. 

Dr. Pemmaraju also gives an update on testing, and a number of drugs entering clinical trials that may be helpful in treating the novel coronavirus.  

Featuring

You might also like

Transcript | MPNs and Coronavirus: Expert Advice for 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.

Andrew Schorr:
Hello, greetings from Southern California. Andrew Schorr here, and we have so many of you who like me have an MPN. So, this program is going to be a little different. We've been doing webinars on short notice with wonderful doctors from around the world, and we have with us, Dr. Naveen Pemmaraju who's in Houston. But hey folks, this is the Internet age, but we're all on the Internet and it's a little crazy. So we have Dr. Pemmaraju right now on audio.

Dr. Pemmaraju:
Right!

Andrew Schorr:

But not yet on video. Dr. Naveen Pemmaraju, you're from Houston. Say hi to really scores of MPN patients around the world.

Dr. Pemmaraju:
Thank you, Andrew, for having me and thank you to Patient Power. I'm eager and excited to take your questions.

Andrew Schorr:

Okay. We have a little bit of an echo too. I don't know where that's coming from, but we'll figure that out. So, folks, you've been sending in questions, so we will pose these to Dr. Pemmaraju. Just to review Dr. Pemmaraju who has been on Patient Power many times, he is an MPN specialist at one of our foremost cancer centers in the world - The University of Texas MD Anderson Cancer Center in Houston.

So, first of all, big question, everybody wonders and unliving with myelofibrosis is, Dr. Pemmaraju, our MPN patients, and we have ETPV and myelofibrosis. Are we at higher risk for the coronavirus?

Dr. Pemmaraju:
Yeah, this is the right place to start, Andrew. So with the coronavirus, COVID-19 this new virus, I believe that all of our patients are at a higher risk than the general population for primarily three reasons. One is in terms of age, most of our patients are older. So if you're older, that already puts you at risk. Number two, the disease itself. So, the MPN, traditionally I would say more the myelofibrosis rather than the PV or ET, but we'll get into the specs. And then number three, sometimes the therapies that we have our patients on can leave patients more immunocompromised.

So, in general, the answer is yes. For patients who have the more intermediate and advanced MPNs, but possibly for those patients who are PV, ET younger or not on active therapy, their risk may be closer to the general recommendation. And that's important, because the majority of recommendations coming from the CDC are for the general healthy population.

Andrew Schorr:
Right. And I just saw an article from the CDC, and it talks about people with asthma and diabetes, and it, quite frankly, it doesn't even mention cancer at least in the headline. And then we get into blood-related conditions, and it doesn't break that down. So thank you for explaining that. So one of the medicines that's used is hydroxyurea (Hydrea). So I don't know if you want to comment at all on specific medicines that could affect immunity. And then what follows is if I'm on that medicine, do I stay on the normal dose? What do I do?

Dr. Pemmaraju:
Right. I think in general your question is very important, because even though we don't think of these drugs as chemotherapy in the day-to-day practice, they are as you and many of our viewers know. So even hydroxyurea, a pill chemotherapy that many of our patients take. Yes it is, in fact, a chemotherapy and yes, there's a theoretical risk that it could lead you to being immuno-suppressed. The second part is very important. This is where we have to say things like talk to your doctor for the specifics. But in general this is what me and several of my providers, experts are thinking about. Do we need to change doses? Do we need to do anything different? By and large, no. For most patients, and I'll give you one important example that's important to you and our viewers.

One is that if you're on a JAK inhibitor right now, it's very important that you have enough medicine supply so that you don't run out or that you don't suddenly stop, because what is not going to be talked about except on this webinar is that patients who are at risk for a withdrawal syndrome. If the specialty pharmacy supply chain is suddenly lower, a patient is not able to refill or worse, they're not able to get in touch with their healthcare provider. So I think yes, most all of these medicines are either chemotherapy or chemotherapy-type medicines and that dose adjustments are very serious in this time. I would urge everyone to make sure that you have appropriate refills. This is a good time to do that. Make sure that you have that line of communication, that access to your specialty pharmacy so that those situations don't happen in advertently.

Andrew Schorr:
Right. Folks, if you're just joining us and we have like a 100 people, you're going to have to look at me. I wore a nice bright shirt for you. We're having trouble with Dr. Pemmaraju's camera in Houston, but we have his mind, and he's a leading MPN specialist, so bear with us. Okay. One other thing about treatment. So some people have phlebotomy and go to the clinic for that. So what about follow-up visits? Venesections as they say, where there's some intervention—if we are at higher risk, do we postpone things, follow-up visits, what do we do?

Dr. Pemmaraju:
This is critical. I'll answer this in two ways. One is for the patients who have to travel. So those patients who have to come see me at a major medical center, and then we'll also talk about it at the local level. So first for the traveling coming to the major center. If you're traveling from some way, even if it's by car to come see me or Dr. Ruben Mesa, Dr. Katrina Jamieson, for example, we are at MD Anderson and then other leading centers. We are doing the unprecedented move of trying to call all of our patients both long-term and then 24 to 48 hours before. If you're having any symptoms at all that may be in the COVID-19 spectrum, we're asking people to stay at home both for their own protection and for others, and then try to see treatment locally.

For those patients who are able to get treatment in their local area, Andrew, what I recommend in general is yes, you've got to continue with those current therapies that you have and if something can be postponed, this is a good time to do it. Let me take you through why you gave the good example of a patient with p. vera. We're trying to keep the hematocrit goal below 45, you have a phlebotomy that's due tomorrow. Right now, as the peak of the curve continues, we haven't gotten to the so-called flattening of the curve as you and others have been talking about. It may be okay to postpone a phlebotomy by a day or two a week or two, so on and so forth. Of course, as we always say on this program and others, that's an individual decision between that patient, their doctor, but you make a great example. If you're a PV patient, chronic, you're doing well. That may be an example of something, and what I'm recommending for patients and providers to do, 24 to 48 hours before the actual inpatient visit, do these three things.

One, you both talk to each other, whether it's reaching out one way or the other. That's number one. Number two, is if it's deemed that the visit is not essential, it can be postponed. Go ahead and do that. This is a good time to do that. And then number three, if it is essential, each institution is taking their own precautions, but what you bring up is why I was so enthusiastic to do this. This may be something that can decrease the volume of patients right now for nonessential procedures and therapies.

Andrew Schorr:
Okay. Wow. Big areas, are we at risk? We discussed that.

Dr. Pemmaraju:
Right.

Andrew Schorr:
Medicines, do we keep taking them and getting refills? So stay the course but talk to your doctor, but right now stay on therapy—interactions and going to the clinic. Postpone what you can. Okay. Now, one thing about refills, sometimes you have fights with the insurance companies about getting a refill too soon, and I know you're not an insurance expert, but any guidance on that?

Dr. Pemmaraju:
This is something that our patients face even before this pandemic, and you're right, there are two flavors to this. One is the absolute denial where the insurance company or provider says, "No, we won't do it." In this circumstance, what I'm finding is by and large people have been very forgiving and understanding. So if a patient gets a denial for trying to refill early, in most cases, Andrew, what we're finding is either a phone call by the patient themselves or if the healthcare office can do it, is to explain that because of COVID-19 either an older patient, a patient who cannot travel, patient who's otherwise not able or is worried to go outside of the house—these special circumstances are calling for those special maneuvers.

So, don't be afraid to call again or to ask in these special circumstances. You'll be surprised that several of these outlets are allowing that, whereas before they wouldn't have.

Andrew Schorr:
Okay. All right. I just want to say something about blood clots. So some of our MPN patients are at risk for cardiovascular issues, stroke and clots. So again, you were talking about staying on therapy, right?

Dr. Pemmaraju:
Right.

Andrew Schorr:

And then the analysis of if somebody needs phlebotomy, things like that, that's a discussion you have before you come to the clinic and see if that can be postponed, right?

Dr. Pemmaraju:
That's right.

Andrew Schorr:
Okay. All right. Let's go on to some family issues as well. So we've gotten a number of questions from people where somebody in their family works outside the home. Somebody works as a grocery store clerk, their son does, but lives at home. So what about precautions? Is there anything beyond what we are generally hearing?

Dr. Pemmaraju:
Right.

Andrew Schorr:
Washing hands, cleaning surfaces, anything that we should particularly be mindful of?

Dr. Pemmaraju:
That's a great question, Andrew. Nothing new or different then, what you've already heard and seen. I think this is an important point. In addition to healthcare workers and other essential workers. So you mentioned people in the supply chain, grocery store, all of these important factors. You're going to have a patient at home and a caregiver, or some loved one who's going out. I think you're right. No, I wouldn't say anything different. I would say for our patients though, we have patients on pegylated interferon on chemotherapy, on clinical trials. I think it's just very essential to reiterate doubly for our patients, many of whom are already practicing social distancing. Washing hands with soap and water—to continue to do those things. But nothing additional than what you named.

Andrew Schorr:
Okay. Now, some of the people have had transplants, a few.

Dr. Pemmaraju:
Mm-hmm.

Andrew Schorr:
Now, does that put them at higher risk? There was Ernie, you said he had an allogeneic transplant last year. They're quarantined in their home. He says, “Our son has traveled with us to assist if needed. He's 27, and he moved into an Airbnb for two weeks to make sure he does not have symptoms.” So the question is with the son who wants to help. Quarantining for two weeks, is that enough? Or does he need to be tested before moving back in with them?

Dr. Pemmaraju:
Yeah, this is the question. As you hear people say, it's sort of a fluid situation. Right now, there are three parts to that question. One is yes, unfortunately, I have to say that by definition all of our patients with MPN, so myelofibrosis post allogeneic stem cell transplant are yes indeed at higher risk. So that means you're immunocompromised—higher risk. And let me point out, Andrew, that's regardless of the age. So again, what you hear on news outlets are generally good advice for the general healthy population. But my God, one reason this is important we're meeting today is it doesn't matter what your age is. If you have a cancer—blood cancer and or post-transplant—you are at a higher risk, because you're immunocompromised. So that's number one.

Number two, for family members, we don't know yet the exact scenario. Yes, you're right, it's happening. What we do know is that testing is not widely available, as many of your viewers know. That particular instance, no, that person would not meet the “current guidelines” for a testing. Now, once these tests are more widely available, that may be something to do, but right now asymptomatic people and people in these kinds of in-between situations are not being put forward for that.

Lastly, about isolation, self-quarantine, guess what? Our patients with MF, with transplant on chemotherapy have actually been doing a form of social distancing, haven't they for many years, which is staying away from sick people, washing their hands frequently with soap and water, being generally safe about touching surfaces and infections. So we have to continue that, but be doubly aware of our patients in our rare disease categories, because yeah our patients are at a higher risk.

Andrew Schorr:
Okay. But some of the people, for instance, with ET, maybe living with it for years, and some of them, guess what? Our healthcare providers, one of them just wrote in, she says, they take aspirin only for ET. They work in the health field in an outpatient clinic. They work closely with patients. They say, "Do I need to take any precaution besides handwashing, a mask, a gown, gloves, et cetera?"

Dr. Pemmaraju:
In this case, likely not. What we've found out so far is that those measures are neither necessary nor sufficient. In other words, in the general situation, those likely will not cut down the risk for this particular topic, for the COVID-19, and this patient is not on chemotherapy, in general. We don't know the details of every specific case. Aspirin alone, otherwise, moving along, we wouldn't recommend that, but being generally aware of the social distancing, handwashing, et cetera.

Andrew Schorr:
Okay. Now, there was a presidential conference. They're doing it every day. I saw a little bit of it today, and they had the head of FDA on talking about trying to fast-track medicines and medicines that have already been approved for something else.

Dr. Pemmaraju:
Yes.

Andrew Schorr:

Could they play a role in the treatment of COVID-19, the coronavirus we're dealing with now? Okay. First of all, is there any thought, and you guys are all scientists, of any of the medicines we're taking for MPNs that could play a role, interferon, whatever?

Dr. Pemmaraju:
Yes. Thank you, Andrew. Some of the early reports out of China and preclinical labs all over the world—this is a very important area for me and my colleagues that we're following. There are a couple of drugs that have been put forward either preclinical, so that means in the laboratory or in animals only, or clinical, which means they've either been tried for this exact pandemic or related coronavirus disease types.

There are a couple of drugs that some of our viewers have heard of. One is chloroquine. Chloroquine and the related drug hydroxychloroquine (Plaquenil) are drugs that some of our patients know. Chloroquine is an anti-malarial drug that has been used for many decades in the treatment of that particular parasitic infection. Hydroxychloroquine is the cousin or related drug that many of our patients take for autoimmune conditions such as the lupus family of diseases. Can you believe it that that old drug has shown some potential for activity both in the preclinical and possibly clinical? That's a drug that many of our viewers have heard of. Put that on your list of drugs to follow.

What's happening right now is that there are moves being made to give that on either an off-label, which means physician using their judgment, or compassionate use. It's a drug that's been around for a while, relatively cheaper, Andrew, may have some mechanism of interfering with the viral entry, so let's keep our eye on that. As you would expect, clinical trials are being launched and ongoing to formally rigorously test that. That's one class.

A second class, Andrew, I wanted to mention are drugs that some of our viewers have heard of such as steroids. There is some conflicting data. Some reports show that steroids may help in the severe parts of the disease. Some say that it may hurt, so we need to see about that. Then the associated drugs that can treat inflammation reactions, tocilizumab (Actemra) is one drug that's been put forward to IL-6 inhibitor that some of our patients have heard of for rheumatoid arthritis or CAR-T cells. But let me pause there and turn it back to you. Basically, a number of drugs that are entering into clinical trials in an unprecedented, rapid way that we've never seen, some of which are available for other causes.

Andrew Schorr:
Okay, but just going back to this part of the question, Naveen, is, is there anything that somebody may be already taking that could have utility?

Dr. Pemmaraju:
Yeah, the interferon, as you mentioned, is one in that category. I have seen some early reports that interferon may be helpful in this COVID-19. It's interesting. One of my patients did ask me possibly the direct question at some of our viewers are wondering, "Hey, if I'm already on interferon, does that have activity in this fire?" Of course, we don't know that yet. It's an intriguing proposition, and that's being studied formally as well, so both the regular interferon and the pegintereron alfa-2a (Pegasys) interferon. Stay tuned for that, but that's intriguing, and we're following up on that.

Andrew Schorr:
Okay. I have a question about testing. In different parts of the country now, they're testing as long as they have the supplies, maybe even drive-through mouth swabs and all that. I know as this rolls out, you're saying, "Well, we need to test healthcare providers first, and then we need to test people who may be at higher risk where people have been exposed, et cetera." Okay, so if we're at a higher risk, if this rolls out in that town or city near us, should we go get tested?

Dr. Pemmaraju:
Right, so that's the key. My answer to you is, right now, as you said, there won't be as many tests, but once the test is widespread, it's available to every person, then you're going to see people being tested at a higher level. I would say right now, if you're asymptomatic, you're following all the guidelines, not necessary, Andrew, but you're right, once the test is available in every community, widely available, some of the costs are being defrayed it looks like, or being put forward.

The real question is this though, I want to bring this to you. Even if one of our patients or anyone we know gets a test, I hate to say this, but it's only negative at that moment. In other words, if you get a test when you're asymptomatic but worried, it may actually possibly could give you a "false sense of security," so I think for that reason, for the availability reason, I think if we're asymptomatic and people are okay, let's not get tests. Let's save it for those people who are in the real high risk or actually exposed. But your point is a good one. A negative test may give a false sense of security, so let's not all go get out and test it, unless there a reason for it. That's kind of my message today.

Andrew Schorr:
By the way, for our folks, if you're just joining us, we apologize. Dr. Pemmaraju is having a little problem with his video camera, so you get to look at me in my bright, hopefully upbeat shirt here. But you hear Dr. Pemmaraju, who's joining us from MD Anderson, and he's both a scientist and a clinician and specializing in MPN, so thank you for being with us, Naveen, even without a camera. It's okay.

Dr. Pemmaraju:
Thank you to you and the team for allowing me to do this even without the camera—means a lot.

Andrew Schorr:
No, no, no. We have well over a hundred people who were on here and…

Dr. Pemmaraju:
Wonderful.

Andrew Schorr:
...we’ll try to get answers to some more questions. Now, can I go back to clotting for a minute?

Dr. Pemmaraju:
Yes.

Andrew Schorr:
Okay, so clotting is kind of a cardiovascular thing. Some of our patients have even had stroke episodes or worries about stroke, things like that. Is that a double whammy? They have an MPN with the cardiovascular complication. Are they yet at even higher risk?

Dr. Pemmaraju:
Yes, Andrew. The answer is yes, unfortunately. Again, I hate to be the bearer of bad news, but information and knowledge is power, as you've always said. One factor of this COVID-19 that we're starting to see from the New England Journal Reports from Wuhan, China and some of the first places is exactly what you said, not just older age or immunocompromised, but the fact that the virus does cause cardiopulmonary lung/heart damage. If you have any preexisting heart or lung damage defined as some of the common entities that a lot of our patients have, COPD, emphysema, so chronic obstructive pulmonary disease, emphysema, heart disease, heart attack, stroke, yes, if you layer that on top of age, the MPN, whatever chemotherapy you're on, I would say yes, our patients are at an exquisitely higher risk, and so these guidelines are even more important.

That's the scary part for many of our patients. Now, having said that, I think that, in general, we are seeing this surge of information and social distancing and frequent handwashing, and with that and combined with doctors’ offices and cancer centers calling each other 24, 48 hours, checking in, is this visit essential? Do you actually need to be here? I think we're going to be able to work towards flattening the curve even for our most at-risk immunocompromised patients, Andrew.

Andrew Schorr:
Okay. Just because we got a lot of questions on it, some people are getting interferon, so again, just to be clear, Pegasys, interferons, we don't know yet for sure whether that helps.

Dr. Pemmaraju:
That's right. As of this program, which this is March 19th that we're doing this, there are early reports that suggest that interferon could have some activity, but we don't know. The principle, of course, is that the body, when you have a viral infection such as influenza, such as this, naturally generates interferons, so that's part of the viral host response. The scientific theory is that can we then capture that? But we have to say as of this viewing, we don't know the details on that. We don't know if that really prevents the disease. We don't know if patients with MPN on that are going to benefit, so let's stay tuned and watch out for that science as it evolves.

Andrew Schorr:
Okay. Naveen, you and the other doctors, they have us get blood tests, and I know mine come back HL, HL. They're all out of whack. You know, with the myelofibrosis. I try to look at it and say, "Okay, well, what does that say about the strength of my immune system?" If it's just a little bit out of whack, I'm not in big trouble. If it's—how do we make sense of that? We got a question that came in. Somebody said, "I have PV and have high white blood counts. I'm newly diagnosed, and I'm sure what leukocyte, eosinophils, basophils means in terms of my immunity." How do we make sense of that?

Dr. Pemmaraju:
Right. There are two answers to that. One is the objective scientific, which I'm excited to tell you, and then, of course, there's kind of the gestalt overall. From a scientific standpoint, to answer to our viewer, yeah, there are certain factors on the CBC. Some of them are used more by the laboratory, some by us, the doctors and patients in the clinic.

There are three main things you want to look at on the CBC, complete blood count, in order to tell you about your immune system. By the way, this is a snapshot, not a total picture. One is the overall white blood count, as you mentioned. If that number is too high or possibly even too low—if it's too low, for sure, but possibly too high, that could mean that there's too much inflammation going on in the body. That's what the person is asking about, tissue injury, inflammation. That's true in that sense. You need to be careful for that. By the way, some of us also think that may could be a factor leading to increased clots as well, but that science is ongoing.

Number two is the absolute neutrophil count. For everyone out there, almost all of you have had a CBC. Look at the ANC, absolute neutrophil count, and depending on the scale, if it's below 1.0 or 1,000—you have to look at the scale on each report. That's when we start to call people neutropenic, if you've ever heard that word. If you're in a usual doctor's office situation, some people wearing mask and gloves, that's something very important. If you are neutropenic, below 1000, below 500, then we think you're at a higher risk for what we call opportunistic infections, Andrew, so viral infections, fungal, et cetera.

Then the third factor to look at on the CBC is the chemistry panel. The chemistry panel tells you how your kidney is doing, your liver, really helpful information, and judging by that, if any of those are not where they should be, those also could possibly impair your ability to take in medicines, respond to infection. I would say that that's the most important part, the CBC and the chemistries. My God, you're right. It tells a whole novel. Every patient, you have a whole story waiting to be seen.

One last comment I want to tell you because you've been so good about this over the years, the numbers don't tell the whole story. This is not something that you look at in isolation and freak out about and don't mention to anyone. Knowledge, as you've always said, is power. Look online, look at your patient portal, but don't see something and then worry about it and not bring it up.

For example, you may see a value that's completely out of whack, but it turns out it's a pathology lab value of the shape of a blood cell that's out of whack in 100 percent of patients. Look at your patient portal, look at your labs, but don't forget about the part two of this, which is the overall patient. How are you doing? What are your co-morbidities? What's your fitness? What therapy are you on right now? That, together, can tell you what your immune system is doing right now.

Andrew Schorr:
Wow. Wow. Okay, don't freak out. We have 105 people listening…

Dr. Pemmaraju:
Wow.

Andrew Schorr:
...and getting a look at me, guys, thank you, I'm not used to being on camera all the time. Here's a question that came in from Judy. Naveen, if we can go just a few minutes longer…

Dr. Pemmaraju:
…yes.

Andrew Schorr:
So many people. Okay. Judy, I'm just going to read it, Judy. She had ET and recently progressed to PV, also have significant cardiac disease with an EF, so ejection fraction, I get that, Judy, of 33 percent recently diagnosed post-cardiac arrest, whoa, subsequent diagnosis of ARVC. I don't know what that is. She says, "I supervise a local ICU for respiratory services, so I'm right in the trenches. My hematocrit is 49 percent. First phlebotomy delayed for six weeks, notably symptomatic, but still going to work. Should I continue to work in the ICU?" She's an angel for working, Judy, but she's worried.

Dr. Pemmaraju:
She's worried. Yeah. I think we're going to be getting a lot of questions, you and me over time. We don't know the exact other details of the patients.

Andrew Schorr:
We can't be too specific.

Dr. Pemmaraju:
We can't be specific here. So in general, these are the kind of discussions that she has to have with her local doctor and find out if it's safe for her or not. But I think this is the kind of question we're going to be getting over and over.

Andrew Schorr:
You guys keep joining, and we keep getting the same question. We're going to answer it one more time, but bear with us. A lot of people are saying, do the interferons improve the immune system? So the final answer, Dr. Pemmaraju?

Dr. Pemmaraju:
So the final answer is unknown at this time. We would say the facts that we know, because this is the hot topic in our field, is that any virus that attacks the body, the body responds to it by generating natural interferons. So that's the principle of that. And so you get the regular influenza, interferons are generated. That's what makes you feel flu-like actually. So it's not the virus. It's the interferon response by the body.

Two, our patients are on a formulation of interferon for their MPN. And then three, this question of, does it confer some extra immunity? We don't know yet, but what I can tell you is there are studies ongoing in the lab and possibly even being launched clinically to see that.

The question is how to stop the viral entry, how to stop it from replicating. We don't know that answer yet.

Andrew Schorr:
Okay. Now, here's a question that came in from Linda. So Linda says, “We're carefully staying home and social distancing. How will we know when it's okay to return to normal? Do those of us at high risk need to add time once given the all-clear?”

And I'll just add to that a little bit. So we know we're trying to flatten the curve, but let's say like maybe they're seeing in China, a decrease in number of new cases, et cetera. We say, “Oh, things are getting better. But could they get worse again? How do we know when we're in the clear?”

Dr. Pemmaraju:
Yes, Andrew, I think that's the big thing that we're trying to see. So from an epidemiological standpoint, I want to define for our viewers, because you've probably heard this phrase flattening the curve. That's the whole ballgame here.

It does refer to a graph or a curve on a piece of paper, that shows the development which can be exponential or rapidly going up. That's what we're going to see for the next couple of weeks and I predict months as more tests come out, as more spread in the community. Once we get to that phase where it plateaus and starts coming down, flattening the curve, I do believe and predict that our patients are at a higher risk as our viewer is asking, for the reasons we mentioned.

If you're older, already in the general population, already at risk, now you factor in myelofibrosis or MPN and a therapy, I think that what the viewer is asking is important. I don't think that the general recommendations apply enough to our patients. Our patients may need to exercise more caution, more social distancing, and we're going to find that out once we get to that point. And right now we're not at that point yet. That's why we're meeting under these circumstances. So that's why that's so important.

Andrew Schorr:
Wow. So the new normal has a long tail.

Dr. Pemmaraju:
Well said, Andrew. Wow. Wow. Well said.

Andrew Schorr:
All right. So we'll try to get to just a few more questions. Also, our plan at Patient Power and really it's so critical to us and these issues are not going away. We will do another one next week. We'll get all the cameras working.

Dr. Pemmaraju:
Good.

Andrew Schorr:
Dr. Pemmaraju, I'm trying to get my doc, Dr. Catriona Jamieson, but other noted MPN experts, nominate your doctor if you like. Send them to [email protected]

All right, so first of all, here's something that came in. Is there a greater risk for patients on ruxolitinib (Jakafi)? I'm on another JAK inhibitor, fedratinib (Inrebic) now. I was on Jakafi. And he says, we know there's greater risk of infections, but does it involve the coronavirus? So are patients on a JAK inhibitor, just because of that at greater risk?

Dr. Pemmaraju:
Thank you for this question. So this is something we do have some historical data on. The short answer is probably yes, because exactly what your viewer asked, which is, we already know by the science of JAK inhibitors, they modulate inflammation in the immune system. That's how they work.

By the way, that's also why they're working in graft-versus-host disease. That's the third FDA approval for the ruxolitnib drug. So in the early studies, as most of our viewers know, and as, Andrew, you know well with ruxolitnib, the longest serving JAK inhibitor, we did see, in fact, increased opportunistic infections. This means that we saw increased viral infections. Now those were the common ones, such as the virus that causes shingles. That's herpes zoster. Fine.

But we did also see some case reports, we didn't see widespread, but there were reports in the literature from our colleagues. Some patients had reactivation of tuberculosis, TB. Some patients had other viral and other illnesses.

So by and large, as you and our viewers know, ruxolitinib has been around now for many years, overall safe, well-tolerated drug. But as a class of drugs, the JAK inhibitors now including fedratinib and the other JAK inhibitors in development, I would say yes, that means that you do have a slightly higher risk of any kind of infection, bacterial, fungal, parasitic, viral, et cetera.

Andrew Schorr:
But there's a balancing act in everything. I'm taking fedratinib, four pills, four capsules every night, and I took Jakafi for seven-and-a-half years with good results. So with any of these, and the ones in development though, they're controlling our myelofibrosis.

Dr. Pemmaraju:
That's exactly right. And this balancing act is very important, because by and large, most people are doing well. But with people who are having some of these infections and modulations of the immune system, we do think that that's the same mechanism that would allow you to have a higher risk to contract the COVID-19.

So by and large, again, most people on these JAK inhibitors are doing well. But this concept of reactivation of an old infection or picking up an opportunistic infection is slightly higher risk if you're taking a JAK inhibitor. It is also a chronic drug, right? You're taking it once a day, twice a day, depending on the JAK inhibitor. So put that in our mind. These are chemotherapy drugs that patients are taking, and they do confer that higher risk of infection.

Andrew Schorr:
Okay, kids, we're all in it together. We've got just a few minutes longer, because we have so many questions. So many of you are there, “Shopping for groceries or going into the pharmacy, should I get my care partner to go instead of me or even if I go in, does wearing gloves, wiping the cart, even wearing a mask, what do we do?” So first, should I get somebody to go for me? And what about precautions there?

Dr. Pemmaraju:
My personal preference is yes, I would like our patients if they are so fortunate and if it's feasible, I do prefer if they have someone else who can do those, just for the simple reason of reducing your chances of exposure out there while the curve is still going up, before we get this under control.

The second part of the question, if you do have to go out, which right now is allowed and is okay, we're not on a complete national lockdown. I do advocate for our patients in particular, can't say the same for the general population, I do think it's a good idea to have hand sanitizer with you. It's okay to wipe down the surface of the cart if you feel to do that.

But the utility of gloves and mask interestingly is not showing a whole lot. Again, this virus is a pretty virulent one. It really looks like hot water and soap and avoiding the virus in the first place by distance are your two best maneuvers here.

I would say if you feel comfortable with a mask and gloves, that's your prerogative to do. I wouldn't say that's essential, but I do prefer that our patients, if they can have a caregiver, sure, I do advocate that it's okay to ask them to do that, particularly in the coming weeks and months.

Andrew Schorr:
Okay. Just a few other questions, Naveen. I am sorry, I don't know what this is. Esther is sending me notes here. You guys are asking out there, your viewers asking about something from China, D-dimer. Do you know what this is?

Dr. Pemmaraju:
Yes. Yes. I think they're just asking about the D-dimer. That's the lab test, Andrew. Yeah, it is coming up a lot in the literature. So D-dimer is a common lab that we check a lot in America and Europe, but we don't check it anymore. It's a measure of inflammation. Basically, it's a breakdown product in the blood that measures inflammation.

In older days before CAT scans and all these fancy things, the D-dimer was used to see if somebody has a clot, for example. So if you had an abnormality in the D-dimer, that could actually clue you in that a patient had a DVT, a deep vein thrombosis or a PE, pulmonary embolism. What's interesting with the COVID-19 what you and your viewers are touching on, is it raises inflammation, particularly in the older immunocompromised host.

So, the people that are going into the ICU, and some of the people who have died, Andrew, they have what looks to be a cytokine or inflammation storm, something on the order or similar to a CAR-T patient getting a similar process. What does that mean? Well, the D-dimer can be the earliest, easiest, most readily available in all countries of the world test. If that thing is high or out of whack, abnormal, then that may possibly signal, “Oh man, this person has a higher inflammatory burden.” So that's what people are seeing.

A second factor here is, we don't know this answer yet. But if we have people with a high D-dimer, high inflammation, there are other markers of inflammation, can we then have an algorithm where we watch those people carefully or if and when there is a treatment, apply that readily? So that's what the D-dimer is, very important all throughout the world. It's a readily available test that may help guide who can get sick and who won't.

Andrew Schorr:
Okay. Last here, I wanted to discuss with you and folks we will do another program next week, and Esther will arrange that, and we'll put this up as an audio replay on our websites.

Dr. Pemmaraju:
Thank you.

Andrew Schorr:
A podcast, if you will. Okay, so God forbid if I called my doctor, I had certain symptoms, and it seemed like it was the coronavirus, COVID-19 and I need to be hospitalized as an MPN patient, in my case, somebody with myelofibrosis, what would happen at the hospital? If I want to go to MD Anderson, what would happen?

Dr. Pemmaraju:
Thank you. This is important. We have at our institution fully prepared for this and many institutions across the world. Here's basically what would happen in the first 48 hours. First, we have a screening process, believe it or not, Andrew, not only for patients and caregivers, but even for employees. For me, everyone else entering the hospital, complete with temperature screening and questionnaire.

For a patient who comes in, we have what's called a designated unit, and every hospital should do this. A designated unit where the patients with high suspicion or positive COVID-19 will go, basically to separate them from the other patients.

Number two, we and others have now designed COVID-19 rounding teams, so that means dedicated groups of individuals who are assigned. They'll rotate off for their own safety to patients in that pod. Number three, every hospital and group needs to be working closely with their infectious disease consultants, who will consulted immediately upon admission and following.

And then number three, whatever treatments are available, those are divided into two things, Andrew. One is the supportive care treatment, so that is treating for secondary bacterial and known infections. So that's what antibiotics would actually help for. Obviously they won't help for the virus.

Number two, God forbid if patients need ICU ventilator support, that's what you're hearing a lot about in the news. Get those patients triaged to that high level of care. And then number three, inflammation-fighting drugs if they're applicable, like we talked about, the steroids and other medicines.

Now, the second pathway are these experimental or compassionate use drugs that you bring up. The chloroquine, all these other drugs that you're hearing about, possibly HIV drugs that may work and you better believe it. These information pieces are going to flow readily, daily. We're going to get updates on these daily.

In fact, in New England Journal of Medicine today, there is something that just came out on some of these viral drugs. Unfortunately, they were not found to be helpful, but at least those trials are ongoing. So that would be the day in the life, triage. Do you need ICU level care? God forbid, that's one separate pathway. Regular floor care, separate teams, PPE that you're hearing a lot about, the personal protective equipment, teams need to be trained. So doctors and providers and nurses, we are receiving specialized training to be able to serve you. And then we ourselves as healthcare workers need to stay safe and healthy as well.

So that's kind of the first 24 to 48 hours, if you were to come into the hospital.

Andrew Schorr:
Okay. So just to be clear, we tell all the people all the time, connect with an MPN specialist for your case. So if you have that specialist, which hopefully we each have on our team, it's decided that we do need to be in the hospital, will you as an MPN specialist weigh in with this COVID-19 group? So that our case, so we're seen for what we are, living with myelofibrosis, ET, PV, whatever it is?

Dr. Pemmaraju:
That's exactly right. In this new era, one would have two separate teams, Andrew, and you're right, one for the continuity of care to respect and understand the chronic MPN state and then the new team for the COVID-19, and so you would have both teams working together. That's absolutely correct.

Andrew Schorr:
Okay. And then related to treatments, so what I've been hearing is it's supportive care, you mentioned it.

Dr. Pemmaraju:
Right.

Andrew Schorr:
Even if like somebody had the flu—but it sounds like what's starting to happen now is, are there existing medicines that have been for something else or experimental ones that can be fast tracked and at a major research center like you're at Naveen, MD Anderson may be brought to bear?

Dr. Pemmaraju:
Yeah, there's three classes of approaches. One is what you mentioned, the repurposing of older drugs. I find that to be the most fascinating, because by definition they're readily available, usually cheaper drug. So again, we talked about the anti-malarial drugs such as chloroquine, the autoimmune drug, hydroxychloroquine and others.

Number two, very exciting for my colleagues and scientists around the world, which is drug screening, which is taking cell lines, taking models of the coronavirus and giving new experimental drugs to that. So you may see non-FDA-approved or new drugs being fast-tracked as he said, which means cutting down the usual red tape to get drugs into clinical trials faster.

And then number three, very important to mention on this program is immune therapy. So that means the development of a vaccine, don't forget about that. Groups are working right now. The first clinical trial has already been launched to try to discover the first ever vaccine against COVID-19. That would be very powerful if that was to be found. So now you're talking about preventing, not even just treating.

In that same immune space, put down on your list Interferon question mark as we talked about at the top of the program, some of your viewers will wonder, can there be a CAR-T cell or other immune construct designed against this, possibly those are being worked on. But those are the three classes, re-purposing the old drugs, finding new therapy drugs and then immune approach, you got it.

Andrew Schorr:
Okay. We're just going to do a couple of quick things folks, and then we're going to promise we'll do something, and we'll arrange it early next week. Okay, so we're trying to be fed in New York City and even here where I'm in Carlsbad, California, it's take-out only, basically. So, if someone picks up for me take-out food and I zap it in the microwave and heat it up, do you think that offers some protection?

Dr. Pemmaraju:
We think it does, Andrew, believe it or not, basic questions like that, we still don't know. There's a New England Journal of Medicine paper that just came out a few days ago that I'll refer our readers to that unfortunately does confirm that this COVID-19 does, in fact, live on surfaces, not just carried as what's called droplets. So, what we know so far is that it does appear that hot temperature appears to hopefully kill this thing.

So, washing the hands for a long time with hot water and soap, microwaving as you said, cooking food—so that's our understanding right now. Same thing here in Houston, where there is no longer allowed to dine in, take-out only as you said and delivery. There are also, we should mention for those who are able, these things cost a lot of money. And as you know, Andrew, but if people are able to deliver groceries on these, some of these online, those are ramping up as well. So we think that heat hopefully helps to kill this thing, and we'll find out more in the coming weeks.

Andrew Schorr:
Okay, folks, just one or two more and then we got to go. I take a shingles medicine, acyclovir (Sitavig or Zovirax)—one pill a day. So do we, might that help with that? Do we have any idea whether something like that would help?

Dr. Pemmaraju:
Good question. I looked into this myself, we don't know yet. It does appear that the herpes zoster, which causes the shingles is in this different family, Andrew, I guess I would say of viruses. So the coronavirus is its own specific family. Most of our viewers have heard of it before, because it's one of the most common to cause the common cold, interestingly. So there are 50 or 60 of these already, so it's a different family altogether of viruses.

So right now, we don't have enough data that validates and tracks acyclovir, unfortunately, that those drugs have much activity. So that's unfortunate, right? Yeah.

Andrew Schorr:
Okay, two last things—we were talking about the absolute neutrophil count, the ANC on our blood tests. How does someone calculate that if they, we have a lot of engineers—how do you calculate it?

Dr. Pemmaraju:
Well, there are a couple of answers that fortunately at my center I don't have to, because mercifully they show on the report. So what you have to go to for our viewers is the differential, the doctors sometimes we call it DIFF, D-I-F-F for short. So the differential tells you the answer. What it means is there are, let's review this for our viewers.

The white blood cells, the infection-fighting cells of the body have five major subtypes, five major flavors, neutrophils, eosinophils, monocytes, basophils, lymphocytes. Okay. Those are the five types. And if you will, they form the percentage, so those five have to add up to 100 percent, so that's the diff or differential. Out of those the neutrophils in the normal state actually are the predominant or most common subtype of white blood cells generally somewhere between, I don't know just under half to over half of your white blood cells.

So, the ANC or absolute neutrophil count is just a calculation from that, it's a percentage of the overall count. More importantly than that, you want to know if it's above or below that 1.0 number that I mentioned or 1,000 depending on the scale, so that's how you do it. It's a fraction of the overall white count, there's a formula for it, but most labs are just showing it.

Andrew Schorr:
Okay, folks, but talk to your doctor and then…

Dr. Pemmaraju:
…talk to your doctor.

Andrew Schorr:
Last thing is, do we as MPN patients with the symptoms for the virus be any different for us? Would we have as high a fever? Would anything be different?

Dr. Pemmaraju:
Wow. This is something we've actively been talking about at the expert level. I do want to talk about that as a final closing with our viewers. I do predict, Andrew, that there could be a couple of differences, and that's the major one. In our patients, MPN patients on therapy, post-transplant patients, older patients, there is a slight possibility that fevers may be manifest differently.

For example, if you are immunocompromised already, one may not be able to mount as high of a fever as say a general population patient. My goodness, this is important. So that's where it comes in looking at the cough, the shortness of breath, when compared to the baseline.

The second factor is, the importance which you've always left. If someone has the luxury of having a caregiver, somebody to look after you, this is a good time, someone to check in on you, even by phone, once a day, once every other day to get an outside perspective. Because oftentimes, Andrew, we ourselves, even though we know our bodies well, we may not be able to judge day-by-day variation. So I would say that's very important, so it's not just about a fever as a temperature on a scale. It's an overall symptomatology feeling. And if you have someone checking in on you, they can tell the changes in real time on you.

Andrew Schorr:
So, Naveen, when do you call the doctor?

Dr. Pemmaraju:
This is the essential question. For our patients, it's different. Our patients can be sick or at baseline can get sicker. Always talk to your doctor when you have any doubt. And when you have any change from your baseline, don't rely on numbers on a lab test or on numbers on a thermometer. You know your body best. You know when it's different. Call, call, call when in doubt, and don't be worried, "Oh, I'm going to inundate my doctor's office."

In fact, Andrew, this is the time now where we need people to communicate. I mentioned, and I'll close with this, we as doctor offices need to be calling our patients to check in before the visit, patients and family members call in. It's better to clog up the phone lines rather than to be sick later on, because you had a doubt or a question.

Andrew Schorr:
Right. Or be sick and come to the hospital and just stroll in there and maybe put other people at risk as well.

Dr. Pemmaraju:
That's right.

Andrew Schorr:
All right. Folks, we've had 100 of you with us. Dr. Pemmaraju, thank you so much for your time.

Dr. Pemmaraju:
Thank you.

Andrew Schorr:
Couldn't get your camera to work. We'll work on it next time, but we will have other programs and other MPN experts. Send in your questions folks to [email protected] Thank you for looking at me for an hour. And I'm glad I shaved today, you know, in any way, and we'll put this up as an audio-only podcast on the page related to coronavirus on our website, patientpower.info.

Tell others about it in all your support groups and all that. Okay, we did everything we could. Linda, thank you for thanking us. Esther is behind the scenes with our great Patient Power team, Doctor Naveen Pemmaraju. Doctor Pemmaraju from MD Anderson, thank you so much and I want to do one of the things I've been doing on other webinars.

In Spain, every night people who are locked down go out on their balconies and they applaud the healthcare providers as actually angels. So, Naveen, pass this on everybody at MD Anderson, your brother and sister providers and some of whom are living with MPN that we've seen on this program. Thank you for all you do, Naveen Pemmaraju, thanks for being with us.

Dr. Pemmaraju:
Thank you Andrew and Patient Power and Esther and everyone there. It warms my heart to see your face and to see the amount of information you give to our patients with rare diseases. Just to let them know, Andrew, that they're not alone, that we're all in this together whether you have a disease that affects one out of a million people or something more common, that Patient Power organizations like yours are so essential to get information out there. God bless you for what you guys do for our patients.

Andrew Schorr:
Well, thank you all. All right, this is Andrew in California. I'm staying close to home, just walking the dog with Esther. That's it, all the best to you. Look for more programs next week and the replay of this as a podcast. As I like to say, 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.

Recommended for You

You might also like