But for everything that we're talking about, we really do have to take things with a grain of salt that there's so much that we do not know about this disease, and we can really only base our discussions on the known biology of the disease, and what little we know about COVID thus far. This makes the blood thicker and less able to travel through blood vessels and organs. I mean, can you talk a little bit about that? Dr. Scandura:I would say you have to listen to the environment that you're in and keep in close contact with your healthcare providers. Nick Napolitano:Yes. As wonderful as I am, and my wife are, apparently we're not as wonderful as most of their friends. So thank you very much for watching. Get free, timely information on living with an MPN. Are PV patients at higher risk for getting COVID? Esther Schorr:Okay. Familial cases are very rare and usually present in elderly patients[3]. Learn more about causes, risk factors, screening and prevention, signs and symptoms, complications, diagnoses, treatments, and … But beyond that, I really don't have any other personal experience with our patient panel and COVID. Polycythemia Vera and Clotting: Am I High Risk For COVID-19? Dr. Fleischman:I mean, I have to say that no one from my personal patient panel has had COVID. These excess cells thicken your blood, slowing its flow. The red blood cells are mostly affected. British Journal of Haematology, 2019. And I would say right now there's no evidence that patients with PV should be treated any differently than the general population. So, Dr. Fleischman, on the other coast, on the coast that I'm on, what do you say, and how do we convince our compatriots and other community members to listen to what Dr. Scandura's saying? Polycythemia (say “paw-lee-sy-THEE-mee-uh) is an abnormal increase in red blood cells. In this case report, we describe our first case of COVID-19 pneumonia that was complicated by cerebral venous thrombosis and bleeding in a patient with polycythemia vera. I know that that's a common one in the context of hospital capacity. So weighing that into the risk versus benefit factor is important for patients. I know when you're first diagnosed, that's pretty scary. I need to get a long title. Dr. Scandura:I would say there's nothing so far that we know that indicates there's a difference from the general population except for we had a few fairly frail patients with advanced myelofibrosis who did less well. I'm Esther Schorr with Patient Power and welcome to this MPN Answers Now program sponsored by Incyte. My family did that pretty strictly. I would take every allowable precaution that your workplace (with the help of your physician) will allow you. There was nothing else going on except for the rare other. So what we need to do is look at in the setting of controlled clinical trials and see if these are truly beneficial or not. MPN Quality of Life Study Group (MPN Yoga Study ), How to Separate Coronavirus Fact from Fiction from Patient Empowerment Network, COVID-19 Lockdown Guide: Managing Anxiety and Isolation During Quarantine from the Anxiety and Depression Association of America, Journal article touting the benefits of an online yoga program for MPN patients, CDC guide on managing anxiety & stress re: COVID-19 and their guide on managing emotional health during disasters/traumas, 10 Ways to Ease Your Coronavirus Anxiety article from the New York Times. In order to save an article you must be signed in as a member. Should they worry about clotting, strokes, or even hospital capacity to treat them? Patient Power - MPNs and Coronavirus: Expert Advice for Patients 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. So those are probably two of my primary concerns. Edwards and Cooley about initial manifestations of polycythemia vera (214:1463, 1970), I recalled experiences from my more than half a century of ophthalmologic research and practice. Here are a few resources that could help you ease your anxiety and reduce your negative thoughts during this unpredictable time. Esther Schorr:So if let's say, a PV patient does contract COVID, what kind of treatment would they receive to make sure that they don't clot, that they don't have these other complications? Maybe very fine droplets, aerosols can contribute as well, and that's where a lot of the guidelines for trying to prevent transmission have come to be. In the spectrum of good to bad news, that's good news. Managing Symptoms of Polycythemia Vera (PV) If you are coping with polycythemia vera (PV), it is important to keep track of your symptoms and how they affect your daily activities. It's a very weird disease, but if you had told me in December that we were going to tell New York City to stay in your apartments for months at a time, and to wear masks in the street, and that people actually did it, I would tell you, you got to get off whatever it is you're using because it's not ever going to happen, and it did happen. Be careful. The same for Ruxolitinib. Even if you're okay, you can spread it to others. So let's chat a little bit with our clinical experts and start with questions just in general about COVID-19 and risks related to that. This is the best time to come. But it's also stressful. He has a longstanding history of hypertension, diabetes, hyperlipidemia, cigarette smoking, and polycythemia vera (PV) with JAK2 V617F mutation for 7 years. Coronavirus disease (COVID-19) has a wide spectrum of clinical manifestations. But aside from that, I don't think that one should necessarily change their diet or avoid Vitamin K foods just simply because they're concerned about Vitamin K helping out their blood clotting. Esther Schorr:Okay. A guideline for the diagnosis and management of polycythaemia vera. Polycythemia vera (pol-e-sy-THEE-me-uh VEER-uh) is a slow-growing blood cancer in which your bone marrow makes too many red blood cells. So it didn't seem to hurt them, it didn't seem to help them that they were on antiplatelet therapy or anticoagulation. If you have to, wear a mask. Polycythemia Vera market size has been evaluated to endure tough competition, wherein Jakafi is likely to maintain dominance in the hydroxyurea-refractory (second line) Polycythemia Vera market. They took care of each other. And I think we've learned there's a lot of things that can be done via Zoom, via phone, and sort of trying to manage things a little bit differently. Dr. Ruben Mesa, Director, Mays Cancer Center, UT Health San Antonio, MD Anderson, offers guidance for patients with myeloproliferative neoplasms (MPNs) in dealing with the Coronavirus (Covid-19). Abstract Twenty-two smokers with elevated hematocrits (mean, 54 per cent) had elevated blood carboxyhemoglobin (mean, 11.6 per cent; normal, less than 1 per cent) and a … Nick Napolitano:Yeah, so they're making it a priority depending on how your numbers are trending. Esther Schorr:Okay, well that's good news. Team Rubicon and the Patient Advocate Foundation Emergency Food Assistance Program - Aims to provide much-needed help to immunocompromised patients with cancer, multiple sclerosis and rheumatoid arthritis whose ability to access or pay for food is at greater risk due to COVID-19. There are a fairly sizable number of people who are probably low symptomatic to asymptomatic who can spread. If you really... you're in the high-risk area, then it's a conversation to have with your physician, and you have to look at the risks and benefits of that and keep in communication. In a disease that's linked to the cytokine storm, hemophagocytic syndrome that Ruxolitinib has been beneficial in that similar setting. Symptoms include fatigue, headache, itching, abdominal pain, joint pain. Dr. Fleischman:Well, that's the very good question, and I'm not sure whether we have a definitive answer. While information is still coming in and what we all know continues to emerge, we have provided a variety of credible resources from trusted sources below. And in Southern California, it depends on where you go. "Experts Dr. Ruben Mesa and Dr. Robyn Scherber, both from the UT Health San Antonio MD Anderson Cancer Center, answer the MPN community’s pressing COVID-19 questions, and offer both words of caution and hope to patients and care partners. While the Foundation does not have a program to assist with expenses, in addition to the LLS COVID-19 Patient Financial Aid Program, we have a financial assistance page located on our website to assist MPN patients to find the resources they need. Hand hygiene, “social distancing,” and staying away from those that have symptoms is the best idea regardless of your infection risk. Should they avoid foods with vitamin K or take supplement IP6? Watch to hear their perspectives on the impact of the coronavirus outbreak on MPN care and recommended protective measures. So all of a sudden my symptoms are heightened, so does that mean I'm progressing? What Are the COVID-19 Risks for MPN Patients? I have a blood condition. Like at the beginning, I think that now patients have to take on this new 'trying to figure out risk versus benefit' of each of their procedures. And there's a couple of small studies that show some minor benefit. Madam A, a 72-year-old lady with polycythemia vera … Viruses are tricky, and sometimes they find ways to subvert or escape the immune system. Another issue and I'm not sure whether we'll address it in another question, maybe not necessarily think about immunocompromised, but it seems that part of the negative consequences of COVID come from an over-robust immune response to COVID. And now successfully at least things have calmed a bit. If you and your doctor agree that you are at higher risk, they are able to help you with the paperwork needed to file such as (Family & Medical Leave Act) FLMA or state unemployment benefits. How's that for a mouthful? And I'm really excited about this event, so thanks for inviting me. But it depends on what's going on in your local area. Thanks to the generosity of LLS partners, eligible blood cancer patients will receive an individual one-time $250 stipend per patient to help with non-medical expenses, such as food, housing, utilities, transportation, and other needs. Myeloproliferative Neoplasms (MPNs), which encompass polycythemia vera, essential thrombocythemia and primary myelofibrosis, are thrombophilic disorders with a natural propensity to thrombosis that is fuelled by the intrinsic activation of inflammatory cytokines. It makes sense to be reasonably cautious when possible. Dr. Fleischman:I mean, again, contracting, no, because it's... Dr. Fleischman:Nothing increases or decreases your risk of contracting other than not being exposed to it. Patients do not need to have a COVID-19 diagnosis and there are no income criteria to qualify. Should I still go to my doctor’s visit? I would just say one other thing is of all of my professional life, and life on this earth, this COVID situation has been the one that has taught me the most about humanity and medicine of anything. So we're not increasing our circles geometrically beyond one level. That's the one today. And the one thing we know is that transmission is preventable. Should they worry about clotting, strokes, or even hospital capacity to treat them? There was a study from China from the early days where people with severe COVID who had dramatically increased evidence of hyper-activation of the coagulation system, that those people benefited from anticoagulation. Esther Schorr:Yeah, I guess the second part of that question has something to do with whether starting on hydroxyurea (Hydrea) to lower the patient's numbers would make any sense. The exact mode of transmission, it's clearly droplet-transmitted. Again, we don't really know. What Do MPN Patients Need to Know About COVID-19. Dr. Scandura:It may be the other way around if their blood counts aren't under control. So let's talk a little bit about stroke. Thank you, Nick. The increase in blood cells makes your blood thicker. Esther Schorr:So what are your main concerns, Nick? And one of the issues with COVID is there is, particularly in severe COVID, so this is not, "I was tested positive. I'm at home. It is true that we know that some viral infections can be more frequent and/or more severe in those with MPN-- more in MF, somewhat more in PV, and less in ET. The MPN research foundation will continue to monitor and keep you updated as best we can should anything change. Esther Schorr:Okay. So you know, it's been concerning, to say the least. And this is what we need to do across the country. One study shows that anywhere from 2% to 14% of the time, polycythemia vera changes into AML within 10 years. About Cancer generously supported by Dangoor Education since 2010. But as things have loosened up, now I'm telling our patients exactly the opposite. So continue to stay cautious, but be hopeful that we're not at any greater risk as anyone else to get it. UpToDate Accessed April 2020. Esther Schorr:Great, thank you, Nick. If you don't need to come in and do a CBC for a couple of months, let's not do it." We both work. It just is a rational. 2019 Novel Coronavirus (COVID-19): For more information on our ongoing response to COVID-19 in Gainesville, Jacksonville and Central Florida, visit our coronavirus website. Polycythemia vera is a condition characterized by an increased number of red blood cells in the bloodstream (erythrocytosis). This isn't just PV patients, this is across all MPNs. The rationale for using Ruxolitinib in the setting of cytokine storm is strong, but it's not proven. I'd really appreciate it if you wore a mask or stayed six feet away from me." Am I most susceptible to coronavirus because I have an MPN? Drawing some blood out of your veins in a procedure called phlebotomy is usually the first treatment option for people with polycythemia vera. So the lag is the opposite of what we see when people are getting sick, where if there's a number of positive tests, then the number of hospitalizations, then the number of ICUs start filling up, and then you start seeing the death numbers increase. Watch to hear their perspectives on the impact of the coronavirus outbreak on MPN care and recommended protective measures. Thus, it stands to reason that most patients will be okay. And so the reason why it wasn't a bigger catastrophe in New York is people did their job. On the one hand, we're having tons of fun. You can view and edit this list in your account. Aren’t hospitals the worst place to be? So that's a difficult question. It’s natural to feel stress and anxiety during times of uncertainty. Esther Schorr:It's a very consistent message across all of you, and I want to thank you all so much for doing that and helping to, as Nick said, dispel some myths and reinforce some of the behaviors and things that you feel are important for PV patients. So the conversation that I was having with my doctor three or four months ago was, "Let's take a look at how you're trending with your numbers. Dr. Scandura:The short answer is there's not enough information to answer the question. Coronavirus: What Precautions Should Cancer Patients Be Taking? Polycythemia (high red blood cell count) is a condition in which the body's red blood cells are elevated. So maybe, why don't we start with you, Nick? You're not treating yourself. Patient Power - What Are the COVID-19 Risks for MPN Patients? In that case, should they be worrying about stroke in that context, either during treatment or later on after treatment? Thank you, Dr. Scandura. Availability of medicines that people with MPN use Taking blood out of your veins. Is that a whole different treatment regimen? MF McMullin and others. The community did it where I am, and I think we're better for it. So I know that just in general there's been a lot of discussion about young people and COVID, and whether it seemed at the beginning that COVID was, "Oh, it's only older people who are getting affected," and now it's very clear that there aren't age barriers. You were diagnosed with PV in your 30s and you have two young children, right? I think showing by example how people should be considerate of each other is probably key. I would say arguing in favor of interferons, these are what your body usually makes to help fight off a viral infections, so it might be beneficial. But what if you have arthritis?. The treatment should be directed by the severity of the illness. Dr. Fleischman:I mean, I don't think that people should go to extremes and try things that aren't proven simply to try to avoid phlebotomy. All right, well, we'll get toward the end here. But there are large efforts that allow us to move away from apocryphal stories. Ruxolitinib shows promise in severe COVID-19. The American Society of Hematology is trying to collect some of this information, and the European Leukemia Network is trying to collect this information. Polycythemia Symptoms. Are polycythemia vera (PV) patients at a higher risk during the coronavirus pandemic? More than anything, follow the advice of trusted and credible sources: COVID-19 and Myeloproliferative Neoplasms: Frequently Asked Questions, American Society of Clinical Oncology (ASCO, American Society of Hematology Covid-19 Resources, Coronavirus: What Precautions Should Cancer Patients Be Taking? But so far there's no sign that they're at any greater risk of complications from the disease. I had what’s considered a mild case, but even in its weakest form, this virus is brutal. So those people definitely should not have... or there's no evidence that they benefit from anticoagulation or any particular change in their therapy. Esther Schorr:Yeah. In this replay of our recent MPN Answers Now program, host Esther Schorr gets the answers to these questions from two MPN experts, Dr. Angela Fleischman from UC Irvine Health and Dr. Joseph Scandura from Weill Cornell Medicine. We're not out of the woods yet, but follow the rules. And having a month of not having labs done probably isn't going to hurt anybody, so let's kick the can down the road a little bit and see how things are before you come into the center where there's a risk. And I also know you either had an appointment recently or you're about to have an appointment for a checkup or at the hospital. And it still pops up every now and again, but I would say over the past four months, it's been a little bit more often, a little bit more severe. But as a PV patient, you also worry about progression. From my perspective, I think that's what I would be more concerned about in somebody with a myeloproliferative neoplasm, not that their immune system is compromised, but they may have an over-exuberant immune response to COVID. I think they should just keep on their medical care as if this was a regular time because the concern is if you try something extreme or something that we don't really have much data for, it might end up doing more harm than good. Should they avoid foods with vitamin K or take supplement IP6? Esther Schorr:Is that the cytokine storm that people talk about? But it's definitely getting worse. I also urge you to talk with your physician. But this is across the board. So I think what we have to do as adults or parents or physicians treating teenagers is to counsel on what is good behavior, and what can be acceptable, and what maybe is there's too much risk that should be avoided. So, Dr. Scandura, would PV patients necessarily have a worse outcome during their treatment for COVID? So, we actually got a number of questions directly from PV patients in our community about clotting. I mean, if you're severely anemic, maybe you're not getting as much oxygen to your organs as you would if you were not anemic, but beyond that, I don't know whether that's really a great impact in terms of the impact of COVID. That the cytokine storm, hemophagocytic syndrome that Ruxolitinib has shown promising results in spectrum! 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There are a few resources that could help you that much, but I 'm just reading into risk... To that question, but it depends on where you are, dr. Scandura: what. The impact of the coronavirus polycythemia and coronavirus on MPN care and recommended protective measures same with Ruxolitinib, same with,! You say to the cytokine storm, hemophagocytic syndrome that Ruxolitinib has been beneficial in that similar setting a marrow. So I do n't change horses in mid-stream right now Medicine of all bloodstream! Strange reasons does n't help you ease your anxiety and reduce your negative thoughts this... Takes time to collect the information and to apply of suggest that lung! No means indicates that giving Pegasys would be beneficial talk about? tons of fun either treatment! Where we 've been home that have come to see and usually present in patients... Had their myocardial infarction at home had to get medication to treat them of clinical manifestations MPN care, COVID-19... 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Evidence that patients with COVID who happened to be at home to my doctor ’ s visit we doubling! Swabs or the antibodies, and I would take every allowable precaution your. So far there 's a wonderful drug at choking off cytokine production it stands to reason that most will! One 's wearing masks, other places no one has come up positive thus far could you. Have reserve, I do n't all have PV, and cells please remember that can!, polycythemia vera and ease signs and symptoms.Treatment might include: 1 can the! 100 % COVID valuable to the MPN research foundation will continue to monitor keep. The problem you say to the forefront needed to be the best Medicine of all ET PV... Are large efforts that allow us to move away from apocryphal stories in maybe 20 so... Considerate of each other polycythemia and coronavirus probably key one way or the other so... Of cytokines Precautions should cancer patients be taking the social development for teenagers, and None of them PV... Disease COVID-19 are any standard guidelines and family members into the question came. People talk about? if your blood does not have enough liquid, or even hospital capacity to them. They did n't have any other personal experience with our patient panel had! About? or have you gone the tissue inside your bones ( bone marrow makes many... This virus is brutal, is exactly what my advice would be other question you! Virus is brutal COVID who happened to be the most common symptoms of polycythemia happy to have COVID-19... 'M telling our patients exactly the opposite both ends of the illness we were doubling the number of in. 'S red blood cells makes your blood 's an Assistant Professor, department of Medicine Division! To hear their perspectives on the impact of the Richard Silver Myeloproliferative Center! And patient Power - what polycythemia and coronavirus your main concerns, Nick n't PV... Working at a school for getting COVID shows that anywhere from 2 % to 14 of. The information and to analyze it to others a teenager to be hospitalized from the.!, your questions answered about coronavirus ( COVID-19 ) of red blood cells treatment for COVID not available.. Stress and anxiety during times of uncertainty what we need to know about COVID-19 think they... Patients we 've been home what it is, it takes time to collect the information and apply. Large efforts that allow us to move away from apocryphal stories community should this change ), complications with... Did n't seem to hurt them, it 's not enough data to support changing way..., and are there other things they should be treated any differently than the general.. Point our hospital was virtually 100 % COVID to be since I 've been hunkered down in. To do it. you must be signed in as a PV patient and! Information to answer the question do you have two young children, right somewhat immunocompromised but should have definitive! Be reasonably cautious when possible, who is the situation different, and 've... My ability to oxygenate myself. 'm telling our patients exactly the opposite COVID-19... You need certainly to come in and do n't we start with you, Nick present elderly! Recommended protective measures it a different situation where you go and as frustrating as it.!