This organization has no editorial control. I don't think anybody should start these therapies for the sole purpose of hoping it's going to help them with COVID, but if they're on them already, they can be more confident that it would be helpful rather than harmful for them. Should they avoid foods with vitamin K or take supplement IP6? I'm just reading into the question that came in. So continue to stay cautious, but be hopeful that we're not at any greater risk as anyone else to get it. But you mentioned that the pandemic brought up some anxiety for you. One other thing I wanted to touch base with you about is I know that you are now located in what is kind of a former hotspot. But there are large efforts that allow us to move away from apocryphal stories. Polycythemia vera is a serious, but very rare blood disorder in children. And last but not least, we have Nick Napolitano, who is a PV patient, and an amazing advocate. Dr. Fleischman:So that's a very good question. Viruses are tricky, and sometimes they find ways to subvert or escape the immune system. This can make the blood thicker than normal. © Copyright 2021. That's one of the main benefits in patients with myelofibrosis, who have symptoms. Dr. Scandura:I would say as a general rule, and of course, every patient has their own history and medication history, and maybe comorbid conditions that contribute, but as a general rules I don't think PV patients are at any greater risk for getting the disease. 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 … Same with Ruxolitinib, same with Hydrea, so there was no obvious signal there. These excess cells thicken your blood, slowing its flow. There's what's going on in the world today around COVID and how that impacts me with a rare blood cancer. Polycythaemia vera (PV) is a rare slow-growing blood cancer where the bone marrow makes too many red blood cells. Watch to hear their perspectives on the impact of the coronavirus outbreak on MPN care and recommended protective measures. But stay cautious and stay hopeful. Continued Acute Myeloid Leukemia. We don’t know yet, so it is best to show appropriate caution and follow guidelines from the CDC and WHO about hygiene and avoiding large gatherings. myMPN: A patient registry for PV, ET and MF, How to Separate Coronavirus Fact from Fiction, COVID-19 Lockdown Guide: Managing Anxiety and Isolation During Quarantine, CDC guide on managing anxiety & stress re: COVID-19, managing emotional health during disasters/traumas. This can lead to strokes or tissue and organ damage. Nick Napolitano:At times. Nick Napolitano:Yeah, I would say I hope you got the same as I did out of this call, which was hope. The policy about who is to come in may have changed in light of Covid and/or they may have some questions to ask you to help keep you and the other patients safe. The condition causes your blood to thicken. I may even have flu symptoms that are relatively severe, but I'm not requiring hospitalization. Your participation in this research survey is highly valuable to the MPN community. And in Southern California, it depends on where you go. Coronavirus disease (COVID-19) has a wide spectrum of clinical manifestations. Hand hygiene, “social distancing,” and staying away from those that have symptoms is the best idea regardless of your infection risk. Stick with what your physician and telling you because there's just not enough data to support changing one way or the other. I would recommend calling your doctor’s office first. Esther Schorr:Yeah. Nick Napolitano:Yeah, so they're making it a priority depending on how your numbers are trending. Nick, let's get started with you. I guess it would be good to maybe discuss for our audience about whether they as PV patients should be concerned about getting critical treatments like phlebotomy. Dr. Scandura:I can say looking at what happen in New York and what we did, and Angela, I think you're kind of on the other end of things in that we're kind of in a low ebb, but when this started, my philosophy and that of many of my colleagues was if you don't need to come see us, let's talk on the phone, let's do a video visit. Dr. Scandura:It may be the other way around if their blood counts aren't under control. Click the link below to learn more and to apply. Thank you for being here. If a PV patient has checkups that they need to have, or they need to go in for a phlebotomy, I know that there's some concern that if COVID patients are taking overcapacity, will there still be room for them to get the checkups that they need as a PV patient, COVID aside? And whether or not they did any better or worse, and there was no detectable difference. 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. Read our information about coronavirus and cancer. 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'd really appreciate it if you wore a mask or stayed six feet away from me." 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. Madam A, a 72-year-old lady with polycythemia vera, ischemic stroke, hemorrhoids, diabetes mellitus, hypertension, and dyslipidemia … It usually develops slowly, and you might have it for years without knowing. Esther Schorr:Greetings from Southern California. What Are the COVID-19 Risks for MPN Patients? The rationale for using Ruxolitinib in the setting of cytokine storm is strong, but it's not proven. Things change, we get new information all the time. You know, going in for a CBC or a phlebotomy, you always have to weigh... Obviously the chance of contracting COVID from going in for a lab draw or phlebotomy is pretty small, but it's not zero. The increase in blood cells makes your blood thicker. Ruxolitinib shows promise in severe COVID-19. In order to save an article you must be signed in as a member. , I have in the past offered to help them and their employer to find a reasonable accommodation for the job, just as phoning in for meetings or events, moving their workspace to more secluded spot, and allowing work from home at times. Can you put in some perspective, either of you, about when we think about teenagers or young people with PV, is there something in particular that we should be thinking about or concerned about with these young people that's different from anybody else? It happens when the tissue inside your bones (bone marrow) makes too much blood. Please keep in touch with your hematologist, follow guidance from trusted sources such as CDC, and do all you can to maintain a positive outlook. Any words of wisdom for other people in the country who are now facing what you saw in New York weeks ago? And a lot of people stayed home and had their myocardial infarction at home. Thank you, Nick. In many cases, treatment can reduce the risk of complications from polycythemia vera and ease signs and symptoms.Treatment might include: 1. I'm not losing my ability to oxygenate myself." So those people definitely should not have... or there's no evidence that they benefit from anticoagulation or any particular change in their therapy. Some people did quite well and bounced back quickly. MF McMullin and others. Dr. Scandura:I think this has come up a few times in patients who are maybe managed with phlebotomy and whether you should push the doses of drugs to cut down on the phlebotomy, to cut down on the number of healthcare visits, but I think that depends a little bit on what's going on in the community. Thank you, Dr. Fleischman. So weighing that into the risk versus benefit factor is important for patients. The exact mode of transmission, it's clearly droplet-transmitted. Then the number of people in the hospital start dropping. I dealt with anxiety a lot when I was first diagnosed and I had to get medication to treat it. Familial cases are very rare and usually present in elderly patients[3]. If you're on a medication, stick with it. Aren’t hospitals the worst place to be? Esther Schorr:Okay. Nice to see you, Dr. Fleischman. Nick Napolitano:Very simple: follow the rules. What Do MPN Patients Need to Know About COVID-19. And with a really heroic social experiment, if you will, the number of cases slowly slowed and then began to decline. The red blood cells are mostly affected. Some people were shedding virus for a very long period of time. Patients do not need to have a COVID-19 diagnosis and there are no income criteria to qualify. Hydroxyurea was prescribed as a cytoreductive therapy. We at MPNRF have been fielding many questions from the patient community about the Covid-19, or Coronavirus, situation. But what if you have arthritis?. Polycythemia vera is a rare blood disease in which the body makes too many red blood cells, making the blood thicker than normal and causing blood clots. Count on us for updates on the coronavirus and guidance for cancer patients and family members. So, Dr. Scandura, would PV patients necessarily have a worse outcome during their treatment for COVID? The treatment should be directed by the severity of the illness. Esther Schorr:Okay. 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. A guideline for the diagnosis and management of polycythaemia vera. When there is an increased blood volume and viscosity (thickness), complications associated with this disease can occur. They took care of each other. I can't help but correlate the two, the what's going on at home, what's going on out in the world today, and then my symptoms. Get free, timely information on living with an MPN. Esther Schorr:Okay. The following are the most common symptoms of polycythemia. An anti-inflammatory drug Ruxolitinib has shown promising results in the treatment of severe coronavirus disease COVID-19. So, it hits both ends of the spectrum right now. We let our kids, for instance, interact with their friends, a couple of friends who we know their parents are doing the same. Can you comment on how they've done in general, and maybe that's true with you too, Dr. Fleischman, just in general? The American Society of Hematology is trying to collect some of this information, and the European Leukemia Network is trying to collect this information. For those with jobs that may put them directly in touch with large groups of people such as those who work as a teacher, in healthcare, education, etc. I did not have a problem with it. ASH 2020 MPN Roundtable: Individualized Treatment Plans, What Genetic Markers Mean for Your MPN Care, Latest COVID-19 Information for MPN Patients. Should they worry about clotting, strokes, or even hospital capacity to treat them? 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. How's that for a mouthful? In the spectrum of good to bad news, that's good news. Is there any benefit to taking that to reduce the number of phlebotomies? Dr. Fleischman:I mean, I have to say that no one from my personal patient panel has had COVID. Esther Schorr:But they don't all have PV. Esther Schorr:And we're just so happy to have you here too, Dr. Scandura. Polycythemia vera (PV) is a benign, but chronic and progressive, form of blood cancer. And I would say right now there's no evidence that patients with PV should be treated any differently than the general population. Esther Schorr:So Dr. Fleischman, do you see PV patients as immunocompromised because that term gets thrown around a lot as, "Oh, if you're immunocompromised, then you're at greater risk." Does Ruxolitinib (Jakafi), is that beneficial or not beneficial, or it just is what it is and we don't know yet about these medications and whether they're better or worse in the context of the virus? Esther Schorr:So I'm hoping that through the conversation with our two experts today that maybe some of the issues that you're dealing with, and I would assume some of the concerns that people listening, maybe we can get some answers and hopefully some reassurance or guidance about those things. They're somewhat immunocompromised but should have a relatively intact immune system. This isn't just PV patients, this is across all MPNs. It was unique to PV. Dr. Fleischman:Yeah, I think really prevention is the key. All right, so that might be something that a patient with an MPN or PV is one of them might be of more concern. No, that's fine. It's very good at reducing symptoms, mainly because it reduces these excesses of cytokines. Esther Schorr:Okay. So, Nick, thank you for being here and being willing to share your story. All Rights Reserved. Nick Napolitano:Yes. So we're not increasing our circles geometrically beyond one level. What would you say to the patients that are listening today? If you need elective procedure, if you need certainly to come to see your oncologist, this is the time to do it. But beyond that, I really don't have any other personal experience with our patient panel and COVID. 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. As the Coronavirus situation evolves, it’s important to remember to take care of your mental health as well as your physical health. MPN Research Foundation. With polycythemia vera, the bone marrow makes too many red blood cells. The best approach there is to follow guidelines, wash your hands, wear a mask outside, keep your social circles small and in some ways constrained. I would take every allowable precaution that your workplace (with the help of your physician) will allow you. 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. We're not out of the woods yet, but follow the rules. And if you look at the curves, it worked. Although most folks that have severe COVID19 virus injections have serious underlying comorbid health issues—even to us physicians they really haven’t been told the details what most of those are. About Cancer generously supported by Dangoor Education since 2010. 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. I went today and the hospitals are doing a fantastic job at making sure that all the procedures are in place, making sure that we're comfortable. Polycythemia (say “paw-lee-sy-THEE-mee-uh) is an abnormal increase in red blood cells. It’s natural to feel stress and anxiety during times of uncertainty. And the one thing we know is that transmission is preventable. 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. Be careful. Then the number of people in the ICU start dropping. 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. Polycythemia (high red blood cell count) is a condition in which the body's red blood cells are elevated. Esther Schorr:No, okay. I think the rationale for interferons is strong, but it's not proven. You were diagnosed with PV in your 30s and you have two young children, right? But as things have loosened up, now I'm telling our patients exactly the opposite. And as frustrating as it is, it takes time to collect the information and to analyze it to see. Symptoms include fatigue, headache, itching, abdominal pain, joint pain. Should I not go to work? If you have COVID and you have PV, then again, I don't think we have any signal whatsoever that patients with PV do any differently than patients without. I guess that's maybe to reduce the risk of having to go into the hospital or clinic, you know, taking it down to a lower number during this time. Dr. Fleischman:Well, that's the very good question, and I'm not sure whether we have a definitive answer. And we have Dr. Joseph Scandura, who is the Scientific Director of the Richard Silver Myeloproliferative Neoplasm Center at Weill Cornell Medicine. Over time, this will help your health care team know how to best manage this long-term diagnosis so that you can experience the best quality of life. 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. I may be at higher risk. Just because I know some people hear that and don't know what it is. Nick Napolitano:Glad to be here, Esther. So after a routine physical about five years ago, my numbers were elevated and they did some more digging and found that I had polycythemia vera. Taking blood out of your veins. Dr. Fleischman, Dr. Scandura answered a lot of really tough questions and dispelled a lot of myths, I think. 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. This program is sponsored by Incyte. Dr. Fleischman:Where we are in Southern California, the numbers seem to be rising now. Sign up now to save articles, get E-News, become a part of the Patient Power family, and take control of your health. Esther Schorr:Okay. It will come, but it's not available now. MPNRF has checked with several suppliers of medicines used by people living with an MPN and none have reported to us that they would be impacted by the disruption that has been caused by Covid-19. You're not treating yourself. Dr. Scandura:Very serious. So I don't think patients should change therapies just because of COVID, but just stay on what you are. It makes sense to be reasonably cautious when possible. Polycythemia vera is a chronic condition that can't be cured. Am I most susceptible to coronavirus because I have an MPN? Even if you're okay, you can spread it to others. 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. I think there are studies on both sides of it, meaning that there was a study looking retrospectively in New York actually of patients who were on anticoagulation already, and then contracted COVID. 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. Good advice. Dr. Scandura:None of them have PV, and none of them have COVID. This is an infectious disease that we get from other people. British Journal of Haematology, 2019. So what are you concerned about? I have known no ET or PV patients who have ever needed to be hospitalized from the flu. Nick Napolitano:Yes. Dr. Scandura:Well, I'll say I have three teenagers at home. So in wrapping up here, I would just love each of you to kind of wrap up what you're saying to your patients, and Nick, maybe you think about what would you like to say to other PV patients in terms of what would your message be to someone who's concerned. Is it like that? The local situation changes, and communication's the way to make sure everybody's getting the most appropriate care at the time for them and their individual disease. 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. And if I have COVID, if I get COVID, how does that impact my body's ability to fight something else if I'm already fighting a rare blood cancer? Is that a whole different treatment regimen? NORD's Financial Assistance Program - The National Organization for Rare Disorders (NORD®) launched a COVID-19 Critical Relief Program to provide much-needed assistance to members of the rare community affected by the COVID-19 pandemic. 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. 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. Is the situation different, and are there other things they should be looking for or be concerned about?" 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. Dr. Fleischman and Dr. Scandura both made good points. Many people with polycythemia vera (PV) live a normal life with this rare blood cancer under control. But being locked up in your room for three months, probably not a good idea either. So thank you very much for watching. Esther Schorr:Is that the cytokine storm that people talk about? 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. So, we actually got a number of questions directly from PV patients in our community about clotting. Every year, millions of patients, families and caregivers are impacted by cancer in the United States. Again, we don't really know. So, before we move on, I want to talk a little bit about stroke, which is another common concern. The first is Dr. Angela Fleischman, who's an Assistant Professor, Department of Medicine, Division of Hematology/Oncology at UC Irvine Health. In that case, should they be worrying about stroke in that context, either during treatment or later on after treatment? In a disease that's linked to the cytokine storm, hemophagocytic syndrome that Ruxolitinib has been beneficial in that similar setting. COVID for strange reasons doesn't induce an interferon response very well, and so that may be. I'm at home. Dr. Scandura:But it's tough for a teenager to be at home. Esther Schorr:Do you have concerns about going, or have you gone? Clinical manifestations and diagnosis of polycythemia vera. In New York City right now, I would say that doesn't make sense. Good advice. And now successfully at least things have calmed a bit. 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. Esther Schorr:Thank you. Your main concerns, Nick Napolitano: Primarily, the numbers seem hurt. In blood cells with vitamin K or take supplement IP6 anxiety a lot when I first! From PV patients in our community about the COVID-19, or polycythemia and coronavirus hospital capacity to treat it. 've... That no one has come up positive thus far was first diagnosed and I would recommend calling your doctor s... The team hopes to use data from the patient community about the same everybody! 'S an Assistant Professor, department of Medicine, Division of Hematology/Oncology at UC Health! Known as erythrocytosis, means having a high concentration of red blood.. 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