Viruses are tricky, and sometimes they find ways to subvert or escape the immune system. On the one hand, we're having tons of fun. The first is Dr. Angela Fleischman, who's an Assistant Professor, Department of Medicine, Division of Hematology/Oncology at UC Irvine Health. Some people were shedding virus for a very long period of time. There isn't a single answer to that question, but certainly one worth discussing with your healthcare provider. 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. The rationale for using Ruxolitinib in the setting of cytokine storm is strong, but it's not proven. I mean, New York City, a month, six weeks ago, we were all going, "Oh, my goodness, what is going on?" They took care of each other. But it's kind of apocryphal stories in maybe 20 or so patients that we've had that we have good records on. Coronavirus and cancer. 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. If you have to, wear a mask. But what if you have arthritis?. There are a fairly sizable number of people who are probably low symptomatic to asymptomatic who can spread. The MPN research foundation will continue to monitor and keep you updated as best we can should anything change. As wonderful as I am, and my wife are, apparently we're not as wonderful as most of their friends. 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. But stay cautious and stay hopeful. Dr. Scandura:There are a number of large efforts to try to collect this information, and right now we don't have data to draw from to say, "Patients with PV have a worse or better outcome than those without." 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. I feel left out. 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. © Copyright 2021. 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. Some places you go, everybody's wearing masks, other places no one's wearing masks. Taking blood out of your veins. What Do MPN Patients Need to Know About COVID-19. So that's a difficult question. I know that that's a common one in the context of hospital capacity. 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. And the one thing we know is that transmission is preventable. Nick Napolitano:Yeah, I would say I hope you got the same as I did out of this call, which was hope. 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. 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. Esther Schorr:And we talked about briefly before the program that it really sounds like the kind of advice or concerns that people may have that you have to address really varies geographically based on what's happening with the pandemic itself and what the capacities are. But that's retrospective, so it may be flawed. Many patients have asked for COVID swabs or the antibodies, and no one has come up positive thus far. I had what’s considered a mild case, but even in its weakest form, this virus is brutal. Working with the kids home, and just kind of balancing all that, how does stress impact my symptoms possibly? Esther Schorr:Okay. Watch to hear their perspectives on the impact of the coronavirus outbreak on MPN care and recommended protective measures. Esther Schorr:Do you have concerns about going, or have you gone? Nick Napolitano:Yeah, so they're making it a priority depending on how your numbers are trending. 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. Your participation in this research survey is highly valuable to the MPN community. This isn't just PV patients, this is across all MPNs. So let's talk a little bit about stroke. Let's say, Dr. Scandura, you've treated some PV patients with COVID. It will come, but it's not available now. 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." Am I most susceptible to coronavirus because I have an MPN? Just because I know some people hear that and don't know what it is. There was nothing else going on except for the rare other. I would say apocryphally, it seems about the same. That's really not necessary to do here. In the spectrum of good to bad news, 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. At that point, I was trending up, and so I needed to come in, but there wasn't a problem getting a phlebotomy during that time. How's that for a mouthful? If you're on a medication, stick with it. So those are probably two of my primary concerns. Polycythemia Vera and Clotting: Am I High Risk For COVID-19? Good advice. Thank you, Dr. Scandura. I mean, you've got everybody at home, and you've been hunkered down. 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. 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. Dr. Scandura:So there's a large lag, both on the lead-in and the lead-out. Is the situation different, and are there other things they should be looking for or be concerned about?" Ruxolitinib shows promise in severe COVID-19. Dr. Fleischman:Yeah, that's a good way to put it, yeah. And so until that changes, unless we get new information, I would say you follow the same guidance that everybody else should follow. So thank you very much for watching. So if people are doing that, they're really doing all they can to reduce their risk in a way that we know will affect outcomes because you don't want to get COVID. Polycythemia is a condition that occurs when the bone marrow produces an abnormal and excessive amount of red blood cells and platelets in the blood. Click the link below to learn more and to apply. And we have Dr. Joseph Scandura, who is the Scientific Director of the Richard Silver Myeloproliferative Neoplasm Center at Weill Cornell Medicine. Polycythemia vera is a rare blood disorder in which there is an increase in all blood cells, particularly red blood cells. We've had people on different therapies. We at MPNRF have been fielding many questions from the patient community about the Covid-19, or Coronavirus, situation. I mean, can you talk a little bit about that? Esther Schorr:Okay. So all of a sudden my symptoms are heightened, so does that mean I'm progressing? Aren’t hospitals the worst place to be? Even if you're okay, you can spread it to others. The Mayo Clinic and Myeloproliferative Neoplasm Quality of Life Study Group are conducting an international research survey to investigate the experiences of MPN patients during the COVID-19 pandemic. The treatment should be directed by the severity of the illness. Coronavirus disease (COVID-19) has a wide spectrum of clinical manifestations. When there is an increased blood volume and viscosity (thickness), complications associated with this disease can occur. Battling coronavirus is an experience that will forever be etched in my mind. It's very good at reducing symptoms, mainly because it reduces these excesses of cytokines. 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. Boy, that's a mouthful. 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:Okay. A 72-year-old male Chinese Han patient presented to emergency department with sudden chest pain for 2 hours. Availability of medicines that people with MPN use But it's also stressful. ... Polycythemia vera (PV) is a bone marrow disease that leads to an abnormal increase in the number of blood cells. But it's definitely getting worse. MPN Research Foundation. That's supposed to inhibit iron content in the blood. In order to save an article you must be signed in as a member. Esther Schorr:One of our community asked, "Does being anemic put PV patients at greater risk of contracting COVID-19 or of having a worse outcome from it?". This can lead to strokes or tissue and organ damage. 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. It also can occur if your blood does not have enough liquid, or plasma. First, the number of admissions dropped. And so the reason why it wasn't a bigger catastrophe in New York is people did their job. Dr. Fleischman, Dr. Scandura answered a lot of really tough questions and dispelled a lot of myths, I think. Is it like that? And this is what we need to do across the country. 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. 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. 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. Are polycythemia vera (PV) patients at a higher risk during the coronavirus pandemic? 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. Patient Power - What Are the COVID-19 Risks for MPN Patients? Nick Napolitano:Primarily, the fact that my body is already fighting something. Count on us for updates on the coronavirus and guidance for cancer patients and family members. 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. Esther Schorr:Greetings from Southern California. 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? Esther Schorr:Okay. So, I tell you what. 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. Nick Napolitano:I received a phlebotomy in May, early May, so relatively still very active with COVID. It is produced by Patient Power and Patient Power is solely responsible for the content. At our center - University of Texas San Antonio Medical Center-, we are implementing protocols to screen people when they check-in for their visit for possible coronavirus symptoms and see them in specific rooms or locations in order to keep other individuals safe. I know at my own center that hospitalized patients because we were only admitting relatively sick people, so if there wasn't a pretty good chance you were going to end up on a ventilator, you weren't being admitted. Thank you for being here. I'm just reading into the question that came in. So it didn't seem to hurt them, it didn't seem to help them that they were on antiplatelet therapy or anticoagulation. And with a really heroic social experiment, if you will, the number of cases slowly slowed and then began to decline. The increase in blood cells makes your blood thicker. So one that came up is there any speculation that Pegasys might play a beneficial role for reducing clotting. 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. Scandura:It may be the other way around if their blood counts aren't under control. And yes, I have two kids, and living in this COVID time right now, it's a blessing and also a challenge. It usually develops slowly, and you might have it for years without knowing. The MPN Research Foundation has a single goal: to stimulate original research in pursuit of new treatments -- and eventually a cure -- for polycythemia vera,essential thrombocythemia and myelofibrosis, known collectively as myeloproliferative neoplasms (MPNs). But so far there's no sign that they're at any greater risk of complications from the disease. 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. The data to help answer the questions as to whether coronavirus is going to be a huge problem or more of a nuisance for most patients with MPN is just not there. Nick Napolitano:Yes. The one other question that came up is about a supplement and I have to plead ignorance of IP-6. UpToDate Accessed April 2020. , 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. Again, we don't really know. Some people with PV also have too many white blood cells and platelets in their blood. - Patient Power, Common questions about the new coronavirus outbreak - The American Cancer Society, 4 Things Cancer Patients need to know about Coronavirus - Leukemia & Lymphoma Society, Coronavirus: what cancer patients need to know - Fred Hutch Cancer Research Center, COVID-19: Advice for cancer patients, survivors, and caregivers - City of Hope, Viruses & blood cancer – what you need to know - Australia’s Leukaemia Foundation, Coronavirus and blood cancer - Bloodwise, UK’s blood cancer charity, Cancer and Coronavirus (COVID-19) - Macmillan Cancer Support. What Are the COVID-19 Risks for MPN Patients? British Journal of Haematology, 2019. Wear a mask doesn't help you that much, but it does help the community. Dr. Fleischman:From my perspective, yes. Madam A, a 72-year-old lady with polycythemia vera, ischemic stroke, hemorrhoids, diabetes mellitus, hypertension, and dyslipidemia … Dr. Scandura:We kept close tabs on our patients across the center, but what we've found is the patients who are positive run a spectrum of disease. Hand hygiene, “social distancing,” and staying away from those that have symptoms is the best idea regardless of your infection risk. In New York City right now, I would say that doesn't make sense. They're somewhat immunocompromised but should have a relatively intact immune system. I practice a lot. One study shows that anywhere from 2% to 14% of the time, polycythemia vera changes into AML within 10 years. 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. If you don't need to come in and do a CBC for a couple of months, let's not do it." 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. Is that a whole different treatment regimen? So what are you concerned about? Mine's pretty short compared to them too. The MPN research foundation will continue to monitor and keep you updated as best we can should anything change. 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. I did not have a problem with it. There's two things that work against us in COVID. 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. Any words of wisdom for other people in the country who are now facing what you saw in New York weeks ago? I'm at home. And I'm really excited about this event, so thanks for inviting me. Polycythaemia, also known as erythrocytosis, means having a high concentration of red blood cells in your blood. Things change, we get new information all the time. Nick Napolitano:Very simple: follow the rules. 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. Patients do not need to have a COVID-19 diagnosis and there are no income criteria to qualify. Continued Acute Myeloid Leukemia. Dr. Fleischman:Where we are in Southern California, the numbers seem to be rising now. And there's a lot of lagging things that happened. This organization has no editorial control. I would recommend calling your doctor’s office first. I would take every allowable precaution that your workplace (with the help of your physician) will allow you. And last but not least, we have Nick Napolitano, who is a PV patient, and an amazing advocate. While information is still coming in and what we all know continues to emerge, Dr. Scherber helpfully suggested that she could answer for the public some questions she has received from patients in her practice. Are PV patients at higher risk for getting COVID? 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 Symptoms. Can you comment on how they've done in general, and maybe that's true with you too, Dr. Fleischman, just in general? Is that right? But beyond that, I really don't have any other personal experience with our patient panel and COVID. 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. To the Editor.— Reading the important article by Drs. To receive our updates, register for our monthly email and newsletter by clicking here. So we're not increasing our circles geometrically beyond one level. If you need elective procedure, if you need certainly to come to see your oncologist, this is the time to do it. We let our kids, for instance, interact with their friends, a couple of friends who we know their parents are doing the same. In that case, should they be worrying about stroke in that context, either during treatment or later on after treatment? What would you say to the patients that are listening today? They also cause complications, such as blood clots, which can lead to a heart attack or stroke.Polycythemia vera isn't common. 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? 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. COVID for strange reasons doesn't induce an interferon response very well, and so that may be. I have a blood condition. The survey asks about how the COVID-19 outbreak has impacted your MPN care, both in bad and good ways, as well as your everyday life. Nice to see you, Dr. Fleischman. Can lead to strokes or tissue and organ damage about going, or coronavirus situation. But so far there 's a common one in the context of hospital capacity their treatment for swabs! 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