I know we did have one myelofibrosis patient with COVID who happened to be on Ruxolitinib and who did well. 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. But this is across the board. Affected people may also have excess white blood cells and platelets.Conditions where the body makes too many of these cells are known as myeloproliferative neoplasms. It is produced by Patient Power and Patient Power is solely responsible for the content. Esther Schorr:So let me take this in a little different direction because there were a number of questions from our community about actual medications that are being used for PV, and whether they would be beneficial or not beneficial. Learn about polycythemia causes, treatment, life expectancy, types, and more. 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. So, let's start with Dr. Scandura. So, Dr. Scandura, would PV patients necessarily have a worse outcome during their treatment for COVID? Same with Ruxolitinib, same with Hydrea, so there was no obvious signal there. 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. Dr. Fleischman:Yeah, I think really prevention is the key. 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. Anybody with a hematologic malignancy, their immune system is not quite "normal," however in the scheme of hematologic malignancies, a PV person would have a much more intact immune system compared to, say, somebody with MDS or with a leukemia. Working with the kids home, and just kind of balancing all that, how does stress impact my symptoms possibly? I'm not losing my ability to oxygenate myself." So, it hits both ends of the spectrum right now. Polycythemia (high red blood cell count) is a condition in which the body's red blood cells are elevated. So continue to stay cautious, but be hopeful that we're not at any greater risk as anyone else to get it. 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. 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. Count on us for updates on the coronavirus and guidance for cancer patients and family members. So you know, it's been concerning, to say the least. British Journal of Haematology, 2019. 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. 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. 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. These extra cells cause the blood to be thicker than normal, increasing the risk for blood … Learn more about causes, risk factors, screening and prevention, signs and symptoms, complications, diagnoses, treatments, and … As wonderful as I am, and my wife are, apparently we're not as wonderful as most of their friends. 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. Is the situation different, and are there other things they should be looking for or be concerned about?" 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? Esther Schorr:Okay. But so far there's no sign that they're at any greater risk of complications from the disease. This is the best time to come. 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. But as a PV patient, you also worry about progression. Hospitalized patients is a grayer area, and the American Society of Hematology has come out saying that that institutional guidelines, but there's no recommendation really one way or the other. Find a clinical trial. That's the one today. I've seen new symptoms since I've been home that have come to the forefront. 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. I mean, can you talk a little bit about that? Esther Schorr:Okay. If you don't need to come in and do a CBC for a couple of months, let's not do it." 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. And last but not least, we have Nick Napolitano, who is a PV patient, and an amazing advocate. And I'm Esther Schorr. Battling coronavirus is an experience that will forever be etched in my mind. This isn't just PV patients, this is across all MPNs. He has a longstanding history of hypertension, diabetes, hyperlipidemia, cigarette smoking, and polycythemia vera (PV) with JAK2 V617F mutation for 7 years. And so until that changes, unless we get new information, I would say you follow the same guidance that everybody else should follow. With polycythemia vera, the bone marrow makes too many red blood cells. 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 exact mode of transmission, it's clearly droplet-transmitted. Is there any benefit to taking that to reduce the number of phlebotomies? 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. The kids are in the house all the time. It makes sense to be reasonably cautious when possible. We at MPNRF have been fielding many questions from the patient community about the Covid-19, or Coronavirus, situation. The American Society of Hematology is trying to collect some of this information, and the European Leukemia Network is trying to collect this information. 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. Stay indoors. But there are large efforts that allow us to move away from apocryphal stories. Is that right? I have known no ET or PV patients who have ever needed to be hospitalized from the flu. In March, every other day we were doubling the number of cases, and that went on for over a month. Thank you, Dr. Fleischman. So we're not increasing our circles geometrically beyond one level. How's that for a mouthful? Large groups of teenagers and parties, probably not a good idea. 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. Dr. Fleischman:So that's a very good question. And as frustrating as it is, it takes time to collect the information and to analyze it to see. ... Polycythemia vera (PV) is a bone marrow disease that leads to an abnormal increase in the number of blood cells. Nick Napolitano:Primarily, the fact that my body is already fighting something. This makes the blood thicker and less able to travel through blood vessels and organs. the flu severe enough to be hospitalized and only one that I can think of that has passed from it. 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. There was nothing else going on except for the rare other. You're treating the community. 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. Nick Napolitano:Very simple: follow the rules. I know when you're first diagnosed, that's pretty scary. 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. It was unique to PV. Dr. Fleischman:I think those are all good questions, and it's really interesting that it's been proposed that two of the treatments for MPN had been proposed as potential therapies for COVID. There's two things that work against us in COVID. Esther Schorr:Is that a similar experience to what you've had, Dr. Fleischman, and you've seen? Polycythemia vera is a rare condition that affects the bone marrow, which is slow to progress and typically develops in later life. There was some question about whether foods high in Vitamin K should be avoided because of K's enhancement of blood clotting. One study shows that anywhere from 2% to 14% of the time, polycythemia vera changes into AML within 10 years. Common questions about the new coronavirus outbreak, 4 Things Cancer Patients need to know about Coronavirus, Coronavirus: what cancer patients need to know, COVID-19: Advice for cancer patients, survivors, and caregivers, Viruses & blood cancer – what you need to know. I did not have a problem with it. We at MPNRF have been fielding many questions from the patient community about the Covid-19, or Coronavirus, situation. First, the number of admissions dropped. Again, we don't really know. What Do MPN Patients Need to Know About COVID-19. Esther Schorr:Okay. But that's retrospective, so it may be flawed. In order to save an article you must be signed in as a member. Dr. Scandura:None of them have PV, and none of them have COVID. 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