I need to get a long title. Most cases that I have heard of suggest that underlying lung or heart disease seems to be the most problematic. If you need elective procedure, if you need certainly to come to see your oncologist, this is the time to do it. But what if you have arthritis?. ASH 2020 MPN Roundtable: Individualized Treatment Plans, What Genetic Markers Mean for Your MPN Care, Latest COVID-19 Information for MPN Patients. Two hematologist/oncologists on the LLS leadership team, and experts in the field of blood cancer, answer questions and concerns about coronavirus (COVID-19). These extra cells cause the blood to be thicker than normal, increasing the risk for blood … It seems like there's less of a panic factor now, I think, because it's not something new for us anymore, so there's just not this crisis mode feeling that everybody has. It's like a mouthful. COVID for strange reasons doesn't induce an interferon response very well, and so that may be. But being locked up in your room for three months, probably not a good idea either. Dr. Fleischman:From my perspective, yes. Nick Napolitano:Glad to be here, Esther. But where do PV patients sit in all of that? 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. There's what's going on in the world today around COVID and how that impacts me with a rare blood cancer. This is the best time to come. Is that a whole different treatment regimen? Dr. Fleischman:I mean, I have to say that no one from my personal patient panel has had COVID. A 72-year-old male Chinese Han patient presented to emergency department with sudden chest pain for 2 hours. 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. There are a fairly sizable number of people who are probably low symptomatic to asymptomatic who can spread. Polycythemia vera (PV) is a chronic myeloproliferative neoplasm characterized by an increase in morphologically normal red cells (its hallmark), but also white cells and platelets; e Ten to 30% of patients eventually develop myelofibrosis and marrow failure; acute leukemia occurs spontaneously in 1.0 to 2.5%. All Rights Reserved. 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. 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. Watch to hear their perspectives on the impact of the coronavirus outbreak on MPN care and recommended protective measures. The MPN research foundation will continue to monitor and keep you updated as best we can should anything change. 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, let's start with Dr. Scandura. 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? That's really not necessary to do here. 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. 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. But as a PV patient, you also worry about progression. 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. Find a clinical trial. Most of the patients we've kept out of the hospital, and so they've done okay. Are polycythemia vera (PV) patients at a higher risk during the coronavirus pandemic? So maybe, why don't we start with you, Nick? Nick Napolitano:Yeah, so they're making it a priority depending on how your numbers are trending. 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? The other concern is stress. Dr. Fleischman:Yeah, that's a good way to put it, yeah. 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. So we're not increasing our circles geometrically beyond one level. Esther Schorr:Great, thank you, Nick. The condition causes your blood to thicken. And there's a couple of small studies that show some minor benefit. In the spectrum of good to bad news, that's good news. I mean, you've got everybody at home, and you've been hunkered down. We've had people on different therapies. And one of the issues with COVID is there is, particularly in severe COVID, so this is not, "I was tested positive. 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. That's one of the main benefits in patients with myelofibrosis, who have symptoms. It’s natural to feel stress and anxiety during times of uncertainty. A PV person, even before COVID, is at higher risk of blood clotting, and potentially the added insult of COVID and it's the known risks of blood clotting and COVID, those could potentially be exaggerated in a PV patient. Esther Schorr:Okay. Thank you for being here. In March, every other day we were doubling the number of cases, and that went on for over a month. There was some question about whether foods high in Vitamin K should be avoided because of K's enhancement of blood clotting. - 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. 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. I think showing by example how people should be considerate of each other is probably key. 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. 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. But beyond that, I really don't have any other personal experience with our patient panel and COVID. Coronavirus and cancer. If you have to, wear a mask. I had what’s considered a mild case, but even in its weakest form, this virus is brutal. Overview & Definition of Coronavirus (COVID-19) What are the Symptoms of COVID-19; Review of Risk & Guidelines to Protect Yourself and Loved Ones from the Coronavirus; Key Questions to Ask Your Health Care Team about Your Treatment; Follow-Up Care & Quality-of-Life Concerns; Self-Care Coping Tips to Manage Stresses of Coronavirus And last but not least, we have Nick Napolitano, who is a PV patient, and an amazing advocate. One study shows that anywhere from 2% to 14% of the time, polycythemia vera changes into AML within 10 years. 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). Dr. Scandura:I would answer this with the best approach for patients with PV is to not get COVID. 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