LUNGevityKristin Posted March 3, 2020 Share Posted March 3, 2020 UPDATE 6/30: With many US states seeing a rapid escalation in COVID-19 cases and hospitalizations, we answer: How can you protect yourself? Get important updates on antibody response & immunity, COVID-19 outcomes for cancer patients, and guidance on public health precautions from this bi-weekly joint statement.http://ow.ly/gElQ50Am8QB UPDATE 6/15: States are in different phases of reopening and shelter-in-place restrictions and lockdown have been eased in almost every state in the USA. With restrictions being lifted despite the upsurge in new cases, this week’s update answers a critical question: Is it safe to return to routine activities for members of the lung cancer community? https://lungevity.org/for-patients-caregivers/covid-19-and-lung-cancer/weekly-updates-on-coronavirus-covid-19-from-lung UPDATE 5/11: Advice on navigating #COVID19 for #lungcancer patients and their loved ones. https://lungevity.org/for-patients-caregivers/covid-19-and-lung-cancer/conversations-with-healthcare-experts/covid-19-9?fbclid=IwAR1xKZYR91FzlSF1X3QafiDPiJv475SuY9TyPbMIqjIQvXYtDVedYH_MNI8 UPDATE 5/4: Information overload and what you need to know: https://lungevity.org/for-patients-caregivers/covid-19-and-lung-cancer/weekly-updates-on-coronavirus-covid-19-from-lung UPDATE: 4/20: bit.ly/33LE0zp In this week’s update, we address the following important topics: Role of telehealth in the era of COVID-19 What is telehealth? How is the use of telehealth changing during the COVID-19 pandemic? What are some of the barriers to broad uptake of telehealth during the current crisis? How do I know if I am eligible to obtain telehealth services? Impact of COVID-19 on lung cancer clinical trials How is the FDA allowing the use of telehealth for lung cancer clinical trials? If a patient is receiving their drug through a pharmacy at the clinical trial site, can they now receive the drug through home delivery without having to change the protocol? If a patient is receiving a drug given through infusion, can they now receive the clinical trial treatment through home infusion? UPDATE: 4/13: If I had COVID-19 and have now recovered, will I become immune to SARS-CoV-2? Can I find out if I was naturally infected with SARS-CoV-2, the virus that causes COVID-19, and have developed immunity? Read the latest update here: https://bit.ly/33LE0zp #covid19lungcancer UPDATE 4/6: Are you wondering: "Is social distancing working?" "Do I continue to social distance?" "Do I leave my city to go to someplace safe --- such as a rural area?" "Should I use homemade masks to protect myself?" "Can I travel within the United States?" Find answers to these important questions in this week’s update from lung cancer advocacy organizations -> bit.ly/33LE0zp UPDATE: 3/30 https://lungevity.org/for-patients-caregivers/covid-19-and-lung-cancer/updated-joint-statement-on-coronavirus-covid-19?fbclid=IwAR1v4NLNOxMSpm_etEYLAFfgqPopzSb5VksSm2wj6ZWdDXS1w1nIuP9gc3Q UPDATE: 3/26 LUNGevity now has an entire section dedicated to COVID-19 on the website. It is continuously being updated with video interviews, reports and new information. The website is also available in Spanish. https://lungevity.org/for-patients-caregivers/covid-19-and-lung-cancer Please check frequently for new information. 3/16 UPDATE Social Distancing and "Flattening the Curve" lungevity.org/coronavirus -------------------------------------------------------------------------------------------------- 3/9/2020 UPDATE We are working closely with other lung cancer advocacy groups to monitor the latest developments related to the coronavirus outbreak. Here, you'll find helpful information on the facts about COVID-19, symptoms, testing, information about populations at risk of serious infection, and what you should do to protect yourself -> http://bit.ly/39Ce5Mx -------------------------------------------------------------------------------------------------- We understand and appreciate the severity of the new coronavirus epidemic (also known as COVID-19) that’s spreading globally. As advocacy organizations dedicated to serving the needs of lung cancer patients, all of us are closely monitoring the latest developments related to the outbreak caused by the novel coronavirus, SARS-CoV-2, and the resulting disease, COVID-19. Read the full joint statement on coronavirus COVID-19 from GO2 Foundation for Lung Cancer, LUNGevity Foundation, LCFA: Lung Cancer Foundation of America, and Lung Cancer Research Foundation: Here, you'll find helpful resources, information, and tips for keeping yourself healthy -> www.LUNGevity.org/COVID-19 Link to comment Share on other sites More sharing options...
Rower Michelle Posted March 4, 2020 Share Posted March 4, 2020 Kristin, Very useful memo, thank you for posting! I sent it to the American Lung Association as I was cautiously bailing on the LungForce Advocacy Day scheduled in WDC later this month. I’m not panicking however being on an airplane in the midst of all this hysteria just doesn’t make sense for me. I suspect the event will be canceled anyway. Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted March 9, 2020 Author Share Posted March 9, 2020 Updated 3/9/2020 We are working closely with other lung cancer advocacy groups to monitor the latest developments related to the coronavirus outbreak. Here, you'll find helpful information on the facts about COVID-19, symptoms, testing, information about populations at risk of serious infection, and what you should do to protect yourself -> http://bit.ly/39Ce5Mx Link to comment Share on other sites More sharing options...
ColleenRae Posted March 10, 2020 Share Posted March 10, 2020 Thank you Kristin. This was detailed and thorough - although not very uplifting! I'm almost 62. I had a lobectomy, no chemo or radiation about 17 months ago. I have another suspicious nodule LUL that is being watched at my post-surgical CT's. Suspected slow-growing adenocarcinoma per the radiologist (surgeon's not so sure). Mild to moderate emphysema (at least that's what my pulmonary function test said after surgery - my oncologist and pulmonologist have never discussed this with me - I just read it in my test results)... So... I am concerned as I am in 3 of the categories listed as being high risk. To top matters off: I live just north of Seattle. The first COVID-19 case was in the next county; Seattle / King County is just below that. So a little too close for comfort and very likely that this is spreading in our county. It has been heartbreaking to see the impact this virus has had on the nursing home where so many of the patients became infected and have passed. I haven't gone anywhere in the car and only on walks in the past 9 days. Had to get groceries today - all out of healthy fresh food - so ordered online and drove to the store to pick up in the parking lot, so at least I did not have to go in the store. Much of what we ordered was not available; sold out of the store. But even getting the groceries in the parking lot made me nervous! My son decided on 02/27 that he was not going back to his college classes as he is concerned - not about his own risk, but that he'll bring the virus home to me (he still lives at home with me). So he's contacted his professors and they are allowing him to work at home, but one wants him to come back to the school for the quarter final exam. He's hoping they'll close the college down like they are elsewhere so he won't have to make that decision. He is trying to register for online classes only for spring quarter, but he's close to graduating and can't find what he needs. So, this is disrupting his life, too, but I am grateful to him for his concern. My oncologist is in Seattle. I am scheduled to go there for a follow-up CT the first week of April and see my Dr. right after. It helps to get the results right away like that. I was going to drive down to Seattle and stay the night, but I cancelled those plans. I've decided to stay local and get my CT in my own city. My CT is scheduled for this Friday (the 13th...ugh!). I can't see the pulmonologist to discuss the results until the end of April though, so it will be a long long wait. I don't think my oncologist / surgeon will be pleased, but I just don't want to drive down to Seattle in a few weeks the way things are going. I haven't had a CT since last August (my surgeon asked me to "trust him" and wait approximately 8 mos for my next CT saying the nodule of concern is very small...). I debated whether waiting longer for the CT - maybe changing the Seattle appointment for a later date - but who knows what the situation will be like then? I just want to know what the CT shows. My fear is that this nodule has now grown and we'll be in the midst of this virus pandemic and I won't be able (or comfortable with) doing anything if this is another cancerous tumor. Of course I'm hoping it isn't another cancerous tumor, but if it is... the best I can do right now I suppose is to hope that it is still growing small and that it can wait until, hopefully, this virus subsides. I honestly can't decide anymore if I am more afraid of cancer or the virus. I've even had dark thoughts of "Well, if the CT shows cancer has spread or the tumor is now clearly cancer and grown, maybe getting this virus would be a blessing". Yeah - what a horrible way to think. I'm even nervous about going for the CT this Friday and getting exposed by someone there who had the virus. It seems like there is no easy or winning solution here. I just keep hoping / wondering that if I really keep myself isolated for as long as possible, maybe - just maybe - I'll be able to avoid this virus. At the same time, I wish there was something I could do for others in this situation (former public health employee), but I realize that's not going to happen. I'm definitely not ready to say goodbye to my son or to leave him alone to deal with this. I don't want this to happen to anyone. Just having a hard time with this. Link to comment Share on other sites More sharing options...
Rower Michelle Posted March 10, 2020 Share Posted March 10, 2020 Hi CollenRae You are not alone. I’m here in KC where we only have “one” documented case and at the same time the test kits from then Fed don’t arrive for another week while 80 people are being monitored by the County Health Department. I began my self isolation plan on Saturday. On Friday I went to the pharmacy to refill meds & pick up some other things. I forgot to lock the car, was only inside for a few minutes. Well that will never happen again. Someone broke into the car and stole a tub of Clorox wipes. We put it in there 18 months ago when I was diagnosed. Nothing else was taken. I make a habit not to park near anyone. We live in a very affluent county, unbelievable. My husband thought I was over reacting until I read the CDC guidelines for self isolation which were quietly updated on Friday evening: https://www.cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-complications.html I rescheduled my Integrated Oncology appointment in Iowa City, it was a routine appointment, nothing urgent. I’ve postponed yoga and Tai Chi classes too. I can do that at home. I will discontinue the LiveStrong program at the YMCA, elect for walks and bike rides, I also have all kinds of equipment collecting dust in the basement. Is this overkill, not in my opinion. The first case in St Louis a family broke the voluntary quarantine to attend a school dance. Poor judgment is an understatement. I think the only thing we can do is stay home as much as possible, try to cope as best we can. This is hard for me too. At least we’re in good company together. Michelle Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted March 10, 2020 Author Share Posted March 10, 2020 It sounds like you are both taking all of the necessary precautions. Avoiding the store by ordering and having your items brought to your car is a great idea. So is working out from home. I'm sure the doctors will understand wanting to do the CT closer to home as well. Feel free to keep posting anxieties and ideas on how to keep more isolated to avoid getting sick with Covid-19, the flu, or anything virus. We are all here to support each other. Link to comment Share on other sites More sharing options...
ColleenRae Posted March 10, 2020 Share Posted March 10, 2020 2 hours ago, Rower Michelle said: At least we’re in good company together. Indeed, we are in good company, Michelle 😊 Thank goodness for the Internet, Netflix and cyber companionship! Thanks for your thoughts and sharing what precautions you are taking. That helps a lot. That's really rotten about your Clorox wipes getting stolen. "They" say the wipes and hand sanitizer are gold now! I was only able to buy a couple so we decided we'll save the containers and make our own wipes if need be with paper towels and bleach solution. I could not find any hand sanitizer either to stock up on. We have one small bottle we keep in the car that was in view - I had my son put it in the glove compartment thinking it might be worth something to someone now. Your experience justified my thoughts! I hope those testing kits arrive soon. That has been a huge problem. I'm glad you are being pro-active. Thank you for not making me feel like I'm overly worried. I'll think of you as I take my walk today and pop in a yoga dvd! We recently sold our couch and were going to find a smaller one... I think we should leave the living room with just a couple of chairs and turn it into a gym instead. A treadmill would be really nice to have right now! Have a good day Michelle! Colleen Link to comment Share on other sites More sharing options...
Susan Cornett Posted March 11, 2020 Share Posted March 11, 2020 I was supposed to drive to Tulsa on Thursday to attend a funeral but don't believe it's a good idea. One of the attendees will have just stepped off of a plan from NYC. I'm also planning to work from home starting tomorrow afternoon. We have one presumed positive case in Tarrant County but I just don't want to risk it. As if having lung cancer wasn't enough, I also have asthma. So my tired 1.5 lungs and I will stay home for a bit. Link to comment Share on other sites More sharing options...
ColleenRae Posted March 11, 2020 Share Posted March 11, 2020 1 hour ago, Susan Cornett said: I was supposed to drive to Tulsa on Thursday to attend a funeral but don't believe it's a good idea. One of the attendees will have just stepped off of a plan from NYC. I'm also planning to work from home starting tomorrow afternoon. We have one presumed positive case in Tarrant County but I just don't want to risk it. As if having lung cancer wasn't enough, I also have asthma. So my tired 1.5 lungs and I will stay home for a bit. I'm glad you are able to work from home! That is a blessing! Personally, I think it's a good idea to stay home and not go to the funeral (although I understand that might be really difficult emotionally). Seeing how this virus is spreading in WA state (our county just got their first confirmed test today) - and how we can't "see" it - I think it's wise to be cautious. I'm sure it is a concern having asthma as well... You just take care of yourself, Susan... If we get lonely, we can all congregate here for social hour! Link to comment Share on other sites More sharing options...
TJM Posted March 11, 2020 Share Posted March 11, 2020 Good luck to all of you. I sure dont see how it can be contained now. If I wasn't doing Chemo I'd almost rather catch it now and hope I got a mild case. But now I'm on Chemo I need to miss it over the next 3 months. So our house is in containment mode..all hands on deck. Best of luck to everyone and I think you are smart being prepared Tom Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted March 13, 2020 Author Share Posted March 13, 2020 Just bumping this up for anyone who needs it... Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted March 13, 2020 Author Share Posted March 13, 2020 Some more FAQs: https://bit.ly/2IMwDxU Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted March 16, 2020 Author Share Posted March 16, 2020 Updated 3/16 More questions answered and "flattening the curve." http://lungevity.org/coronavirus Link to comment Share on other sites More sharing options...
ColleenRae Posted March 16, 2020 Share Posted March 16, 2020 Thank you Kristin... The information / lungevity.org coronavirus link is excellent; full of great information. Much more detailed and helpful than anything else I've read so far. I haven't heard one thing from my oncologist's clinic or the hospital they are associated with (in Seattle), so this info has been very helpful in educating myself. Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted March 17, 2020 Author Share Posted March 17, 2020 LUNGevity's Vice President of Research, Upal Basu Roy, MPH, PhD, spoke on March 16 with Zosia Piotrowska, MD, MHS, a lung cancer oncologist and researcher at Massachusetts General Hospital. They discussed general facts about COVID-19 and concerns and advice specific to people with lung cancer. Watch these four short videos to learn the facts. https://bit.ly/3d3zRuW Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted March 26, 2020 Author Share Posted March 26, 2020 We asked Kristin Higgins, MD, from Emory University in Atlanta, to answer questions that are most relevant to the lung cancer community regarding coronavirus and COVID-19 from a radiation oncologist perspective. Below are the questions addressed in the accompanying video: As a radiation oncologist, what are the top five things you would tell a lung cancer patient about COVID-19? I am in the middle of my radiation therapy. I have finished seven cycles for my stage III. If I stop now, what will happen? I was supposed to start SRS for my brain mets - can it wait? I am in the middle of SRS for my brain mets - should I stop therapy? I finished radiation therapy last year - are my lungs now healthy enough to withstand COVID-19? I am a small cell lung cancer patient on a clinical trial of radiation and immunotherapy. Should I stop the trial? Will my cancer grow if I stop the trial? This is an incredibly stressful and isolating time for the lung cancer community. Any advice on how to manage stress and anxiety? What is your message of hope for the community? WATCH HERE: https://lungevity.org/for-patients-caregivers/covid-19-and-lung-cancer/covid-19-conversations-with-experts/covid-19 Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted March 30, 2020 Author Share Posted March 30, 2020 Update for 3/30 https://lungevity.org/for-patients-caregivers/covid-19-and-lung-cancer/updated-joint-statement-on-coronavirus-covid-19?fbclid=IwAR1v4NLNOxMSpm_etEYLAFfgqPopzSb5VksSm2wj6ZWdDXS1w1nIuP9gc3Q Link to comment Share on other sites More sharing options...
Tom Galli Posted March 31, 2020 Share Posted March 31, 2020 Good job Kristin! Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted March 31, 2020 Author Share Posted March 31, 2020 Announced today, the Breathe Easier Emergency Fund will give a one time $500 financial support to those who qualify. See this post for more information: https://forums.lungevity.org/topic/46871-breathe-easier-emergency-fund-how-to-apply/ Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted April 1, 2020 Author Share Posted April 1, 2020 Listen to Dr. Winn’s message of unity for the community and learn about special COVID-19 concerns for lung cancer patients. Watch the video here: https://bit.ly/2RiCY9h Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted April 6, 2020 Author Share Posted April 6, 2020 Latest update: Are you wondering: "Is social distancing working?" "Do I continue to social distance?" "Do I leave my city to go to someplace safe --- such as a rural area?" "Should I use homemade masks to protect myself?" "Can I travel within the United States?" Find answers to these important questions in this week’s update from lung cancer advocacy organizations -> bit.ly/33LE0zp Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted April 7, 2020 Share Posted April 7, 2020 My 2 cents worth: Social distancing is definitely working. I use 10+ feet not 6 and we should continue until widespread testing is available. Here in Tennessee, there are some drive through testing but only if you answer specific questions. This is NOT widespread testing! I'm assuming there are still not enough tests. Actually, we are really practicing social isolation which sucks. My wife's family was coming over on Easter so that she could watch her little niece hunt eggs from the deck. I was not for this but we haven't had any visual contact with family. I agreed but only if they came in the house through a specific door and only to use the bathroom. This ain't happening now! Her nephew had someone at work come down with the virus. Going to a rural area is a personal choice but a lot of states here in the south are requiring 14 days of self quarantine so what's the point. This probably answers U.S. travel. I bought a box of hospital masks when my wife was dx back in January so we don't need homemade ones right now. My wife wears 1 but I don't. I probably should in case I have the virus; although i have extremely minimal contact with anyone. I go to the store every 2 weeks and late at night when no ones around. Personally i think we are screwed unless we can manage not to get the virus until a vaccine is available. 1 year plus of social distancing/isolation until a vaccine is available... that's just awful. Stay safe everyone ... Steve Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted April 7, 2020 Author Share Posted April 7, 2020 Steve, you are correct! Social distancing is working. I'm sorry about the cancelled Easter plans. This is the first holiday we won't spend with any parents/grandparents and siblings. It definitely feels strange (and sad) but other than passing neighbors walking in our neighborhood at a safe distance, we have been home since mid March. I think it will be especially difficult to keep people from gathering this weekend but if we can hang in there for the next few weeks, hopefully that will make a big difference. Masks are the biggest change this week. There is a tutorial in this week's update with an old t-shirt and rubber bands in case anyone needs it. Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted April 13, 2020 Author Share Posted April 13, 2020 The latest update answers these questions and more: If I had COVID-19 and have now recovered, will I become immune to SARS-CoV-2? Can I find out if I was naturally infected with SARS-CoV-2, the virus that causes COVID-19, and have developed immunity? https://bit.ly/33LE0zp Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted April 17, 2020 Author Share Posted April 17, 2020 In our latest #COVID19 Q&A session, get a thoracic surgeon’s perspective on what the #LungCancer community needs to know. Join Jessica Donington, MD, of UChicago Medicine for answers on scheduling treatment, dealing with anxiety, and more -> https://bit.ly/2wLVn78 Link to comment Share on other sites More sharing options...
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