I am just curious,before COVID did you wear a mask for CLL? This isn't a mask debate question. I am just curious.
Masking question: I am just curious,before COVID... - CLL Support
Masking question
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Gradyboy
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only when I went on an airplane. Today I were it always. Except when I am at home
we realize now that masking indoors (except at home of course) is here to stay for us (my husband is the one with CLL). confirmed (very diligently) by the physicians. It’s an acceptance …( before Covid no, not wearing masks. but then again, my husband’s ALC was still under the 30 mark back then )
NewdawnAdministrator
Never even thought of mask use prior to Covid and I was dx in 2012.
In truth I don’t use a mask now in my area and rarely see them in use even in medical situations. However, I can appreciate why some people continue to use this protection.
Newdawn
I didnt wear a mask before covid. In the uk we were told that they didnt stop covid until they decided that they did.I dont go in public places every day but I keep a mask in my bag or pocket. I cant go anywhere without checking the place out. Mostly I wear the mask indoors and avoid crowds. I go for coffee and choose a table away from others.
In the uk I cant remember masks being worn before covid. Anne uk
AussieNeilAdministrator
You've posted unlocked, so I don't want this post to turn into a mask debate discussion either, only to say that I am very disappointed that some in society decided to make mask wearing a divisive issue. We don't expect people who need other means of helping them function in society to go without obvious aids - such as glasses, hearing aids, crutches, wheelchairs, etc., that help them to do that, so why should mask wearing be any different?
My CLL was diagnosed after my GP referred me to a haematologist to find out why I became neutropenic; I had stage 4 neutropenia when I was diagnosed. My neutrophil count averaged 1.0 in the 11 years I was in watch and wait, so avoiding infections became an essential part of my everyday life. I began wearing masks in high risk environments after having gastro after an appointment with my CLL specialist, where I was very careful to avoid others in the waiting room. I visited the toilet, but was very careful to wash my hands and avoided the trap of touching the door handle with my washed hands. So I figured that I must have picked up the gastro bugs through breathing contaminated air.
Subsequently, I never became ill after mixing with crowds when I wore a mask, but ended up in hospital with febrile neutropenia one Christmas after stupidly braving Christmas grocery shopping without wearing a mask. I've travelled twice from Australia to Europe and back, with each trip involving up to 40 hours of mixing with others on public transport, in waiting lounges, queuing in close quarters for passport/customs, etc each way. My neutrophil count was varying between 0.4 and 0.6 during the first trip and between 1 and 2 on the second, supported by G-CSF injections. Prior to the pandemic, I just used properly fitted surgical/procedural masks. I wear FFP2 (PF95) masks now. So on this anecdotal personal evidence, it's worth wearing masks for both a better quality of life and longer life expectancy. I don't think I saw anyone else wearing a mask in my travels the UK, despite considerable time spent on trains.
Neil
It seems people in the uk think covid is over. Nobody comments though when I wear mine.I went out with a friend. The coffee area was separate from the food area. I explained and we sat away from others. I cant go anywhere without checking the place out.
I dont care what people think. It is worth remembering that toilet doors have germs. I try to use a paper towel to open the door. Anne uk
I was just curious if people with CLL wore them before COVID hit. Especially this group from so many different countries.
I didn’t wear a mask before Covid. I was diagnosed in 2017 and had my first treatment in 2018. In late 2018 or early 2019, I forget the exact timing, I transferred my care to Dana Farber. At one of my early appointments there I recall seeing a couple of patients in the Lymphoma/leukemia waiting room with masks on and I recall thinking isn’t that a little over the top? It’s funny what a pandemic will do to your thinking. I wish western culture were more accepting of masking like many Asian cultures but unfortunately that isn’t the case and I don’t see that changing unless a new and highly deadly pandemic occurs.
Good luck,
Mark
Pre-CLL, I wore a portable air sanitizer around my neck on airplanes, when I traveled extensively as a consultant, and turned off overhead airflow. I had a battery operated neck device that could cool me (as well as warm) if the plane seemed too hot.
After I got the CLL diagnosis early in 2011, I started wearing an N95 mask at all crowded public places like stores and offices during flu season. A number of people would ask me in oncology waiting rooms, why I was wearing one, and would often comment that they wished their loved one that they were there with, would wear one during flu season too. I went to restaurants or bars only during "off times" during flu season and didn't mask. I wore N95's on airplanes year round, post diagnosis. If I took trains or buses, I would wear them also.
I never wore a mask before Covid and I work at a large retail store. Now I continue to wear one at work everyday. We consistently wear our masks wherever we go and, quite frankly, we now feel "naked " without it on. I was diagnosed 5 years this November, am on W&W, and my husband was diagnosed with Myelofibrosis last year and is being treated.
No, I didn’t and was just thinking about this yesterday when I was out and about putting a mask on and off depending on how busy the shop etc was and hating every minute of it. I really dislike wearing masks, find them uncomfortable and that they get in the way. It’s not about Covid now, but the idea has become established that they protect us from picking infection up generally, yet pre Covid I didn’t think about it. But I hadn’t had any treatment then either. It makes sense logically to wear one in busy spaces/tubes etc, but I only wear the paper ones (unless flying) so maybe I shouldn’t bother 🤷🏻♀️
I didn’t wear a mask before Covid and had had serious respiratory infections before Covid - avian flu which nearly killed me 6yrs ago on one occasion. I think I’ve had 6 bouts of double pneumonia. I wore a mask if I was coming down with something. I was only following what I saw as sensible example after working for some time in Fukuoka City in Japan. I don’t tend to wear a mask now ( only for work & this is to prevent dust inhalation not disease). I would wear one if someone asked me to or required me to do so. I avoid ill people where possible and steer away from large crowded interior spaces. I think it is so important to encourage people to do what helps them to best cope with their situation and allow them to live the fullest life they can.
We. Never wore masks before COVID,but we do now.
yes I wear a mask and did so to a lesser degree before Covid during winter months. Wore a mask when travelling on planes. By doing so did find I got fewer colds which did seem more likely when I did not mask. I am in the UK which seems to be a place people don’t get and never did get mask wearing. When mask wearing was introduced you had quite a lot of anger in places and in my nearest shopping centre a few windows got broken by people who refused to wear masks . It is a personal choice but as a lot of viruses are airborne my personal choice is to mask 😊
I wore them on planes before Covid. I also wore them on trains when travelling in Japan in winter. But I was too self-conscious to wear them in the UK- that has changed now.
i often wore a mask while on flights - was dx in 2007. Now it's whenever I'm in an enclosed space or near others. I am in the US but sing in a Brit virtual choir and cannot believe the poor practices of singers in the UK who hang out after a concert, unmasked of course, for a selfie with their favorite professional choirister. It's like going up to a professional violin soloist and mauling their stradaverius. Are people in the UK even testing themselves? I see posts from fellow virtual choir member who, after an unmasked concert where they were singing, report a "bad cold". Mutations will keep coming as long as people are not more proactive in keeping well. I'm sorry Britain - very shocked in disappointed in your path.
Agree with you. I am in the UK no precautions here scary
I did not wear a mask prior to Covid (March 2020). During the 'Covid years' I wore a mask. Going to hospital I still wear a mask and actually get quite irritated by some that do not wear them as there are very clear notices requesting wearing at The Christie.
Outside the hospital I tend not to wear masks although I have one with me. In autumn 2021 I went to a concert at a local theatre, from memory I was one of maybe only half a dozen wearing a mask. I decided it was prudent as the theatre is Victorian so airflow not greatest proven by it always getting very hot.
Dont get me started on toilet doors, they are normally hung the wrong way round, opening in not out. If they opened out you could just push it with your foot. (jumps off soapbox)
best to all, rob
I always understood that public loo doors must openninwards so that if someone passing by, they didn’t get hit in the face as an occupier exited the booth. Similarly the main door couldn’t open into a public corridor for the same reason.
I rarely use a public loo if I can help it especially now. Having gone to boarding school - public loos hold no mystery & I prefer privacy 😊
There certainly are a few doors in public looks in the UK that open outwards, which is what got me into thinking about it. I was thinking more of the main door as it is after hand washing (one hopes).
I've followed a few people out of public loos that clearly have not washed their hands, which makes me cringe and a sticky door-handle makes me go back and re-wash (and grab a paper towel).
yeh…repulsive - I was on a ward near loo once, you could hear when the basin was turned on. I got a bit obsessed - 10% of patients did wash & go 😱😱😱😱
no
No. I was early stage W&W. Plus, I don't like masks. They ruin good conversation.
Yes. Always when in indoor public areas. It kept Covid at bay until a family member brought it into the house after attending a large conference. I don't want to volunteer for another three weeks like that, so we continue to mask with N95 masks
yes I wore a mask when I was neutropenic and went grocery shopping.
Yes, I started wearing masks on long haul after a visit to Japan. I purchased a pack in a corner shop there.
Pre COVID I only wore a mask when gardening as I got bad pneumonia from digging in soil with a trowel in 2018. I might be wrong about the cause of course. I still mask when travelling and in busy areas. I am usually the only one, but at least I don’t get filthy looks any more from fellow travellers. I hate being in meetings with a lot of people but I cannot bring myself to wear a mask in meetings and be such an oddity, so I sit nervously hoping no one has covid.
My specialist at MD Anderson encouraged me to wear a mask after my initial diagnosis. Also, I was "told" to get vaccinated against the flu, pneumonia, etc.. I didn't wear a mask until Covid.
To me, masking makes sense. Covid is a respiratory virus. Respiratory viruses are spread through coughing, sneezing, etc. Can you get it from a solid surface? Sure, but not as likely. Can you get it through the eyes? Yes, but not as likely either. So, the best way to reduce the probabilities of getting infected is to do the one thing that reduces the greatest/highest exposure risk; masking.
Anecdotal evidence? My wife is a first grade teacher. She still wears her N95 mask daily. Before Covid, EVERY SINGLE YEAR their school was devastated by the flu. Limping into winter break with a good percentage of the students out with the flu. Especially my wife's group. First graders are grubby.. LOL. Christmas 2019 was especially bad. 3 private school in our city had to shutdown in order to sanitize and disinfect the schools due to the flu being so bad. Then came Covid.
When they returned to the classroom, which was August 2020 (she teaches at a private school), they wore a mask the entire school year. Students, teachers, etc. For the first time in over 27 years in the classroom, there was NO flu outbreak. No Covid outbreaks. No colds. Nothing. Yes, she made hand cleaning a priority, but she has done this for years due to my situation. Lots of teachers got Covid that refused to mask and acted as if Covid was a joke. Well, until they lost 2 teachers in about 4 weeks to Covid.
When the virus mutated and started infecting children, they continued to wear mask and still, no huge outbreaks. Some kids got sick, yes, but it was normally tracked to a sick family member, normally being an older sibling bringing it home.
The next school year (21-22) masks were required at first due to high Covid circulation in the area. Then they dropped the requirement in October due to pressure from parents. Like clockwork, Covid ran through the school and the staff. Flu and colds were back, and worse than ever. Thankfully, most of the parents were "pretty good" at keeping sick kids at home, but there were those few...
At any rate, my wife has never gotten Covid and has been around A LOT OF IT. She masks and is vaccinated. My daughter is an PICU RN, and avoided Covid until SHE started going out without a mask. She has gone back to wearing a mask. They do it to protect me, and I appreciate them. All of my 4 children have had Covid. 3 of the 4 multiple times.
I have not had it, and hopefully never will..
Never before. Stopped wearing masks last year.
Yes I have lymphoid tissue from a botched tonsillectomy. I am therefore very susceptible to colds. Once I was diagnosed my physician niece suggested I try and avoid germs. I found masking helped avoid colds even when my husband got colds I didn’t. I also was busy washing hands and surfaces.
Never before COVID. Now still wear mask all the time. So far COVID naïve with 4 Pfizer vaccines.
I was diagnosed with CLL/SLL on March 5, 2020, a week before the Covid shutdown. I wore a mask everywhere thereafter but this coincides with the pandemic.
No, I never wore a mask before Covid. I continue to mask up in airports, on airplanes and in crowded indoor spaces. We went to a concert this weekend. There were about 200 in the audience. Roughly 10% were wearing masks. I would not have attended without wearing a mask.
Hello Gradyboy
I would suggest wearing a mask anywhere you feel threatened by respiratory infections. 50% of the CLL patients die from pneumonia brought on by things like flu and etc. I wear my mask to any hospital, public travel or crowd events. This I was doing before anyone ever heard of covid. Blessings.
No, I didn't mask before Covid. In the 6 months before the pandemic started I was in treatment with FCR. I caught a cold twice in that period, and another early post-treatment before masking routinely.
In 3 years of masking through Covid: I caught a RSV after going unmasked for 20 minutes in an almost deserted building, but no other infections before or since. My lymphocyte count only recently topped 1 X 10^9 and immunoglobulins remain very low.
Hey Gradyboy
I'll preface this by saying that most people would not agree with my actions, and I'm not one who is against using masks or feel they infringe upon people's rights when mandated. I just simply hate masks, because I have difficulty breathing when moving quickly even without masks. With masks after a bit of a while I find myself feeling like I'm suffocating.
I never wore a mask before Covid, and frankly have only worn a mask when forced to do so since Covid. I've taken large number of plane flights, both in and out of the Country, stayed in hotels regularly on trips, eat in restaurants non stop since covid, and even spend weekends at Disney theme parks. Call me lucky, but I'm still walking, talking, and chewing gum. I've had Covid twice, and not that long ago had my fifth Covid Vaccine shot. The first time I had Covid I got the Monoclonal Antibody Infusion, and I had it a time before that when exposed but had not turned positive. The second time, quite recently, I got a Rx for Paxlovid and it knocked it out in five days. All three of my immune numbers have been below the low of normal for about a year now, and I'm exactly five years on W&W.
I'm not saying all of this to try to convince any of us to go without masks; just telling the truth about my history with them and my behavior. Maybe I'm the luckiest guy alive; who knows.
Carl
I always have one available but don't use it very often. I want my body to be able to fight off things. It worries me if you over protect yourself your immune system is going to be destroyed. I completely understand why people chose to always wear one, I'm just chose for myself to only wear it if I feel it's a high risk situation. I have had a couple close exposures to COVID but have not gotten it YET.
Hello friend, prior to Covid, I wore a mask on planes, buses, in church and theaters, although I tried to sit in the back row so no one would be behind me and cough on me. We would buy theater tickets in the back row which allowed me to relax and enjoy the show. My propensity to contract bronchitis was, and is, foremost in my mind and wearing a mask gives me a bit of peace of mine. I had Covid in January and came through it unscathed.
This is my plan going forward. I wish you well-stay strong. Take care. Carolyn
I just had an appointment at my CLL specialists office last week, where the mask mandate has recently been lifted. About half the people there are still masking. The NP I saw was wearing one, and commented to me that she was happy to see I was still wearing an N95.
Yes. Like Neil, I wore masks in grocery stores and continue to do so. Even after O and V commenced, I am still neutropenic.
Yes
at times I did. I kept a cache of them at the office for those who I worked closely with when they came to work with the flu. They were very understanding.
My husband has CLL (I don't) and I wore a mask whenever flying. Then I also wore one in certain situations during a bad flu season. Always an N95. I didn't want to bring an infection home to him.
yes, in winter in nyc subway.
Yes on public transport. Not in shops, though I have a mask available if I feel it's too crowded or there's poor ventilation. I have begun singing with my choir again because I missed it and it's important for my well being. Everyone instinctively leaves a space between themself and the next person in the row and staggers with the row in front . I've also noticed that there's been no coughing in rehearsals, which was not the case pre-Covid.! So in this scenario I think people are being more considerate of others.
Pre Covid I never wore a mask. In my early nursing days (about 100 years ago) we were told that normal exposure to bugs strengthened our immune systems. I now wear a mask in hospitals and enclosed places, because apart from the CLL angle my immune system has never encountered Covid. I've always been a compulsive hand washer tho.
I never wore a mask before covid. I still wear a mask indoors. I am still deciding if I should use my condo's indoor pool if no one else is there. I don't think wearing a N95 mask and going in the pool go together
Yes, I wore a mask in public years before covid.
When my ALC was very high and my platelets were low, I was still traveling frequently and would wear them on planes and in airports and public transit because otherwise I had a tendency toward catching bacterial infections (strep throat and ear infections mostly), but I did not wear them elsewhere. I'm now in full remission (MRD-) and stopped wearing one when my country stopped requiring them two months ago.
My CLL specialist said infections are down among CLL patients since the wearing of masks began. She said it’s proof enough that they work but also that many infections we get have been unnecessary. I’m new to CLL but I’ll always wear a mask in crowded indoor spaces. I want to reduce the time I spend sick with colds, flu, sinus and pneumonia, covid. Life is too short and infections too common in the CLL group to waste time feeling sick fighting yet another infection……
No, but after the arrival of COVID-19, we did start wearing them, because I'm so immune compromised.
No mask before COVID. I wear one 80% of the time now when not at home. The other 20% is when I am well distanced from others and/or with a small number of people who I know and are not showing any signs of illness at the time. I realize that is not foolproof but that's how I weigh the risk.
my CLL specialist said that prior to Covid his practice did not recommend wearing masks
I wear one in crowded places and mostly avoid having to be in crowds. I also carry hand sanitizer and use it. I just don’t want to Be ill if I can avoid it and for past 4 years I’ve avoided colds , flu etc. That’s proof enough for me!
I never wore a mask before COVID, as I was many years into remission. Nowadays, I always wear one when in shops or enclosed environments with others.
Our small family group of 6 contains 3 people who are 'vulnerable' for various reasons; all have been super careful and been COVID-free until recently, when my daughter (a vet) caught it at work after - for once - removing her mask to drink a cup of tea. Unfortunately, she also passed it on to her partner, who is diabetic - both are in their late 30s, so young-ish and strong-ish. Although our daughter recovered in a few days, her partner is still tired and taking much longer to recover. Diabetics are vulnerable.
So, I reckon it's fine for those without conditions to live more or less normally, but for those who have vulnerabilities it still seems like a good idea to be cautious - but everyone must choose for themselves.
I wore a mask before COVID after I became neutropenic from FCR. My doctor suggested it until my blood counts recovered. I ended up wearing a mask all the way to Hawaii and back on planes right after FCR. That was not fun!
Chris
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