My wife has cll diagnosed in June of 2012. She is currently on Venclexta. My question I am sure has been discussed before. She goes in frequently for some infusions but mostly just taking the pill. The question is that none of the medical support staff wear masks. We always do for almost every indoor event such as stores, church, etc. Is there a consensus at this time among members as to the continued use of masks. There is the covid uptick lately but we have never stopped using the masks since 2020. Thank you. .
Wearing a mask!: My wife has cll diagnosed in... - CLL Support
Wearing a mask!
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Ecalv
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HiI have been on O & V since March of this year. Just went in for my final infusion on 8/10/23. I did notice at the infusion center that there was an absence of masks.
So sitting in the infusion chair after looking around at the lack of masks. I took mine off as well. I felt comfortable doing so as there is plenty of space between infusion booths.
I do not wear a mask when I go out. But I also stay away from congested areas indoors. I started going to Church again, but I sit with my wife in the balcony where there it is more roomy. More air open space is my friend. I will not sit sardene packed in anywhere. As it is just too risky in my eyes.
I focus more on what I touch. I carry a small bottle of hand sanitizer with me. If I hand shake, touch foreign objects. I don't touch my face until I sanitize. Seems to me, what we touch is more risky than uncrowded air.
That is what I do and I have stayed healthy. No colds, flue etc.
If I go for coffee I glance around and choose a table away from other people. Wherever I go I dont sit close to others. The infusion chairs are well spaced out when I have ivig. I dont think I will stop checking places out.If covid numbers go up or another strain causes me to worry, then I will wear a mask. I always have a mask with me. Anne uk
I kind of doubt there is a “consensus” view on masks among immunocompromised people these days. It’s actually a two pronged question. 1) Should those of us with cll wear masks? 2) Should our healthcare providers wear masks? Here is my take:
1) Should people with cll still wear masks? My take at this point is “yes” if you feel you need to and “no” if you do not. For me personally, thus far with my cll I have not been prone to a lot of infections, so I choose to no longer wear masks unless I am in places where they are required. I if was prone to infections, or had very low neutrophils as I have had sometimes, I would be more likely to mask. I might also limit my social interactions involving groups of people. Everyone’s needs to be in their comfort zone and not feel pressured to not wear or wear a mask. I ignore the politics of masking on either side, and just do what I think is best for me. I respect other people’s choices.
2) Should our providers wear masks? I tend to think that the best practice is that doctors and staff who deal with immunocompromised people should mask. But I have completely accepted that mask wearing is no longer the practice in many medical settings. I live in a rural area of Louisiana where masks have never been largely accepted. They did wear them at my local cancer center, as required by the hospital system. Once the mandate stopped, so did the masking. I notice that about half of the patients still mask in the cancer waiting room and about half do not. It is what it is, I kind of keep my distance from people anyway as I can.
When I go to MD Andersen, on the other hand, they still require masking. I wonder if that is permanent. It is a cancer center and masking has become routine, so it feels a lot less political there and a lot more generally accepted by visitors, patients and staff. I think covid has raised at least some awareness in the general population of how people with cancer generally need to take more precautions.
In summary, I think in most places it’s a personal choice to mask or not. Trying to get others to mask, or worrying that they will not, is probably a waste of energy.
A thoughtful reply that reflects where I happen to also be at the moment. I haven’t thought too much about Covid until today. My kid came home from summer camp and there were a couple of cases. Now the sneezing and congestion has started. Ugh. I was hoping not to have to deal with Covid until October/November.
COVID cases are increasing each week in the US right now. Even if hospital staff are not wearing masks, you and your wife can wear a mask for your own safety. Venetoclax will suppress immunity, so there are good reasons to wear a mask in public indoor spaces. Deaths from COVID in the US were down to 205 people for the 7-day period ending August 5th, but it would be a shame to be one of the 205 ( covid.cdc.gov/covid-data-tr... )
UCSF, a conscientious research hub, is still requiring staff to mask. That says a lot to me. I cannot imagine going into a medical facility unmasked. I feel like the last person standing who has not had COVID and I don't want it. I have several friends with long COVID now so why take a risk? But a lot depends on where you live in the US. And of course it each can make their own choice, but in my opinion, there are good choices and not very wise choices.
Nobody (patients, staff or visitors) are allowed in the Cancer Centre where I receive treatment without a mask.
I can't speak for others, but as someone who has CLL but isn't in treatment yet, I continue to wear my mask. I work in a big box store, here in Hawaii and I wear my mask to work. My husband, who also is being treated for a blood cancer, also wears one any time he is around people. It's a very small sacrifice to make to protect us.Debbie
You can only go on what you feel is best. What is best for me and my husband, is to continue to wear N95 masks when we go out of the house. Most people here (Hawaii) have long forgotten the pandemic, and don’t wear masks. There are a couple of infusion centers where they continue to mask. Where I go for IVIG is not one of them. I am ill, and remain pretty much of a recluse. It is ok by me. We have 3 dogs, who keep life a hopping for us (along with ground termites, which are keeping the construction biz going here). Best Aloha.
TruthJunkie - where are you in Hawaii? I spent part of my year there and want to find an infusion center for my IVIG.
I just began to follow you, E-Lynn. Would like to message you privately. I do not feel comfortable sharing my whereabouts and all with the entire community. Mahalo.
bkoffmanCLL CURE Hero
I wear a mask indoors all the time. I don't eat indoors and I avoid crowds. Still a NOVID. Stay strong, Brian Koffman
We have never stopped wearing masks. We have started to travel again by plane and bought FFP3 masks to wear on flights and in airports .We do get strange looks from people, but they don't know our situation.
We have do what we feel is right for us.
Take care
I also wear a mask when I’m indoors with people and outdoors in a crowd- I do however compromise if I go out to eat but even then I keep my mask handy- People comment and I’ve gotten advice that masks are no longer needed and that “ Covid is over” to which I respond, “ does my mask bother you? “
Last week I greeted someone who said, “nobody is wearing a mask I can’t even recognize you “
To be which I responded , “ sure you can , I’m the one with the mask” 😂
Even if it helps against Covid or any other respiratory illness , even if it prevents me from touching my face without thinking - it helps me and doesn’t harm anyone else - 🤷♀️
it’s not 100% effective but if it feels right then why not ?
HiI haven't worn a mask since Jan 2021, after my 3rd covid infection. I have monthly visits to my onology unit , no mask worn there now. I have been in remission for 2 yrs after a stage 4 diagnosis and treatment. Everyone makes there own decisions, but after strict FFP3 wearing and limited contact I still got Covid.... so returned to a full pre cll and pre covid lifestyle...since then not had a single infection. On Acalabeutinib and IVIG now when igG drops below normal.
May I ask how ill you got with COVID and
If you had vaccine ( I had 7 but never made antibodies and am now on O + V)
Did you have any treatment when you had COVID.
Not sure why, but although my gut feeling is I don't need a mask, my brain tells me otherwise so I wear it in crowded areas
Thx
Skipro
First time mid O+I cycles so alpha... headaches treated with paracetamol, Dec 2020. Delta I think Sept 2021 , hospital for 3 days a a precaution as Covid affects platelets thus can cause a PE was treated with a very early antibody treatment, the first the hospital had done. 3 Rd Jan 2022 , treated paracetamol and red wine.
My consultants have stopped wearing masks. With the Covid jabs I think we have moved beyond having to use masks in every setting.
I started in July on the infusions and Venetoclax. The unit I attend is in the UK. Everyone including patients are required to wear masks.
As long as there is a risk of catching Covid, I am only going out for medical appointments. I wear a well-fitted FFP3 respirator everywhere (N99 to you).
I have attended around 10 hospital appts in the past 3-4 months, and whilst I can’t ask other patients to put on a mask, the staff have taken an oath to ‘do no harm’, so I have no qualms about asking the question, “Please would you wear a mask?”
I am polite about it. I have yet to be refused, but - just in case - I carry an open letter with me from my haematology dept, explaining why I need protection.
My view is to follow the science.. not the flock.
Stay safe.
CLLerinOzAdministratorVolunteer
The most recent statement from the International Covid-19 Blood Cancer Consortium that was released just a couple of months ago recommends that "Masking needs to be continued in healthcare facilities that treat IC/IS* patients."
healthunlocked.com/cllsuppo...
* IC/IS = immunocompromised/immunosuppressed
Irrespective of what anyone else does, I always wear a mask. I can only control what I do.
My consultant told me not to bother, that's good enough for me, life's difficult enough as it is without wearing an uncomfortable mask
One thing is for sure: while your wife is in treatment she can't depend on her immune system to protect her against all the infections that are out there. We know that the Covid vaccines are less effective in immunocompromised people, and that because of Covid other nasty viruses like RSV have become prevalent not just in winter but in summer and fall as well.
So while Covid, for the time being and for the great majority, has become a non-reportable non-event, the wearing of a face mask in a public place marks one out as some kind of freak. At least it can feel that way, and the temptation is to join the herd, relying on government advice and hospital guidelines.
Rely on official guidance at your peril, IMO. I read that in the US, as in the UK, government adopted a weak stance on masking throughout the pandemic, and that these days masking policy in hospitals is very uneven. In my recent experience of three NHS hospitals I have seen almost nobody masked, and even in face to face consultations a surgical mask (never a N95 or better) may be donned as an afterthought.
What do they know? I'll make up my own mind.
Three and a half years after finishing treatment I still carry hand gel and face masks (N95 equivalent) everywhere I go. The masks are for crowded places (yesterday a ferry carrying 900 people) or where lots of people have set foot recently (a supermarket). At other times (a restaurant, a wedding) I go without and try to limit close contact and get plenty of clean air.
Don't be a lemming. Manage your own risks and use a well-fitting N95 face mask whenever the situation demands.
I’m do to start treatment with in the week. Acalabrutinib and Obinutuzumab. One primary reason for treatment is my low blood numbers. Prior to my Sll, I was very much anti mask, but I was never against others wearing them. That has changed. While Covid is of great concern, have had it three times, I am much more concerned with the general fungal, bacterial, and viral infections that are still everywhere. I have purchased a supply of N95 masks. I really want to be around for another 10 or so years. You must do what you feel is right for you. Don’t let the mindset of other people who unfortunately do not have a clue as to why you’re wearing a mask make your decision.
Continue to stay safe.
I never stopped masking indoors. Though my boyfriend, who I live with, selectively masks admitting to not masking in stores, restaurants, etc. I sleep on the couch, keep an air purifier running & constantly wipe-down surfaces. I also avoid indoor public spaces and outdoor crowded public spaces.
At my cancer center, when they lifted the mandate, they agreed to give me a private room for ivig, lab work, appointments and all staff except phlebotomists mask for me.
I will probably always mask...
for a very short while during the early summer i stopped masking but then as the covid cases starteed to rise i quickly decided to reimplement masking. i've never had covid and i don't want to get it,. i've been on treatment since early 2020 with various btk's now zanubrutunib. my igg levels are low...though i've elected not to get the infusions yet....my hb hasn't making in forever. he got covid last year and i avoided getting it by masking 24/7 even when sleeping! for 10 days i made him mask then as well. i never did get covid from him. i believe in well fitting n95 masks which i have an ample supply of. my hb has never believed in them. he quotes studies that say they don't work. i have my own studies to quote that says they do work.....masks are an annoyance but a necessary one for us. if not for covid then for the next respiratory bug that rears its ugly head.
Great post. some thoughts.
Time fpr us to act, think like some asian cluntries, weraing masks just polkte hygeine. Personally, i am greatful that the stupid questions, looks have decreased. More and moe people are getting the idea.
Not just covid, but RSV, flu, colds.
Masks are useful, not just for protection against inhaling virus, but also from touching objects with virus on them, door knobs and so on.
Masks are not as onrerous when use is selective. perhaps forgo in open air, more and more diligent as indoors, especially crowds.
Indoor air quailty is a thing. HEPA filtration in home. and suspect that will be more and more in public. certainly restaurants and doctors offices. Not common as they impose additional cost and not much prooof of effectivness. But just makes sense.
Long covid is real and avoiding it very benificial. unfortunately, the work needed to reseach, find treatments not well fundeed. Latest thoughts are that virus causes mitochondrial dysfuntion, all over body. This makes all sorts of sense( Dr Eric Topol from Ground Truths.
t
I’m on my second round of treatment, diagnosed suspected 2013 confirmed 2016. First treatment a study fixed duration 2018-19. CLL return 2022 treatment Venetoclax and 6 months Rutuximab infusions.
In all that time our medical staff throughout Covid until present wear masks! We have continued to wear masks and have anyone entering our house wear masks. Frankly I’m surprised your medical facility does not. L
I wear a mask whenever I go indoors with other people. I am protecting myself. I clearly can’t control anyone else and even though I may be the only one with a mask and feel foolish, it makes me feel less anxious. Our immune system is compromised and I think it is smart to keep protecting myself even when I feel foolish
My husband is the one with CLL , W&W not treated as yet, and I am the wife but we both keep on wearing masks indoors when with others, and ask medical staff to do so as well.
we simply don’t want to take any risks, especially with a hand surgery coming up in Sept, and we’re not going to church and social events like that so no big deal all.
as for the (near) future? when his numbers are back to normal, and no other major immunology issues , then we’ll enter a remission era where both of us can go without masks. That’s the realization. Confirmed (in different words) by our primary care physician.
Give or take that’ll be 3 to 5 or 7 years from now on
(Broken into parts due to HU character limits in replies.)
At this stage in the pandemic, I have come to realize that SARS2 (aka Severe Acute Respiratory Syndrome 2, SARS-Cov2, covid) will always be with us. For that reason— and several others I detail below— I will continue to wear a well-fitting N95 or better mask whenever there is the potential to “share air” with a non-household member. Indoors or out, as SARS2 can be transmitted outside in a matter of seconds. (At one time it was mistakenly believed that it didn’t spread outdoors. That hasn’t been the cases since delta).
The pandemic is not over. WHO has not yet declared the pandemic over. Many countries have ended public health emergencies, with the untoward effect that people think SARS2 is over. Or perhaps that was the intended effect.
SARS2 is still classified as a BSL3 level pathogen. Full PPE required if working with it in a lab. But dealing with it in the office, on public transportation, going in for a follow up appointment, well, meh.
The virus that causes SARS2 is airborne. It moves like smoke and can linger for hours in the air. I’ve read it can linger in the air for up to 16 hours. That empty room that seems safe because nobody else is present may have had someone who’s is positive breathing virus into the air 2 hours ago.
The messaging regarding SARS2 has been abysmal and misinformation abounds. The minimization of SARS2 has reduced the virus to a sound bite of “it’s just a cold.” It is not. Many still believe the early, but false, messaging that if you were vaccinated you couldn’t spread the virus. You can. In the US, the reduction of isolation time by the CDC to 5 days when most were still infectious at 10-14 days and beyond, confused matters more. People are going out into the community when contagious because “it’s just a cold.” People are going out into the community when contagious because there are still cases without symptoms (though tissue damage from SARS2 can/does occur). People are told to come to work sick (even in healthcare settings), parents are told to send their children to school when sick. People have already exhausted sick leave and, from a financial standpoint,can’t stay home. Very few are masking. So SARS2 is out there and spreading even more.
Few are testing (exceptions follow), and even so, the reporting of positive cases (of the few who are testing) is no longer happening. Hospitals are no longer required to report cases. In the US, reporting went away around the time the public health emergency ended. It’s very hard to determine one’s own risk in this new “public health” paradigm, when the information to do so isn’t readily available. About the only good measure these days is in wastewater and that shows cases are ticking upward.
Back to those testing exceptions— Recently a number of Israeli delegation members tested positive while visiting the US and having meetings with President Biden. The press secretary pointed out that there was ongoing testing protocols for anyone meeting with the president. Leading one reporter to ask, “We’re not in danger though, right?”
c-span.org/video/?c5078296/...
The press secretary laughed and moved on. But we are in danger. Even the CDC has stated that 1 in 5 people who get SARS2 end up with long covid. Repeat infections increase those chances. A recent preprint outlines that SARS2 causes tissue damage even for those who were infected but had no symptoms.
icemsg.org/2023/08/03/an-im...
I know the president has said in the past that he doesn’t think about covid anymore. It must be easier to not think about it when there are testing protocols in place.
Earlier this year, at the WEF in Davos, attendees were PCR tested onsite and their access badges were automatically and immediately deactivated upon positive test results. Masks were available, staff were masked. They had HEPA filtration / increased ventilation and real-time air quality information available. It has been speculated they had farUV available as well. The hashtag #DavosSafe resulted from the detailed precautions taken.
Most of us are on this forum because we, or someone we know, have CLL, a b-cell blood cancer. In and of itself, that puts us at a higher risk for severe covid/dying from covid. If you’re on an ongoing immuno suppressive treatment with something such as a BTK inhibitor, that adds to your risk. Are you vaccinated? Great! But with being in the blood cancer *and* on an immunosuppressive treatment, did you happen to test to see that the vaccine seroconverted? Did you get actual antibodies from the vaccines? I tested and I did not get antibodies post vaccine. So I’m vaccinated but unprotected. I’m not one of those vaccinated who will have a less serious outcome due to being vaccinated because my immune system identifies as unvaccinated.
There is more that we don’t know about post-SARS2 sequelae (strokes, heart attacks, organ and tissue damage, long covid, etc.) than what we know. And a great deal of those unknowns will likely not be known for years. For me, I have enough health issues already to contend with. I will do what I can to reduce my risks as much as possible for as long as necessary.
It was was almost surreal going in for lab work the week universal masking was lifted at my clinic and hearing unmasked staff tell people that they didn’t have to mask. That masking “was recommended, but not required.” Since when has “recommend but not required” resulted in folks doing the recommended?“Son, I recommend you take out the garbage, but it’s not required.”
I had opportunity to ask the chief quality officer and MD at one of my local HMO’s about the lifting of universal masking. They had made a big deal about masks still be needed in certain areas on behalf of vulnerable patients, but to get to those areas, vulnerable patients had to walk through reception areas, hallways, etc, where staff, patients and visitors weren’t wearing the “recommended/not required” masks. This was a phone in segment on local tv and his response was that the chance of picking up covid in the hallway was not very big. But my thought was shouldn’t the focus be on reducing the risk as much as possible for those who are vulnerable in a setting where we don’t have the luxury of opting out?
Often people’s take away here is that if their HCPs aren’t masking, it must be safe. Many are silently wondering what the reporter asked aloud: “We’re not in danger though, right?” When seeing no extra mitigations, no masks, it’s easier to presume there is no cause for concern.
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continued—
The risks were reduced more when there was two way masking. I’m not quite sure why the big rush by hospitals and clinics to abandon universal masking.
It really hasn’t been all that long on the continuum since hand washing between patients became a universal medical practice. It was very controversial at the outset.
history.com/news/hand-washi...
Other health measures that took a long time to gain traction included a push for clean drinking water. Now we need to push for clean air. Upgrading buildings’ air handling capabilities/ventilation is expensive, but not doing so is costly.
Looking back, not washing hands between autopsies and delivering newborns, or between patients in general, not having waste handling systems or clean drinking water seems barbaric.
Perhaps one day, this time period will be viewed similarly for the lack of universal masking, and lack of clean air.
TL;DR: I will continue to wear a well-fitting N95 or better mask when I need to interact with others in public.
2/2
Hello Ecalv
I would suggest you do whatever you feel comfortable with, wear/not wearing a mask. I will continue wearing mask in hospital. Blessings.
Wore a mask religiously while teaching many students daily in my well ventilated classroom. Finally contracted Covid 5 months following my final immunization (in my area only one bivalent was allowed). I believe I contracted the virus outdoors on the football pitch while unmasked and supervising students. (Students regularly had covid) After recovery from my relatively mild symptoms, I felt empowered to go about unmasked because the transmission levels had drastically declined and I'd certainly just beat the most prevalent strain in my area. Now that school is restarting, another vaccination is still not available to me, and covid incidence rates are increasing with strongly divergent strains...I guess I should just go back to masking. Ugh!
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