Treatment & Masks

[Wendy328]

During treatment did everyone wear masks whenever they went out if the house? Or just when going to an indoor area with a larger number of people. How careful do we have to be?

[noeagaman]

Hello Wendy. When I had FCR back in 2017 my doctor told me to wear a mask everywhere when I left the house. This was because of neutropenia that is a normal result of FCR. I am not sure with the newer treatments that are out there now. Hopefully someone with experience will let you know what their experience was with those types of treatment.

Chris

[annmcgowan]

Hi Wendy I am on ibrutinib and have warn a mask since the start of the pandemic. I believe we are advised to but of course it’s personal choice.

Ann

[Horatio2]

Hi, Wendy328. I am currently in treatment, and I analyze my surroundings to see if I think a mask is necessary. I usually do not wear a mask if I am outdoors with few people. I, of course, would wear one at an outdoor concert (truthfully, I am avoiding any type of concert right now, LOL). If my family and I want to go out to a restaurant, we usually try to go at “off” times when we know there will be few people. I still wear a mask in, but I am less afraid to remove it to eat by doing this. I always wear a mask grocery shopping or shopping in general. I get stares and the frequent eye rolls of others, but I have found that I really don’t care anymore. 😃

[Wendy328 in reply to Horatio2]

That is what I plan to do. I also avoid concerts. I really love to go to MLB baseball games, BUT I don’t see that happening this year. They are so crowded and no one wears a mask. There’s always next year and aren’t I fortunate I can watch the game on TV. I will enjoy my grandson’s High School games.

[scryer99 in reply to Horatio2]

This is about where I've landed on it as well. There's not a lot of evidence of outdoor transmission of COVID. Indoors, I tend to social distance, avoid crowds, and wear an N95 mask unless eating.

No more bars, no more crowded theatres, but there's plenty to do otherwise. Some restaurants are too closed-in for my taste so I only do takeout from there (I do miss our local French bistro). Groceries and Target are fine masked. I have stopped travel on airplanes while in treatment.

Folks seem to take it in stride. If anyone is dumb enough to comment on masking, I simply say "well, as soon as you have stage 4 leukemia, then your opinion will be relevant"

[JigFettler Volunteer]

It's important to remember "how" to wear a mask. More specifically what to do with a used mask that may be contaminated with bacteria or virus having done the job they are designed to do.

Merely folding a used mask up and putting in a pocket simply spreads anything the mask has trapped. Best plan only handle the mask ear attachments.

Loads of demos on Google.

Jig

[lankisterguy Volunteer]

Hi Wendy328,

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I don't know that we have a black or white answer. It is more a risk vs reward question. When I walk around our town, I leave my well fitted N95 respirator mask off until I see multiple people near me - especially gangs of pre teens, then I mask up.

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When I am indoors in a crowded location, I try to reduce my exposure time and move to an uncrowded or well ventilated location before briefly lifting my respirator mask to eat or drink.

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The attached diagram is an example of time vs. mask types, and of course since no one else is masking now, so the upper left corner applies to no mask and the upper right corner (2.5 hours) applies to pre Omicron exposure time. (I mentally cut that in half to 7 minutes for no mask and 1.25 hours with an N95)

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Len

mask vs exposure time

[SofiaDeo]

I wear them indoors, and specific outdoor conditions (crowded, windy). I am convinced I got my cold from a few years back from workmen across the street when I was walking the dogs unmasked on a windy day. I could smell their cigarette smoke, and became ill a day or so later. I hadn't been anywhere else that week except walking the dogs. I was taking the targeted treatment Venclexta, and as I never did the obinutuzumab my specialist wanted (it would have been Jan 2021) I think I had a modicum of antibodies. So I mask or *turn my back* if downwind. I do wear it to the Dog Park, lots of people even if we are spaced apart, but there's generally always some wind in the foothills of the Rocky Mountains. I also wear glasses or goggles or put in moisturizing eye drops. The risk from eye transmission is low, but I don't want to take the risk. Also, this region is really dry with humidity around 15% and I often used them pre-Covid, I had already formed the habit. It was easier to put in drops before hiking, biking, etc. when my hands were clean instead of getting eye irritation outside and having to put them in with now-dirty hands. I keep a small bottle at the front door entryway table, next to my keys, lolol along with a bottle of hand sanitzer.

[country76]

I am in treatment with alacabrutinib. Since pandemic and currently I wear a mask only when I am inside stores ect. When we go out to eat I go to outside dining.

Outside no mask, I avoid crowds and groups of people. Inside I also wear glasses, clear or sunglasses. Carry hand sanitizer in my car and I wash my hands as soon as I get home. That is my personal routine.

[CycleWonder]

I rarely wear a mask outdoors anymore but I do indoors. We rarely eat in restaurants. Our food at home is better and healthier. I did attend two basketball games this season. I wore a mask. Not many others did but as others have stated, I don’t respond to someone else’s statements on my wearing a mask.

I will be attending a family party this summer. It will be mostly outdoors and if I am indoors, I will wear a mask. It will be a bit scary because we will be flying to and from, wearing masks of course, and not eating or drinking on the flights.

[Gradyboy]

I am on O&V finished the O a week ago. I keep a mask handy in case I feel the situation is risky. I have to admit I rarely wear it. I don't really go to big gatherings too often. I'm kind of on and off with the mask wearing. I don't want to destroy my immune system by never having any exposure and on the other hand I don't want to intentionally get sick with stuff either. As I sit hear with COVID right now. LOL That's all thanks to my own hubby though. My blood counts are all very good and also my IgG, IgM and IgA are all well within normal range. I may feel different if they were in a more vulnerable range. Bottom line it's a chance we all take/make for ourselves.

[Arts116 in reply to Gradyboy]

that’s amazing news about your Ig/G/A/M! How were they before treatment? I’m curious to know if treatment improved your immunity? Hope you recover fully and quickly from covid.

[Gradyboy in reply to Arts116]

They have stayed about the same from starting treatment until now.

[SofiaDeo in reply to Gradyboy]

You are not going to "destroy your immune system by not having any exposure" to various pathogens and viruses. That's not how our immune system works.

medical.mit.edu/covid-19-up...

The new data coming out indicating that at least the earliest Covid infections damaged CD8 T-cells, impairing and actually damaging immune responses, is more likely to contribute to infection, on top of the other factors affecting our immunity in response to how the world responded to the Covid pandemic.

Younger kids, who were in the process of building their adult immunities, are more likely to be affected by the masking and social isolation/lack of germ exposure from Covid isolation. Not adults.

medicalnewstoday.com/articl...

So if you don't expose your adult body to pathogens.....you just don't expose your body to pathogens. Unless you have had to use drugs like standard chemotherapy that can affect all the cells of your immune system, and kill off your memory T cells, and possibly affect other cells that produce immune globulins and other immune components, they are still there, passing their information on to new T cells as the older ones die off, or responding as needed. Plasma cells either get instructed to make immune globulins by healthy B-cells....or defective B cells don't direct immune globulin response to infectious agents, and this can become a clinical infection when the infectious agent concentration gets high enough. And as you age, and stop producing these cells, as well as decreased production of other immune components, your risk becomes higher. But it's not from lack of exposure to pathogens or normal flora. It's because an aging body doesn't respond to the stimulus.

CLL patients, specifically, have the problem that as we expose ourselves to various pathogens, *that part of our immune system* is defective and does not respond normally. Our targeted treatments are attempts to kill off the defective cells (since part of the defect in these lymphocytes is that they do not die off like they normally do, and can accumulate and infiltrate other areas), and fix the underlying damage. Exposing your defective immune system to pathogens when it is attempting to repair *the cells that respond to pathogens*, does not make sense IMO. The leading cause of death in CLL patients is infection, and it is because we are exposed to pathogens or even things that generally are non pathogenic but take over *because our defective immune system could not respond normally*.

Here's an excerpt that introduces this concept:

ncbi.nlm.nih.gov/books/NBK1...

[stevesmith1964]

I was diagnosed stage 4 during Covid lock downs thus straight to treatment. Has to wear masks etc, ironically I caught my first covid infection, double masked at the when I went for my first vaccine jab... only time I left the house during treatment

[kitchengardener2]

Yes being treated with Acalabrutinib and still wearing a mask in shops and other crowded places.

[ChristyAnne_UK]

Personally, I would not leave the house without wearing an FFP2/N95 or FFP3/N99 respirator. I go to some effort to make sure it is well-fitted, so it’s not a simple matter to put them on and off at the drop of a hat. They are only effective if you’re wearing them, so no removal for eating/drinking indoors, for taking photos, etc. All CLL-ers are extremely vulnerable, as I heard Brian Koffman say, and the only mitigation out of the house for me is my respirator, into the 4th year now, and no covid to date. So, yes, given the potential severe outcomes, pretty essential, I’d say. But that’s just me. I hope that whatever decision you make for you keeps you safe. Take care.

[Feldman]

Hi Wendy,

I’m on Imbruvica and wear a mask when leaving the house. Being that the general public has stoped mask wearing , I’ve upgraded from a Kn95 mask to a 3M N95 mask. During the hot summer months, a lighter mask will be worn depending on the situation. Avoiding crowds is my new normal.

[Jujy]

Spouse here. I do most of the shopping, etc. Always mask indoors.

[Teemed]

I started Calquence 8 months ago and am doing great on it. I feel so much better.

I’ve done all my vaccinations, carry hand sanitizer in my car, and bring masks so I can wear a good one indoors in crowds or elevators. I avoid crowds. No mask outdoors. Put screens on my doors and windows so when family comes I can get good airflow.

I go to restaurants either with outdoor dining or off times. I go to church weekdays not Sunday. When I go to the Scuba dive shop to visit I stand back 6 feet . I look at it as my job to either mask, stand away from folks or avoid/leave and sanitize my hands.

I try to live and go places and be prudent. I rode in a Big St Patrick day parade as I had great airflow and used no mask.

It’s a shame some people judge a mask but it teaches me about being judgmental to others and I’m more sensitive to my biases towards others.

As humans we use glasses,hearing aids, wheelchairs, walkers, orthopedic shoes etc. Masking is just another aid and I’ll use it

[GMa27]

In 2018 during my treatment masks were never part of any discussion. I stayed home first week of each chemo (only needed 3 rounds) to rest. Hardly had any side effects. Then the next 3 weeks went out as usual.I just reminded people who visited me to not expect a hug & to stay away if they felt sick.

I stopped wearing a mask last year but if I were to have chemo now, I would wear a mask in public and eat more outdoors till treatment over.

Good Luck with your treatment. 🙏💕

[Ibru]

Still wear a mask out of the house always due to covid and flu.

[Amy4steve3]

my Dr said definitely wear on at the airport, and in crowds, but everyone will catch it, wash hands often, the mask mandates here in Oregon will be lifted next week in medical facilities, scary! But I was assured that lots of treatments are now available, just call the doctor if sick asap to start medications

[mbbinbrooklyn]

I only mask indoors with a N95 but I also avoid crowded outdoor events. I think this summer when I resume going to outdoor music shows, where I'm stationary, I'll mask as best possible.

[Notmuchenergy]

I’m on watch and wait and I wear my mask as soon as I leave my house. If i go somewhere a bit busy I wear my mask and shield

[BeckyLUSA]

Probably not a popular response, but my risk/reward ratio is different. I am in treatment with Ibrutinib but do not wear a mask until I feel I need to. If a store or restaurant is not crowded I do not pull out my mask. If I feel uncomfortable for ANY reason, around little kids, a room gets too crowded, somebody starts coughing or sneezing, I will put it on. I don’t wear them to church, but usually sit in the back with others not as close to me. I definitely wear it in the airport and on the planes. Some doctors offices and hospitals still require them here in North Carolina, but not all. My cancer center will probably require them forever, as they have done so well in keeping all infectious diseases at a lower level. My close circle of friends know my condition and they won’t come around me if they are even sniffling. I guess it is just different strokes for different folks.

BeckyL USA