I am wondering about the reality. I've read everything from 33% - 89% until Omicron. I've read 2% in a recent publication from Denmark during their Omicron phase, and most of those deaths were in age > than 71, with many other serious morbidities. Half of those dying had NO Covid specific therapy. NONE had Evusheld.
I see so many posts about people on this support website that had Covid and they all recovered fairly easily, with a few exceptions and I've never read about anyone dying?
None of my doctors can give me a number, they just keep saying get vacc'd, get evusheld, wear a mask, distance, avoid crowds, and have everyone I live with do the same.
So nothing has changed in my doc's recs despite the Evusheld, vaccines, and therapeutics and less deadly strains.
I am tired of living in fear, tired of getting flack from family about our precautions, and am hoping for some REAL DATA ON MY RISKS OF DYING IF I GET the Omicron COVID IF I CUT BACK ON WHAT I ASK MY FAMILY TO DO.
I am 64 almost 65. I work out everyday climbing steep mountain trails on snowshoes or in hiking boots based on the season.
I have relapse CLL that came back in June 2020, just 2 years after FCR. I am looking at starting up treatment again in the near future.
I have had 4 Pfizer and 2 Moderna full dose boosters. Not much antibody response.
I get IVIgG every month.
I've had Evusheld 3 times.
Any input????
Thanks
Skipro
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skipro
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Skipro, I think with Cll everyone is different such that younger people with early stage Cll have little to fear from omicron while someone in their 80s with later stage Cll might want to take more precautions. Everyone needs to make the call on how much precaution to take.
I can tell you that for me, I reached the same conclusion as you several months ago. Since that time I have been on my first airplane trip and attended my first NFL game in person since Covid.
I still try to be smart. I’ll wear a mask now and then. I’ve taken Evusheld and omicron booster. For the most part, there is little I do not do now because of Covid. I’m back going out to eat, back going to movie theaters.
I tend to think I would survive Covid if I got it. If I would end up in the unlucky 2% or whatever the mortality rate for us is now, then so be it I guess. I think the risk is worth the benefit for me. If I was older and less healthy with Cll, it might be a harder decision.
I have the same attitude as Jeff on this and long since gave up on isolation and mask wearing. It’s not because I’m foolhardy or believe I’m impervious to the ravages of Covid but frankly I think it’s impossible to accurately quantify risk of mortality. I’m the same age as you,
I contracted Covid in Dec ‘21 just as Omicron was evolving in the U.K. so have no real idea whether I had the Delta or Omicron strain. My whole family were infected for Christmas and frankly it was the weakest and least troublesome infection I’ve ever had. Granted I was given Sotrovimab on day 4 but neither my son or husband felt much apart from mild affects from the infection. I was still on treatment with Venetoclax at the time and have hypogammaglobulinaemia plus diabetes. I’d had all recommended vaccinations by that point. In contrast, a healthy friend of 63 with no serious health issues died early in the Covid onslaught but he hadn’t been able to be vaccinated at that stage. Vaccinations were and remain a game changer.
After nearly two years of ducking and dodging, I decided I couldn’t continue to live like that and have since been on several foreign holidays and haven’t actively avoided any social situations.
I’ll have my next booster in a few weeks and continue to live my life. I’m sure somebody could produce a very scary graph indicating why I shouldn’t but the data is so difficult to definitely produce as you’ve found for yourself.
I think you have to take into account your impending need for treatment because it ups the ante for you plus your environment and local incidence. I rarely see a mask now and come from a very Covid compliant locale. However, the general attitude I now find is one of we simply have to live with the risks. Psychologically it’s hard, especially for us but having lost two precious relatives over the past week, it’s made me realise life really is too short to be held captive to fear.
Others may fundamentally disagree and I respect that.
A well reasoned and thoughtful response. I’m in the same camp although I’m likely nearing another treatment or maybe worse so I suspect I’ll be more cautious as we move into the winter months in the northern hemisphere.
I agree with 99% of this. But since it is so simple, wearing a mask in high risk situations (crowded grocery or other store, public transportation) is something everyone on immune suppressing treatment should be doing. It's like washing your hands after using the bathroom IMO. With a broken leg, one uses a crutch while healing to not affect healing. When on immune suppressing treatment, one does a few simple things like wash hands & wear a mask to prevent infection.
Protection is much greater if all or the majority are wearing masks and they’ve all but been abandoned in my area. I’m scrupulous about hand washing and am continually assessing and reassessing the situation. I’m not on immune suppressing treatment.
My son is at a Centre daily and is therefore a vector of infection. I can’t control that so have to accept the reality of my situation and his needs.
I’ve lived with hypogammaglobulinaemia for many years and infection was always an ever present risk. I had to manage it whilst living my life and allowing my family to live theirs. Didn’t always pay off but that’s life with a compromised immune system.
I’m certainly not complacent or foolhardy but have had to accept that this risk situation may always exist and I certainly won’t.
I will give you some real world data. No one know who will suffer and who will barely know they have covid. The data shows, elderly, immune suppressed, and those with co-morbidities tend to not fare to well. Here in the United States, 300 to 400 people are dying every day from omicron. We know omicron is less deadly than previous strains, we do not know what future strains and variants will bring. Pretty much everyone is tired of this. The chance of catching covid with little or no precautions is pretty high. Hard to say who will get a light case, and who will not fare too well, even in the immune suppressed. It’s a matter of personal risk . Hope this does not come across as too harsh As a person with CLL who is still recovering from a July 21 covid infection, where I got bebtelovimab day 1 and rapid tested positive for 80 days thereafter, I set my bar pretty high for risk tolerance, or would that be bar low? Anyways you know what I mean
davidcara, I am curious about your COVID experience. I tested positive 3 days ago and received bebletovimab 2 days ago. My COVID symptoms progressed very quickly and I hate to think about where I would be if I had not received the bebletovimab so quickly. I had also received my 2nd round of Evusheld one month ago. I was very careful and always wore a quality mask when indoors or around groups of people. I am still wondering where I failed in my precautions.
who knows where you got. Would not say you failed, covid is everywhere. I was very careful, wore a mask whenever out in public. No restaurants, no large events, even wore a mask if I went to relatives for Thanksgiving. I knew, I would catch covid at home. Which I did, caught covid from either my wife or adult son.
Made zero antibodies from vaccines, got Evusheld first week of March, tested positive July 21, got bebtelovimab July 22. Felt better pretty quickly except GI symptoms for about a week, and then after that severe upper airway congestion for 10 weeks Could not breath through my nose for all of that time. Severe sinus infection secondary to covid viral infection. Rapid tested positive for 80 days Although faint line started day 60, and finally disappeared day 80 Still dealing with post covid sinusitis ENT recommends, surgery to clean out sinuses and reduce inflammation That’s my story There are a lot worse covid experiences, and a lot milder experience Hope yours is a light go of it Tesoro
Thank you for sharing your details. Like you, I received bebtelovimab the day after I tested positive. I am noe 60 hours post infusion and feel like I have turned the corner and feel better. I know that I am super vulnerable because I am 14 months post obinutuzumab (for AIHA) and my ALC is only 0.2 still. The good news is CLL has been knocked back with MRD at 0.01% blood flow cytometry. Bad news is severe immune supression. I guess I need to stop obsessing about how I contracted it and move forward with stricter defenses. Thanks again!
Hi Skipro. I decided I would rather live life and do the things I love than waste my life sitting home with worry. I flew to Southern California to spend time with my daughter and her husband. I love baseball so we took in a Dodgers game. Went to Huntington Gardens, out to dinner, shopping, etc. We had so much fun and laughter.
I’ve had FR, BR and currently Ibrutinib. I’m ready to live life everyday. Just my take on life with CLL/SLL. There isn’t a correct answer. We have to do what feels right. Good luck. Sally
Quite often I wear a mask. I especially wear a mask on airplanes and airports. I came to a point when I turned 70 in February that I had missed too much of the things I enjoy. I kept busy sewing, reading, gardening and long walks with my dogs during Covid lockdown, but I was missing out on the life that I enjoyed.
I had 2 Moderns vaccines and with the second one had a terrible reaction. If affected my eyes for over a month. When tested for antibodies, I only had 11%. In August I received Evusheld. I finally decided to take my chances and start living my life again. I’ve had a good life and am ok if I get Covid. I don’t want it but am so tired of being held captive by Covid. I am a strong Christian and that helps. Good luck with your choices. Only you can decide what is best for you. 🙏Sally
I will say one thing, well two things. You are in a lot better shape than me. I have read a report that had some encouraging data; Covid antibodies are starting to show up in IVIG.
Risk management is a personal decision. If my memory is correct, one of the forum members posted that a CLL trial doctor had stated that 50% of the covid CLL hospitalized patients passed away pre-Omicron. I suspect those hospitalized had a high rate of co-morbidities. Depending on who's figures you use, 38%-50% of CLL patients succumb to pneumonia anyway. I get out and enjoy life with restrictions as in V&O treatment. I wear mask in hospital settings, carry/use hand sanitizer and avoid large gatherings. I would echo other forum members on here, go enjoy life. Blessings.
i am severely immunocompromised, alpha and omicron were just like a mild cold, delta was more flu like. Will let you know what the next variant is like once I have it .... probably soon as the schools are full of it.
I hear the next variant, cannot remember the number tends to settle in the GI system. Meantime vomiting and diarrhea.
Many infectious disease experts believe covid infections are cumulative. With the damage mounting with each infection. And of course we know, there is a real risk of stroke or cardiac inflammation within the first few months of a covid infection
yep, it is difficult. I decided I was not going to get covid at Costco. So I wear a mask when out and about. Just getting over covid, which messed me up pretty good. Did not need hospitalization though. Finally rapid test negative after 80 days. Got it from my son or wife. It’s not easy, hang in there Steve.
Now that we have treatments and a milder variant, I don’t think I’m likely to die of Covid so I’m going to make the most of life.
I no longer take any precautions such as mask wearing unless I’m in a hospital setting but I don’t go to crowded places such as theatres or pubs and I choose my restaurants carefully, going when it’s quiet and sitting away from others.
I have zero antibodies after my vaccinations and, with the agreement of my Dr, I’m not going to have any more, at least for the time being. My husband had Covid and thankfully, with simple precautions, I managed to avoid it.
Right now, I think we each have to assess our own level of risk that we are prepared to take and respect each other’s choices
Skipro, I am just past 70 and have been a type 1 diabetic for the last 60 years. Last March I was diagnosed with a mild heart condition so I am on a lot of tablets for that. Been CLL W&W for over 10 years.
Used to be pretty fit, regular gym and travelled world wide for work until 5 yrs ago.
I agree with most of what Newdawn says but not about masks. I don't understand why ANYONE should stop wearing them in crowded situations. If you are in a doctor's surgery or a hospital having to wear a mask for an hour just seems respectful AND sensible. If you are in a packed store then why not? Minimum inconvenience but a lot of benefits. Don't forget we are not just vulnerable to covid infections.
We have learnt that the virus was airborne and mass infection causes the country to suffer. The change to appropriate mask wearing should have become a permanent feature of our society. Especially on crowded trains etc. It would have helped our community too.
I agree entirely, mask wearing is not a big deal, and it works (at least in part) both ways, for the wearer and the rest of the community. I think if we go back to our pre 2020 behaviours we will be in for a bad winter. Dick (Kwenda) tells me that there is a virulent new variant of Covid circulating in Asia right now, and we've been warned that this could be a bad flu season. So why wouldn't you wear a mask?
Re the COVID strain in Asia you mention; we in the capital city of New Zealand are seeing headlines in our local media identifying this city as beginning to experience a rise in the predicted wave of one of these new COVID variants. This is said to be likely to sweep across the country. So I will be digging my masks out again and probably going back onto online grocery shopping . No IG's to speak of or antibodies .
I agree with most here. I’ve actually decided not to get another Covid jab (I had the first 3) given the lack of response in most CLL’s (& other personal reasons). I remain moderately cautious when out and know if I test positive to get the anti body pronto. That seems - to me - to be the best way to manage Covid for someone of my age (50’s and otherwise healthy). The one piece of advice my doctor has insisted on is getting the antibody, even if I’d had all the jabs. Even after the 5 day period has expired. Not sure if that advice goes with Evushield as we can’t get it in the UK at the moment.
hi Skipro, I think it depends on your individual choice, you can live in fear of a thing that might never happen, and if it did you are likely to survive, or you can get on with living a normal life and all the joys that brings, like Newdawn I have decided to live as normal a life as I can, I go to pubs, restaurants and social events now as normal, I’m also going on my first foreign holiday in 3 years in nine days time and I stopped wearing masks months ago as no one in my community now bothers any way even in Gp surgery. I must stress this is my choice and different people will have their opinions, which I respect.
Yes Dave, we all have our opinions. I think the word "fear" can be looked at a variety of ways, like a spectrum. For me, it's not "fear" but "concern & wise practice" to be more "reserved". I feel like some may feel offended when they read "live in fear". Which, is probably not your intent & why writing, versus speaking in person is difficult.
We all bring different things to the "table", prior knowledge/experiences that shape our thinking/feelings. For example, my husband having lost his father & being diagnosed with CLL in 2020 has made it extremely difficult for him to venture out. Similarly, some can hear/see the news and become fearful, even if young/healthy. In other words, it isn't always cut & dry & I feel for everyone during these difficult times.
I wish you and everyone here the most health & happiness you can manage!!!!
thank you cookie for your kind words, I think there was a bit of a mix up with the words used, it seems in America it’s not a nice thing to say living in fear when talking about covid, I will pick my words with more care in future, I have been shielding since covid began and it’s probably been the worst 3 years of my life, I’ve been in and out of hospital more times since covid began than anytime in my whole life, I have only just started to feel a bit more comfortable socialising and I have booked a holiday to Cyprus in a weeks time, mainly to give my wife a break as I know it’s not easy living with someone who has to shield and hopefully we can get there and back safely.
All the best to you and your husband, and maybe by 2023 we can live a bit easier. Dave x
I am one round in on FCR, and am just getting over COVID. Paxlovid definitely helped, as my non-CLL better half was sicker than me. It was like a 3 or 4 day bad head cold for me, but it has made me tired. One data point 😀
We are in the "mask as required" and "live life well" camp. My hubby is currently being treated with V+O . We have "all the shots". We had covid confirmed in Dec'21, and quite probably this past August although all of many tests came back negative for both of us. The first time around we each got monoclonal antibodies, the second time no specific treatment. Both times were "flu-like" for about a week. I lost my sense of smell and taste both times and had lingering cough and some brain fog. Hubby reports none of those. We are 62 and 61, he is "essential" and required to be onsite throughout the pandemic. Isolation, even with him working, was Hell for us and we would never choose that again.
I think thing are going to get worse ahead. Vaccination rates for the latest shots are dropping off so we'll lose some herd immunity. Evusheld is not effective against the upcoming 4.6 variant, and in the northern hemisphere were heading into winter so we will be heading indoors. Don't let you guard down too much.
I am on team masking and agree with the well considered points made by several posters who value masking.
.We are shaped by our experiences. My mother's life philosophy was to live life as she wanted, doing what she wanted, and had no interest in living a long life where she deprived herself or lived in fear. Well, she got her wish. She died suddenly at 54 of a massive heart attack, as a smoker and drinker. As a result of that shock I reassessed and redefined myself.
There is no way that I want to catch something because others exposed me to their risky lifestyles. I am happy to have affordable high quality N95 masks available and for me it is no effort to follow the guidelines to reduce risk, with vaccines, distancing and masking.
Most responding to this question have families who can help care for them if they catch Covid or the Flu or Pneumonia, which isn't my case.
I can understand that as living alone, with very little to no support at this time, makes me very cautious still. Around me, people that are very fit and healthy have had quite bad cases of Covid, so I am also not prepared to take a chance. Also in my area the medical system is in collapse mode, so I'll stay at home, wear a mask when out and about, and keep safe. I respect all other opinions and hope everyone will stay well.
I am in the cautious camp. My husband, son Charlie and I all wear masks if inside with others outside the family. I avoid anyone inside not wearing a mask.
We see my son Jon and his wife who generally do not wear masks. My husband traveled with Charlie and Jon and his wife to the ABQ Balloon Fiesta. No one became ill fortunately. We have all received as many Covid vaccines as we can and the flu vaccine.
We continue to order groceries and everything else. If we hire anyone to work in our house, we insist on mask wearing.
Maybe next year I will consider loosening up. For me, not catching Covid is a priority.
We exercise outside often - mostly hiking and cycling. Dining out consists of venues with outdoor dining. With winter approaching and a new variant likely heading our way, we will be eating at home until it warms up again.
I would prefer if others wore masks indoors. I don’t understand why it’s considered such as inconvenience by some. If I could ride a bike wearing one in Albuquerque (same altitude as Denver, one mile high), then others can wear them walking inside.
I have been vaccinated and boosted. I caught Covid in March and though I got sick, I quickly recovered. I say continue to be cautious, and go out and enjoy your life.
I am 58, unmutated, 13q, 100 lymphocyte count, treatment naive. I have had 3 Pfizer’s, 2 doses of Evusheld. Have had COVID 3 times. Work from home and did not miss a day of work. COVID was so mild it was embarrassing. A common cold or flu would have been way worse. Everyone is different, just my experiences. During this period I was hospitalized due to an infection though.
People with CLL tend to be at risk for sinus and urinary track infections, and pneumonia. One problem with covid in CLL people, it can set us up for a secondary infection.
Hi Skipro- maybe this will be encouraging. I have only ever had a single Pfizer vaccine in April 2021. Never got the second shot, never got the booster. I did get Evushield in March 2022. I got Covid in July 2022 and it took about 3-4 weeks to recover without receiving any treatment or therapeutics. Other than CLL, I don’t have any co-morbidities. So, it seems like this is milder than the previous strains. I am now living my life almost as I did prior to Covid. I have come to terms with CLL. I am not “just trying” to survive. I want to live, see my grandchildren…. travel. I am fortunate to be in good health. Other than Covid, I haven’t been sick in two years. I know that can suddenly change and I may be forced to modify my behavior if I start getting infections or if a more lethal strain of Covid develops. But until then, I am going to move forward with as normal a life as possible without doing anything foolish. I wish you well in your treatment. Kvb-texas
But just because *you* had a mild case, does not mean anyone else will. That is the big problem with Covid it is so unpredictable. I am happy you had a mild version, but I wouldn't necessarily say this is a "mild variant" with hundreds of people daily still dying in the US alone.
Having even just one vaccination and then the Evusheld (which effectively provides us with the antibody protection we would have if our immune systems worked), may be why you and others have reported mild symptoms. As SofiaDeo has pointed out, that you had a mild illness doesn't mean others will experience that too.
Part of the mildness, relatively speaking, of Omicron, is considered by some to be due in part to vaccinations reducing the infection severity. CDC data shows unvaccinated folk have around five to ten times the risk of dying compared to vaccinated or fully boosted folk respectively. I appreciate that CDC no longer enjoys the respect it once had, but other countries are reporting similar data. Given we can't rely on our bodies to produce protective antibodies, it makes sense to arrange for whatever monoclonal antibody protection is available to us where we live.
Neil
COVID-19 death rate is much higher in the unvaccinated according to Swiss and CDC data.
I am still more on the cautious side, although I have stopped wearing a mask at work. I work in an office with only one other person, so I feel pretty safe there. I do wear a mask if I have to go into our main building which is crowded with workers. I also still wear a mask when going into any establishments in town. I am usually the only person wearing one, so it feels a little strange.
I have managed to avoid getting COVID this whole time and don't want to take chance on getting it now even though the strains are supposed to be less severe now. I had one Evushield injection and had a bad reaction to it so won't be getting any more of those. I just don't know how my body would react with COVID and don't mind wearing a mask.
I have decided to go on vacation to Hawaii with my wife in April though. I will wear a mask the whole way there and back though. I did that once before soon after completing FCR and before COVID. It really wasn't that bad.
To each their own, I guess. We all have to decide what is best for our own situation in life.
This is such a timely discussion for me. I recently got Covid (as well as my husband). I had, in the prior week ONLY, decided to lower my guard a bit & went out without a mask. and wham, there it was. I was saying to my husband this morning that I go back and forth and back and forth with what I believe to be true about covid. I had received my 5th booster 3 weeks prior and then also got an antibody 2 days in. I've lost my taste, feel achy and had a day of icky congestion but otherwise so far am doing ok. So thankfully at least there is something we can do if we do contract it.
But based on that experience I will go back to wearing my mask, especially since winter is coming here in the north. It's not that hard really. I just have to tell myself who cares what others think. But I also believe we have to weigh our risks/benefits as others have said. I want to continue to see my family, if not for them then what?
It was comforting to read everyone's take on it and I respect all of the input. It is a personal decision and a very difficult one.
Indeed, everyone must decide for themselves what precautions they are going to take against Covid. And Covid affects people differently. Although I survived the virus, it attacked the auditory nerve in my right ear and I had Guillain-Barre like symptoms. I lost most of the hearing in the right ear and I still have other GBS symptoms from time to time. So, i will avoid crowds and continue to wear a mask in most indoor settings even when I am the only one wearing one because my experience with Covid had lasting effects.
Why do you say that? I agree with Jammin_Me. There's a lot of middle ground between your statement "you can live in fear" or "you can get on with normal life". Many seem to think there is no middle ground. But there are many variations between "I deny Covid is a problem, or that it exists" and "I live in fear of Covid". I can enjoy my life with reasonable infection control precautions, so I don't die from my immune compromising disease/complications thereof. Just because others in my community aren't immune compromised and do differently than I, doesn't affect me. The statement "no one else masks, why should I" is akin to a Type I diabetic looking at others eating cake and saying "they are all eating it, why should I deny myself". Um, it's because of our own particular need to do things that are relevant to *our* health situation. Not saying anyone is "right" or "wrong" in their choices. Just, there is risk assessment, and one has to decide the level of risk they personally are comfortable with. Jammin_Me was pointing out, just because people in your comminity make a choice, doesn't mean it's one you should arbitrarily pick without understanding the consequences. And I too am tired of all this "living in fear" stuff, just because I am choosing to put a mask on. I'm not "afraid" of Covid, I used to work with infectious pathogens, I wasn't "afraid" at work. I just did what I needed to do, to avoid infecting myself. And even when working there, with no 100% guarantee that I wouldn't "get infected", I wasn't fearful at work. Humans do dangerous/risky things without fear all the time. Just, don't be a lemming; get educated, and make an informed choice about what *you* want to do. As long as it doesn't affect others adversely, you really don't need anyone's input or blessings. Only discussion with others who are affected by your choices. And life has always been this way. It's not unchristian to point this out.
it was un Christian to make offensive remarks about me , skipro had asked what other people were doing and I gave an honest answer and I also said I respected other peoples wishes, I was not trying to offend anyone with what I said, but jammin made remarks about my upbringing and also a quite offensive remark about people jumping off a cliff that’s what I found un Christian and offensive.
OK, I see your point. I personally didn't think most of it was directed at you, personally, except the last sentence. I took it to be generally directed remarks, but can also see how it a lot of it might be interpreted as a personal one. I am sure they didn't mean to be intentionally offensive or insulting. I do understand that we Americans say and do things that offend people in other countries, when we ourselves may not be offended. Thanks for pointing out something that we might interpret as "cheeky" or "sarcastic-funny" actually isn't coming across that way to others outside the US.
being sarcastic and funny is ok with me, personal insults I’m afraid are not. I will leave it at that thank you. I wish you well and hope that things improve for all of us all around the world. Dave.
I understand how you feeĺ. I had fcr in 2010 and it was 8 years before I needed more treatment and have Ibrutinib. I am in remission after over 3 years. Like you I have ivig. After having cll for 21 years I should be vulnerable if I catch covid. I was very nervous to start with but vaccinations have stopped thousands of people dying. I cant spend the rest of my life wearing masks in the house and upsetting my family.
I keep a mask and antibiotic gel to hand. If I go in a coffee shop or restaurant I choose a table away from other people. We have groceries delivered but my husband gets the fresh stuff locally. I dont go in supermarkets. I havent been abroad on holiday but I have been in a hotel in England. I have only been in a theatre once. My family do visit a lot. I dont wear a mask or discuss covid and I cant let my grandsons grow up not knowing me and having terrible memories.
I think the easy thing to keep the peace is to be discreet. No one needs to know there is a window open a bit. You sit at a distance without being obvious. I go shopping and I decide how busy it is and if I can do away with the mask I do. If I need to use the shop toilets I wear a mask and wash my hands thoroughly. I use hand gel if I have touched things and on leaving.
It is not going away and we havent got Evusheld in the UK. I am hoping I get Sotrovimaď if I catch it. Numbers are going up. Im hoping if I dont breath in other peoples breath and I wash my hands well I can avoid covid. Anne uk
yes my late mother taught me to always wash my hands, which I always do. She also taught me to respect other people and their opinions even if they differ from mine and to be kind in what I say, like I said I was answering a question asked on here by someone else and gave my honest opinion. My wife and I have lived in fear of catching covid for the past 3 years nearly, and it’s only now we are starting to get a little more easy about socialising etc. I wish you and your family a long and happy pain free life. Dave.
that’s true jammin I have never been anti vax, in fact just the opposite, I have emailed my mp 3 times about not been able to get vaccinations I have also signed petitions for the uk to receive evusheld, and wrote to national papers about not been prioritised for covid vaccinations, I myself have had 6 covid vaccinations ( the last one 3 weeks ago) I accept we may have been mistaken about our comments, and I hope there are no hard feelings on your side.
When I was 8 years old, the measles came around and the advice given to parents in 1959 was to make sure your child had the measles in elementary school. So I played with a neighborhood friend with the measles and came down with the measles as expected.
What was not expected was that I did not break out in a rash. Rather, my throat and digestive track became inflamed. I was a sick little girl. I lost half my weight and was home from school for 8 weeks. Other kids were sick for 10 days.
No one saw this coming. I’d had the chicken pox and mumps with no issue but the measles knocked me flat.
From this I have learned that even if a disease is mild for someone else, it doesn’t mean it will be mild for me.
PaulaS and AnneHill , Measles can be particularly devastating to the immune system as well has having a serious side effect profile, including causing some life long disabilities. Measles is also extremely contagious - about the same as the COVID-19 Omicron variant. That's why there has been so much concern at the outbreaks of measles following resistance to childhood vaccinations in some communities.
Dr. Francis Collins, the previous director of the USA's National Institutes of Health, explains in this personal blog more about this, including how measles affected him as an adult: directorsblog.nih.gov/2019/...
Neil - That is a very interesting research study. It matches my experience very well. If there was anyone in my life that became sick with any virus, even if my exposure was minimal, I also became sick. When our kids were young, I was constantly getting sick.
I have felt deficient my whole life because it was seemingly so easy for me to get sick. Interestingly, this past couple of years I have not been sick at all, outside of the CLL.
My husband and I tend to be on the looser side of the issue. All of my friends have had it, some more than once. All of my immediate family except for my husband and I have had it. I have thought I had it a couple of times, but tested negative on numerous “quick” tests. We have had all of our shots and boosters ( most recent one yesterday) and got my second go round with Evusheld last week. I get IVIG every six weeks. I do everything I can, but pretty much gave up the mask wearing in January 2022. Except for medical locations or if I am in a situation where I feel it would be smart to wear a mask. We will be flying commercially for the first time in December and I will be wearing a mask on the plane and if I have to be close to people in the airport. I have never like crowds, so it is no problem for me to stay away from them. Will I ever get it? Who knows.
Lots of posts here, haven’t even had time to read all. It seems to me we were trying actively to avoid infections before the pandemic. See point 11 from the pinned post Living Well With CLL.
That's a very important point you've made. With respect to the pandemic, countries where this same approach was used of actively avoiding infections until vaccines became available fared better on the measure of cumulative deaths per 100,000 population.
Now we just need the equivalent protective measures available to us who can't mount antibody protection (that is, effective monoclonal antibodies and antivirals).
I found this on PubMed. My apologies if it has already been posted here. This is a big thread! The link is just to the abstract but the gist is that in one study overall population of CLL patients, not just hospitalized, the mortality rate was 2% with Omicron. I think our level of risk adversity plays into how each individual deals with how we choose to cope with COVID. I don't think COVID will kill me but I don't want to get it because both my husband and I each have 2 strikes against us for risk of severe illness. He has a spinal cord injury and I am his caregiver. I don't want the flu, I don't want COVID. I have come to think of my mask as a cane or a wheelchair. My "disability" is that I am immune compromised and therefore I want to/need to wear an N95 when I am in indoor public places. Like others, I am getting pretty tired of isolating. I really miss my exercise class and going to the gym. I am constantly weighing the risk vs the enjoyment. May we all be well! pubmed.ncbi.nlm.nih.gov/355...
I do risk assessment as part of my professional life. A few thoughts:
1) Some pre-Omicron study work I’ve read suggested a mortality risk for CLL patients with immunocompromise at around 11%. Basically 1 in 3 it would put you in the hospital, and 1 in 3 you’d die if you ended up there. Like all such work it is backward looking and thus likely overstates the risk a bit.
2) Right now with Omicron running around and new variants emerging, stats will be behind reality a fair amount. But I figure transmissibility has generally gone up, and the supposed milder strain may not be so mild if my immune system is kaput. So I don’t feel out of the woods.
3) This is a strain in the current environment where maybe 10% of people are masked. I’ve rarely had negative comments, but it’s still a mental strain. I figured this out when traveling to Asia recently where they are still 95% masked. I miss those days in the US.
4) So precautions may are helpful, but wearing. The approach I’ve taken is to manage risk where I can and where it helps. So:
- all the vaccines and boosters, plus Evusheld
- good N95 masks from reliable sources, worn only when I really need them - public indoors in not-well-ventilated venues
- vaccines tend to prevent severity more than transmission. So I make sure my loved ones know I am at risk and trust them to manage their time with me appropriately. My spouse gets all her boosters and masks. My children do not. My friends know to bow out of social events if they can’t reasonably promise covid safety, or we just choose outdoor venues.
Hopefully that balances the PITA factor with safety and peace of mind.
I do the things you’ve mentioned including vaccines, Evusheld and use the best combo of mask’s available
My wife, on the other hand wears a mask only on planes and at church. She does not when in groups of 10-20 people. She is fully vacc’d and boosted
Up until recently I’ve either lived alone in our condo, which is actually in the area I’d like to move to. Or I mask at home and sleep in a separate bedroom.
before unmasking around my wife, I’d wait for her to mask always for various periods then have 2 negative tests. This makes her so resentful.
So this week I’ve unmasked at home around her without the wait period and negative testing on my wife’s part, just to keep the peace
So it’s hard to calculate risk for me. I’m an MD and have studied CoVid research extensively. In some of the early studies, it appeared that the risk of asymptotic or pre symptomatic immuno competent individuals like my wife, transmitting CoVid to me was identical whether or not the infected person was or was not fully vaccinated.
I’m not finding much about this type of research of late. It would seem logical that a vaccine may decrease the length of time my wife would be contagious with her fully vac/boost status???
What are your assessments about my fully vaccinated and boosted spouse who only wears a mask in large groups, and not in small ones, transmitting CoVid to me?
That’s about how my wife and I handle it - your second “keep the peace” scenario. I don’t think I can expect her to cloister, and I don’t want to live separately.
We emphasize in our household that if you feel ill, get it checked.
Kids got all their initial vaccinations and boosters but we are not renewing, as their own risk/benefit is marginal at best. We don’t ask them to mask in peer settings. I recognize this is a risk, but I balance that against social costs to them and am OK with that.
Implied in my thinking is the idea that asymptomatic individuals likely don’t shed enough virus for me to really worry given I have Evusheld and whatever partial protection the vaccines confer. That may be a bad assumption. It has worked OK so far though.
Mostly, I just minimize my risk with things under my control while also balancing social / spiritual / professional needs. These things are all on a continuum. People fall into thinking that if they make one slip their odds go from 0 to 1. It’s more like .03 to .04 or whatever. I try to remember that.
Don’t want to get too much into detail on a public board, but a lot of risk strategy and assessment work on top of a comp sci and professional gambling background.
Scryer99 is a cool handle (I think you might remember handles from the era of CB radios)
Reminds me of the names of 2 ski lifts, one in Utah and one at Squaw Valley which I think was renamed?
Thank you for your input. and perspective. I particularly like the odds of dying numbers. I come up with about 1 in 10K-200K for every carefully chosen unmasked encounter I have and it is good to remember that!
Balance is my wife's favorite word and as Covid has dragged on soooooo long, and I have done everything possible to protect myself from dying of Covid, it's time to live with a little more risk. At some point, spending what time I have left living in fear of dying of Covid is not really living.
Thx again for the reminder!
skipro
or maybe snowshoe (snowshoe mike is my real nick name by the way)
A scryer is a fortuneteller - I've done tarot readings as a side gig. The 99 is mostly from an old Big Audio Dynamite tune. And I do enjoy skiing, though I haven't been to Squaw in years.
I figure even if you are living with an active COVID case in your house the risk of catching it is only 15%. So most situations the risks are pretty minimal - outdoors, in large buildings like grocery stores, etc while wearing an N95. Statistics on airplanes are actually quite good.
There's a few restaurants I won't set foot in because they are cozy and romantic and not well ventilated; others I'll go off hours or sit outside. I don't do gyms or karaoke bars or concerts... bar life in general is much reduced. I mask up most indoor places as it's an easy thing to do. I entertain a lot outside.
Socially I'm fine with it. Professionally it's more of a challenge but not much I can do about that.
But yep, quality of life matters. I have kids and a great marriage. Damned if I am going to hole up completely. That is not how I want them to remember me, or how I want to spend time left, if things were to go south.
I like your 15% risk of infection in the household with an infected person statement. I haven't seen this published anywhere so I won't share it with my husband. I am the CLLer with COVID, currently day 10 and still testing positive with the home antigen test. I am isolating from my husband for the recommended 20 days that immune-compromised people are predicted to continue testing positive. I have read in this forum that some CLLers test positive for even longer with antigen tests.
IMO, we with CLL are more vulnerable to COVID infection, considering the spectrum of differences among us determines our individual risk. I still have no B lymphocytes from obinutuzumab treatments in 2021 so I know that I am very vulnerable to contracting COVID, and did, at a large family wedding that I attended in northern VT 2 weeks ago. I wore my well-fitting medical grade N95 respirator while indoors and I was the ONLY person masked. I assume that I picked up the virus while outdoors since I conversed unmasked on that patio with the one person who tested positive, post event, one day before me. Sneaky, stealth, omicron virus! I got very sick very quickly, despite having my 2nd round of Evusheld 30 days prior to the wedding. I hate to think about how I would have faired without the Evusheld onboard. I also had 3 Pfizer vaccines but I know that my B cell depleted state prevents me from making antibodies myself. I am recovering well after receiving bebtelovimab on day 1 ( day zero being the 1st positive test day).
I urge everyone with CLL to take precautions appropriate for them individually this winter. The newer variants quickly spreading now evade all treatments except paxlovid.
Thank you for the link. I noted that the article states that some statistic found that spouses can transmit the virus at 43%. And also that transmission can be naught if quarantine practices are followed.
I have felt horribly for about 5 days, achy, tired, and sort of like a head cold but instead of congestion, a burning sort of feeling in my nose and frontal sinuses.
I have had 2 neg home tests but not sure how accurate these might be.
I've heard of loss of smell but not a burning sensation. did you have anything like this
Skipro, I recommend that you get a PCR test. Urgent care centers and many drive-thru pharmacy chains offer these. While the home tests are quite specific for COVID antigen, they suffer from poorer sensitivity than PCR tests. I have also seen others post questions on the ability of our current home tests to pick up the newest variants. Your symptoms could be from COVID or from other common pathogens. A COVID test will help you to determine that.
Individual symptoms vary amongst individuals. I did not experience any burning sensation in my nasal or sinus passages. My symptoms began with a scratchy throat (annoying but tolerable) for the first 36 hours, then turned into a very bad sore throat, hoarse voice to eventually laryngitis, cough, low grade fever, and small amount of pneumonia in one lung. I did not have achyness nor loss of taste or smell.
I am feeling better, now like a common cold with lingering cough and runny nose. I hope you figure out what is ailing you so that you can treat your symptoms appropriately.
People may recover from Covid-29 even though they have CLL. However, a lot of people are going to get long Covid which in many cases causes disastrous effects on their lives. People with hematological disorders tend to get the worst illnesses following SARS cov 2 infection. They have the highest mortality rate in general. So, if your main Justification for going out again is because you can’t stand it, you, and your family, will probably suffer the consequences. #Covidisn’tover
A truly tough choice between my marriage and ravages of CoVid but after 2 1/2 years I’m going to forget about my marriage, stay safe and try to get along the best I can on my own.
All the stress and mistreatment is worse than CLL, chemo and prospect of living alone
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Anyone thinking to postpone rituximab doses until Omicron wave is over?
My COVID experience has been pretty easy with Test-to-Treat
Do I go back to the main stream Covid vaccines now that my V+O treatment has ended?
Post Covid Vaccinations
