How do you deal with a family member wanting to visit you at Xmas when you are on immunotherapy with low immune system? Is a flow test good enough days before the visit is they isolate themselves? I know my answer but would like to know your comments please. X
Refusing to have Covid jab: How do you deal with... - CLL Support
Refusing to have Covid jab
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Larkfield-UK
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lankisterguyVolunteer
I would be wearing my N-95 / FPP2 mask the entire time I was in the same room / house with them. No eating & drinking while they are there. I would have my forced air furnace with HEPA filter running full on, and my portable HEPA fan filter between me and them. I would prefer to be on our sun porch with all 3 sides - doors open to get cross flow natural ventilation. I don't want to breathe any air that they exhaled. The visit will be short and they will NOT be staying overnight in my house- I will pay for a hotel if they cannot afford it. -
Len
I agree whole heartedly but suppose I just wanted to hear someone else say it, thanks for your response. X
I would say JUST SAY NO. It is not worth risking your death. If they can’t understand your immune system isn’t working I would say outdoor option only. I am not going to my brother because there are unvaccinated babies and I don’t think I will be able to protect myself and I don’t want to worry the whole time
Hi Len
I know you’ve had several lines of CLL treatment but as you have mentioned your IgG levels have never fallen in the way many of us have experienced. Have you had many infections over the years? Is it possible that your immune system remains robust despite your CLL treatments? It’s such a confusing disease.
I’m struggling with a potential vacation my wife wants to take, my likely return to work in January, my kids being in school/sports and the upcoming holidays to name a few concerns. I read about your cautious approach and I feel like I’m taking way too many risks. I can’t decide if I’m crazy? How long can anyone hunker down in the manner you describe? It’s impossible for me.
On the positive side of my risk ledger I have had only one line of treatment three years ago, no infections to date, three Pfizer shots, Massachusetts is reasonably well vaccinated and I’m in decent physical shape. Negatives: my IgG trends are in the toilet and my SLL was pretty aggressive when I needed treatment in 2018. What is my risk? It’s impossible to assess.
I’m rambling and feel like the walls are closing in with the clocks going back an hour yesterday and winter looming. Darkness at 5:00 is depressing. Fortunately, the days have been unseasonably warm with a fair amount of sunshine.
No easy answers…..
Best,
Mark
Mark, we share many similarities in this respect and my immunoglobulins are also ‘in the toilet’ and have been even before I started treatment. However, my neutrophils have remained robust and I’m at the tail end of Venetoclax having reached uMRD. I’ve had to try and resume some semblance of normal life and perhaps some would criticise me for that. However, it’s calculated risk and I’ve had enough time shut indoors.
It is impossible to calculate individual immune risk even though I know I’d failed to make antibodies to the first two vaccinations.
We all have to assess our own risks and needs based on personal circumstances and for me a life indoors was beginning to be no life at all.
Regards,
Newdawn
Hi Newdawn:
Thanks for your thoughtful reply. As I’ve said many times before, there are no answers for these vexing issues. I’ve pretty much thrown in the towel and I’m hoping for the best. My wife is headed back to the office in January - at least on a part time basis - so that is yet another risk factor I will face. Certainly, we all have difficult situations to contend with in our lives. The bottom line is I feel the tide of normalcy rushing in and it is near impossible to go against it when almost all are choosing to go with it. And who can really blame the average person for wanting to get back to life as it was pre Covid?
I hope you, your husband and your son are doing well and that you are able to stay safe as you adjust to the new normal.
Best,
Mark
Hi Mark,
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I understand your feelings, and wish there was a real answer.
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My IgG levels are normal, and I have not had a bacterial infection since 2010 when I got whooping cough (pertussis).
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My IgA and IgM are low, and I have a drug resistant HHV6a viral infection and get fungal infections quickly. So I think I am susceptible to viral infections like COVID-19. But my 3rd Pfizer shot did give me >2500 spike antibodies, so my risk may be lower than most on continuous targeted treatment.
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Throughout my career I worked in dangerous heavy industrial environments and even today when I walk near construction (even residential ) I feel naked without safety gear. When I worked in plastics and pharma around dusty materials, an N95 became part of that safety gear. So fitting and wearing a mask has become my normal and I wear it whenever I leave the house, and put it on also when anyone (cleaning lady, HVAC technician, handyman) comes into my house.
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So except for my wife, if anyone is in close proximity around me, I reach for my mask ( I usually have it within reach all day, or hanging on my belt if I am mowing the yard, etc.)
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We are attending outdoor events, one or more every weekend (craft fairs, car shows, outdoor concerts, botanical gardens, etc.). In most cases I am the only one with a mask, but it is my first line of defense, and I would likely be as uncomfortable without a mask as without pants.
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I skipped a lunch with my wife's friends yesterday at an outdoor site in NYC, since one of her friends had a "cold". If it had been one of my children, grand children or great grands I probably would have done the same, but it would have been a much harder decision.
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I hope some of that is useful for you.
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Len
Hi Len
Thanks for filling in the blanks around your infection history. I admire your knowledge, discipline and your always insightful advice. I’m glad you have able to get out and about recently. I have done the same but for the next four to five months those compromise activities are going to be few and far between given the weather at a time when many will be rushing back to normalcy. I can’t tell you the number of people that have asked me to meet for a drink or dinner recently. It’s exhausting trying to make excuses.
Nobody said it would always be easy and I’ve lived a pretty charmed life so I can’t complain too much. I’m hoping to get through the winter infection free and I suppose if I don’t perhaps I’ll qualify for IVIG. There is always a silver lining as they say!
Be well,
Mark
I know the felling Mark. My grandkids and son have been spending every other weekend at my house since he is going through a divorce and lives three hours away from them. We have been taking that chance in order to help him out. I feel pretty safe with him because he is a combat medic in the Army, but it is the kids that go to day care and kindergarten that we have always been worried about. Of course they are too young to be vaccinated and could have COVID with no symptoms.
On top of that, I returned to working in the office after a year and a half of teleworking. I felt safe there at first because I work on a US Air Force base where everyone had to wear a mask. This Monday the base decided that mask were no longer mandatory. I still wear my mask, but just about everyone else does not. I guess that life must go on so I will have to take that risk. I won't be old enough for social security retirement for another 11 months so I have to stick it out for a while longer.
We all have to way out the risks and decide which ones we are willing to take.
Chris
The way that I protect myself is by using a nebulizer with half saline and half peroxide. All viruses and bacteria get in thru the nose. So whenever I am around anyone, I use it.
L,
I am not as vigilant as lankisterguy I believe that whether you are vaccinated or not, you can catch and pass the virus on.
That said, all house guests are required to get get tested 3 days prior to arrival, isolate and then tested again upon arrival.
It’s a calculated risk but so is daily life these days.
Jeff
Very true. The person is actually our daughter and does not take precautions, consequently she had covid weeks ago. We are not letting her visit now or Xmas day due to her own stubbornness unfortunately for her she will spend it alone. X
L,
As she had Covid recently, she should immune for a few months. Between her recent infection and testing her, to be able to visit with my child is a risk that I would take.
But still she must agree to be tested.
Jeff
in reply to Justasheet1
Many agree that natural immunity is far superior to the weak protection these mRNA treatments offer. Getting a booster shot every 6 months is absurd.
mantana in reply to
> Getting a booster shot every 6 months is absurd.
Why is it absurd to get a booster vaccine for an illness often deadly to healthy people -- and almost always deadly to immunocompromised people?
SunnyDowntown, Further to Mantana's question to you, many may agree, but what it the evidence? This article goes into this:
sciencebasedmedicine.org/na...
"Of course, vaccine-induced immunity is every bit as “natural” as immunity acquired after recovering from COVID-19, with the advantage that vaccine-induced immunity doesn’t require you to suffer through the disease and be at risk for the complications, long term disability, and death that it can cause. Otherwise, it uses the same “natural” processes that the wild-type virus does."
With respect to your reply that "I'm sensing there's a lot of misinformation & propaganda on these medical forum". That's conjecture on your part, with no supporting evidence. Jackie/JM954 has given you an excellent answer.
With respect to "You're more apt to catch COVID from a vaccinated person. Depending on where you live, the statistics are beginning to show the vaccinated are now the majority of cases, hospitalizations, & deaths." Given vaccination rates are now typically in the 80% region, 4 out of 5 people are likely to be vaccinated, so there's a 4:1 factor right there. You haven't provided a reference to your assertion, but I'm reading plenty of reports that hospitalisations and deaths are far more likely among unvaccinated than vaccinated folk, with the latter having milder infections and much less likely to be hospitalised, despite outnumbering unvaccinated folk several fold. With respect to myocarditis, yes there is evidence that this can be a side effect, but it's mild and short lived compared to the risk of far more serious myocarditis from a COVID-19 infection, which also lasts much longer.
You've also commented on speculation about California Governor Gavin Newsom. Even if true, that's anecdotal evidence and says nothing about the relative risk of vaccinated risk vs risk without vaccination vs risk with a COVID-19 infection.
In future, please provide references for your assertions in accordance with this community's endeavours to be evidence based.
Thanks,
Neil
JEEA in reply to
Further on the question of natural immunity and the vaccine and booster, Professor Tim Spectre of Imperial College in the UK runs the Zoe Covid study. He has found that the vaccine after having Covid "cuts the chances of catching COVID-19, reduces the likelihood of being seriously ill or hospitalised if you do get it, and also halves the risk of developing Long COVID.
Even so, some people still prefer to rely on natural immunity, instead of getting vaccinated. However, our latest analysis shows that a previous COVID-19 infection and being double vaccinated gives longer-lasting protection than vaccination or natural immunity alone. " Certainly in the UK, the people in ICU are nearly all unvaccinated and often young.
While of course there can be risks from vaccine itself, these risks are less than catching Covid. covid.joinzoe.com/post/do-i...
"The ZOE COVID Symptom Study app is a not-for-profit initiative that was launched at the end of March 2020 to support vital COVID-19 research. The app was launched by health science company ZOE with scientific analysis provided by King’s College London. With over 4 million contributors globally, the Study is the world’s largest ongoing study of COVID-19 and is led by ZOE Co-Founder, Tim Spector"
newyork8 in reply to
Scientists disagree.
Vlaminck in reply to
I have read the opposite.
Presumably you’re not applying this comparison to the immunocompromised? It’s untrue enough for the non immune compromised but absurd for the members on here.
Newdawn
Astro617 in reply to
Just because many agree doesn't make it a fact. A recent study showed that vaccination is better protection. cdc.gov/media/releases/2021...
in reply to Astro617
100% agree, but the same could be said of a study.
nvrbeold62 in reply to
“Many agree” - as if that means anything.
Wouldn’t that be awesome if we could have all the things that many agree on actually be real? Social media could define all of our new realities and we could all just be so happy!
Please stay vigilant, in my small area in the USA, I have heard of 4 deaths of non-vaccinated individuals in the last month😭All related to people I know. They are carriers of this disease before they show symptoms.
As hard as it is, my doctor told me to “be a hermit “ and I have chosen to follow his advice. I am NOT saying it is easy, but as we are still in a pandemic, I tell myself to stay isolated. My really good friends keep calling me and text me to please stay isolated as they love me and don’t want me to die. This is just my experience and I truly understand each of us are different and can make their own informed decision.
Is it fair to assume that they are also not covid aware when out and about if they won't take the vaccine. If so the risk is higher because higher probability of becoming infected. Lateral flow test is only applicable to the time it is taken, certainly possible symptoms could show the day after a negative test.
Hard as it is I would tell them to stay away stating reasons. If they don't want the jab your at liberty to refuse them entry into your home. It's your life you're protecting and you are as free to keep him away as they are ti refuse the jab.
The jab doesn't guarantee freedom from infection but reduces the risk which is the important fact.
I agree. The jab doesn’t mean you cant get Covid but it does mean you have taken precautions and done the right thing. I just dont understand people refusing to take the jab. X
I do not see mention of the fact that many CLL patients do not mount as high of an immune response to the jab, that binding antibody tests to the S protein can be done but these are not the same as neutralizing antibodies and therefore there is no known value that definitely confers immunity although a level of 1000 on binding Ab test seems to correlate with adequate neutralizing Ab in the comparative studies so far.
in reply to Larkfield-UK
It's been reported that California Governor Gavin Newsom was hospitalized from the COVID booster shot, suffering from Palsy. This is the reason he was unable to speak at the Climate Summit. In America, major celebrities are against the mandatory COVID shots. Professional athletes are dropping like flies. The UK seems to be isolated from what's going on in the world.
Vlaminck in reply to
don't like the right wing (often wrong) political posts. "It's been reported" only means you've just reported it. Nothing more.
in reply to Vlaminck
it's been reported, a recent study indicates, the evidence overwhelmingly suggests, 3 out of 4 dentist surveyed - these are popular phrases used in marketing and propaganda.
SunnyDowntown,
Admin have indeed taken a ‘light touch’ on these postings but this particular post in which you use unsubstantiated but sensationalist imagery of ‘professional athletes dropping like flies’ has generated more abuse reports from our members than we generally receive in a week!
Please refrain from this kind of click bait comment. It may be dramatic but it has little substance and is indicative of a certain philosophical position that is in serious contrast to our evidence based intent on this site.
The U.K. is most certainly not isolated from the rest of the world in terms of our understanding or efforts to contain the effects of this virus. We have one of the highest death rates in Europe and it is only the efforts of the British people and our robust vaccination development and application programme which has contained even greater loss of life. Deaths now are largely amongst the unvaccinated. There have been management mistakes as with all countries but complacency and isolationist attitudes are not amongst them.
Newdawn
in reply to Newdawn
You're wrongly claiming deaths are amongst the unvaccinated because you're including deaths from the large period of time when there was-no-vaccine available, when the majority of deaths supposedly occurred. Remove deaths from that period of time, then get back to me.
Astro617 in reply to
Here's a report over death rates in Texas for the month of September. This one shows death rates of unvaccinated even higher than the reported national averages. One might question one study, but when many studies show the same results, I believe that is reliable information. kut.org/covid-19/2021-11-08...
Vlaminck in reply to
Sorry, but no, SunnyDown. NewDawn is totally correct. Most deaths are of those unvaccinated. And I'm speaking of now. These days. Filling up the hospitals, the unvaxxed. Black and white statistics clear as day. No confusion.
francc in reply to
LOL.
Perhaps they refuse because it has not been convincingly proven to work, nobody really knows what all is in it, there are many side effects and deaths reported after it - for starters. It is not a typical vaccine with an attenuated version of the actual pathogen but rather mRNA coding to produce Ab to the S protein. There are more questions than answers with this entire pandemic.
Thank you CLLmoxie, for highlighting why many refuse what could be life saving vaccines. I suggest that's because they are forming their opinions from sites providing misinformation rather than evidence based sites.
Per your points:-
- because it has not been convincingly proven to work
I consider that there is now overwhelming evidence from reputable sources showing that vaccinations greatly reduce the incidence and severity of COVID-19 infections.
- nobody really knows what all is in it
"Here is a breakdown of the three COVID vaccines and their ingredients:"
portal.ct.gov/Coronavirus/C...
- there are many side effects and deaths reported after it
Again, sources of misinformation commonly misuse data from VAERS and similar reporting systems. They ignore the comparative rates in unvaccinated folk, use emotive language and other techniques to frighten the undecided. If you look at the bigger picture, there has been a huge number of deaths from COVID-19, so much so that the average life expectancy in the USA has unprecedented dropped by 1.5 years, primarily due to this pandemic:
cdc.gov/nchs/pressroom/nchs...
Certainly, due to the impact of CLL on our immune system, we are a special case and vaccinations generally don't give us the same degree of protection afforded to healthy folk, but the potential reward from vaccinations is still considered to outweigh the risk by CLL specialists.
Neil
in reply to CLLmoxie
How is an intelligent person supposed to make an educated decision when the manufacturers still refuses to identify the synthetic amino acid or derivative used as the mRNA? For all we know, it's a mysterious chemical that could be used as an herbicide. Before someone corrects my use of "an" - remember the American pronunciation of the word "herbicide"
nvrbeold62 in reply to
I think correcting your use of the word “an” is the farthest from most people’s minds when they read your posts. 😂
Every vaccination comes with a risk but one far far smaller than the risk from what it protects against. These vague assertions of "athletes dropping like flies" and isolated cases of high profile people having severe reactions are typical of the anti vac rumour mill. They should always be balanced with the benefit of billions of people having even partial immunity from their vaccination without severe side effects. When anti vaxers speak of millions of people having side effects, that is inclusive of sore arms which reasonable people take for granted. But it scares people.Every gesture which diminishes the greater risk is a good thing. There are extreme but statistically tiny risks in everything we do. Concentrating on the slim chance of an extremely improbable disaster is not a realistic way of getting through life. So it is with all medicines. When millions choose to ignore the science they put the vulnerable at heightened risk.
Of course...there are risks with any vaccine. There are risks everywhere. There are risks NOT taking the vaccine and those are surely greater. And now we are learning about Covid's risks to the brain. Most of us have enough brain issues and personally don't need Covid's. 😨 news.yahoo.com/column-one-d...
in reply to francc
Enlighten me. This is the first I've heard that COVID causes brain issues. And that leukemia causes brain issues.
A large study found that 4 of every 5 patients hospitalized with COVID-19 had neurological symptoms. (The study analyzed health information from 3,744 people who had been hospitalized with COVID-19)
covid19.nih.gov/news-and-st...
Neurological effects were extremely common, appearing in about 80% of patients who had been hospitalized with COVID-19. The most common symptoms reported by patients were headache, which affected 37% of participants, and loss of taste or smell, which affected 26%. The most common neurological problems observed in patients by hospital staff were acute encephalopathy (affecting 49% of patients), coma (17%), and stroke (6%).
SunnyDowntown, while many of us suffer from CLL related fatigue, a far more serious development with CLL is when it enters the central nervous system. Due to the difficulty of getting treatment drugs through the bloo-brain barrier it can be rather challenging to treat, with ibrutinib being one treatment used. Yes, we have had members have reported this happening to them.
Neil
You have to be brutally honest.... If you'd rather that they didn't visit, explain that to them..... If it were me, I'd understand, and respect your wishes..... Be honest, be firm.... It's your life....... Have a happy Christmas.... 🍻
in reply to MistyMountainHop
I'm sensing there's a lot of misinformation & propaganda on these medical forums. One might think the moderators are picking and choosing which comments are seen in order to create a false sense of census.
peghip in reply to
I don't think your assertion about censorship is correct. Your earlier postage instructions vaccination is still in place.UK prime minister Disraeli said there are lies, damn lies and statistics. One has to be careful how we interpret statistics. If there are a large proportion of the population vaccinated a high proportion deaths wi be vaccinated. There are always side effects, the question is how do the proportions relate to each other.
Here in the UK we have a good press core and they are not raiding the concerns you have stayed, there would be a number of reporters looking to make a reputation if they were.
We all have concerns about this virus/the vaccines and there is much that is unknown as yet. However, we do know that the vaccination programme has dramatically reduced hospitalisation and deaths. Side effects are rare and unfortunate but that is true of any vaccine or treatment and, as always, it's a risk/benefit assessment for each individual person to take.
For the vast majority of people, the benefit is on the side of having the vaccination and boosters.CLL patients are in an almost uniquely disadvantaged position and most will adopt the measures advised to keep themselves safe. This will almost certainly include masks, meeting people outdoors and also vaccinations, despite our generally poor response.
The moderators monitor this site carefully for mis-information but we adopt a light touch wherever possible and especially where there is uncertainty. We make no apologies for asking for peer reviewed references (not journalistic articles) to support whatever assertions are made as we are an evidence based site.
Your comments, which are probably out of consensus with the majority of thinking, have been allowed to stand and people will make their own assessment of what you say, hopefully with the advice of their own doctors.
Jackie
Thanks Jackie for articulating this. Our ITU consultant neighbour informed me our local hospital is at capacity with Covid cases. Majority unvaccinated. And younger. Many sick, ITU at capacity. Staff on their knees.
Jig
So sad when it's unnecessary.
The impact on their lives, their families lives and the lives of people who are frightened, living with illness or pain, who cannot access the NHS because of them is enormous.
Jackie
It's difficult to go by at capacity when most of those beds might not be available due to staff shortages. I got seriously sick in may 2021, and had to go into the hospital from the ER. There were only 2 hospitals in the state with beds available in a state with a very large population. This was not due to the number of people being admitted, but instead, a shortage of hospital staff.
And a major driver of "staff shortages" are those who died of Covid, and those who quit/transferred because one can't work 24/7 for months on end, let alone several years. I currently have limited availability of appointments to see my hem-onc, because they have to cover in the main hospital at least one full week a month, where the beds available are full of mostly unvaccinated Covid patients.
in reply to Jm954
Please remember that only around 50% of the USA remains fully-vaccinated. The vaccinations have slowed to a crawl. COVID tests are being rationed out almost exclusively for the hospital ER, which would account for the lower case counts in your country (if the same is true).
Vlaminck in reply to
I do understand that if you only listen to certain limited "trump" news sources, you may feel the facts shared here are propaganda.
in reply to Vlaminck
I suggest that everyone turns off their television and seeks out the raw material & source data to make their own conclusions from their own personal analysis of said raw material & source material.
Vlaminck in reply to
Do you know all the raw data on tetanus vaccines? Whooping cough vaccine? Measles? Of course not.
nvrbeold62 in reply to
I’m clearly a week late to this party but I might still suggest that a medical forum is probably not very compatible with the information sources that are most likely to influence you. TikTok and Facebook communities will probably feel a lot more at home for you. There you will find that ‘many people say’ and ‘it is often reported’ are good as gold. Here, you will run into one annoying citation of actual data after another that will just take all of the fun out of it.
It’s not just about the vaccine, it’s about a certain attitude that refuses to take COVID and “others” seriously. Yes, vaccinated people can still spread covid, but if they are very careful they will not be around lots of people with the attitude that Covid is no big deal.
If it were me, and given your medical condition, I would keep all people away who don’t religiously take proper precautions. Forcing them to test prior to visit is not enough.
You are definitely doing the right thing.
This needs to remain a personal choice and not mandated!
Like all the vaccines kids must get to go to school, without any objection, you mean? Do you think they should be personal choices?
First, I don't believe younger kids should be required to get the jab. The parents should be able to decide for the older children
in reply to MyCLLJourney
In the US, statistics show those under 20 have almost zero danger of hospitalization or death from COVID. Statistically, with rounding it's 0%. Remember that the brand new, mRNA vaccine does not prevent a person from catching or spreading the disease, so there is no such thing as herd immunity with the brand new, mRNA vaccines. Perhaps Herd-Protection is a thing?
in reply to Vlaminck
When we were children, we got traditional vaccines that conveyed true immunity that lasted a long-ass time, that were meticulously tested.
My daughter’s boyfriend has been on a no-visit restriction for a while, and finally gave up and is getting vaccinated. Your situation is tougher since it is your own family member, she is putting you in a terrible spot IMHO.
She ought to understand and respect your needs. Personally I'd not be overly concerned but would appreciate, if I was you, her not mixing so much in the days before she comes and testing before arriving. Thats not to much to ask, she ought to want to settle your concerns and it takes little effort to allow you to have a great family christmas.
Difficult question. Heart v Brain. At least you know your family member is unvaccinated. And are able to make a choice. Should we all ask this question of any visitor?I read this recently about Covid being spread vaccinated v non vaccinated
theconversation.com/your-un...
Take care.
The medical community was clear from Day 1 that the brand new, experimental mRNA COVID treatments often referred to as vaccines don't prevent a person from catching or spreading the virus. The general understanding is that the COVID vaccine is supposed to reduce the severity of the symptoms, much like injectable NyQuil, or other Cold & Flu medications. You're more apt to catch COVID from a vaccinated person. Depending on where you live, the statistics are beginning to show the vaccinated are now the majority of cases, hospitalizations, & deaths. Data out of Ontario, Canada will open your eyes. For the younger people, myocarditis is a serious side effect that has emerged. One just needs to research professional sports to see the issues that have emerged. The governments made it mandatory because (as a whole) the medical community wasn't recommended it to their patients. I for one have seen 4 different doctors in the past 18 months. # of those 4 doctors I've seen 3-4 each. Here in America, none of my doctors have recommended the COVID vaccine. Both my parents spoke to their doctor about getting their COVID booster shots. Their doctor did not recommend the booster, but if they wanted to get it he couldn't do anything about it.
Vizilo in reply to
Data from Canada, with one of the lowest death rates from COVID, is that a majority of cases are from the 15% who are unvaccinated. In Canada now, more than 85% over the age of 12 are fully vaccinated. Further, a majority of ICU admissions and COVID deaths are from the unvaccinated. How much more proof do you need?
No amount of proof will work -- will be viewed as propaganda if not heard on Fox.
V,
Are any news source believable anymore? The World Health Organization, FDA, CDC have also issued contradictory info over the last two years.
All we need to do is what’s best for ourselves and our families and let natural selection sadly handle everything else.
I wish I knew that the vaccine did it’s job for me as my wife and I have had the vaccines and the booster but I think it probably let me down.
I gave up on giving advice to even my closest friends and family about the shots.
I control what I can. Tomorrow, I will welcome my niece, her cousin and my wife’s friend to stay with us for a week.
Everyone is double vaccinated including us. I still asked them to get tested. All 3 of them were PCR - as of yesterday and now are isolating.
Tomorrow, they will get a rapid test and presumably after, we will all have a great time.
Everyone else will have to fend for themselves as I have come to peace with that reality.
Jeff
I getcha, they all make mistakes and, during a certain period of time, CDC at least once modified language for politics. But I place my bets on those speaking with a scientific background and lots of researchers, especially where there is a scientific consensus. Still not foolproof, but I figure it's much better odds than a hired TV doc or stuff from facebook. And yes, have a couple non-vaccinated friendly acquaintances, but decisions made and reasons for them do affect my level of respect for some people. All in all, except for unusual conditions and circumstances, I rather feel it to be a societal duty to get vaxxed in this war on Covid.
Those are sensible precautions. Enjoy hosting visitors!
in reply to Vlaminck
or CNN, or BBC
Please produce authenticated and scientifically reliable evidence for this assertion you make;
‘You're more apt to catch COVID from a vaccinated person. Depending on where you live, the statistics are beginning to show the vaccinated are now the majority of cases, hospitalizations, & deaths. Data out of Ontario, Canada will open your eyes’.
Newdawn
SofiaDeo in reply to
The medical community was clear from Day 1 that the mRNA technology was not "brand new", had been under investigation about a decade, was being tooled for other vaccines, and consequently (fortunately for us) was able to be shifted to Covid-19 quickly. There have been numerous links to this; I have posted a few myself.
To repeat what has been posted numerous times, and is available in numerous MEDICAL textbooks/information sites, vaccination does more than reduce symptoms. Vaccination also reduces incidence of disease. We have always known that vaccines unfortunately cause a number of (sometimes serious) side effects, but the overall decrease in morbidity and mortality is the reason a number of vaccines are used.
There are indeed a few, specific disease states for which doctors don't recommend vaccination. Perhaps you are one. I see from your profile that you have no information, so I can't comment as to why your docs aren't recommending vaccination. It sounds like you have other disease states, with seeing 3-4 different docs in the past 18 months.
I also think it's interesting that you (3 years ago) were posting "why isn't everyone using EPO for symptoms, I have been reading about athletes doing it a lot" (quite illegally/off label, I will add) even though there is a Black Box warning due to serious side effects: drugs.com/sfx/epogen-side-e...
yet you think it's wrong to use a different drug (Covid vaccine) to prevent death.
However, it's good to constantly "question" things that have potentially serious consequences, and with regards to Covid vaccines, IMO it may turn out that the "higher dose" ones like Moderna will eventually not be recommended as much as the "lower dose ones". Or the high dose will only be for specific patient populations. This cardiotoxicity that is starting to be reported may turn out to be a dose-related side effect. "More" of a drug is not necessarily "better." Moderna has much more vaccine material than the other brands. Until the advent of the Internet/social media this process of approving a drug, getting reports of side effects, then adjusting dose recommendations, largely went on unknown by the public. But it's been going on for decades in medicine. It's how we learn what the eventual "correct" dose of a drug is, not just vaccines but virtually every drug put to market. People just generally weren't aware of it. So IMO the question has become "which vaccine dose gives optimal results with minimal side effects", not "do we vaccinate or not against Covid."
My answer, no thank you.However, this thread is making me feel very uncomfortable as it is providing oxygen to vaccine deniers. We all have opinions and then we have overwhelming scientific evidence in favour of vaccination. Let's not mix them up!
Best wishes to all, Michael.
Good reply, thank you.
ADMINISTRATORS, this thread above has become dangerous. Lots of unsupported anti-vax theories being thrown around and some disappointing unproven statements.
I don't think that many of the people on this forum are that easily led. Most of us have already made our decision quite firmly and had at least 2 if not 3 or 4 shots of the vaccine.
But there is undeniably some scope for different opinions. Surely we are not feeling so insecure that we can't accommodate different views if they are reasonably stated?
Of course, but when people state "facts" without supporting valid documentation, or use non-scientific sites as their "fact source", or use a souce that has been scientifically discredited, many of us will point that out. As well as stress the point: please include links for your "facts" that are valid, science based ones. I think Harvist was commenting on the former. Since SunnyDowntown stated untruthfully that vaccines "only mitigated symptoms" and "did not prevent disease transmission." If there are valid studies showing this regarding Covid and Covid vaccines, we want to see the references. Especially because this was presented as a fact, not an opinion.
Thank you
We've noted the responses made and I'm not sure anyone would have their opinion swayed by the comments. We have replied and will be keeping watch.
in reply to Harvist
I have extensive citations for every single statement, do you?
So why not share your extended citations, so our community can assess the evidence behind them?
SofiaDeo in reply to
Please do share your sources. I can give you a number of mine, but since they are medical textbooks and reference texts, they aren't available free online. I can't just post a link to chapters on Vaccine Development and History. I do have online links in some earlier posts when available, if you check some of those in my profile.
Here's one I did on some of the history of the mRNA vaccines:
healthunlocked.com/cllsuppo....
Another member posted this one, with even more information stating research on mRNA vaccines going back to 1961:
HiI basically have cut those friends and family who refuse to have the jab out of my life. Clearly they don't care about anyone.but them selves , so I won't waste time on them.
When I was having FCR we had no one to visit for Xmas. It was absolute bliss! No stress which is so important, and even now all my visitors must brave the chill under our garden gazebo. We make it fun, heater, blankets and mulled wine, it only lasts an couple of hours because everyone knows they can't use the bathroom. Home is my only sanctuary, the only place I can control in world where every where is back to 'normal'. In summer and infection rates have been low I have been known to let someone sit at the kitchen table with the back door open, but that is rare. I feel the pressure to change but it's not going to happen any time soon. I hope you have a lovely time what ever you decide 😊
You only have one life, i would not invite them , i would explain my situation and rationale. Its selfish for anyone unvaccinated to even have the audacity to suggest a visit and thoughtless to put you at risk.
My sister and brother in law both wanted to visit and stay over. I only allowed them as long as they took a lateral flow test on the morning of the visit and show me proof plus no stopping en route or mixing with others people.
Everything went fine and had a great weekend seeing them both after 18 months.
I would and we are refusing to have visitors of any kind except our immediate two friends. Our family although vaccinated are mixing with unvaccinated people, travelling all over UK and abroad. So whilst we shall miss a family Christmas, we view being alive next Christmas is more important.
If I was in that situation and anybody outside of my usual bubble wanted to come and see me I'd tell them I'll see them outside only and for a short time only. Ask them to have a mask on, same as me.
I would politely decline to allow them to visit.
I don't completely shut myself off from the outside world; I do go to work at my office, for example. There are friends that I'm comfortable having visit, and that we go and visit. But I also take precautions. I'm rigorous about mask wearing and hand sanitiser at work - and as Chief Executive have explained the situation to staff with a quick 'I'm clinically vulnerable' (the advantage of being the boss: no one argues) - and those friends are fully vaccinated and respect my limits.
But an unvaccinated family member who is presumably refusing to get vaccinated, and who knows my status? That's a polite no. My medical need trumps their presumed insistence on their right not to be vaccinated.
I suppose a lot of people on here will think I’m mad, but my 3 grandsons are coming for Christmas and staying a couple of nights this year. Last year was horrible just seeing them on FaceTime and I don’t want that this year, they and their mam and dad are taking flow tests before coming and I can’t wait to spend some quality time with them. I’m on acalabrutinib and have had 3 jabs, my wife and I work and I can’t control who I see on a day to day basis, they may be jabbed or maybe not I just don’t know. When I asked my consultant for advice on this he said it was up to me and to be careful but not paranoid, that was his words so I will be having a nice Christmas with family and not worrying about this damn virus.Dave.
Dear Larkfield. You wrote "I just don't understand people refusing to take the jab." While I often feel the same and support your decision not to see your daughter while she is unvaccinated, it leaves me wondering how this is affecting your relationship with your daughter. I don't know what your relationship with her was like before this, but it sounds like this issue of the vaccine may have created a huge rift between you?
For the me, the challenge is how to keep an important relationship going even when there is a large area of disagreement. When we each feel so strongly about something, it is difficult for us to create a safe space where we can each listen whole heartedly, to really hear the other's point of view. I don't know if you and she have been able to talk without anger getting in the way--you to listen to her reasons (fears?) about getting the vaccine and her, to hear your reasons for being afraid if she visits. I am wondering if she has ideas about how she would want to keep you safe if she were to visit? I am also wondering if you have been able to find out what she will do about Christmas--has she friends who can be with her? Can you 'meet' on zoom --open presents together on zoom, etc.? We did this last year when we were all locked down.
I don't know if you are her mother or her father? I'm curious how your spouse sees this and if she/he is able to talk to your daughter. Do you have other children and how do they see it?
My unvaccinated sister and I also disagree on this issue--but we have managed to reach a place where we 'agree to disagree', and in our conversations we focus on the many things that we do agree on, that we enjoy, and that we love about each other. The initial conversations about this were not easy --but we agreed to set a start and finish time to discuss them and for each to try to listen as much as possible to the concerns of the other. We each tried to paraphrase what we had heard the other say, so we were clear that we understood, and this helped a lot. We had an advance conversation about this --a 'talking about talking' time when we agreed what would work best. As she lives in Canada and I in the UK, the challenge about her visiting me has not arisen.
Good luck in opening up some conversation should you decide to try again.
Hi Jeea, thanks for your response. The family member wishing to join us Xmas day is my daughter, not my husband’s. She is 27 and has a 2 year old child - my grandson, whom I have hardly seen due to Covid restrictions and my husband’s immunotherapy restrictions. Her father has passed away long since and so have both her grand parents and she is an only child. Im afraid to say she has no one to have Xmas with but us. It is hard when you are married and your first obligation is to your partner when your kids are grown up and live elsewhere, but due to the situation I am reluctant to really say she cant come on Xmas day to be with us, but if my partner became ill afterwards I would never forgive myself. I am in a quandary and want to do the right thing. X
Hi Larkfield. Gosh--what a difficult situation you are in. I hear how much you want to support your daughter--your only child-- and see your grandchild who you have seen so little of AND care for your husband. How can you do both is a dilemma.
I hope you can find a way to have a conversation with your daughter about what might be possible to keep him safe and to support her. It sounds like she may be a single parent (?). I hope that she has friends and supports as well as yourself. I am wondering what your husband thinks? Sorry--I'm being very nosy!
We have found zoom a good way to keep in touch with grandchildren far away. You can even read them stories on zoom. We did it weekly. You both get the same book from the library so you can read together.
But my hunch is that it may be difficult to think of possibilities when you are feeling so overwhelmed about this. Christmas puts huge pressures on all.
It's a tricky situation but maybe manageable. We have had family members staying in the house. They know I'm vulnerable and I trust them to comply with house rules. 1. Fully vaccinated other than kids. 2. Negative LF test 3 consecutive days. 3. No public transport or other social mixing environments in that time. 4. Face masks and good ventilation for short term visitors e.g. tradesmen.
As Nancy Reagan once said, "Just say No" to the family member's visit.
Horrible situation. I would be asking them how they would feel if you caught covid off them a died from it. But I am blunt. So are my adult daughters. And they have said to me that they wouldn't live with themselves if they gave it to me. To be honest, unless this family member of yours had a vaccine exemption I would probably say no - or as Len says - not stay overnight, only there for a very few hours etc. If they are family member I didnt like much, I would just say no.
Tbh, I think way things are that others need to respect how everyone deals with this pandemic regardless of your health situation. Not everybody is ready to mix again and at xmas everyone is visiting everyone else and more likely to pick something up. My dad has cll and I've left it up to him what he wants to do re visiting. We cam call at door or if he wants to see kids we will all wear masks but do without the dinner.I do lateral flows before seeing my dad just for caution but when my 9yo had covid in September she had 3 negative lateral flow tests so I'm not sure how accurate they are.
I would just do what you want. If you arent comfortable seeing others just tell them that and explain that you just dont want to risk your health just because its Christmas. They might get a bit huffy but at least you arent worrying about your health. Hurt feelings can always be fixed
I think this is a problem many of us will face over Christmas. We will be flying to Canada for Christmas with family, but made it clear months ago that we would not be in the company of anyone not double vaccinated. One son, who was the only family member not vaccinated, got his double vaccine because of that, however his mate has still refused. It has been made clear that he will be welcome at family gatherings, but she will not. Meantime, I'll still take full precautions with mask, etc.Dan
in reply to CCgroup
There are those who speculate that the unvaccinated family member is more apt to get sick from the vaccinated. Have you considered he or she remains unvaccinated because her or she doesn't want to be around you?
That is a very spiteful and cruel comment. We support each other here and I suggest you read the posting guidelines before you respond any further to any post.
Here they are
cllsupport.org.uk/informati...
Jackie
Larkfield-UK in reply to
Not a very nice comment but I forgive you.
its so hard to know how to be completely safe. Keep in mind the vaccine does not prevent one from getting covid and vaccinated people still spread it. So all folks should take necessary precautions. The vaccine helps lesson the symptons and improve survival rate. If you had covid, getting the vaccine does not double your antibodies. If it was me, if possible I'd keep the number of guest minimal, and probably masks, hand sanitizer, serve meals instead of passing the food around. and other common sense things for prevention and to make you feel comfortable. We should be kind to each other and respect the individual requirements for being together. Its so hard, and the world has changed. You might just have to pass on visits this year and find another way/time to be together in an outdoor senario. best wishes ❤
“Sorry dear, my doctor will not ok me to be in an enclosed setting with un-vaccinated people. I asked. And I also want to enjoy my holidays at home without having to wear a mask at home. I’m sorry I’m sure it will all be better someday and we can visit then. Let’s think about another time maybe outside, at a café or another setting where we are not enclosed. That should be easier. I hope you have a lovely holiday season, merry Christmas and happy new year”
I think you have a few options. The relative has to be fully vaccinated and you could ask that a mask be worn inside or not. Request that the person have a Covid test the day or two before the visit. To be most protected, you can visit outdoors. My Dana Farber team told me I could go to live indoor theater where vaccination and masks are required, which is more risk than staying home. In Boston, where I live, theaters are requiring vaccinations and masks and I believe are not serving food or beverage so masks aren't removed.
Basically, it's how much risk you want to take. I don't eat inside restaurants nor go to sports events. But, I do go shopping occasionally with a mask and workout in a gym with a N95 mask.
Larkfield-UK,
Let your Yes be Yes and your No be No. Leave the dramatic reactionary responses to the the drama team. Everyone should respect your decision, as it is you who are living with CLL.
Those who love will understand. Those who do not understand, you will need to love them more.
JM
Your answer to this situation is same as my wife’s, as we had similar visiting situations. My stepson and his wife (and our 2 grandgirls), were contemplating getting vaccinated (or not) n yet had invited us to very large indoor celebration gatherings at their house (with family and many friends) thru-out pandemic, even before vaccines were available!
We said no to the party gatherings invites. Both my wife and I are immunio-compromised, so it was the right decision. Avoid large indoor crowds n unknowns whose vaccinated or not? A flip visiting situation versus yours, but similar vaccination scenario n risks.
Then … they recently got vaccinated, so our visiting situation has eased-up. We now see them in outdoor settings since grandgirls havnt been vaccinated yet but are soon to be, when it’s available.
You did the right thing standing-up for your spouse. Hopefully, someday you can work this issue out with your daughter. It’s a tough time, so many of us are going thru your type of story and navigating it the best we can, weighing the risks, etc. Take care.
I am in United States and I am watch &waiting with CLL and I game taking all 3 vaccines. The last was the booster. I stay away from going around people to eat or most places I wear a mask 😷. I love my husband but I am aggravated with him cause he works around people and hasn’t even taking the Covid vaccine. He is scared of it as a lot of people are. I think it’s silly and I don’t want to die because of-someone else’s fear and stupidity.
I know this is rough, but I would say “no, you may not visit me until you are fully vaccinated”.
I think we have opportunities like this to educate folks who mean well but don’t get it. By saying no visit with no vaccine, and explaining the risk we have and the unarguable benefits of vaccine, maybe you’ll change the mind of someone who is misinformed. I don’t envy your spot! But I grow increasingly impatient with those who depress herd immunity and keep us trapped with our legitimate anxiety. Happy holidays❤️
We are honest with friends who refuse to get vaccinated. We dont allow them in our house. They have made the choice not to vaccinate and with that choice comes consequences...
Diagnosed in April 2018, I immediately started monthly IVIG. I felt great and wasn't sick once for the next 20 months. Then came Jan 23, 2020, when I developed a septic prosthetic joint infection, seven years after my initial surgery. Immune compromised means immune compromised and I think that many of us who feel fine underestimate the extent to which our immune systems no longer function optimally. I sure did. Death from infection is pretty horrible. Only you can weigh your risks vs the benefits.
As long as they wear masks and you keep your N-95 mask on, keep your distance, it might be ok. I would just say no. It's not worth the risk.
I would say no visitors that are unvaccinated out of respect to your immunocompromised state. Family should respect your decision. If not, then they have the choice of getting vaccinated if they want to see you that badly during the holidays. I had read that We with CLL have a 30 Percent mortality rate if we get COVID. That is a risk I’m not willing to take. I’m not sure if that percentage still holds true at the present time. I wouldn’t and don’t care who gets insulted because of my decision. If they really loved us, they would understand. We only get one life and it’s not worth the risk. Would you even enjoy their visit if they came unvaccinated? I would be too filled with anxiety to even enjoy their visit. Please Let us know your decision. Take care and be well.
I asked my oncologist if a Hepa filter would keep the COVID germs away. he said there is no Hepa filter strong enough to do that. I am very immune suppressed after 10 years of fighting NHL. I have had all 3 Moderna shots as had husband. I get IVIG every other month and take Valtrex . If that was my family member, I would say “ come AND if you are not vaccinated, I will greet you outside only, from a distance and while you and I are each masked. I had to do that with relatives from Arizona who came to visit others and none were vaccinated. I even got shingles one month after my CAR T. I was exposed to a virus there and that was miserable. I just don’t want to get anything else.
I feel your pain…I am in that kind of situation also. No one in my family is vaccinated and they refuse testing and masks. Last year my husband and I refused to gather at the holidays. I was chastised for choosing to not be with my family. Now they are asking if I will be having Thanksgiving dinner and Christmas brunch and if so, they will not be wearing masks. I feel like my whole family is on another planet and I am the one who is unreasonable…so then I start to question myself. Last year I was without family but thought it would be just one year. Now we are facing the same situation once again. I grow weary of it all. Wish I knew the answer as I find myself getting more depressed every day. In the last year, I’ve lost my mother, father and 15 year old grandson. No funerals due to Covid. Having these losses makes me feel I should throw caution to the wind and be with family and face any consequences after 😪
So sorry to hear this, Cookiegrandma.. Words fail me...
No easy answers of course, but please don't throw all caution to the wind because of their ignorance...
Paula
Thank you so much for your support, Paula!
I feel your pain. It is sad so many people aren't prepared to help by being vaccinated and masked. I find it increasingly hard to understand why so many are so aggressive about refusing the things that give people like us the opportunities to at least have some semblance of communal life again.
My son used to live with us but his job which involves international travel and contact with lots of people has made that impossible. He sees us outside and masks to use the inside "facilities." Christmas will be hard again.
Our hope has to be the new, more available therapies. But will the unconvinced refuse them too?
My sister and her pretend husband live in another state..they refuse to get vaccinated. We have not seen them in 2 years. They know my health situation. No one is missing their presence anyway.
I got Covid from a relative visiting my daughter. I was in the car with him for only five minutes. After arriving in town he kept complaining that he had bad allergies. No he did not have bad allergies he had Covid. I ended up being able to get Regeneron as soon as I tested positive two days after I was exposed. I still was quite miserable with Covid but at least I did not end up being hospitalized. I now feel I probably have more protection than I did after being double vaccinated. I still wear my mask when I go out and I am very cautious about being around a lot of people. I think this whole pandemic has made us all a little paranoid. But better safe than sorry.
Easy for me, ‘just say no’! If after explaining your vulnerability, this relative still wants to visit, common sense dictates you do what is in ur best interest if they don’t or won’t see your logic. Good luck!
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