Just read a tweet from someone who was diagnosed with CLL a week after having the covid vaccine, and thinks it’s related. How dangerous the Antivaxx people are, when that person is now likely to reject vaccines he will need to keep him alive.
Antivaxx: Just read a tweet from someone who was... - CLL Support
let’s see how well that goes down with the doc !!
Imagine there must have been a few people run over by a bus after being vaccinated. And they can't even tweet about it. What a shame, surely it was the vaccine that caused it. Yes I'm being sarcastic 😁
you knows sometimes that the best way to counter the argument. .
Look I have had 6 vaccines and was pro and I'm not against however I won't have any more, after the last couple I have had numbness in arms and fingers for weeks after and also after my six in November I have had a rash like hives that is only now got away although I have dermatology in a week to look into it further. I can't say for sure the vaccines are at fault but there is more then enough doubt in my mind now not to have any more. I recently researched more and my symptoms are not uncommon. Everyone is free to make there own choice over vaccines as they would treatment,I was very pro now I have doubt I'm sure I'm in the minority but it's important that if any of us from any treatment or vaccine report any possible side effects to silence everyone would be very dangerous
Of course, but always work with fact and not conjecture. Ive had 6 doses of mRNA and everyone of them has been fine. Apart from a dead arm, and if you have ever had Tetanus Jab you will know what a sore arm is. Balance risk, Covid with CLL suppressed immune system is is high risk, high impact.
just an FYI, CLL can infiltrate into the skin and cause hives. I have that problem when I get insect bites. I get huge hives and infection from bacteria.
The real problem is people who can’t respect other people’s medical choices.
Imagine a world where Ibrutinib is FDA approved, right after testing on animals, and they forced all CLL patient to get it. So what if some died, so what if it wasn’t medically necessary, and who cares about all the side effects, it couldn’t possibly be because of the Ibrutinib that people were having problems with their heart.
“Imagine there must have been a few people run over by a bus after being (started on Ibrutinib). And they can't even tweet about it. What a shame, surely it was the (ibrutinib) that caused it. Yes I'm being sarcastic 😁”
Or maybe they didn’t do that. They took the necessary steps before people got to choose if they wanted to take it based on the years of trials that it went through and the evidence of it working. People knew that it might not be the best choice for them based on facts and they chose according to what they thought was best for them.
How come it’s fine for each of us to choose what CLL treatment is right for us, but not ok if we choose whether or not to get some experimental shot?
I personally feel as if I put that shot in my already compromised body it may do more harm than good. I was also pregnant. I’m not wrong. It was my choice to make.
You have every right to choose what you want, if that’s what you think is right for you.
I'm not sure what you mean by this post, but I feel that you seem resentful that the vaccine was experimental? That was factually stated and if one chose to do so there was full disclosure of that fact.
The rest of this is just an observation of the entire mess it is not meant toward you at all. I care about the trouble you're dealing with, and hope you see good results soon. Sometimes, my general comments get interspersed with a point someone has made and it gets taken personally. I'm trying to be less abrasive in my communications.
I do not know of anyone who was forced to undergo vaccination against their will. I'm not saying that there was no leveraging to get people to participate. There were rules and mandates for those that wanted to carry on following the course of life they were following.
What of it? When the public is faced with a widespread transmissible disease that extended to the point of death, those in power have the right and responsibility to act accordingly to protect the populace. However, people could mask, quarantine, forgo some public events, and even look for different employment if they were dead set against being vaccinated.
Would it be tough, sure, but if a person has that deep a set of values then they should travel that road without whining. Our problem in society is we want want what we want, but if the price is steep we try to make everyone else the bad guy instead of accepting that sometimes life may work against the path we choose to take.
You have CLL, you have a high chance of dying from any infection. So why would you take the risk with Covid, considering your immune system has never seen that pathogen.
If you consultant said that a new treatment using mRNA could be used to keep CLL in check, and give you a better prognosis, would you reject it? Of course not, because the risk vs reward is significant in favour of cure or at least longer life. The trouble with Covid, is you don't know until you get it..You may be fine, you probably won't be...So why roll the dice in favour of the virus?
My husband got Covid 2020, I didn’t get it then. I got it in 2022 and it was kind of rough but I’m fine. Neither myself or my husband has had Covid more than once.
I’m super sad that people refuse to look at ALL the data, especially the information they don’t want you to know, or info that they censor.
Looking at the data requires a level of education in immunology, you cant make conclusions on a few papers online.
I was not against vaccines but I did not believe this one was effective. I m not vaccinated with this one . It was supposed to stop transmission, and now we know it does not. It was supposed to give immunity, and now we know it is Omicron that gives us immunity. It was supposed to have 95% efficacy, and we have seen even young people becoming sick. How is it possible that this vaccine does not protect healthy young people to become sick and protect older who have already health problems ?
Now it is time to have a look at all the figures to see the efficacy and side effects, (difficult because of many biais)
Watch and wait
I never thought the vaccine would prevent me from getting it or spreading it but I do believe my case was light because of it. Who knows…I may have had a light case anyway. My husband had the flu shot in August and ended up in the hospital in October with a raging case of Influenza A. Several friends from his class reunion came down with it also. Funny thing is that I didn’t get it. It’s a crap shoot.
I don't want to get into a vaccine argument. We all have CLL, and we all understand how complex and dangerous our disease is. In fact, all of what we know about the immune system is less than a tiny fraction of what our doctors and medical professionals know. We all manage our own risk, but we understand our immune systems do not work correctly. Just as it was before Covid, vaccines help us survive longer. Many CLL people are killed by infections, not cancer. Many of us who caught Covid, and ended up in hospital before the vaccines and treatments were available, died. Let's respect those who didn't make it long enough to choose a vaccine.
So I really struggle to understand how anyone without the appropriate medical qualifications can make a comment like "I did not believe this one was effective" with zero evidence or the relevant knowledge to make that determination. The other point is no vaccine makes you immune. It's just a heads-up that something is coming, and you can make some antibodies to reduce the impact. Look across the globe; millions died in India, and hundreds of thousands were killed in South America.
The fact that very few are dying of covid is somehow unrelated to the 13 billion vaccines given worldwide? The side effects, well we all know that side effects are part of any drug we take, and we manage the risk of side effects with the benefits it provides.
Here is some evidence from the Lancet "Based on official reported COVID-19 deaths, we estimated that vaccinations prevented 14·4 million (95% credible interval [Crl] 13·7–15·9) deaths from COVID-19 in 185 countries and territories between Dec 8, 2020, and Dec 8, 2021. This estimate rose to 19·8 million (95% Crl 19·1–20·4) deaths from COVID-19 averted when we used excess deaths as an estimate of the true extent of the pandemic, representing a global reduction of 63% in total deaths (19·8 million of 31·4 million) during the first year of COVID-19 vaccination."
You probably have Polio, Pneumonia, and other vaccines that help protect you... And yet the Covid Vaccine is ineffective because you read some posts on Facebook and Twitter (or did I miss the evidence you provided with your comment?) Of course, it is sad that a fraction of the doses have impacted some negatively, and some clots have killed people. But you have to look at the bigger picture of 13 Billion doses. Here is my advice for ANYONE with leukaemia. Take the vaccines. They will give you more time to spend with your family and loved ones. But do not put yourself at risk because of comments made that are not backed up by evidence. It is your choice, and no one should ever be forced.
Very well said! I agree with you completely. Thanks for this sensible and fact driven reply.
Very well said.
I do not recall once hearing the claim that transmission would be prevented. Nor, was there promise of immunity. 95% efficacy is not equal to 100% freedom from sickness. You are using supposed arguments for that have no validity and then implying that you see evidence of failure. That is classic strawman argumentation and has no merit.
You have freedom of choice, don't get the shot.
There are no dying people everywhere. Hospitals were full of people on ventilators and large amounts of residents in carehomes died. Vaccinations surely are what has made the difference.
We are in agreement Anne, my reply is to Phiphiminux. I 've had had 7 shots myself.
The tweeter (twit?) in question may eventually learn that CLL is an indolent disease and their lymphocyte count at diagnosis probably implies they contracted CLL years earlier. A week earlier, no way.
Exactly, and this is the danger of uninformed comments on the vaccine.
I've been leery to post on this topic b/c 3 years in, I think we're starting to miss the forest for the trees.
At this point, we know the original Covid-19 virus was most likely a manmade creation, be it a bioweapon or just a research screw up, that included a novel viral agent (which almost no one had pre-existing immunity to). That original virus was incredibly dangerous (funny enough, it is what I'm pretty certain kicked off my to-that-point indolent CLL to a crazy degree, but that's another post). It's why we created a vaccine that specifically targeted that exact virus makeup - to get everyone some protection against "the big bad."
Since it was a specific protection at that virus, it would not surprise me that the vax would cause some significant and long term side effects for some people, probably mostly the same people who would be at even greater danger from the virus, but possibly others, too. At the time in 2020, we found that trade off worth it, probably b/c the powers that be knew what was released.
But now, we're three years in to virus mutation. And we are trying to stay ahead of virus mutation in a fully active world to give folks continued protection, on top of that highly desired initital immunity they gained. So they have a lesser advantage to be gained from the vax (since they did get the initial immunity to the novel agent) at a time when we are gonna struggle more and more to actually attack what would be coming.
So, when we are talking the vax in 2023, particularly the new one which came with very little testing again, we aren't talking the same thing as Dec 2020. It's a new conversation against a new (and seemingly now weaker b/c we have that baseline immunity) virus. And like the common cold, a virus that doesn't seem to want to wait for medical science to really be able to get a handle on stopping it fully, but wants to mutate every time we think we have it solved again.
I was vaxxed and boosted. I have not taken the new bivalent vax b/c I already had Omicron in the late summer. Is this the right decision? I don't know. But I don't demonize anyone who has no idea what the right move is right now, or questions what the right strategy is. We should be questioning it, b/c everything was done so rapidly and with original secrecy. We should be questioning how we originally had to face Covid 19, how our original vaccine series truly went (trying to really figure our causation side effects vs correlation effects), how the NEW vaccine now compares (b/c that may or may not be as effective as the original series) in all ways, how the continued boosting effects the human body, etc. We now have time for real science, and not emergency science, and we should use it.
+ 1 MisfitK, I think your post is interesting. The premise is plausible and shouldn't be beyond serious consideration to any who grew up in the cold war period. From survivable atomic war, to acceptable tactical use of small battlefield nuclear weapons, to general acknowledgement that, "No there will be no survivors, get used to it, and by the way, where's your homework, kid"? There is a well earned jaded suspicion we have.
But, your last three paragraphs really put a tight focus on the priority that is practical at this time and help cut through what was and what is. Thanks for sharing your view.
Thank you for saying what you did.
Simple universal principle:
Because 2 things happen close in time, does NOT mean they are related.
You mean like being diagnosed with Covid and then dying shortly after?
“Because 2 things happen close in time, does NOT mean they are related.”
Yes indeed - but, in a medical sense such a duality of severe occurance would be investigated, of course.
The last vaccine I took left me paralyzed with severe neurological damage, Guillain-Barre Syndrome. It’s been a long difficult road to recovery with what seems like never ending immune issues. My ALC started rising shortly after the vaccination which led to a diagnosis of CLL. My PCP is convinced they are related as he has observed an identical course of events in another patient. I am still uncertain but I can certainly appreciate where he is coming from. I also have a family member that has experienced neurological damage resulting from their last COVID vaccination. A doctor colleague also experienced the same. Both are still doing poorly but much less severe than GBS. There are also similar risks with experiencing a COVID infection so it’s hard to quantify the risk benefit to the vaccine in the current environment. There is certainly no reason to denigrate others for their choices or their understanding of correlations as there are many more questions than answers at this point in time.
As a researcher who has dedicated their career to health care, I don’t consider myself an antivaxxer but I do acknowledge that there are considerable risks with these treatments which tend to be marginalized. The most difficult part is in the unlikely event of a serious injury from a vaccine, you become a black sheep in the medical community. I’m reluctant to even share my experience with colleagues or my healthcare providers as it so often leads to an unproductive, emotional and unscientific response.
nothing to do with your cancer, then?
My doctor’s opinion is based on his observation of two similar cases. To some that would be compelling but to a statistician, not too much. The correlation will always remain unknown. I can say with certainty that vaccine induced immune dysfunction is a real phenomenon but studying the implications is so incredibly unpopular, it’s just not going to happen.
It’s sad that the requirement for doing scientific study is based on popularity, or the narrative!
That is the nature of the industry and modern pharmaceutical based healthcare systems. Studying the long term health implications of vaccines is career suicide. I do give my healthcare provider credit for acknowledging to me what he has observed as most wouldn’t even dare approach the subject. I just don’t expect him to publish a case study on it for fear of being burned at the stake.
I’m sure my opinions are burnable! Lol
CLL build over time, maybe years before it’s detected. In fact you can be carrying CLL with complete normal blood count; unless they are looking for it. You can’t get CLL in a matter of weeks or even months.
That’s my thought too. Getting a shot and being diagnosed with CLL a week later seems that causality is extremely unlikely. There is a period of time from suspicion to diagnosis.
In my case, it was a different situation. ALC started rising weeks after the shot along with other markers of profound immune dysfunction. This was not unexpected given the reaction. It wasn’t until a year later I was diagnosed with CLL. It also wasn’t until looking back that the trend in ALC was correlated to that point in time. Same situation for the other case.
that’s happens in CLL, it’s happened to all of us long before covid and vaccine. I was completely fine, and then my lymphocytes shot up to 75…. Then they started to look and found CLL. There is no link to the vaccine and CLL, you’re trying to find something to blame. It’s a a normal process of coming to terms with Cancer. Why my, what did I (or someone else do wrong). Friend, you need to move beyond that or it will consume you.
Yeah, I had the profound immune disfunction after the virus in Feb 2020. 1st, anaphylactic food allergies, then seasonal sensitivities, continued fatigue through the spring/early summer (getting sick with everything kids brought home), then my eventual diagnosis (after a decade of having "higher than normal, but stable WBC") at the end of July 2020 with a CD 38 positivity of 65% (has anyone had a diagnosis not in stage 3/4 with a number this high) and both a TP53/17P deletion and IGH/CCND1 [t(11;14)] gene rearrangement, but still CLL - a crazy uber-rare combo for someone with no family history and youth.
So, that's why, after CLL diagnosis, I adopted an incredibly "be nice to my immune system" (aka anti-inflammatory) lifestyle, b/c my immune system was whack after being sick, and I figured my virus fight (which now I know was 99% Covid) was probably the cause. It's why I don't encourage what I do for my CLL to others b/c my previously indolent CLL seemingly (b/c maybe I'm wrong) went nuts off what I think was the immune dysfunction Covid brought, which is not gonna be the case for most people.
I have adopted the same policy with my immune system. I have colleagues that developed food allergies and other immune problems after COVID and after the vaccine. I have managed to dodge COVID so far and the risk benefit ratio for the shot is quite poor for me so I avoid it.
Good luck with that, when you have CLL you quickly realise how much your immune system is suppressed. After a couple of infections, you will be accustomed to the risk. Remember both B Cell and T Cell activity is effected. Speak to your CLL consultant
That's particularly sad, given our higher risk of dying from an infection when we have CLL, when (non-live) vaccinations arranged soon after diagnosis can improve our chances of fighting these infections off, or at least reducing their severity and hence improving survivability.
These are the recommended vaccinations to improve our chances of living a normal life expectancy: healthunlocked.com/cllsuppo...
You've highlighted an important fallacy - the post hoc ergo propter hoc (After this, therefore because of this) fallacy. Here's an excellent short (6 minute) video explaining this fallacy:-