Curious if you all seen this article? Since January 2022, I stated to all of my husband Dr's that I truly believed that my husband's 3rd COVID activated his CLL. Although a rare side-effect (per article), this also happened to the famous Dr.
DID A FAMOUS DOCTOR’S COVID SHOT MAKE HIS CANC... - CLL Support
DID A FAMOUS DOCTOR’S COVID SHOT MAKE HIS CANCER WORSE?
Ps since then, my hubby's recent annual COVID shot went off without a hitch
That’s great news. Glad he continues to be vaxxed & boosted. I hope you do the same!
We can agree to disagree on anything else or not, but when you love someone who is immunocompromised in some way, the weight of scientific evidence says that vaccination is the best way to protect those we care about. Best wishes.
I do not rule out that the Covid vaccines we take could have rare side effects, including some acceleration of our Cll.
I don’t think a connection between Cll progression and vaccination has ever been proven. The article admits as much. Correlation doesn’t equal causation.
By way of example, my Cll got diagnosed after I ended up in the hospital with spontaneous bleeding from my kidney. Bloodwork for that led to my Cll diagnosis. A cause for my kidney bleed was never found and I’ve had no similar problems since. The local oncologist thought the bleed was Cll related. All the Cll specialists I have seen since have said there is no relation.
Now suppose this spontaneous bleeding I had coincidentally has occurred the day after my first covid vaccination. The correlation would be super strong, I had the vaccine and the next day bleeding started. But correlation doesn’t equal causation. Causation might be proven if it could be shown many dozens of people had kidney bleeds after a study compared them to a control group.
One think we do know for sure is that the mortality rate for people with Cll and Covid is much higher than the general population and that we are at great risk for serious Covid symptoms. So even if there exists a rare chance our Cll might be made worse by the vaccine, we know that the risk of being unvaccinated and getting covid is a much more proven and known risk for us.
I assume all vaccines have rare side effects. I am recovering from a relatively mild case of Covid as I type this. I think being vaccinated and taking paxlovid helped protect me, it’s proven they do. Paxlovid has a lot of side effects too.
What scares me more than rare vaccine side effects are the known and common dangers Covid presents to me if I was unvaccinated.
Some straightforward math:
COVID vaccines have been reported to be linked to various cardiac issues and to the usual-but-rare side effects for vaccines, allergies and whatnot. The incidence of issues, however, is well under 1% of recipients, and probably more like 0.01%. I have seen no reputable studies showing otherwise, and the FDA among others does keep track of this kind of thing.
A CLL patient catching COVID in 2021 had a 1 in 3 chance of hospitalization and, if hospitalized, a 1 in 3 chance of death. More recent studies have had varying reports of significant illness and mortality, but the lowest I've seen is 2% mortality. And there is long COVID to consider.
10% >> 0.01%. Get your vaccines.
I do think articles like the OP's are really interesting, by the way, and don't doubt that some portion of the population has seen adverse effects. That doesn't change the math though.
I'm not sure from your husband's bio whether he is mutated IGHV or has mutated TP53 or both. If he has mutated IGHV, then his CLL B cell receptors will be selective for just one epitope (specific protein or part thereof), so the odds of any vaccination including a match for that would, I expect, be astronomical. It's more likely with unmutated IGHV, but still rather unlikely. So more likely coincidental.
Neil
Ok but 2 weeks from the day my hubby got his 3rd shot he got critically ill. ...
Hi, AussieNeil. I was diagnosed in 2017, and I’ve wondered why I’ve never really gotten a clear answer regarding mutated/unmutated status. Also, I am still in watch and wait, but I believe I’m getting closer to needing treatment.
So, I went online a few days ago, and brought up the results from my 2017 Fish test and other testing results from my initial diagnosis.
My results indicated that my mutated/unmutated status could not be determined. This test was repeated, and the results were the same. I don’t have that one very positive marker, and I don’t have the unfavorable markers they look for. The test did show borderline Zappa 70, and CD38 positive, which I understand to be unfavorable markers. I am considered moderate risk.
My question is, can mutated/unmutated status change over time? Also, are these markers still significant in terms of course of treatment and prognosis?
Thank you.
Suzie
Hi Suzie,
The IGHV mutation status shouldn't change over time. It's historically been hard to do correctly, which I think accounts for most of the few cases where a change is reported.
Your other markers CD38 and ZAP-70 can change.
With respect to your questions, all these prognostic markers for time to first treatment (watch and wait length), are still important. With respect to how much influence these have on treatment effectiveness, they have far less influence than used to be the case. I've even seen reports where those with unmutated IGHV do slightly better than those with mutated IGHV.
Neil
Thank you, AussieNeil, for being such a trusted source of information and comfort to so many of us.
I really don’t trust Googling anything that pertains to CLL. Do you have any info on Zappa 70, and CD38? I‘ve been borderline Zappa 70 and positive CD38 since my diagnosis in 2017.
Thank you.
Suzie
Hi Suzie,
Due to the challenge of measuring IGHV, there was a great deal of international interest in finding easier and hence lower cost surrogate methods to predict IGHV mutation status. ZAP-70 was promoted by M D Anderson but wasn't as consistent a correlation as CD38. Being negative for both is best and correlates with around a 60% chance of being IGHV mutated. CD38 is also an independent prognostic marker.
What really matters is how you personally go over time.
Neil
The rare side effect potential in him, was with a cancer of the T-cells. CLL involves B cells, otherwise we would have a different diagnosis. Even if it is true that the vaccine, or an excipient, aggravates a specific T cell lymphoma, it may not necessarily correlate with us. I am confident researchers are looking at the possibilities.
Now, if CLL happened to be in the prostate, along with T cells attempting to regulate the defective CLL cells, and T cells were overall stimulated by Covid vaccines, I could see how there would be changes in that organ. But as a corollary, not as a specific "the vaccine is causing that specific cancer to grow." So if any immune system stimulation, perhaps above a certain threshold or of a certain type, can "induce" CLL to grow, it's possible, I think.
It's sort of similar to the early days of the cholesterol-heart disease problems. People figured out that elevated levels of cholesterol were associated with cardiac problems. Then it got drilled down to specific subsets, and then ratios, of the cholesterol. Then it was found, it actually was insulin affecting fat as well as carbohydrate metabolism, as well as types of exercise and various foodstuffs contributing to changes. Which no one started looking at until people were put on "zero cholesterol" diets, yet still had bad levels/poor outcomes.
So there may be some association/aggravation of existing conditions involving the immune system by mRNA vaccines, or specifically Covid vaccines. But I am not sure there is yet data to say with certainty that the vaccine itself aggravates/induces the prostate cancer, or other cancers. And until then, people are searching for answers "why" there seem to be prostate changes (or myocarditis, or some other adverse reactions) to Covid vaccines.
I do think that major stressors can contribute to CLL becoming active, and immunization of any type can act as a stressor. It perhaps could have been a Shingrix or tetanus shot that started an immune system reactivation leading to CLL activation, also. Not to mention, the stress we all have been under the past few years.
They put people on zero cholesterol diets and then they found out that the liver just makes more of it to make up for the difference 😁. No cholesterol no life.
I not sure was it a coincidental case, I was in W&W before I had my 4th Covid vaccine.
My WBC went up 100% in 4 months after my 4th Covid vaccines, and I had to start treatment.
This is where we need to look at two groups to see if there is any statistical difference;1) Incidence of rapid doubling of ALC (WBC) in those who haven't had vaccines. (Keep in mind this is one of the standard triggers for starting treatment - it happens.)
2) Incidence of rapid doubling of ALC (WBC) in those who have had vaccines
Some members have reported significant increases in their ALC after vaccination, but they usually have subsequently dropped back.
What did your WBC change from, to? Note that it's more accurate to report your ALC than your WBC. The error in accuracy isn't that critical when your WBC is over 50, but even there it can be a 10% error.
Neil
dave20 -
Humans have very quick minds that sometimes intuit causal connections where none exist. This creates a fallacy knowns as Post Hoc Ergo Propter Hoc - After This Therefore Because of This. Everyone who has ever died had drunk fluids in the last 60 days before death. A few people died within a day of their birthday. Did the birthday celebration or menu cause their death?
Noticing that one thing happens after another is the first step in designing an experiment. For the above 2 examples, we look at all people who drank fluids, and note how many deaths. We can look for a pattern based on days since fluids have been drunk. We'll immediately notice that most people drink every day, yet do not die, and that ingestion of fluids is not the single unique thing about the deaths. We also look for a mechanism.
For the birthday, we look at the actual cause of death, and for a mechanism of activities on that day that would possibly cause death. We look at that cause of death on other days. We can look for other people who had the same mechanism. And so on. We might find that a few people do die more right after their birthday due to alcohol consumption and traffic accidents, but that similar traffic accidents on non-birthdays are just as likely to occur.
In your case, I would wonder, why the 4th shot and not the 3rd or the second shot? What was the rate of lymphocyte growth in the preceding 2 or 3 years? I would try to find evidence that others experienced a doubling (100%) over a similar period after a 4th shot. In my case, I certainly did not.
Ultimately, the paper the Michel Goldman wrote will stimulate other papers to examine the epidemiology of similar cancers (AITL - AngioImmunoblastic T cell Lymphoma), and possibly other lymphomas and leukemias, if only to reassure the millions of patients who will now have Post Hoc Ergo Propter Hoc experiences, and share them on social media. The data already exists for thousands if not millions of cancer patients. I suspect that AITL may indeed show in boost by vaccinations as well as infections because of its very nature - in follicular zones. I would be curious to see if follicular zone B-cell lymphomas show a similar increase after stimulation from vaccination and infection.
For my own case, I have pretty good records of the dates of vaccines and boosters and blood test results. I see no such effect.
=seymour=
Oh, yes. I myself have been struggling to get into a decent remission since 2017. I tried various things, nothing was working well without unacceptable side effects. I happened to start a 2 year Venclexta therapy in Jan 2021, and got my first Covid vaccination in March 2021. I got boosters throught the next 2 years. Now, even though my CLL is not 100% eradicated, I am solidly uMRD starting a year after treatment, and am off all CLL meds. Using the fallacy, I might conclude that the Covid vaccines helped *put* me into this state, that the vaccine stimulated my immune system such that it made enough healthy B cells and other components where my body could finally overcome my CLL. The CLL got under control shortly after my initial vaccine, right? Other meds I had tried, without vaccination, didn't work, right? I kept getting the boosters, and my CLL numbers kept getting lower, so the vaccines must have been contributing to killing off my CLL, right? I finally got enough immune stimulation from the Covid vaccine and boosters, to where my body not only recognized my CLL as "bad" and "foreign", but made enough of the Good Guys to where I could beat it down with the med. I might then conclude, all this immune stimulation from the vaccine/booster was necessary to get the Good Guys up to high enough levels to kill off the CLL cells.The drugs alone couldn't do it; I needed the immune stimulation of a Covid vaccine. Other vaccines won't work, I had flu shots and a pneumococcal shot previously but my CLL cells didn't get killed. They weren't mRNA vaccines, though. So I conclude the mRNA vaccine killed off my CLL and got me into a remission.
Papers like this *do* need to get published IMO, it's through the dissemination of information, and questioning things, that we find out answers. But a huge problem nowadays, is taking a single or even multiple occurrences of things, and trying to extrapolate conclusions. Or mis-report findings, suble distortions occur during attempts to pass information along. It would be awful to discover that people with T cell lymphomas or other blood cancer will turn out to be exclusions to vaccine recommendations, if it turns out that even certain vaccines stimulate the cancer growth. But someone needs to ask this question, in case the answer happens to be Yes. It's just unfortunately that the social/political climate right now will try to twist and obfuscate any data unless it suits their agenda.
I was diagnosed with SLL version of CLL just as the pandemic was getting started. In retrospect, it had probably been there for a few years, as I had a chronically enlarged lymph node near my left collar bone. It was a flu shot in 2019 that caused lymph node enlargement in armpit and neck (which receded) that got me seeking further investigation. Previous annual flu shots had never caused this type of reaction. A mammogram is what eventually led to a biopsy and diagnosis. I have had a multitude of vaccinations since my diagnosis (including 7 Covid vaccinations). From my observations, my nodes get enlarged, then settle down after a week or two or three. I imagine that may not be the case as my disease progresses and I will eventually need treatment. Does an mRNA vaccine “accelerate” the growth of hematologic cancer? Maybe, in some cases. Will it make me hesitant to get my next flu or Covid booster? Probably not. I know I will eventually need treatment at some point anyway. In the meantime, I will be using vaccinations to help protect myself from the thing that kills most CLL folks - infections that my body can not fight as well without some help. I am grateful that that 2019 flu shot got my attention and I investigated and got the SLL diagnosis - otherwise, I would not have taken the precautions that have helped keep me infection free over the past 3 years! I wholeheartedly agree with Jammin_Me’s take on The Atlantic’s article. 😁
My CLL was found after I got the old shot for shingles. The vaccine didn't cause my CLL, but it sure lit up my lymph nodes since blood cancer patients should not recieve a live virus.
spi3 -
Thanks for posting a really interesting article that I'm sure will cause more papers, as well as much worry and controversy.
For those who are interested, Michel Goldman's paper is freely available at:
ncbi.nlm.nih.gov/pmc/articl...
Rapid Progression of Angioimmunoblastic T Cell Lymphoma Following BNT162b2 mRNA Vaccine Booster Shot: A Case Report
Published online 2021 Nov 25.
Nowhere in the paper does he show any evidence of a causal relationship between the vaccine and his initial diagnosis of AITL (Angioimmunoblastic T Cell Lymphoma). He only theorizes that the vaccine possibly increased the rate of growth.
Some select quotes from the paper:
"Case Report
A 66-year-old man with no significant medical history except for hypertension, hypercholesterolemia and type 2 diabetes presented on September 1, 2021 with cervical lymphadenopathies that became recently apparent during a flu-like syndrome. The two doses of BNT162b2 mRNA vaccine had been administered, respectively, 5 and 6 months earlier in the left deltoid. Besides moderate asthenia, he did not report any constitutional symptom. Blood examination indicated a mild inflammatory syndrome, without anemia or white blood cell changes; Lymphocytes immunophenotyping was unremarkable. Protein electrophoresis and immunoglobulin levels were normal and Coombs test was negative."
In AITL, I wonder how long it usually takes to get to the state shown in Figure 1 (the initial PET/CT),
"Conclusion
This observation, which has been posted as a pre-print on the SSRN platform (18), suggests that vaccination with the BNT162b2 mRNA vaccine might induce rapid progression of AITL. Dedicated studies are needed to determine whether this case can be extrapolated to populations of patients with AITL or other peripheral T cell lymphoma involving TFH cells."
Note that he doesn't generalize this to all lymphomas or leukemias - he's very specific about T-cell lymphomas involving TFH cells. Good scientific thinking. TFH cells are very different from B-cells. They're apparently CD4+ Helper T-cells found specifically in the germinal centers of lymph nodes:
immunology.org/public-infor...
Based on Figure 1, it sounds to me like he had already developed a case of AITL (Angioimmunoblastic T Cell Lymphoma) on or before September 1, and the booster on September 22 stimulated progression. He had a bone marrow biopsy sometimes between September 8 and 22 that showed DMNT3A and TET2 mutations with allele frequencies of 41% and 36%, respectively.. He doesn't say whether the allele frequencies shed light on how long the AITL existed, or whether they showed a predisposition to acquiring the additional IDH2 He was fortunate in having a PET/CT on September 8 and 30 to compare results.
I wonder if anyone in our forumwho had a booster while participating in a trail that had weekly testing and imaging or BMB.
=seymour-
It's so hard to know if it's a coincidence or not. I'm taking my chances with the shots. I hope your husband's course slows down.
He is doing fine. In fact, he just had his 5th Covid variant a year later and is doing fine. Thank you
it triggered lymphoma for me. I did not have … or wasn’t aware that I had CLL prior to my first Pfizer vaccine. 48 hours after my very first vaccine, my lymph nodes and spleen swelled up HUGE. 6 weeks later I was diagnosed with Stage 4 CLL. Swelling did not go down from vaccine until I started Calquence. My previous blood work, prior to diagnosis in the prior year did not show any CLL symptoms. So, I skipped the entire watch and wait period and went straight to Stage 4. This was documented in VAIRS and there are also photos of the swelling in my GP medical records. Needless to say, I did not get the 2nd shot nor any booster. I am obvious not “anti-vax”, because I got in line for the first shot without any concerns. There ARE very real side effects. One thing that seemed to be missing during this entire process is how we almost totally eliminated “informed” consent. It was looked on as contributing to vaccine hesitancy. In the US, we see a ton of pharma commercials. They ALL have a huge list of side effects that get presented to the viewer both in the narration and print on the screen. I don’t recall seeing any of the potential side effects (other than redness and a sore arm) when watching the literally thousands of ads for the vaccine. The other huge concern is how anyone that reports their own truth, gets stereotyped and smeared as an anti-Vaxer. This creates an enormous amount of mistrust in our entire medical system in a way that I don’t think will ever be restored. The politicization of medicine has corrupted it in a way where doctors are literally afraid to share their honest medical opinion if it differs from the narrative. This is dangerous because, having CLL, we all know how we react differently to the very same disease. So, imagine if this politicization carries over to other treatments and doctors fear losing their license if they share their true opinions with patients. Will there ever again be a “second” opinion from doctors that you can trust? That is my truth. Kvb-texas
You explained very well your experiences in your very first post in February 2022: healthunlocked.com/cllsuppo...
From which I think we have this timeline and reactions selected from your first post:
- First COVID vaccine shot in April 2021 (Pfizer per above)
- 2 days after the vaccine the lymph nodes in my neck had swollen up to the size of a super ball. I contacted my doctor the following Monday and also did some research and learned that this was a known, but rare side effect that should disappear after a week or so
- The swelling in the lymph nodes slowly subsided over the next few weeks… but never went away
- By July, the nodes on my neck were huge… as well as my armpits. It felt like I had a golf ball on my neck and under my arm.
- I had 3 lymph nodes that presented as very late stage, aggressive CLL
I presume those 3 nodes were in your arm and neck nearest your vaccine receiving arm. I note that as I expected, you are unmutated IGHV, which is reactive to a wide range of antigens, whereas mutated IGHV is reactive to the antigen matching the antibody in its B cell receptor. Unfortunately we have no way of knowing ahead of time, to what we will react, even when we know we are IGHV unmutated.
With respect to your concern about the lack of informed consent, while the clinical trials for the vaccines were huge (43,448 participants in the Pfizer vaccine trial, with half given a placebo, compared to typically between a hundred to a thousand in clinical trials seeking the approval of new CLL medications), the chances of detecting the reaction that you have experienced is extremely difficult. That's why information from VAERS and other pharmacovigilance systems is so very important.
In your specific case, you unknowingly must have had unmutated SLL for the reaction to occur to your vaccination. Unfortunately, from personal experience, SLL doesn't doesn't tend to get noticed until late stage. So how can informed consent work when someone doesn't even know that they have lymphoma, which also happens to have a specific marker that might result in them reacting strongly to a vaccine - yet no one knows which vaccine might be safer? In most of the world, you most likely won't even get to know your IGHV mutation status if you know you have CLL/SLL. I didn't learn mine until 10 years after my SLL diagnosis and that was only because I was nearing the need for treatment and was eligible for testing via funding from a charitable donation. I only learnt of this opportunity through my membership of this community.
The challenge is that while no vaccine can be perfectly safe for everyone, the actual illness is worse and with a highly transmissible virus, very hard to escape. Overall there is excellent evidence that the COVID-19 vaccines did save many tens of thousands of lives. Your case appears to be rare, even within this community among those with unmutated IGHV SLL.
Mistrust in the medical system from what we've experience in the past few years is a very serious issue and is recognised by those able to do something about it. The politicisation of medicine has already cost many lives and sadly will continue to have long lasting repercussions.
References: Initial clinical trial reports for mRNA vaccines
pfizer.com/news/press-relea...
nejm.org/doi/full/10.1056/n...
Neil