Vaccine Adverse Events: Interesting graphic... - CLL Support

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Vaccine Adverse Events

whmk profile image
whmk
35 Replies

Interesting graphic. Vaccines are worse than SARS-CoV-2 for lymphadenopathy and no other common adverse events. - Eric Topol

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whmk
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35 Replies
AussieNeil profile image
AussieNeilAdministrator

I can't find the source of your quote and plots. How long does the lymphadenopathy last?

Given a healthy reaction to a vaccination or infection is lymphocytes multiplying in the germinal centres of our nodes, causing lymphadenopathy, isn't this what we want?

Eric Jeffrey Topol (born 26 June 1954[1]) is an American cardiologist, scientist, and author. He is the founder and director of the Scripps Research Translational Institute,[2] a professor of Molecular Medicine at The Scripps Research Institute, and a senior consultant at the Division of Cardiovascular Diseases at Scripps Clinic in La Jolla, California. He is editor-in-chief of Medscape and theheart.org.:

He was also commissioned by the UK 2018–2019 to lead planning for the National Health Service's future workforce, integrating genomics, digital medicine, and artificial intelligence.

en.m.wikipedia.org/wiki/Eri...

Neil

whmk profile image
whmk in reply to AussieNeil

I asked Dr. Eric Topol for his source - he is one of the most trusted physicians on the Internet.I think for normal people lymphadenopathy is common and not a problem - eventually, the nodes go back to normal. For CLLers maybe or maybe not. It's just curious that of 11 AEs they tracked it is the only one where the cure is worse than the disease.

whmk profile image
whmk in reply to whmk

Here is the source:nejm.org/doi/full/10.1056/N...

Not alarming for normal people but they didn't test it for CLLers. This is the kind of research that WE need.

AussieNeil profile image
AussieNeilAdministrator in reply to whmk

Thanks. So like the flu vaccination, there are secondary health benefits from the Pfizer vaccination:healthunlocked.com/cllsuppo...

Impressively, from the more than 2,400,000 people who had the Pfizer vaccine in the study, we found that "Vaccination was substantially protective against adverse events such as anemia, acute kidney injury, intracranial hemorrhage, and lymphopenia.:

We estimated that the BNT162b2 vaccine resulted in an increased incidence of a few adverse events over a 42-day follow-up period. Although most of these events were mild, some of them, such as myocarditis, could be potentially serious. However, our results indicate that SARS-CoV-2 infection is itself a very strong risk factor for myocarditis, and it also substantially increases the risk of multiple other serious adverse events."

AussieNeil profile image
AussieNeilAdministrator in reply to whmk

The only one of 11 AEs "where the cure is temporarily worse than the disease". That's impressive. I agree our community would very much like to know the distribution of how long lymphadenopathy lasts after vaccinations.

whmk profile image
whmk in reply to AussieNeil

Yup for me it has lasted 7.7 months after my second Moderna.

Cfarrar profile image
Cfarrar in reply to AussieNeil

What is lymphadenopathy?

AussieNeil profile image
AussieNeilAdministrator in reply to Cfarrar

Enlarged lymph nodes :)

Jm954 profile image
Jm954Administrator in reply to whmk

But he's not a haematologist or an infectious diseases expert so I would be cautious about the interpretations.

Mystic75 profile image
Mystic75 in reply to Jm954

Good point!

whmk profile image
whmk in reply to Mystic75

The graphic is from a NEJM article - see link above.

Mystic75 profile image
Mystic75 in reply to whmk

Got it :) Due to all the misinformation in social media and the internet, and the number of people who believe in it, sourcing the information is so important. Thanks for doing that.

czbm profile image
czbm

I have SLL, have had three Moderna vaccines and no increase in lymph node size that is palpable.

whmk profile image
whmk in reply to czbm

good for you. Are you on W&W?

czbm profile image
czbm in reply to whmk

Yes.

sweatbee profile image
sweatbee in reply to czbm

I have SLL also and had 3 Pfizer shots with no increase in node size. Untreated on W&W.

Seabear profile image
Seabear in reply to sweatbee

I have cll and am on w&w ,no increase in lymph node size noticed 3 MTHS since my second Pfizer dose

Imalpn profile image
Imalpn in reply to czbm

Me too….2 shot Moderna Feb/Mar then a booster 10 days ago…only reaction was a sore arm

LeoPa profile image
LeoPa

I have nothing against Dr Topol , but how being a cardiologist makes him an expert on vaccines or lymph nodes? Too often I read opinions of doctors from other fields, coming up with unsubstantiated claims against vaccination , masking etc. Being an MD these days is a field so specialized , that not all doctors understand everything about everything. The cardiologist is not an infectious disease specialist who is not a brain surgeon. Sure these are all intelligent people but have you seen how many doctors are anti-vaccine? How is that even possible? I had two pfizers and no detectable node enlargement.

Shedman profile image
Shedman in reply to LeoPa

Here, Eric seems to simply be providing data analysis.. his credentials are perfectly solid for such knowledge sharing.. His output (via twitter in my case) seems to be steadfast and reliable.

whmk profile image
whmk in reply to Shedman

He gives the original NEJM reference

LeoPa profile image
LeoPa in reply to Shedman

I see. Yes, there's a small difference in the lymphadenopathy but other than that this graph says that getting the virus is much worse than getting the vaccine. I wonder what are the chances that someone who had a node growth after vaccination would have none after contracting the virus.

Jm954 profile image
Jm954Administrator

This difference is small and may be not statistically significant, we can't tell from this graphic. However, given that that is the only side effect that is worse than covid infection I'll take that as good news.Good to know it causes lymphadenopathy and it's helpful to see this but I think we all knew that from personal stories on this site.

Jackie

KevinCLLITP profile image
KevinCLLITP

I presume this is the reason they suggest for Mammography purposes to delay vaccination until after the mammogram or to wait a minimum of six weeks after for the lymp node swelling etc. to go away before they do it so as not to get bad results. My wife is a survivor of breast cancer and was told same by her radiologist and we have a niece who had to delay her vaccine due to a required follow up to her mammography, who ended up getting COVID and giving it to her two younger daughters. Luckily husband was vaccinated and was fine.

newyork8 profile image
newyork8

Don't lymph nodes increase when an immune reaction occurs...so is this a surprise or a reason to be concerned? Are we to believe the vaccine reactivates or worsens CLL? I think not.

cajunjeff profile image
cajunjeff

To my understanding transient lymphadenopathy is a common side effect of every vaccine and not a major concern. The way vaccine hesitancy works, there will likely be some people with cll on the fence about taking the covid vaccine who will read this data, out of context, and use it as justification to not take the vaccine.

Without actually coming out and saying it, it appears your post is suggesting that vaccines might be bad for cll patients and that the vaccines may jump start our leukemia.

I do not think it unreasonable for anyone with cll to have a concern that the covid vaccines present some unique side effect risk to us. Maybe there is some unknown risk for us with the vaccines. That's always a fair topic.

The risk for us getting covid is well known, some studies suggesting a more than 30% mortality rate wit cll and covid. And despite some leading cll bloggers predicting vaccines will offer us no protection, lots of people with cll are having a positive antibody response to the vaccine and others. like me, who did not might still be getting some protection from the vaccine.

Have any top cll doctors suggested we not take the vaccine due to a risk of cll disease progression? That appears to be the doubt being sowed here with a link to a graphic and no text to explain what that means for us.

Here is an article about lymph node swelling and vaccines:

“We know that lymph node swelling can be a common reaction, or side effect, to any vaccine – especially the flu vaccine or the shingles vaccine that we’ve had lots of experience with over the years,” she said. “And that seems to be especially true following the COVID vaccine.”

newsroom.clevelandclinic.or...

whmk profile image
whmk in reply to cajunjeff

I post data and graphics sometimes with no discussion to provoke discussion but mostly to provoke scientists to help us find the answers. I don't always give you my POV, because some people might think I am biased. Personally, I have taken the vaccines and campaigned for the boosters, but I have restrained myself from posting my bad experiences because I didn't want people to use anything for anti-vax or anti-mask. But after 6 months it is clear that some people are experiencing long-term side effects and vaccines are waning. So it is important to have an honest discussion. I hope you understand.

cajunjeff profile image
cajunjeff

I think possible vaccine side effects are a fair and important topic. Insofar as vaccines having side effects and their protection waning, I would say that's expected. Most people knowledgeable about vaccines I don't think ever expected no one would have a side effect or that the vaccines would provide lifetime protection. indeed most articles I read predicted we might have to take covid booster vaccines like we do annual flu shots.

I think when you post a graph of lymphadenopathy increasing after covid vaccine shots on a cll website with no discussion you are advancing a theory or concern you have that covid vaccines can trigger disease progression with our cll. That's a fair topic for sure.

I just think the way it is presented will confuse some readers into believing this graph proves vaccines are bad for us with cll. The people most likely to "like" a post like this, if my experience with facebook vaccine discussions is comparable, are people who are hesitant about the vaccine and who will think "aha", I was right, the vaccine will make my cll worse.

Now I don't know if that's what you mean to imply with your post, its just the way it reads to me, that is, that doubt is being sowed that the vaccine will make our cll worse.

All I take from the graphs are that node swelling can be a common side effect from the vaccines. If you have some evidence vaccines promote our leukemia, that's more than a fair topic. That would be a concern to me for sure.

You put up what you think is a fair topic for debate, no worries there with me for sure. I am just responding that my personal concern (I am no moderator and have no position with the site) is that I thought your post was meant to express concern the vaccines makes our cll worse by allowing our nodes to grow as a possible side effect.

If that is the point being made, then lets discuss it, but not in a vacuum. Even if there is some risk a covid vaccine might trigger our cll ( I have seen no data saying so but I suppose its possible), thats a theoretical risk. The risk of covid to us is not theoretical.

Its all how we see things. You say the vaccines are waning which many will interpret as saying they are not what they are hyped up to be. My view is that the vaccines have been amazingly effective at reducing the risk of serious covid.

I never expected everyone would benefit from the vaccines. I never expected the vaccines would be without side effects. I never expected that I would not need booster shots.

Its a good discussion. There is nothing wrong I see with us having diverse opinions on the issue.

whmk profile image
whmk in reply to cajunjeff

There were a lot of epidemiologists who thought that we were done with vaccines - 1-2 shots were enough. Even now, after the CDC said boosters will be coming in 3 weeks in the USA, many epidemiologists say that the CDC is over-reacting. Of course, people in the UK and Israel knew that vaccines were waning before the CDC acknowledged it. So no - not everyone thought boosters were necessary 6-mo after Pfizer and 8-mo after Moderna.

cajunjeff profile image
cajunjeff in reply to whmk

I think we are talking semantics now. Whether we call it boosters or annual shots, I think it was never contemplated these vaccines would be one and done like smallpox and polio vaccines are. I always thought I might need boosters or annual shots.

But what is your point anyway in bringing up the booster issue and lymphadenopathy issue? I’m not arguing, just not clear. It sounds as if you are skeptical about the efficacy of the vaccines. Maybe I am just not getting the point.

I personally never viewed the vaccines as being without risk or as a perfect solution. If you told me a year ago we would be up and running today with vaccines that are extremely effective in preventing serious covid disease and that more than half the country has vaccines in their arms, I would see that as an enormous success considering the challenges.

Do you think we with Cll shouldn’t be taking vaccines because we might need boosters and because lymphadenopathy is a possible side effect?

My position is that based on available data those of us with Cll, upon advice of their doctors, should take recommended vaccines and boosters. I think any risk of a side effect is largely outweighed by the risk covid brings us. I believe that is what 90% of top Cll doctors recommend. What’s your view so I can better understand your posts questioning the efficacy of the vaccines?

If the emerging data points to another conclusion, I remain open minded. It’s mostly over my head and beyond my area of expertise so my position is basically me parroting the position of my doctors at md anderson and other Cll doctors.

whmk profile image
whmk in reply to cajunjeff

I am not questioning the efficacy of the vaccines. I think the developers should and will get a Nobel Prize for it. I am just posing the possibility that for CLLers the cost/benefit ratio could be different than for normal people. We know the benefit is less protection. I think the cost might be higher for us CLLers in terms of side effects and disease progression. Something that I think should be researched.

cajunjeff profile image
cajunjeff in reply to whmk

I would like to see that researched too.

michaeledward profile image
michaeledward

The graphs appear to indicate that the risks of covid are generally greater than the risks of the vaccine. What am I missing? And for those who claim CLL patients haven't been tested/monitored for the effectiveness of the the vaccine and have two things to say: (1) Why on earth would CLL patients be included in the initial universe of people included in the vaccine study if one wanted to determine the effectiveness of the vaccine on the general population? (2) It is my understanding that CLL patients have been incorporated into follow-up vaccine studies.

michaeledward profile image
michaeledward

. . . I have two things to say: . . .

Doremefasol profile image
Doremefasol

Maybe Israel will come up with a new vaccine, and they will want to sail it all over the world. Let's watch.

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