COVID19 Jab questionable: I’m taking the medical... - CLL Support

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COVID19 Jab questionable

TJG_CLL17P- profile image
TJG_CLL17P-

I’m taking the medical exemption. At 40-50% efficacy I don’t think even Fauci would have approved the vaccine...

ashpublications.org/blood/a...

52 Replies
Jm954 profile image
Jm954Administrator

Even at those low levels of efficacy I think the risk/benefit balance is definitely in favour of having the vaccine. Almost all CLL doctors would advocate that CLL patients have the vaccine.Jackie

TJG_CLL17P- profile image
TJG_CLL17P- in reply to Jm954

I will politely disagree. These vaccines have no long term safety or efficacy data. The elderly and infirm can get it as they see fit. Including those with active CLL. I’m not there yet. I’m not anti vax, just not ready for this one.

Jm954 profile image
Jm954Administrator in reply to TJG_CLL17P-

I hope you stay lucky

HopeME profile image
HopeME in reply to TJG_CLL17P-

What is your concern? The downside seems incredibly small. I don’t understand your position.

Best,

Mark

cajunjeff profile image
cajunjeff in reply to HopeME

I will politely disagree with you on this, respecting of course your right to choose to have a vaccine or not.

The upside to getting the vaccine is the chance it gives us full or partial protection from covid. The study you cite is not conclusive as to vaccine efficacy but rather what % of people produce measurable antibodies. People who do not have measurable antibodies might still be getting some degree of protection from the vaccines.

That is why almost every top Cll doctor recommends us taking the vaccine and why those not taking the vaccine are usually not taking it against their doctors advice or have not even asked their doctors opinion.

There is very little downside to taking the vaccine. The tiny risk of a serious side effect is way less to us than the risk of covid which is as much as 30 % fatal to Cll patients.

Have you discussed this with your Cll doctor? Just curious. I am not an expert and figure my doctors know best. All the Cll doctors at md anderson recommend we get the vaccine.

It is impossible for you or anyone else to say “there is very little downside.” The long term safety of an mRNA vaccine has not been established. Cytokine storm and hyper immune responses to secondary exposure have not been evaluated and remain possible. Vaccine testing prior to this involved three phases of trials, RCTs and at least two years of data to pronounce them safe. The overall incidence-fatality ratio of COVID19 is around 1.8% in the USA, meaning 98.2% recover. Even with CLL I rely on my natural immunity as my best and safest hope. You all do understand that 39.5% of people with CLL who received the mRNA vaccine developed ANY antibodies, right? It doesn’t mean that CLL patients developed 39.5% of the number of antibodies as others. Truly, no

Vaccine would be released to (much less foisted on) the public with that kind of success. I hope I remain “lucky” too. Thanks for the kind wishes.

Does your Cll doctor recommend the vaccine?

I see doctors at UC Health (Colorado) and MD Anderson. I interacted with both before there were mandates or CLL cohort studies on the vaccines. Both docs were of the opinion that there might be an advantage to receive the vaccine and that there probably wasn’t an elevated short term risk based on CLL status. Having said that, both admitted there are no long term studies- and they are oncologists not vaccine experts or virologists. The COVID19 vaccines in use currently have emergency use authorization only and they were intended to flatten the curve to keep ED’s from getting overwhelm. That they did. However, treatment of the illness has improved significantly. PPE has been effective against transmission. I have continued working in a major patient care facility during the entire pandemic. The vaccines will likely receive full FDA approval, but it will be the result of political forces not science. Therefore, the urgency for me to receive the vaccine given its reduced efficacy in CLL cohorts is low. Coupled with the unknown long term safety profile, it’s a “no” for me. I am an “n of one,” as we all are in this illness. While I have high risk markers (17p del, P53-), I also have highly mutated IGHV. All of us continue to have Killer T immunity. I rarely post because I sense that people deem me to be lunatic fringe. But there are others with this illness who share my cytogenetic who may find what I read and experience useful. If you’re not among them, please feel free to disregard my posts as I do those of many others who are not relevant to my own path. Based on the early work of Shanafelt at Mayo, I continue to believe EGCG can play a role in apoptosis and cell signaling. That might be worth a look, although to your point, my oncologists pay it little mind.

I think you are a dentist. I may be mistaken. Regardless, if you think vaccines are not a good choice for you are you wearing a mask?

Yes I have been following the latest recommendations of senior institutional leadership where I work regarding PPE, including double mask (N95 with Class III surgical over it); face shields, masks and surgical gowns. Dentistry probably has the most effective infection control protocols of any health profession. All patients are screened for C19 symptoms before treatment. We have made effective use of social distancing, building ventilation and contact tracing. We remain confident that transmission of C19 from our facility is not happening. Thanks for checking.

Pin57 profile image
Pin57 in reply to TJG_CLL17P-

Well everyone has a right of their opinion on this HU site. You bravely picked a hot topic indeed n I read your opinions that I respectively disagree.

Here’s a story with a point (plus my opinion and a recruitment plea) ...

So I happen to see my dentist last week n I asked him (n dental hygienist) if they were vaccinated.

None of my business?

The heck it’s not ...they are working inches away from me, mask or no mask, ... no vaccine = potential bad consequences to others, especially us CLLers. That’s my huge point.

Dentists have a right to not disclose vaccination but don’t despair if a patient walked out on you. I would if I didn’t get an answer or you said no. We patients have rights too. Hoping that you are letting your patients know.

We are at war against covid.

Come join us, go for the shot and give it a try, it might even work some!... n if so, you’d be helping protect not just yourself but your patients too.

Think about that. It’s not too late to join in the fight. “We need YOU!”

... and that’s just one man’s opposite opinion (and plea). Thanks for reading.

TJG_CLL17P- profile image
TJG_CLL17P- in reply to Pin57

In what part of the world do you live that dentists don’t normally wear masks? I’ve been a dentist for 25 years and infection control has been part of the game since well before that. We also wash our hands (amazing I know), sterilize our equipment and throughout COVID19 have elevated the preventive measures to unprecedented levels— double masking, face shields, surgical gowns, increased building ventilation, Covid testing, aerosol countermeasures and contact tracing. We’ve remained on the front lines taking care of people throughout this Covid pandemic and have done so safely. By the way I didn’t choose to take on a hot topic. Merely posted an article that some may find helpful in response to the person who received the vaccine and (not surprisingly) did not develop antibodies. So although the reward may not be there for those of us with CLL; but the potential long term risks will. It wasn’t intended to be a provocative post and if sharing information that you don’t agree with is offensive to you, my sincere apologies.

Pin57 profile image
Pin57 in reply to TJG_CLL17P-

Didn’t say it was offensive just expressed a disagreement. Sorry I came across to make you upset it wasn’t my intent.

And yes dentists wear masks but just saying if someone is gonna be working on me in close proximity I think I have a right to know if they are vax’d or not, so I can make an informed decision, that was my point. We are at risk more so around non-vaccinated people.

Again, sorry to make you upset regarding my opinions, just trying to have a 2-way dialogue on your topic.

devonrr profile image
devonrr in reply to Pin57

If my health professional hadn’t had the jab other than for medical reasons, I’d go somewhere else. This will filter into social groups as well. A lonely life.

TJG_CLL17P- profile image
TJG_CLL17P- in reply to devonrr

As I’ve stated multiple times now, we all do what we need to do based on our individual situation. If you’re convinced you’re safer than I because you got a vaccine that even the manufacturers admit does not prevent transmission of the illness, (even if you did manage to develop antibodies), then enjoy your bliss. But the truth will never be subverted by delusion. Blessings and good health to you!

I just responded because I thought you were starting a dialogue on whether we should take the vaccine. Insofar as the only 40 to 50 percent of Cll patients responding to the vaccine, that’s pretty much true of all the vaccines we take. Even though the flu, pneumonia and shingrix vaccines might not work for me, my Cll doctor told me the potential benefit is still worth it.

I am not a scientist or doctor, so it’s hard for me to argue the science of the vaccine on either side of the debate. There is no politics on vaccines for me. I found a really good doctor at MD Anderson who I think knows more than me on vaccines and has my best interest at heart. If he advised against the vaccine for me, I would have not had it.

I asked you about if your doctor thought you should have the vaccine because I think it’s a fair point to make that most Cll patients who decline the vaccine are doing so against the advice of their doctors. It does not seem to me that most of us posters on here would know better than our doctors do.

That said, we are ultimately the decision makers for our body, not the doctors, and we don’t really owe anyone any explanation for whatever path we take. I dont agree with the choice you made, but I think you have a right to that choice and a right to put it out for discussion.

We all have Cll in common, and this is a great place to read about subjects of interest to us. I took the vaccine and tested negative for antibodies, so I might not benefit.

I hope it works out good for both of us. I agree the treatments and therapeutics have improved, improving our chances if we get covid.

mantana profile image
mantana in reply to TJG_CLL17P-

> All of us continue to have Killer T immunity

That kind of immunity is not functional, when compared to healthy adults, due to T cell exhaustion caused by CLL.

ncbi.nlm.nih.gov/pmc/articl...

CD8+ T cells from patients with CLL show functional defects in proliferation and cytoxicity

T-cell exhaustion also results in progressive loss of T-cell function, including loss of proliferative and cytotoxic capacity.

TJG_CLL17P- profile image
TJG_CLL17P- in reply to mantana

Thank you for sharing the article. T Cell immunity is important but not our only defense though I did give it as an example. Keep in mind, Not all patients with CLL exhibit T cell exhaustion and among those who do, not all exhibit it to the same degree. It is a mistake to think that all patients with CLL are uniformly immune compromised. While CLL is a disease of non-functioning monoclonal B cells, many people with CLL continue to exhibit B and T cell immunity in response to illness. Elements of our innate and adaptive immune functions may be impaired more or less Depending on many factors, General health, co-morbidities, other chronic conditions, age, the degree to which the CLL has progressed and others. Some people with CLL seem to have a mild sickness with Covid 19 and some do worse- like the general population. Again, I am not anti-vaccine (I did receive Shingrix and Prevnar for example), I simply don’t find early studies regarding the efficacy of these COVID19 vaccines compelling enough to offset the unknown long term safety profile. If you feel differently given your personal status I do not blame you. We also need to be aware that treatment of COVID19 has improved significantly. The job of clearing the emergency rooms of people with COVID19 have been largely accomplished through some combination of vaccine, treatment, transmission safeguards, progress towards herd immunity and the disease running its course. I posted the article in response to someone who seemed surprised that they received the vaccine and did not produce antibodies. So they wouldn’t feel alone in this or surprised.

mantana profile image
mantana in reply to TJG_CLL17P-

> Not all patients with CLL exhibit T cell exhaustion and among those who do, not all exhibit it to the same degree. It is a mistake to think that all patients with CLL are uniformly immune compromised.

The problem is - it's really hard to determine the level of our immune system malfunction. We just know that it does not work so good. Unless we become seriously ill, or, even die because of what would be a trivial infection for others.

If there is a 50% chance that a vaccine prevents my death and lets me recover in intensive care in a hospital; if there is a 50% chance that a vaccine prevents me landing in intensive care and lets me recover in a few bad weeks at home; if there is a 50% chance that instead of a few bad weeks with COVID-19, I will have a headache and sneezing for a few days - I don't see why I would not take that chance.

> the unknown long term safety profile

mRNA COVID-19 vaccines work just like SARS-CoV-2 virus: it programs your cell to produce some proteins, to which our immune system should respond. By this, the immune system learns how to fight the real virus. Or, it should.

We know short-term safety profile of SARS-CoV-2 - it causes damage to our organs. If it's too successful, we die. We also begin to learn about medium-term safety profile of this virus - some of our organs, damaged, will malfunction for years, if not the lifetime.

So, with mRNA vaccine, it's as if we had COVID-19, minus COVID-19 damage.

If you know some scientific literature which hypothesizes the long term safety profile of mRNA vaccines - I'd be grateful to read.

For the record, I did not produce any antibodies 30 days after my first Pfizer jab. Today was my second one, let's see if there is any response next month!

I know there are also T cells, unfortunately the degree of their protection is also unknown.

The part that I find concerning is the fact that it’s possible to have Covid-19 without symptoms, which means you can pass it on it on to others, including those with low immunity.

TJG_CLL17P- profile image
TJG_CLL17P- in reply to Psmithuk

Yes. Hence masks, social distancing, building ventilation, elevated PPE, contact tracing. All effective. The vaccine’s unknown risk profile makes it a no for me. As I said, personal decision based on your own background, experience, diagnosis, training, exposure profile, etc. For the elderly and infirm it makes sense. Then they don’t have to care if I get it or not.

devonrr profile image
devonrr in reply to TJG_CLL17P-

Yes. Your personal decision but against many people’s views that we have the vaccine to help each other.

Of course it’s not tried and tested, it’s only been made/discovered in the past 18 months. I’m not elderly or infirm but I have a blood cancer that doesn’t fight off disease well. So if it helps to keep me alive!

COVID19 will be about for the foreseeable future. Are you advocating personal masks and PPE to be the norm in your personal life forever, not just at work?

The world will not change for you; you have to change for the world. Sadly it seems those who don’t get vaccinated will be seen as anti social and live in a world of exclusion.

TJG_CLL17P- profile image
TJG_CLL17P- in reply to devonrr

I’m a dentist. Pretty much shunned by society anyway ;-). Tell you what. You let me worry about that part. I’ll keep my eye on what happens over the coming year or so and make my decision based on how the vaccinated fare upon secondary exposure to the illness. Meantime you can find me in the mountains. Away from people who might find my views contrary to their own. I’m not yet sick with CLL. And I don’t blame those of you who are for getting the vaccine. Even though the numbers aren’t particularly encouraging. If you obtain the vaccine, don’t form antibodies to COVID19 are you any safer than I am? If so, please explain how in simple terms. Also, the makers of the vaccine have stated clearly that being vaccinated does not prevent transmission of the illness. It keeps those who form antibodies from getting sick from the virus.

devonrr profile image
devonrr in reply to TJG_CLL17P-

But we do make antibodies just scientists don’t as yet know the effect of that.

If you’ve been diagnosed with CLL you are open to any of its ills because your immune system is not the best.

We’ll have another conversation in a year’s time. COVID19 will still be in the world.

Best wishes

If you obtain the vaccine, don’t form antibodies to COVID19 are you any safer than I am? If so, please explain how in simple terms.

I think it is possible that the vaccine has given me protection you do not have. In simple terms that is because our immune system is very complex and not totally dependent on an antibody response. I have been exposed through the vaccine to a covid type antigen and even the slightest immune response, measurable or not, antibody, t cell or other, might be enough to make a covid infection less serious and save my life.

This is not so much my opinion as it is the opinion of my doctor at md anderson. He believes, despite the fact I am on a btk drug, that the vaccine might help me.

Am I more protected than you because I took the vaccine? Possibly. Had I generated an antibody response, as almost half of us do and you might, I would say I would almost certainly I would be better protected.

Are you more protected than me by declining the vaccine? I think probably not.

But let me go back to a point you and I discussed in an earlier post. You and I both treat at MD Anderson. We are lucky to do so, it would be one of the top 5 cancer centers in the world with the best doctors in the world.

If you or I decline to follow our doctors advice on a matter of such important as the covid vaccine, is that not a way of saying we know better than one of the best doctors in the world?

it would be different if it was the opinion of a lone wolf doctor, but mots all top cll doctors world wide recommend the vaccine for us.

Its not so much me disagreeing with you on this, its the doctors. I take the vaccine because my doctor thought I should, not because I am a vaccine expert.

I am not trying to talk you into the vaccine and I completely respect your right not to have it. It does, in my opinion, undermine your argument a bit when you have picked one of the best cancer doctors in the country and apparently have decided you know more than him on this issue.

I picked a top cancer center to treat my cancer. But these are oncologists not virologists or vaccine experts. Ask your doctors about the long term safety and if they can tell you objectively, based on the two months of testing (on 170 patients) that it’s safe long term, then ask what evidence they can offer for that. Long term safety pronouncements require time, no matter how many letters you have after your name.

No offense, but I think the doctors at md anderson know way, way more than you (or me) about which vaccines we should take and not take. And its not just them, its most cll doctors worldwide recommending the vaccine for us.

As to the risk of some unknown vaccine side future side effect, that has to be balanced with the risk of covid which is known has a scary high mortality rate for cll patients. I think our doctors are in a better position than us to balance that risk. I guess we just agree to disagree. I trust you can understand why I might think a highly trained cll doctor is more qualified than a dentist on vaccine advice for cll patients.

Once again, its not political for me. I just try to find a really good doctor and follow his/her advice on such things

From everything I've read, the masks and vaccines can potentially do more to protect others than even ourselves, especially given that asymptomatic people can spread this disease. It feels like the ultimate test of our humanity and reminds me of Matthew 25:40 'I tell you the truth, just as you did it for one of the least of these brothers or sisters of mine, you did it for me.'

Might want to double check facts on the vaccine protecting others. Even the manufacturers admit it won’t keep us from acquiring or transmitting the virus. That is why public health officials continued to insist on masks and social distancing even for those who had been vaccinated— now that the balance is tipping and more people are protected from illness by it, the mask mandates are dropping for those vaccinated.

I appreciate the scriptural reference and agree with the spirit of charity. Pretty sure that with the exorbitant PPE measures I practice, no one who has entered our facility the past year has acquired so much as a cold virus particle from my colleagues and me. So like it or not, the vaccine is for you not others.

AussieNeil profile image
AussieNeilAdministrator in reply to TJG_CLL17P-

Thank you for being prepared to share your perspective on COVID-19 vaccinations. I gather your primary reasons for holding off are lack of evidence with regard to transmission reduction and concern about possible long term effects. So I'm interested in your thought on the below:"Evidence is increasing that, not only do COVID-19 vaccines either stop you getting sick or substantially reduce the severity of your symptoms, they are also likely to substantially reduce the chance of transmitting the virus to others."

www1.racgp.org.au/newsgp/cl....

Given accumulated experiences with other vaccines that long term effects are rare and we have 6 months and growing long term data, vs risk of long covid, when will you feel confident to add covid vaccination protection to the list of vaccination protections you already have? Don't forget the relative risk of death from those other diseases compared to that from COVID-19, which is much higher in both the older age and blood cancer groups. Around 600,000 in the US have died from the effects of COVID-19, thereby dramatically reducing the life expectancy statistics. "The COVID-19 pandemic has the potential to bring about a greater decline in annual life expectancy than the United States has experienced in many years, perhaps since the 1918 influenza pandemic, which is estimated to have reduced US life expectancy between 7 and 12 y."

pnas.org/content/118/5/e201...).

Early estimates of life expectancy at birth, based on provisional data for January to June 2020, show historic declines not seen since World War II (1942-1943).7 The effects of the pandemic are likely to continue through 2021 as well because COVID-19 has already caused more than 100 000 deaths this year. However, the effects of COVID-19 on mortality trends may be mitigated in 2021 given better detection and treatment options as well as increasing natural and vaccine-related immunity. (my emphasis)

jamanetwork.com/journals/ja...

cdc.gov/mmwr/volumes/70/wr/...

Neil

Thank you for sharing the links Neil. I think I was pretty clear in stating that I’m not anti vax in general and that I will wait to see what the long term safety profile looks like. Six months of data however promising is not long term data and many meds in general have failed to win FDA approval (or the analog in other countries) when undergoing traditional multi year studies. Of course I will consider it if over the course of a couple years it appears safe and effective. Already, however we could introduce doubts due to the 4,000+ US deaths attributed to the vaccines themselves— more than occurred from any other vaccine in the last 50 years.

The degree to which this vaccine has been politicized and rushed should give everyone pause in my opinion. Again, I posted the Blood article link to address the concerns of one person who received the vaccine found that they did not produce antibodies. So that they would see they aren’t alone— in fact that it did not produce antibodies in the majority of the 167 study participants. I continue to think anyone who believes they have immunity or protection against transmission if they did not mount an immune response is playing roulette with the lives of others. They should continue to mask and socially distance until there is solid evidence of that being true.

While truly alarming, the actual number of deaths attributable to COVID may never accurately be counted as many died with the disease who had multiple co-morbidities and who would likely have died from those within a year. The great majority of deaths were among the elderly and infirm— those who are easiest to quarantine and who should have been first in line for the vaccine. This may include those who are truly sick with CLL.

On the other hand, There were also many deaths from suicide of those who lost businesses; or among youth and young adults who saw their lives altered to the extent that they could not see continuing. Anecdotally, I know of ten young people who took their lives since March 2020. I know of zero who died of COVID.

TJ,

Please provide a link to this information please, “Already, however we could introduce doubts due to the 4,000+ US deaths attributed to the vaccines themselves”.

I hope that you aren’t going to quote VAERS website.

Thanks,

Jeff

I’ll leave it to you to interpret publicly available information. Recoil to the number has been widespread and rejection seems to be based on inability to prove causation rather than to deny that the deaths actually occurred following the vaccine. There are also issues with reports not being vetted or that 80% of the deaths occurred in people over age 60 - a group in which higher incidence of death obviously occurs anyway. Or that the number of deaths reported following COVID vaccines as of 24 May (4,863) represent only .0017% of the 285 million doses given)... In these times it’s very hard to discern truth and we need to make decisions based on our own interpretation of the facts. Last thing I will say on this because my post was grossly twisted out of proportion and Ive spent a lot of time trying to respond. For the CDC to post as their primary bullet point, “COVID19 vaccines are safe and effective” without qualification (e.g. long term safety cannot yet be known) seems completely irresponsible. But then, this is the same organization that advised people in the early days of the pandemic to cough into their elbow and then use the elbow bump greeting instead of a handshake.

I just want to do whatever I can to help everyone in my community, and not just in the workplace. I want to focus on the greatest good. I would give my life for my country, and feel that getting the vaccine is the least I can do at this point.

from: wexnermedical.osu.edu/blog/...

Getting a COVID-19 vaccine isn’t just about you — it protects others in your life

"According to recent data, both the Pfizer and Moderna COVID-19 vaccines have been effective not just in preventing severe symptoms in people who get the vaccines — they also effectively prevent infection from COVID-19 in the first place.

This means that those who get the Pfizer and Moderna vaccines are unlikely to be able to pass COVID-19 to others in the community. And that’s important because that significantly cuts down on spread of the virus, helping protect others who, for one reason or another, are more likely to develop deadly symptoms if they were to contract COVID-19.

How we know COVID-19 vaccines can reduce virus spread

Recent studies, including a study published March 29 in Morbidity and Mortality Weekly Report, show that Pfizer and Moderna vaccines (messenger RNA, or mRNA, vaccines) are 90% effective against COVID-19 infection in real-world conditions once you’re fully immunized (14 or more days after your second dose).

The mRNA vaccines are also 80% effective against COVID-19 infection when you’re partially immunized (less than 14 days after first dose and before the second dose).

Why this is important

We continue to see data to support that current, FDA-authorized mRNA COVID-19 vaccines are not only safe and effective at preventing COVID-19 symptoms, they are a vital key to controlling the pandemic and preventing spread among communities.

What it means for you

Getting vaccinated against COVID-19 is similar to getting vaccinated for other diseases in that it’s as much about protecting your community as it is about protecting yourself."

I am a CLL patient , on W&W since 2017 , who was hospitalised with Covid 19 early April last year , huge cykotine storm which has damaged my pancreas , my heart & my nervous system . I have since been debilitated with Long Covid Syndrome & am currently taking part in a Research Study on Long Covid.

I personally feel everyone should be socially responsible & get the vaccine. Especially people who are up close & personal in their professions . My CLL specialist told me last week that 2 of her CLL patients tested positive ( neighbourhood pop up centres that were open to non symptomatic adults), they weren’t sick at all ...Asymptomatic . We all need to look out for each other & we need to respect our overburdened healthcare systems & overworked vulnerable healthcare staff . Even if there is a chance we get some protection it’s better than none . It may stop us from needing hospitalisation.

There appears to be a misunderstanding of how vaccines work among the general population . CLL patients probably have a better understand than most as we are told that the flu & pneumonia vaccines are not as effective on us as they are on others . So we take extra care . The vaccine doesn’t stop infection it stops people getting very ill , being hospitalised or worse . Nor do I believe from what I read that the virus will burn itself out . The virus will mutate hence all the new variants .

The Covid mRNA vaccine wasn’t magically developed in a few months . It has over a decade of research behind it , poised and ready for a Pandemic such as this . If everyone said , I don’t trust this new vaccine I’m going to wait for herd immunity the world could be a sorry place indeed . I can’t imagine how many more millions of deaths there’d be and what would become of the next generation & healthcare systems that would probably collapse .

I haven’t had my vaccine yet . Because of my age they would only offer me AstraZeneca . I was offered it twice , refused both times & said I want the mRNA vaccine. It made sense that if CLL patients are mounting low responses that I get the most effective vaccine . I’ve been advocating for it & am finally down to have it done as part of the research study . Will be getting Pfizer in hospital setting as I’m also anaphylactic . Delighted with myself .

I attended a webinar online last night organised by CLLIreland & CLL.org.UK . Brian Koffman , whom Im sure you all know , was one of the guest speakers he advised us to be patient . To not let our guard down for another 3 to 6 months . So stay safe one & all . Whatever your personal views think of the greater good . All the best . Emer

Oh & despite having Covid I have zero antibodies .

TJG_CLL17P- profile image
TJG_CLL17P- in reply to Emerfly

Not surprising. A hallmark of CLL is our inability to mount an immune response. Our broken B cells simply don’t do what they’re supposed to— make antibodies, immune globulins and remember who the bad guys are. Which is why most of us will eventually succumb to infection if we cannot be successfully treated.

Emerfly profile image
Emerfly in reply to TJG_CLL17P-

As part of the research , my bloods will be tested before & after the vaccines to see if i have /haven’t antibodies . I’ll keep HU updated .

Emer Thank you for your information and disclosure. I am truly sorry to learn of your long Covid and the difficulties of the past year. Nonetheless I cannot agree that being socially responsible equates to receiving the vaccine. We have continued to take care of patients all year while responsibly protecting themselves and ourselves against transmission of the disease as I’ve disclosed in my other posts. We assume everyone is sick (universal precautions) and treat everyone as though they are. mRNA technology has certainly been around for a decade. But it has never been used as a vaccine. Therefore responsible deployment requires the same degree of safety testing as any other vaccine if it is to be made available to the generally healthy public. I do not extend that to mean people who are at risk, including those with CLL. With your history over the past year, it makes complete sense that you are very high risk and should consider the vaccine to the extent that it will provide you with protections that having had the disease will not. Here’s to your complete recovery and good health.

Emerfly profile image
Emerfly in reply to TJG_CLL17P-

Thank you for your kind wishes TJG . My own dentist also has gold star hygiene procedures. Mask , goggles even his shoes are covered ! According to my CLL specialist & the zoom webinar all CLL patients in particular are vulnerable , those in treatment the most vulnerable so all should be vaccinated & continue to shield . I do understand your personal hesitancy , we are big Pharma’s dream ....a human lab. I also have a strong belief in choice, for the right reasons . Anti Vax conspiracy theorists make my blood run cold . However sometimes the best & only option is to place our trust in science. I follow @ ISAGCOVID19

, they are independent of politics & have no vested interests other than to inform the public . All the best . Emer

What would make you eligible for a medical exemption when all the top CLL drs are recommending vaccination?

TJG_CLL17P- profile image
TJG_CLL17P- in reply to Mldeterm

I think I’ve made that clear if you read through the entire thread. Essentially the reality that long term safety is not established. And the reality that less than half of those with CLL who are vaccinated produce antibodies to the disease. This should not be a surprise. CLL is a disease of immune incompetent B Cell proliferation. They don’t do what they’re supposed to do. Having said that, we are all “sick” with the illness to a different degree. Maybe it’ll work for you. But your risk reward is different than it is for an elderly patient or person with diabetes who takes the vaccine because of their elevated risk of Covid. If you feel your risk is justifiable go for it. But if you don’t then don’t.

Mldeterm profile image
Mldeterm in reply to TJG_CLL17P-

I just don't understand "medical exemption". I'd expect that for someone who has a known vaccine reaction and is truly entitled to do whatever it is that vaccinated people can do. My husband has type 1 diabetes and CLL, vaccinated in January per his specialist's recommendation and had a very robust response. He also just wrapped up a clinical trial in October. I wish you luck going against recommendations but I'm not sure concern of the unknown could be worse than 37% mortality in the COVID CLL studies.

TJG_CLL17P- profile image
TJG_CLL17P- in reply to Mldeterm

So the exemption refers to the mandate that people in my institution receive the vaccine unless they oppose it on either religious or medical grounds. My concerns have already been acknowledged as valid so I qualify medically. Yes the 30+% fatality is indeed alarming. But as I stated, we have been practicing through the peaks of COVID19 by effective use of elevated PPE and other mitigation factors. Yes I do have to continue wearing a mask when I’m not in a clinical setting unlike those who are vaccinated; but I view that as an opportunity to wear a CLL ribbon mask and raise awareness of the illness and its challenges. Peace.

Emerfly profile image
Emerfly in reply to TJG_CLL17P-

A CLL ribbon mask ? Haven’t heard of those before . Where can I get them ? CLLIreland is fairly new . We are battling to be considered and understood . Always trying to raise awareness .

TJG_CLL17P- profile image
TJG_CLL17P- in reply to Emerfly

Find a good selection available on Amazon and searching Hope Fight Leukemia Awareness Face Mask,Washable & Adjustable Fashion Unisex,Outdoor Earloops Bandana

Also on Etsy, but I’m not a fan...

It’s curious to me... if you are exercising the privilege to choose not to get vaccinated how do you anticipate eradicating it? What role are you playing to help the situation? Obviously, someone needs to step up. Why someone other than you? Do we just resign ourselves to wearing masks and letting a fraction of people die? Since over a billion people have now been vaccinated I wonder when you will feel comfortable. I understand your right to choose. And I understand you weren’t posting as a means to start an argument but you can see why a lot of immune compromised folks are depending on people to vaccinate in order to resume a normal life. I am trying to say this in a way that is respectful and not offensive but I am confused by your rationale and what I see as “mooching” off of others sacrifices for lack of a better way of saying it.

Thank you for your reply. I don’t plan on my decision eradicating Covid. But if it is to be eradicated, it will be through a combination of herd immunity among those who get it; vaccination of high risk individuals; deferred vaccination upon demonstrated long term safety of those who are not high risk (I include myself in that category); and appropriate disease transmission protocols (with which I have participated the last year while safely treating patients). The role I am playing is in modulating my behaviors so as not to play a role in spreading the illness. No one needs to step up. There are plenty of people for whom the risk/reward profile makes sense. I don’t count myself among them at present. Like it or not people are going to die regardless of what you or I decide to do. People are also dying from the social costs of the illness (suicides and homicides). The fact that a billion people have been vaccinated does not establish long term safety. Only time can do that. If I receive the vaccine and don’t develop antibodies like the majority of people with CLL, I will not deem myself safe from it. Nor will I deem myself safe from spreading it. So yes, I intend to keep wearing a mask until there is effective treatment of the illness; or until it runs its course like Spanish Flu. I do not see myself as mooching off of society. Nor do I see anyone else with immune compromise as mooching. I see people who don’t develop antibodies and who somehow believe they’re safe as delusional. Blessings.

Fair enough. So, you probably would not consider a clinical trial should your CLL progress? Since the very nature of a clinical trials is to test with no long term precedent?

When my CLL progresses as it is almost sure to do given my risk factors, my life will be in a more desperate spot than it is right now. This is what makes clinical trials worth signing up for— hope when there is not hope. That isn’t where we are today with Covid. I won’t let fear goad me into making any decision before I need to make it. If you look below the surface at my posts I think you will see a person who is not anti vax. Nor am I averse to experimental therapy or someone who is content to “watch and wait.”

Indeed I am here today in part because I have heavily researched options for my particular flavor of CLL including alternative medicine. I am following an experimental protocol initiated by Shanafelt at Mayo Clinic a decade ago. If I had listened to the first oncologist/hematologist who diagnosed my illness and told me 3 years ago that “80% of people with your illness aren’t here in 2-5 years,” I would probably have given up and not looked further. Instead, I’m still asymptomatic and blissfully confident in the possibility that if we take ownership of our own healthcare instead of entrusting every detail to our CLL docs, we may actually discover something beautiful and good in this affliction. And we may not be so ready to sign up for a vaccine that is unlikely to help us because we are afraid of what might happen if we don’t get it. I hope that overconfidence in level of protection among CLL patients who don’t form antibodies to Covid won’t keep them from continuing to mask and responsibly social distance. We know those work and they don’t have side effects.

I see & respect both sides of this debate . It’s an important discussion to have . The 1918 flu Pandemic killed circa 50 million people worldwide & thats before air travel was so common. That flu virus was never eradicated & we live with its mutations to this very day . Hence there is an annual flu vaccine , Science continuously play catch up with mutations . I think Governments & media are sending an irresponsible message ‘Take your vaccine, you’ll be protected unmask & normal life will resume’ . By all means take a vaccine but don’t think the virus will be gone , that you won’t catch it or transmit it. I think the message should be ‘take the Vaccine , it will protect you from becoming too ill & protect our healthcare systems & healthcare workers ‘ There will be changes , if you’re ill mask up & stay home if possible . There were hardly any cases of flu last winter because that’s what people were doing .

Pre Covid & post diagnosis I masked if I was travelling on public transport , going shopping , I avoided flights , I avoided crowded spaces , family & friends knew to stay away if they were sick. I washed my hands if I touched Objects outside my home . It’s become a way of life...OCD is useful for the immune compromised !

Pharma is already working on booster shots that will hopefully protect against new variants that keep cropping up . Let’s hope that they can keep up with this virus that they are still learning about .

Pin57 profile image
Pin57 in reply to Emerfly

Emerfly - Love the key point you stated “take the vaccine, it will protect you from becoming too ill & protect our healthcare systems & healthcare workers”... you nailed it in one sentence.

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