Research needed for vaxx/CLL: We need research... - CLL Support

CLL Support

19,459 members32,843 posts

Research needed for vaxx/CLL

onu1tadi2 profile image

We need research to give us some idea of effect of vaccines on people with CLL compared to its effect on general population. So far no idea. I have never had flu vaccines or flu because i know how to be careful so i trust myself more than the health authorities and their one-size-fits-all advice. I cannot afford any more of a health burden than I already carry with treatment for CLL. I cannot afford to be immobilized with painful swollen arm or rashes. There is no-one to care for me and our Ontario health system is broken down. I get arrhythmia when stressed mentally or physically and vaccine known to trigger it. So i simply pray reality will return to Canada and US so the mind manipulated dim wits who set the rules are overpowered and allowed more individual decision-making. Were i not immunocompromised and over seventy, I would have gotten vaccine. Am not an anti -vaxxer. They keep lumping seniors into one. They need to separate stats re seniors in crowded facilities and seniors who live fairly isolated lives, not using public transit as they do not work. The latter are most likely less threatened by Covid than average people unless they are involved with big family gatherings -- the minority. I have to work still part-time to pay rent in an academic demanding job, on line at home. I cannot afford to take risk that vaccine represents to me. And my life right now is just fine. Going out to shovel car out of snow now -- slow going.

92 Replies

Ok, there is plenty of research regarding CLL and vaccines. People with CLL typically have a muted response to vaccines. Even less so if they are on CLL treatment. You, being on acalabrutinib, would probably have very minimal response to vaccines, and little benefit. In fact, I would be surprised if you got much benefit at all from the flu or covid vaccine. I am on ibrutinib, and get my vaccines because I feel any benefit, no matter how small, outweighs the risk of potential vaccine complications, at least for me. There is all kinds of research on this subject. In fact, lots of good discussion on this website regarding vaccines. Stay Safe.

onu1tadi2 profile image
onu1tadi2 in reply to Davidcara

I would like specific research re side effects from vaccine with stats.

LeoPa profile image
LeoPa in reply to onu1tadi2

Statistics tell you nothing about your specific situation they are for insurance companies only. Only you can decide which one is a greater risk to you covid or the vaccine. As long as you can be 100% sure that you will not be infected by omicron there is no reason to get the vaccine. However if you do get infected you might find out that it would have been a better idea to get the vaccine. What is more dangerous to you? Vaccine side effect or covid infection? Only you can decide. You take a risk when you get vaccinated. You also take a risk when you do not get vaccinated. You cannot avoid taking a risk. Doing nothing is at least as risky as doing something.

onu1tadi2 profile image
onu1tadi2 in reply to LeoPa

That is what they say about flu, and I have never had flu or flu vaccines because i take precautions, and that is doing something.

LeoPa profile image
LeoPa in reply to onu1tadi2

So did most others who got it in the end. Everything is for the first time one day. If I get it I go down with a clean conscience. I did all I could,no regrets. Will you?

onu1tadi2 profile image
onu1tadi2 in reply to LeoPa

Research shows that people who take ibrutinib or acalabrutinib, as I do, get the least antibodies, almost none, and certainly of no use. The researcher says we need more treatment. I have found a hospital that offers treatment if you get to them early, within 7 days of getting infected, and it has worked well in their program, with no hospital stays required. They only give it to immuno-compromised people. So I am looking for a doctor who is willing to provide me with a referral if or when time comes that I become ill. But most people are getting omicron in Ontario, and I believe Covid 19 is on the wane. Thanks for your response.

LeoPa profile image
LeoPa in reply to onu1tadi2

Omicron is a variant of covid-19, allegedly a milder one but not for the immune compromised I assume. Antibodies are not much use against it. T cell based immunity is. Hence the usefulness of the vaccines. Good luck.

onu1tadi2 profile image
onu1tadi2 in reply to LeoPa

I agree about certain stats tell you very little but they constantly throw numbers at public that represent overall figures. Percentages can give some idea of probabilities. People hear a hugh number and equate that with high probability and are usually wrong unless the number is a per capita figure.

in reply to onu1tadi2

NIH.gov

I had both vaccines last February and March. My wbc went up 10,000 and my TSH thyroid number went up 5x and what I didn't realize until 6-8 months later was my that heart and blood pressure issues started and my BP could not be controlled. I had a second small stroke on Sept 1,2021 and now on blood thinner, Crestor and metoprolol I'm doing really well. Cholesterol and Bp numbers went down to normal in less than one month. I am not taking the booster. I am still showing antibodies in my latest labs. I think that the booster will give me a bigger stroke. I've been on watch and wait since 2015. I noted that when I happen to get sick when I have labs my wbc goes up 10-20,000. When I get better it goes back down. Anyone else have this happen?

Wow, so sorry to hear this JerseyGirl3. Hard to say if your problems were a result of the vaccine, it is possible. I would be leery of the booster too, if I had gone through what you went through. Sounds like the booster is something to discuss with your Doctor, if you have not already done so. You take care.

I discuss everything with my doctors because I really know my body, but they laugh at me or get angry with me so I ignore them. I have a handful of prescriptions for various things that I couldn't even make myself open the stapled bag nonetheless take them !!!! I "listen" to signs.

My oncologist/haemotologist just scoffs at me when I mention my hesitation. She will not discuss it except to say that millions if people with CLL have gotten the vaccines and are safe.

I think I might have replied to you already (darn strokes!) but even tho my lab numbers changed and went awry I would have been fine, I actually felt stronger !! But I was born with a PFO, a hole in my heart, and this, when BP went through the roof, created a dangerous situation. I find it odd that the symptoms disappeared 6-8 months later. ANNNDDD I'm still showing antibodies in my blood 11 months later!!!! However I do take precautions like wearing good masks and using hand sanitizer and social distancing.

Ugh. Gets me furious. Had a heart reaction to vaccines and will not take a booster. But I would still have taken the two vaccines regardless. Even tho I think they eased up my heart. .

Should read "messed up my heart" not eased lol

I understand your frustration. I got a cardiologist who won't speak to me even on phone because I refused to take the Lipitor for cholesterol. I had an angiogram after an incident during minor surgery which spiked my heart beat, and luckily it showed that my vessels are not clogged even though my cholesterol count is high. I should have just accepted the prescription and not taken it. Another cardiologist, a hotshot from NYC, at our biggest hospital in Toronto was very rude to me when I mentioned I had googled something I guess he does not realize that google is just like entering a big library, and your skills in research are what count. I have afib but was given the blood thinner eloquis (apixaban) but found out it should not be taken if one is on ibrutinib or acalabrutinib, so I stopped taking it. I do not know if that cardiologist knew about the blood thinning properties of ibrutinib. Since he will not get in touch with me i cannot ask him what the blood thinning part of each drug is, and if they are the same.

Well I'm glad to see I'm not the only one with issues with cardiologists!! They want me to do a PFO closure. I said no more procedures. Aster so many botched cancer and other surgeries I'm done. I scar inside very badly and i read what could happen if they needed to take the closure device out. Along with pieces of your heart and more of a chance of a stroke and/or heart attack after !!!! And cardio doctors and surgeons all yell at me. You know what ? It's my heart my problem. Not theirs. They could be the most helpful by just listening to me. NO MORE PROCEDURES!! When I google it's always Mayo Clinic or Johns Hopkins or MD Anderson. Not just some nothing place. The issues you were having with CLL meds and blood thinners is probably what they are trying to avoid with me for when the time comes to start CLL meds. What I have found is that each specialist only reviews their own specialty lab work and don't even look and note if something not in their specialty is flagged by radiologist or lab technician

I have noticed too how there is no one who wnats to look at overall picture. Each specialist works in isolation most of the time. By the way I found out that despite the rise of variants, hospitalizations and deaths remain low in our province, Ontario.

I bet if you said my lawyer wanted to know if you knew the meds you prescribed conflicted dangerously, he would respond 😡🙄 jeez

I wore a holter monitor for my heart for 3 days, a week after first vaccine when my BP went out of control. It showed one incident of a fib. A year later I wore a holter monitor for a MONTH and it showed nothing. I believe the vaccine caused the heart issues. I go to NYC today to see CLL doc because of lump on my jawbone and throat nodes that are getting bigger. Wish me luck! I've had metastatic thyroid cancer and breast cancer in the past. Hope it is CLL and not one of the others.....

AussieNeil profile image
AussieNeilAdministrator

As Davidcara noted, "there is plenty of research regarding CLL and vaccines" in particular the USA LLS study and the UK Birmingham study.

Per: healthunlocked.com/cllsuppo...

4.The LLS vaccine data was surprisingly better in CLL and BTKi patients than in other studies. Most untreated or 1 year post treatment patients were seropositive.

The above post also references this CLL Society report

cllsociety.org/2021/07/cll-...

The early data from the LLS study is covered in this post:

healthunlocked.com/cllsuppo... (Note that the vaccination rate for blood cancer patients was reported as 98% over 2 months ago).

The UK Birmingham study is covered in this Leukaemia Care report:

leukaemiacare.org.uk/suppor...

Note:

"The headline result brings some welcome news to CLL patients. Only 34% of patients showed an antibody response after their first vaccine (94% of healthy people of the same age have antibodies after the first dose). However, this improved markedly after the second dose, where 75% of CLL patients showed an antibody response (compared to 100% of healthy, age matched people).

:

Unfortunately, patients who were being treated with BTK inhibitors (e.g., ibrutinib, acalabrutinib) were less likely to make antibodies after vaccination. Those patients with less IgA antibodies in their blood in general (meaning they struggle to make antibodies to many diseases) were also less likely to form antibodies after vaccination. Therefore, it seems that more work is needed to support these patients; the researchers suggest further vaccination programmes and better COVID treatments will be needed into the future."

Jacksc06 also posted about this report, which includes coverage of the response of CLL patients on a BTKi drug (acalabrutinib, ibrutinib, zanubrutinib) to first and second vaccinations:

healthunlocked.com/cllsuppo...

There are also over 500 posts to this community on "vaccine response covid", with the lots of good discussion Davidcara mentioned:

healthunlocked.com/cllsuppo...

Neil

Davidcara profile image
Davidcara in reply to AussieNeil

I have not even thought about Iga levels, thanks Neil

Red49 profile image
Red49 in reply to AussieNeil

I had felt good awhile back that I should have built antibodies since I’m two years post treatment and my bloodwork is good. Then I found out my IGA is below normal…IGG and IGM are above. Needless to say I’m back to wondering. Thanks for linking all these studies always good to read up on them again for a refresher.

nelletap profile image
nelletap in reply to AussieNeil

I'm 72, CLL diagnosed 2010. I've had 2 Astra Zeneca and a Pfizer 16 weeks ago but was refused a 4th (I think wrongly and have written to my GP) I'd be happy to be involved in research. I'm in the UK. Blood Cancer UK seems the only place with decent info - too many contradictions!

onu1tadi2 profile image
onu1tadi2 in reply to AussieNeil

Are there statistics in side effects of vaccination of CLL parients?

AussieNeil profile image
AussieNeilAdministrator in reply to onu1tadi2

Per Covid-19 Vaccine Safety Among Blood Cancer Patients (from The Leukemia & Lymphoma Society (LLS))

lls.org/news/covid-19-vacci...

Consistent with earlier two-dose findings, the most commonly reported local reactions after a third COVID-19 mRNA vaccine (Moderna or Pfizer) among blood cancer patients were sore arm (57%) and injection site pain (18%). The most common systemic reactions were fatigue (31%), muscles aches/pain (18%) and headache (17%). Allergic reactions including rash and shortness of breath were rare, occurring in less than 1% of those vaccinated.

This is from a highly respected organisation supporting those with CLL, which has managed the largest study to date to report detailed findings by blood cancer and treatment type.

Earlier they announced:-

Study from The Leukemia & Lymphoma Society Shows COVID-19 Vaccine is Safe but 25% Of Blood Cancer Patients Do Not Produce Detectable Antibodies

lls.org/news/study-leukemia...

Neil

onu1tadi2 profile image
onu1tadi2 in reply to AussieNeil

I would really like to see a breakdown of those statistics. Do people in older age group get more symptoms?

AussieNeil profile image
AussieNeilAdministrator in reply to onu1tadi2

Given the LLS study concluded that "The safety profile of vaccines is the same for blood cancer patients and healthy individuals", healthunlocked.com/cllsuppo... I'd say it's a matter of comparing the risk of death from COVID-19 for your age group,

cdc.gov/coronavirus/2019-nc... with that of side effects for your age group cdc.gov/vaccines/covid-19/i...

This Slovakian study shows the side effect incidence consistently decreasing with age in figure 3 for all categories. The reduction is dramatic in most categories. There's less of a difference in the most common side effect, injection site pain, along with joint pain, but the incidence is still lower in higher age groups.

ncbi.nlm.nih.gov/labs/pmc/a...

So unless there's a massive reversal in the trend in side effect incidence with age, given the dramatically increased risk of death with age from a COVID-19 infection, vaccination appears to win out dramatically. Side effects are primarily due to our innate immune response, which lessens with age, ncbi.nlm.nih.gov/pmc/articl... so why would this effect reverse in older age groups? Individuals may have a specific medical reason to avoid vaccination, which is why we should first with our doctor/specialist. That's also why it's standard practice to complete a risk factor check list prior to any vaccination being approved for you.

Neil

I have documented side effects from the Pfizer vaccine through both labs before during and after the two vaccines last year as well as my heart was affected 8 days after first vaccine also documented at cardio office (tho they don't believe it). I did not get booster and will not because it will destroy my heart even further. I have, in casual conversations with strangers all over the country, found out that more people in my age group 68, and older, have been having strokes and heart issues where either none existed before or where no problems existed before the vaccine. I truly believe that it's not only males in their 20's that are having heart issues. I read an article that stated that in three years there will be an increase in strokes and heart attacks, he was a Pfizer executive. I believe it. All of my numbers were skewed -WBC, TSH, and heart right after vaccine. Then I had a minor stroke on Dec 1,2021 and was put on blood thinners and statin drugs which caused major damage with my thyroid cancer nodes causing me to stop taking them. I guess only the future will tell.

AussieNeil profile image
AussieNeilAdministrator in reply to JerrysGirl3

Hi Jerry's Girl,

As I said 2 months ago, "it's a matter of comparing the risk of death from COVID-19 for your age group... with that of side effects for your age group". Anecdotal data is the poorest form of evidence and I can't find that quote from you mention from a Pfizer executive or for that matter on any site which I consider reputable.

We've just had a post about Managing the risk of infection in patients with Chronic Lymphocytic Leukaemia treated with targeted therapies healthunlocked.com/cllsuppo...

It states "Vaccination against COVID-19 is recommended for patients with CLL." While there have been updates since that paper was written, with the LLS arguably being the best source of CLL specific information, the COVID-19 section in that paper states in the section

Current Recommendations for SARS-COVID-2

The occurrence of COVID-19 cases among patients with CLL and the outcome of the infection is a topic of particular interest during the ongoing COVID pandemic. Early data were reported in an Italian study conducted between February and December 2020. The incidence of severe acute respiratory syndrome coronavirus 2 (SARS-COVID-2) in patients with CLL was 3437.7 COVID-19 cases per 100,000; 23.3% of them occurred in people 65 years or older [75]. The mortality rate was high during the early phases of the pandemic; according to the European Research Initiative on CLL (ERIC) and Campus CLL, it was 32.5% in hospitalized patients [76•]. In the worldwide study of patients with CLL hospitalized with COVID-19, the median age was 72 in cohort 1 and 68 in cohort 2. A multivariate analysis of this patient population identified advanced age at COVID-19 diagnosis as an independent predictor for overall survival. For patients with CLL and COVID-19 requiring hospitalization, the case-fatality rate was between 30 and 34%.

With the later COVID-19 variants becoming more and more transmissible and nearly everywhere getting back to normal, antivirals and monoclonal antibodies having less effectiveness against the newer variants, if you can even locate them, it seems our risk of becoming infected if we want a life without being isolated is just getting even harder to achieve. Risk of cardiovascular side effects from an actual COVID-19 infection vs vaccination appears to be consistent reported to be higher. That makes sense when you think about the relative amounts of virus involved, which with the vaccines is just the spike protein. There's no denying that these are very difficult times for us.

Neil

I think it has been worse for me as a person who has a congenital hole in the heart. For me. The vaccine has forever changed my life. Don't get me wrong. I would still get the original two -but no more. The damage has been done not only to my heart but to my relationships with my cardiologist and CLL doctors.

And for whatever reason, a year later and I'm still showing positive for antibodies. And I consider that a good thing !! Thank goodness !!

Oddly enough I just this afternoon received an email from the CDC:CDC study finds risk of heart issues after COVID-19 infection, 2nd vaccine dose

updates@mail.coronavirusworldupdates.com

I think they need to start looking at more senior populations.

AussieNeil profile image
AussieNeilAdministrator in reply to JerrysGirl3

Do you mean this CDC report from 1st April (an unfortunate reporting date)

cdc.gov/mmwr/volumes/71/wr/...

Summary (with my emphasis, highlighting that you have noted the slightly increased risk from vaccination, but ignored the significantly higher risk from an actual COVID-19 infection.)

What is already known about this topic?

Studies have found an increased risk for cardiac complications after SARS-CoV-2 infection and mRNA COVID-19 vaccination, but few have compared these risks.

What is added by this report?

Data from 40 health care systems participating in a large network found that the risk for cardiac complications was significantly higher after SARS-CoV-2 infection than after mRNA COVID-19 vaccination for both males and females in all age groups.

What are the implications for public health practice?

These findings support continued use of recommended mRNA COVID-19 vaccines among all eligible persons aged ≥5 years.

(I think your reference is to your email correspondence, not a publicly available link :) )

I agree that it would be good to see more analysis on the older population, but bear in mind that the risk has been reported to be higher in the teen years. Per the CDC report, "The incidence of cardiac outcomes after mRNA COVID-19 vaccination was highest for males aged 12–17 years after the second vaccine dose; however, within this demographic group, the risk for cardiac outcomes was 1.8–5.6 times as high after SARS-CoV-2 infection than after the second vaccine dose."

The CDC report is confirming this analysis from September 2021 reported in Science Based Medicine: sciencebasedmedicine.org/va... Importantly, as you can read at the end of that analysis, those who developed myocarditis all recovered.

The accompanying information in the consent form for my COVID-19 booster shot clearly points out the relative difference in risk of developing myocarditis with specific vaccines, where I'm asked to answer four relevant questions:-

1) Have I been diagnosed with myocarditis/pericarditis after a previous COVID-19 vaccination with an mRNA vaccine

2) Have I had either in the last 3 months?

3) Do I have acute rheumatic fever/heart disease?

4) Do I have severe heart failure?

Neil

AussieNeil profile image
AussieNeilAdministrator in reply to AussieNeil

Then there's this worrying news with respect to a preprint study Cardiac impairment in Long Covid 1-year post-SARS-CoV-2 infectionmedrxiv.org/content/10.1101...

Of individuals with Long Covid, 102/534 [19%] had cardiac impairment at baseline; 71/102 had complete paired data at 12 months. Of those, 58% presented with ongoing cardiac impairment at 12 months.

It seems that with the increasing infectiousness of later COVID-19 variants, that it's becoming increasingly difficult to avoid some degree of cardiac risk, so minimising that risk makes the most sense.

Neil

Table 2 report of cardiac impairment from long covid.

Maybe I am one of those people who had Covid with no symptoms like my 92 yr old mother. Because I still show positive immunity a year later because of either Covid infection or vaccine !!! But I have not passed it to anyone in my family and they're all I see. And they haven't passed it on either! Maybe it's genetic, or, I think we all had it when it first came out in February 2020 of that first year because I remember having to take their baby because they couldn't stop sleeping and were unable to care for him. And there were no tests then. And maybe because it was the initial start of it the immunity is different and stronger.

AussieNeil profile image
AussieNeilAdministrator in reply to JerrysGirl3

Oh to be so lucky!

Why do some people not catch COVID-19, despite exposure? Scientists are trying to solve the puzzle

abc.net.au/news/health/2022...

Snips:-

"Putting aside environmental factors and protection induced by vaccination (and previous infection), experts say there may be particular genetic and immunological features that mean some people are naturally more resistant to COVID-19."

"While Professor Tangye said genetic resistance to COVID-19 was likely rare overall, researchers hoped that identifying key genetic changes in people who are resistant could lead to the development of more effective drug therapies."

"Having a more complete picture of the immunological response, she (Dr Bryant) added, would help researchers understand what factors were important for strong protection, and why some people could be left vulnerable.

"We can then use that information to inform public health responses on issues such as the frequency of boosters."

onu1tadi2 profile image
onu1tadi2 in reply to AussieNeil

I heard a stat that said so far only 7 per cent of population have caught Covid. I would like to find out if this is true and what population it applies to. I tend to believe that Covid is not that easy to catch unless you are in a crowded bus, have a big family, work in an office etc. I go out every day to supermarkets, banks, bakeries, cafes, unmasked, but stay apart from most people except my unvaxed friends who are all OK. I sometimes feel the new variants are no worse, if not easier on the body, than the flu. I started to feel much better when I knew treatment was within reach if I catch it. I think we all have to go by our own instincts. I need to travel to Europe but am afraid of getting on a plane vaxed or unvaxed. Am thinking of getting those antidepressants prescribe temporarily when I go to Europe, as the people on them do not get Covid.

AussieNeil profile image
AussieNeilAdministrator in reply to onu1tadi2

COVID-19 cases are recognised as under-reported. China alone accounts for nearly 20% of the world's population, and statistics from there are under reported, but also much lower than elsewhere, due to how they managed the pandemic. What matters of course, is the number of active cases you are likely to mix with and for how long.

Per medscape.com/viewarticle/97... , 'There's a strong likelihood that the antidepressant fluvoxamine (Luvox) may moderately lower rates of hospitalization due to COVID-19 in unvaccinated patients, a new systematic review and meta-analysis has found. But outside experts differ over whether the evidence from just three studies is strong enough to warrant adding the drug to the COVID-19 armamentarium.

The report, published online April 6 in JAMA Network Open, looked at three studies and estimated that the drug could reduce the relative risk of hospitalization by around 25% (likelihood of moderate effect = 81.6%-91.8%), depending on the type of analysis used.

"This research might be valuable, but the jury remains out until several other adequately powered and designed trials are completed," said infectious disease specialist Carl J. Fichtenbaum, MD, of the University of Cincinnati, Ohio, who's familiar with the findings. "I'm not sure how useful this is given we have several antiviral agents available. Why would we choose this over Paxlovid, remdesivir, or molnupiravir?"'

Neil

onu1tadi2 profile image
onu1tadi2 in reply to AussieNeil

" Better covid treatments" is rather ironic as most people cannot get good treatments already available.

AussieNeil profile image
AussieNeilAdministrator in reply to onu1tadi2

You've quoted from the LLS statement, which perhaps should be amended: "Therefore, it seems that more work is needed to support these patients; the researchers suggest further vaccination programmes and better COVID treatments and delivery will be needed into the future."

onu1tadi2 profile image
onu1tadi2 in reply to AussieNeil

Yes, delivery is important to emphasize. I have found a place in a nearby town, where they now have a treatment center for immunocompromised people, vaxxed or unvaxxed. They want you to arrive there within seven days of infection else the treatment won't work. So far they have over 80 percent success, without having to hospitalize anyone. But I need a doctor willing to refer me, as the political aspects are causing reluctance in doctors to stray off the beaten track. Thanks for response.

I would like stats on side effects of vax for CLL patients with age categories.

AussieNeil profile image
AussieNeilAdministrator in reply to onu1tadi2

See: ncbi.nlm.nih.gov/labs/pmc/a... section 3.7 and paragraphs 4 and 5 of the discussion section in particular, where it is noted that there's generally a higher incidence of side effects in the younger age group.

Don't forget to compare the COVID-19 death rates per age categories.

cdc.gov/coronavirus/2019-nc...

The above data, updated to 22nd November 2021 now (22nd January 2022) shows that someone in the 65 to 74 year age group has a 65 time greater risk of death from a COVID-19 infection than someone in the 18 to 29 age group and that rate jumps to 150 times in the 75 to 84 age group.

worldometers.info/coronavir...

(Edited to provide a reference with a more readable display)

Neil

onu1tadi2 profile image
onu1tadi2 in reply to AussieNeil

I believe that the stats for oldest group must be divided into those who live in group facilities and those who live alone, in order to be meaningful.

onu1tadi2 profile image
onu1tadi2 in reply to AussieNeil

But individuals can differ. I know people in their 70's who have had Covid and were able to cope at home. I think having CLL too affects some more than others. For me that is more worrisome than age. But worrying itself is not healthy. Being careful and aware of what to avoid should dispel worry. I focus on the well known rules on how to avoid Covid but also observe general health rules which more difficult, like avoiding unhealthy food, sleep and work habits. And keeping in touch here on this forum with information that is so useful and makes one feel less alone as a CLL patient.

Davidcara profile image
Davidcara in reply to onu1tadi2

It sounds like you might be better off without the vaccine.

You would like stats on side effects of vax for CLL patients with age categories. That’s asking for a lot.

As a famous poet once said, you can’t always get what you want, but if you try sometimes you just might find, you get what you need.

I don’t have the stats for vaccine side effects in CLL patients. You could look at vaccine complications in the general public and assume, yes assume, complications for those with CLL are lessen. The reasoning being, those with CLL have lower vaccine response rates than the general public. Although, I would say a possible increased side effect could be infection at the injection site. Another possible side effect could be over stimulation of your immune system.

I feel you could do your own research. When I say your own research, listen to experts, read the info Neil gave you, look on this web site, talk to your Doctor. At the same time, you might want to do some research on covid in immune suppressed people.

Unfortunately science is not perfect. If you are more scared from vaccine that may or may not give you protection, than you are from covid, then don’t get vaccinated.

On a personal note, even though I feel I don’t get much vaccine benefit, I still got three covid vaccines as soon as they were available to me.

onu1tadi2 profile image
onu1tadi2 in reply to Davidcara

Science depends on probabilities. Even for general population Covid numbers are usually give as simple figures, the larger the number, the scarier, without giving a per capita figure, percentages or probabilities in context , which might be much less frightening, providing a more realistic picture. Research is usually costly and long term in order to achieve some meaningful results. The most obvious distortion in my opinion happens from lumping seniors into one single category. We know the biggest Covid disasters are in group homes. And there are those seniors who live in group homes. But if you separated the seniors who live independently like myself and most of my friends-- some in their nineties -- they are possibly safer than the average younger population from being infected as they do not go out into the general population a lot - it is my younger vaxed friends who have gotten Covid. I have done oodles of research and have some background in maths and research and understand how distorted the picture is that numbers out of context can give.

Interesting. I think I had overstimulation. Still not getting the booster. Have just passed my one year first Covid vaccine anniversary and still showing antibody response. I'm on W&W since 2015. My heart issues remain, where before vaccine I had heart issues but not like this (stroke, blood thinners, cholesterol and BP meds, because BP was uncontrollable a year ago. ) I'm not willing to risk it. I actually think inpossibly had myocarditis but because I'm a 67 yr old female , they automatically throw you aside because you're not a 28 year old male, more prone. If you have it you have it. My doctors didn't even check for it. Makes me sick.

Most if the discussion relating to response to vaccines is in relation ti rge development of antibodies. Our immune system includes T cells and I think I'm correct in saying that some T cell response has been found where no antibodies were found.However for us with CLL we must remain cautious we cannot risk covid infection whatever our antibody response is. We don't know how effective our antibodies will be.

Cautious is not locking ourselves away but being mindful of our surroundings crowds, ventilation observation of distancing, proportion mask wearing and time we will be in that location. We need to live our lives as close as normal without undue risk of covid.

Davidcara profile image
Davidcara in reply to peghip

Yes this is true, unfortunately those on BTK inhibitors don’t have great T Cells response.

AussieNeil profile image
AussieNeilAdministrator in reply to Davidcara

Have you seen any recent updates on the cellular T cell response of CLL patients on a BTKi?

An update to the LLS study providing lls.org/news/new-study-show... should be out soon and I expect that will be the largest study we will see on this important issue.

I've only seen small study results to date and the reported T cell responses vary greatly. Also the impact of a BTK on T cells varies. Ibrutinib treatment improves T cell number and function in CLL patients pubmed.ncbi.nlm.nih.gov/287...

but that effect is not seen with acalabrutinib. I haven't seen reports of similar T cell studies for other BTKi drugs, or an independent verification of that study's results.

Neil

Neil,

That link to the study that ibrutinib improves T cell response and Acalabrutinib doesn’t; did you look at the conflict of interest on it?

Pretty one sided but I hope it’s correct. Was that peer reviewed do you know?

Being a guy on Ibrutinib, I would love to believe it to be true.

Jeff

AussieNeil profile image
AussieNeilAdministrator in reply to Justasheet1

The potential conflict of interest is why I said "or an independent verification of that study's results.", though the paper did propose a theory to explain the difference.

Gotcha

Davidcara profile image
Davidcara in reply to AussieNeil

Yes, I have heard ibrutinib may increase t cell function. There are a few articles on the internet that discusses T cell immunity in CLL patients. Not sure if you have seen them. I feel when the LLS releases their TCell data, it is not going to be overwhelming positive; I could be wrong, and I hope I am wrong.

A very well know physician to the leukemia society, wrote on this website ( I Think ), not to expect much from your T cells if you have CLL. This is in addition to what other experts have said in CLL webinars. Unfortunately, I do not feel comfortable quoting them, since I do not have the direct information.

David,

Per Dr Koffman,

“Our “cellular” immunity is led by our T cells, where the cells themselves direct others to kill the viruses or do the killing on their own. T cell function is also often impaired in chronic lymphocytic leukemia.

To use a football analogy, a strong immune response involves a complicated set of hand-offs and passes between different players (cells) in our immune system and we CLL patients fumble the ball a lot. Making antibodies and activating T cells is “active immunity” and requires an effective immune system and strong teamwork.

Switching analogies, while in most cases it is better to teach someone to fish than to hand them cooked fish and chips, in our case, we are slow learners and may never successfully fish on our own and may end up going hungry.”

cllsociety.org/2021/02/chro...

Also: “Low antibodies means you are probably not well protected and high antibodies means you may have some partial protection, but I would still act as if not vaccinated. The data are starting to support this. True that it's not proven, but it's true with most other viruses and vaccinations. We will need to easily measure neutralizing antibodies to get better info. I am sure that is coming. T cells aren't gonna save most of us with CLL.”

healthunlocked.com/cllsuppo...

Jeff

Unfortunately, I tend to agree, T Cells in CLL are not the end all to be all. But, we can always hope there is something there.

Also, I know one thing… was given a nice box of N95s for Christmas. Nice tight fit, and they prevent my glasses from getting steamed up.

I have CLL Stage 4. Age 87. I had 3 Pfizer : No adverse change in my MONTHLY CBC and CMP. With the agreement of my hematologist, I got yesterday the 4th vaccination as one Moderna booster. As for all vaccinations, I only have a slightly sore arm.

onu1tadi2 profile image
onu1tadi2 in reply to janvog

Interesting. Can I ask if you are on ibrutinib or some other form of treatment or drug for CLL?

janvog profile image
janvog in reply to onu1tadi2

Prescribed IMBRUVICA since Oct. 2018. Added prescribed two month' ago non-drug supplements FOLIVANE - PlusCAP for iron and VITAMIN D 3 125 mcg : Both to keep the hgb hemoglobin in the normal range. My assumption: The efficacy of IMBRUVICA and other therapy is increased by exercise which involves the large muscles. This means walking and if possible climbing stairs. This also is beneficial for respiration-oxygenation. For those who cannot walk outside due to climate or urban conditions, a basic indoor walking treadmill is an intelligent medical investment: Your body "is moving again" !

Sweden announced on friday that all cll will be given the 4 shot. Due to poor immunedefence. This 3 months after nr 3. Trust the scientists or dont! The choice is yours!

I was interested in your comment about the fact that the vaccine can trigger arrhythmia. While I live in the UK, my cousin in Ontaria (who is not immunocompromised) did indeed develop arrhythmia 2 days after her 2nd vaccine. She is 70. She says that she feels fine, and has been told that the arrhythmia is not going to kill her, and that the rest of my

heart function is great. She has been referred to a cardiologist to see if it is safe for her to get her booster.

Her unvaccinated brother, aged 74, who lives on a farm, caught Covid and died on New Year's Eve. So many dilemmas about what is best to do.

onu1tadi2 profile image
onu1tadi2 in reply to JEEA

Arrhythmia varies greatly from person to person. If one has bouts that lasts 2 hours or more, the pooled blood can develop clots which potentially can lead to a stroke

I agree with you, I am 17 years having CLL and I am not vaccinated, I currently have Covid right now. tomorrow will be two weeks I am feeling better today but I would rather just have it and have the real antibodies or as many antibodies as I can get with being immune compromised. We don't know what goes on in our bodies that makes our CLL accelerate Or come out of a dormant state and I think playing with these vaccines is playing with fire. They are not giving any immunity to Most Cllers as far as I can tell by reading on this site and also on patient power I can't believe how many CLL have gotten every single shot. They went around getting every shot and they still have no antibodies so what is the point especially when you don't know if you're doing more harm to yourself? I keep trying to talk myself into getting the Shingrex vaccine just because I get shingles all the time, but I haven't been able to talk myself into it yet.

AussieNeil profile image
AussieNeilAdministrator in reply to narl

From New Study Shows Most Blood Cancer Patients Benefit from an Additional COVID-19 Vaccine Dose

lls.org/news/new-study-show...

"More than one in two patients with B-cell blood cancers produced antibodies to a third dose of COVID-19 vaccine despite having no detectable antibodies after the first two doses, according to a new study from The Leukemia & Lymphoma Society (LLS). The study also showed that patients who had detectable antibodies after the first two vaccine doses had increased levels after the third dose."

Sorry to hear that you now have COVID-19 and I hope that you soon get over it and without any long lasting problems. With CLL, you'll struggle to produce antibodies from the illness, just as is the case with vaccines. However, per the LLS, as I've quoted below from the reference, your chances of developing antibodies will increase with vaccinations and boosters. Also hybrid protection (infection plus vaccinations) gives you the best possible level of immunity.

"Among the 38 patients with B-cell derived malignancies (almost all had NHL or CLL) in this latest study who were seronegative after two vaccine doses, 21, or 55%, had detectable antibodies after the third dose while 17 patients (45%) remained seronegative. The 11 patients in the study who had measurable antibodies after the first two doses all had increased antibody levels after the third dose. Even in this difficult-to-immunize population, the study shows the majority (32 of 49, 65%) have detectable antibodies."

Those findings are being echoed by some members reporting antibody count success from subsequent vaccinations/boosters, despite little to no antibody response after earlier vaccinations.

You've also neglected to mention cellular immunity T cell response, for which we await a study update from LLS. It's possible to develop this even if you don't produce antibodies. T cells destroy body cells after they are infected by the coronavirus reducing the viral load from the infection.

Neil

Neil,

In the studies I read, most did better with a third shot except people on treatment.

And the people that finally did get detectable results, they were still not what you’d call robust.

I hate to always be Debbie Downer. The way out for people on treatment will be with antivirals and monoclonal’s in my uneducated and non-medical opinion.

Jeff

AussieNeil profile image
AussieNeilAdministrator in reply to Justasheet1

Jeff, I agree with you that "The way out for people on treatment will be with antivirals and monoclonals", including for those of us post treatment or who respond poorly to vaccines. It's unfortunately currently far more difficult and also more expensive to get access to these options than vaccines. Neither does it help when a such a drug is incompatible with ibrutinib or many other medications (Paxlovid) covid19treatmentguidelines.... has reduced effectiveness along with secondary cancer concerns (molnupiravir/Lagevrio) :( . It's also becoming increasingly challenging to avoid exposure to the faster spreading variants like Omicron, which already has 3 subvariants, with the BA.2 subvariant outpacing BA.1 in Finland.

Sorry to join you in the Debbie Downer corner temporarily, but there are downsides to these current options too.

Neil

Totally agree. Seems like callous disregard for wellbeing of citizens to not develop more treatment initiatives

narl profile image
narl in reply to AussieNeil

Tell me those are just pretty low response rates to a vaccine that we don't know what else it is going to do to you long-term or if it could accelerate your CLL. Also the general healthy population this vaccine is not lasting long on them so not just us, It doesn't seem to be doing its job very well. And I got this covid from three vaccinated and boosted people. They just had a runny nose and scratchy throat when they came to my house to play cards, they got much sicker later but they didn't even test themselves till I told them I tested positive and then they all tested positive too.

AussieNeil profile image
AussieNeilAdministrator in reply to narl

COVID-19 unfortunately puts us at high risk of death short term and that's not hypothetical, unlike acceleration of CLL (do you have a reference?), or long term risks. The latter are very rare with vaccines and far more likely if you get COVID-19 (Long COVID). CLL is treatable, but first you have to live long enough to get to the point of needing treatment.

narl profile image
narl in reply to AussieNeil

But we don't know any of that really. Unfortunately you won't know for quite a while if it accelerated or caused your CLL to be worse or have a transformation or anything else. There's no data and hasn't been long enough. There have been a lot of deaths and injuries from the vaccines themselves to healthy people. They don't have any studies to prove that it's beneficial to us either. I know I am just very skeptical of a lot of things after a long history with CLL studies for 40 years, since my mom got CLL40 years ago, I saw what she went through and also always have watched studies regarding leukemia over all those years and then I've been watching what goes on for the last 17 years that I've had it. Things have changed for the better but I don't jump on anything new, and certainly not this vaccine.

AussieNeil profile image
AussieNeilAdministrator in reply to narl

Read the reports on CLL Society, cllsociety.org/?s=COVID-19 and ask your CLL specialist for their opinion. There's generally a choice of COVID-19 vaccines available if you don't like the new mRNA versions, with more vaccines being approved over time. With respect to the "lot of deaths and injuries from the vaccines themselves to healthy people", the USA is approaching 900,000 deaths from COVID-19, predominantly in the unvaccinated or partly vaccinated. See: healthunlocked.com/cllsuppo...

From what members have shared, it's not uncommon to (usually temporarily) develop swollen nodes, or see a temporary increase in their WBC/ALC.

Importantly, vaccines contain a very small amount of part of the SARS-CoV-2 virus, the spike protein. Having COVID-19 exposes your body to vast amounts of the entire virus. That is why the severity of side effects/adverse events from a COVID-19 infection is way worse than from vaccines and far more likely to be fatal.

Neil

narl profile image
narl in reply to AussieNeil

I'm sorry but all hospitals in this country are owned by corporations now and none of their doctors will dare give their own opinion on anything for fear of losing their jobs. There are plenty of top scientists in this country that have come out about the vaccines and also about alternative treatments, But the corporations and the government just squash their findings. (Great Barrington declaration researchers and doctors are highly qualified but been silenced. ) In a free country alternative treatments should be allowed, because the medical community has nothing to offer us concerning Covid. When I called my CLL doctor to see if I could get monoclonal antibodies they said they don't have any, really? In a NCI designated cancer center you have no monoclonal antibodies?, They said they would see if they could get some Remdesiver for me, almost 2 weeks never heard a word back from them. They told me just to rest and hydrate. I went online to the front line doctors and got azithromycin and Ivermectin prescription . So far I'm doing OK. I feel like there's too much hysteria surrounding Covid, it still has a very high survival rate.

Neil,

How did people fare who were on active treatment in that study?

I did not have any antibodies after my second vaccine. I had just started venetoclax before my 1st shot and had been on ibrutinib approx 4 months earlier for a year.

I received my 3rd vaccine recently however, I'm not expecting great news since I was on rituximab 2 months before that shot.

It's quite disheartening. If I didn't get protection from the first two doses I can't imagine getting protection so soon after rituximab. I'm hoping I'm wrong. What does the evidence show?

AussieNeil profile image
AussieNeilAdministrator in reply to SamanthaJane123

I'm in a similar situation to you and yes it's disheartening to read the study results. At least we are doing something recommended by CLL specialists that may give us a survival edge. Hopefully the next LLS report will provide more relevant data to CLLers, along for different treatments and particularly on the big unknown, T cell response. My thanks to all those who have joined the study.

Neil

onu1tadi2 profile image
onu1tadi2 in reply to AussieNeil

But do the "detectable" antibodies represent enough benefit to offset the potential negative and unpredictable effects of vaccines. There are many conflicting views among top-level scientists and reseachers, and I believe media and authorities try to cast unfair light on those who disagree somewhat from the established view. Were i normal, with no CLL, i would be vaccinated most likely.

AussieNeil profile image
AussieNeilAdministrator in reply to onu1tadi2

You are hypothesising about "the potential negative and unpredictable effects of vaccines" against the very real threat of COVID-19 to us, which is becoming nigh impossible to avoid, given how rapidly Omicron has spread. With respect to the "many conflicting views among top-level scientists and researchers", it's a minority, with just 12 people spreading the most of the conflicting views through their wide social media reach. coronavirus.nautil.us/covid...

This is where we need to trust our CLL specialists. I'm not aware of even one CLL specialist expressing a general concern about being vaccinated against COVID-19, though obviously it is contraindicated for some of us, due to other health conditions. Do you know of any CLL specialist expressing concerns about any of the COVID vaccines?

Neil

onu1tadi2 profile image
onu1tadi2 in reply to AussieNeil

No I do not know any CLL specialists expressing concerns. They are not however research or clinical scientists nor vaccine specialists or in possession of needed statistics on the topic. I will however try to contact a well known clinical CLL scientist who I have had pre-covid meetings with to find out their views on this topic.

AussieNeil profile image
AussieNeilAdministrator in reply to onu1tadi2

Great that you know a clinical CLL scientist and it will be interesting to hear their views. I would consider quite a few CLL specialists do engage in research and they certainly need to understand statistics to write papers on CLL studies.

With respect to your answer to Davidcara on numbers, I take particular care to present numbers in the appropriate format, be that percentages for risk, or absolute numbers for blood counts for example. It's actually quite enlightening to observe when numbers are used more to frighten than to educate.

Neil

Davidcara profile image
Davidcara in reply to AussieNeil

Neil, do you happen to know if any of those who developed antibodies after third dose were on BTKs ?

AussieNeil profile image
AussieNeilAdministrator in reply to Davidcara

Ask the community!

PaulaS profile image
PaulaSVolunteer in reply to Davidcara

Hi Davidcara, I got antibodies while on Ibrutinib. I've been on it for over 4 years, had antibody test two months after 3rd Covid jab, and tested positive for antibodies. Only 163 u/ml but better than nothing. I reduced Ibrutinib from 420mg to 140 after the first year.

I'm now been offered a 4th vaccination and plan to get it soon. Not looking forward to it though, due to several days of high fevers and nausea after 2nd jab. (Just tiredness after 3rd jab though and no fevers)

Paula

onu1tadi2 profile image
onu1tadi2 in reply to PaulaS

Hi Paula, did you need any medical advice or treatment for the fevers you got after second jab?

PaulaS profile image
PaulaSVolunteer in reply to onu1tadi2

No, I just took paracetamol. I'd heard of others on this forum having similar reactions after Covid jabs, so assumed I just had to wait it out. My sister had a similar violent reaction, and she doesn't have CLL, but neither her husband nor mine had any side effects at all (also non-CLLers). People are so very different in their reactions...

For the record, my first 2 jabs were Astra Zeneca, third was Pfizer.

Paula

onu1tadi2 profile image
onu1tadi2 in reply to PaulaS

I would be interested to know how you coped with the fevers and how long they lasted?

PaulaS profile image
PaulaSVolunteer in reply to onu1tadi2

High fever only lasted about 24 hours. Then I had a slight fever just in evenings, for several more days.

I coped by taking Paracetamol (Tylenol), staying in bed with extra blankets, kept sipping water (too nauseated to eat). Very grateful for a supportive partner during those days.

That was the reaction to my 2nd vaccination. The first wasn't so bad, and after 3rd just fatigue - no fevers.

Paula

onu1tadi2 profile image
onu1tadi2 in reply to PaulaS

Thanks for those details.

onu1tadi2 profile image
onu1tadi2 in reply to narl

I agree that there just isn't enough research development at this stage to tell if there are any dangers associated with it for particular categories of people and not enough research into the vaccines themselves to truly assess their benefits.

I had a severe reaction to the first vaccine, so I never returned for the second. Within 2 days, it caused my lymph nodes to swell to the size of golf balls as well as platelets dropped by over 50%. I know it’s not the case for everyone… and you should make the decision with advice from a doctor you trust…. but for me personally, the risk of another shot outweighed the potential benefit of a muted response . I was able to get an Evushield shot (antibodies, not a vaccine) which is supposed to provide a similar amount of protection for a similar amount of time as the vaccine provides. I had zero side effects from the Evushield shot. Plus, if you have access to Paxlovid, you have another avenue for treatment if the Evushield fails.

I too would LOVE more research to have a better idea of what the long term ramifications are for the vaccine. However, I don’t think there are any incentives for anyone to fund this type of research.

I wish you well. Stay safe.

Kirk

By effectsI am talking about side effects.

You may also like...