So here I am,sat feeling ‘off’ yet again from Covid booster number 4…asking myself is it all worth it? I’ve had Covid twice,first time put me in hospital twice with low SATS . Second time around it just felt like abit of a head cold! Is this the future for us immunocompromised!? Sorry if I sound abit negative.
Covid boosters: So here I am,sat feeling ‘off... - CLL Support
Covid boosters
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Nickos66
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lankisterguyVolunteer
Hi Nickos66,
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When you had your first COVID-19 event, and had to be hospitalized twice, was it before you had your first two vaccinations?
And was the second COVID-19 event after how many vaccinations?
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Len
Glad you aren't ill enough to be hospitalized. Maybe ask your doc to check IG levels, if you are low. You don't want to risk a bacterial pneumonia on top of a viral illness.
Unfortunately, being immune compromised means we are more susceptible. IDK where you are geographically, but I have had some success with getting air sanitizers (not HEPA filters, although I do use them as well) for car and at least the bedroom. Keeping the viral load low as possible, so either one doesn't get sick or any illness is minimal. Self reinfection is a known and potentially significant contributor to length of a viral illness. So swap out your pillowcase daily, or at least flip the pillow. Air out bed blankets/comforter daily if possible, or swap them out. Wipe all hard surface handles (toilet, faucets, light switch, drawer handles) with clean soapy water and leave the wet soap (soap disrupts thus inactivates the coronavirus cell membrane).
This is not overly difficult, although it does take some time building the habit of doing it. Annoying to have to plan extra time & take precautions, but it is what it is. Leaving outside clothes at the door, being careful to keep things clean, all will help keep viral and bacterial exposure low, as well as help prevent self reinfection when exposed and you are fighting it off. I purchased inexpensive washable blankets, extra pillowcases, extra pillows, etc. so I can just swap them out when ill instead of having to try to wash stuff while sick. If you have someone to help with this, that's great.
hi
I am booked in for my 5th jab and looking forward to it. I have had alpha , delta and omicron infections , was in hospital for delta as a precaution, sats fine, but platlets dropped as they do with Covid. I reckon i also have had BA5 last week.. covid infections just part of my normal life , no douht have a few more over the winter
Just wondering how you have unfortunately caught the different variants? What precautions do you take ? I had Omicron in April and landed in the hospital for 40 days. Are you Watch and Wait or on treatment?
i was diagnosis stage 4 with 95% marrow infiltration in Nov2020, picked up from my annual routie cholesterol check. Immediate 2 unit transfusion the straight to 6 cycles of O+I. Caught alpha Jan 2021 mid treatment .. caught from vaccine center. Got delta Sept 2021 then Omicron jan 2022. Followed all the rules FFP3 etc. But since 3 infection i have returned fully to a pre covid pre CLL lifestyle, no masks, concerts , flyiing etc. I am 58 with a 5 and 3 yr old , so a full time dad. Infections 2 and 3 were caught from the kids, so a matter of time before my 4 and 5 th Infections
Thank you for your response, what you have been going through is horrible. Did you manage to get a EVUSHELD shot, you might have more protection. hope that you are able to avoid future infections.
Euvsheld has yet to prove a cost/benefit to our healthcare system
I agree no one in the US has yet crunched the numbers, but I think a 77% reduction in disease incidence will end up being significant. Not to mention, decreased disease severity. My understanding is that Australia did some sort of a risk benefit analysis and found the drug worth it.
tga.gov.au/resources/auspmd...
i don't think Australian has a full finded state healthcare sysem like the UK. Because of this the cost/benifit bar is very high.
Lets hope those responsible soon realize the benefits.
Hi , I decided not to bother, I’ve had 3,all made me sick for 2 weeks
I had really bad chest infection after my 4th jab which was a Pfizer booster & the same happened again after 5th jab which was a Moderna booster. I had to have a week's course of antibiotics both times, before these episodes I hadnt had a chest infection for some years.
It is 50/50 whether I have any more Covid jabs, I am due to speak to my specialist in early October & will get some guidance.
Ask what your specialist knows about the incidence of long covid in those with CLL. A recent study of the incidence in the UK, found that vaccination reduced the risk by about 30% in the general population: healthunlocked.com/cllsuppo...
Neil
Lot’s of input to mull over! I’m UK ,I mean is it worthwhile getting booster after booster,that makes me ill or take my chances and if I do catch Covid again just get the Paxlovid antiviral treatment.
Hi Nick, Ive had 3 jabs but have decided not to have anymore....I caught Omicron from my other half in June this year....in bed and couldn't eat for 4 days...managed to get Paxlovid for the evening of day 4 and it kicked Covid into touch almost immediately.
Obviously everyone is different but for me the Vaccine knocked me about for 2 weeks.
Just reading through all your comments and it resonates with me as I’ve just had my 6th vaccine which was the bivalent/Moderna. I also had the flu jab on the same day which professionals say is fine. Oh my goodness I feel so poorly, awful throbbing headaches, aches all over and I feel like I could sleep for a month! It’s done now but it would be interesting to hear how others have faired with this new jab. Think it’s another day in bed for me today!
Yes! That’s how I’ve felt since having booster 4,Moderna,on Friday,I was offered the flu jab in the other arm and said no thanks I wouldn’t have them both on the same day,I’m glad I didn’t!
I had my 6th Covid vaccine yesterday, the Moderna bivalent. I've done nothing but sleep and rest today! Achy muscles, headache,some nausia and was sick at 6am after taking a paracetamol so that didn't work. Later paracetamols helped but l ve still got some aches. I do think the Covid vaccine is worth it as I didn't get Covid when my husband got it in June so I must have made antibodies. People (non CLL) I know have told me they might not bother with this vaccine round which scares me as I need everyone to help me/us by having the vaccine. Hoping I'll feel better tomorrow.
Hi Agfar, yes it sounds like our reactions are almost the same, I haven’t been sick though. I think it’s a small price to pay if it gives us some protection. It’s 48 hours now since my jab and even though I’ve had my 2nd day in bed I’m starting to feel a little better, I hope you do too.
I had my 6th Jab on Friday, the same one as you and I too have some side effects. Extreme fatigue for me, otherwise not too bad. I’ve not line finished my Venetoclax/ Obinutuzumab Treatment and up to now had no antibodies to Covid. Hope this vaccine gives me some protection and that I feel a bit better tomorrow.
Hi Nickoss66, I suspect it could be the bivalent covid jab that I’m reacting to, I do react to the flu jab but not as bad as this! In one way I’m thinking at least it’s done with and I’ve not got the flu reaction to look forward to!! I hope your flu jab goes well with only mild symptoms. Thank you for your reply, take care x
No jabs or boosters at all. Our whole family had covid last winter and we were all pretty sick, but no hospitalizations or long term effects PTL. Regarding caution: I personally believe our immune systems need some challenges to work properly -- however I avoid groups of people in enclosed settings whenever possible. Many people I know have had the virus in spite of the jab. It's a personal decision -- no vax is without side effects. I have never trusted the 'science' until it's been proven long term by multiple studies with input by specialists who are free to state their opinion.
Some feedback on your post:-
Regarding caution: I personally believe our immune systems need some challenges to work properly
- That's what a vaccine does. It challenges the body with parts of the virus, bacteria, etc so that it can recognise and protect the body when we encounter the bug
- Many people I know have had the virus in spite of the jab
Per Johns Hopkins Medicine, these are breakthrough infections hopkinsmedicine.org/health/...
"Perfect is the enemy of good". "Insistence on perfection often prevents implementation of good improvements" en.wikipedia.org/wiki/Perfe...
See also Dr Furman's comment on this (below) from 1st January 2021. Breakthrough infections were expected, despite what you may read!
It's a personal decision -- no vax is without side effects.
- True and some of us have good reasons for deciding not to be vaccinated. Unfortunately, the later COVID variants are much more infectious and even being hermits isn't guaranteed to keep us safe from infection. What risks from a COVID infection are lower than that from vaccination?
- I have never trusted the 'science' until it's been proven long term by multiple studies with input by specialists who are free to state their opinion.
That's your right, but it should be an informed right, for which I hope my reply has assisted.
CLL specialists seem to me to be fairly free to state their opinion. When the price for ibrutinib capsules was going to be the same, irrespective of whether one or three capsules were dispensed, CLL specialists spoke up and the supplier backed down. Dr Rick Furman of New York-Presbyterian Hospital-Columbia and Cornell, was the first CLL specialist to switch away from chemoimmunotherapy in favour of ibrutinib, etc. On New Year's Day 2021, he posted in the CLL/SLL groups.io community, giving his reasons for recommending vaccination, of which I have shared a few dot points:-
"I have been inundated with emails regarding questions of whether to take the vaccines or not. I really do believe that the vaccines offer the best means currently for helping reduce the risks of becoming severely ill from COVID-19. I hope this post will help allay fears.
1. While these vaccines have been developed and approved quicker than any vaccine in history, and have used novel technologies, we do not have any reason at this time to question their safety. The RNA vaccine technology (more later) has been used for years in animal vaccines, just not human vaccines, and are extremely well studied. They really represent a major step forward in generating vaccines rapidly.
3. The RNA vaccines use RNA encapsulated in a lipid vesicle to deliver it to cells where it is taken up and transcribed (processed) like normal RNA into a protein that is placed on the surface of the cell for the immune system to see and recognized as foreign. This really replicates what the virus itself does. There is no means for the RNA to be changed into DNA, make it into the nucleus, or enter the cell's normal DNA. The Pfizer/BioNTech and Moderna vaccines are RNA vaccines.
6. We currently do not have efficacy or safety data for these vaccines in patients with CLL. With this being said, we do not have any reason to expect the safety to be different in patients with CLL. While we do have theoretical reasons for why the vaccine might be less effective, and therefore alter a risk-benefit assessment, these vaccines are very immunogenic and will hopefully be equally efficacious in patients with CLL. We also know had dangerous COVID-19 infection is and therefore any steps that could be taken to lessen the risk of morbidity or mortality is critical.
7. We should also remember that the vaccines were shown to reduce illness, but this does not mean that patients cannot get infected and still be contagious. The vaccines may lessen the duration of viral shedding, and therefore risk of spreading the virus, but may not limit it altogether. As such, people previously infected and people who have been vaccinated, still need to follow all of the safety protocols until "masks off" if declared.
I hope this helps everyone. I do encourage everyone given an opportunity to accept the vaccine. Additionally, I do encourage everyone to still practice mask wearing and safety protocols.
Rick Furman, MD"
groups.io/g/CLLSLL/message/...
Neil
I've had Covid three times and have gotten four vaccinations. Like you, I felt a little off after each vaccination. At any rate, none of this gave me any antibodies. The only thing that produced antibodies was the Evusheld shot that I took two months ago.
Are you able to stop your cll meds while you have Covid ? I'm not a very serious case of CLL but I could NOT shake Covid until I stopped the meds for awhile. Then I was able to get rid of Covid. I have had no boosters just original two vaccines. I will be meeting CLL doc within the next two weeks then will start up again I guess. Will probably Covid test myself on Thursday morning and then have my flu and pneumonia vaccines then make appt with CLL doc and restart Meds
I think Evusheld injections are your only hope for obtaining durable antibodies
Unfortunately . . .
The UK placed this medication in a medical limbo
(someone please correct me if the following is incorrect)
From the (very) little I know, the UK authorized Evusheld in March 2022
However ,
the Department of Health has decided not to buy any doses until a full appraisal of its clinical- and cost-effectiveness has been conducted. Possibly by March 2023.
I (along with many brighter than me) sincerely believe that this decision & subsequent delay are serious errors .... low people in high places dorking things up
Bumper sticker version: UK approved its use, but not made it available.
It is available in 32 other countries.
Perhaps others on this forum have discovered a workaround and a way to get these two injections.
Good Luck
i have decided that unless someone can confirm that i will at least get some T cell response to not bother with the 6th. No antibodies at all after 5 vaccines so I probably will just have to continue shielding. Unless of course the UK government pull their finger out and make Evusheld available. 🙄 Doubt that will happen.
Unfortunately, T cell response to vaccinations has been historically hard to measure, but there have been very impressive advances in the study of how our immune system responds to vaccinations with the pandemic. That includes advances in measuring T cell response - but not to the level of store bought RAT/LFT type tests - yet.
If it's any consolation, we do seem to do better at generating a T cell response than a B cell response when we have CLL - about 80% in a recent study. That makes sense, as CLL treatments tend to mostly leave T cells alone.
Neil
Ultimately, this is a decision between you and the doctor you trust most. But personally, I'm not planning on any boosters.
I drive a school bus, so I was among the first to get the shots. I had both Pfizer shots back in Feb/March (or whenever it was that they became available) of last year. Despite that, I caught Delta last October. They gave me an infusion of the monoclonal antibodies that were available at the time, and I spent about a week feeling like I had a bad cold. I had a bout of Omicron a couple of months ago, ran a slight fever for about 24 hours, and felt like I had a mild cold. So it certainly seems that the virus is evolving toward being less deadly (thank God).
At this point, it's clear that you can be fully vaxxed and boosted and still get the virus (see Joe Biden). It's also clear that masking, particularly the way most people do it, does not prevent you from getting it, nor from passing it on if you have it. It's also clear that despite the best efforts of the medical establishment and the national media to push the "safe and effective" narrative, there are a LOT of adverse effects tied back to the vaccine. E.g., we have a large number of military pilots who have now failed their flight physicals after being forced to get vaccinated. We have a significant number of otherwise healthy adults, including athletes, who are suddenly dying for no apparent reason - so many that the term "Sudden Adult Death Syndrome" is now a thing. There's a lot of disturbing news out there, but you have to search for it or you won't hear about it.
Meanwhile, the CDC - in the event that anyone still trusts them - has modified their guidance to say that "CDC’s COVID-19 prevention recommendations no longer differentiate based on a person’s vaccination status because breakthrough infections occur, though they are generally mild, and persons who have had COVID-19 but are not vaccinated have some degree of protection against severe illness from their previous infection." (So natural immunity actually does exist - although saying so would have gotten you booted from social media platforms a year ago.) The news also broke a few days ago that "...a team of nine researchers from Harvard, Johns Hopkins, and other top universities concluded that mandating vaccines for college students is 'unethical,'" because the risk of adverse effects from the vaccine for that age group is greater than the risks from getting COVID.
If I had it to do over, knowing what I know now, I don't know if I would have gotten the vaccine at all, but there's no way at this point to undo whatever the spike proteins are going to ultimately do to me. However, I don't plan to have any boosters at this point.
Hi Sidherron,
I couldn't find any fact check regarding "we have a large number of military pilots who have now failed their flight physicals after being forced to get vaccinate.", but did find this:
Check Your Fact didn’t find any evidence 27 Air Force pilots resigned at once due to mandated vaccines. The claim originated from a website that says it publishes “humor, parody, and satire.”
checkyourfact.com/2021/09/0...
Given so few people think masking is necessary in any circumstances, it's now up to us to reduce our risk of becoming infected by wearing a well fitted N95 or better mask. It would be much easier for us if those who were shedding the virus wore a mask - greatly reducing the viral load they release into the environment, but those days are gone.
The various claims about athletes suddenly dying have been debunked multiple times. Sadly, the historical rate is much higher than people tend to believe. We think of athletes being at lower risk of sudden cardiac arrest due to their fitness, but deaths still occur. Some of the articles spreading this misinformation actually include examples of deaths, which when you investigate, happened before the pandemic!
In this 16 minute video, Dr Susan Oliver debunks the claim about the significant number of otherwise healthy adults, including athletes, who are suddenly dying for no apparent reason - so many that the term "Sudden Adult Death Syndrome" is now a thing.
Note that one of the spreaders of this misinformation is Dr Pierre Kory of the FLCCC. Reportedly the FLCCC are not against masking, but try to find any mention of it on their website!
Yes, "it's clear that you can be fully vaxxed and boosted and still get the virus", but it is also clear that unvaccinated people are far more likely to be admitted to hospital and fare worse than fully vaccinated and boosted hospital admissions.
Fully Vaccinated and Boosted Patients Requiring Hospitalization for COVID-19: an Observational Cohort Analysis
medrxiv.org/content/10.1101...
Conclusions Fully vaccinated and boosted individuals requiring hospital-level care for breakthrough COVID-19 tended to have less severe outcomes despite appearing to be higher risk at baseline when compared to unvaccinated individuals during the same time period. Specifically, there was a trend that FV&B group had lower rates of mechanical ventilation, use of vasopressors, and in-hospital mortality. As COVID-19 continues to spread, larger expansive trials are needed to further identify risk factors for severe outcomes among the FV&B population.
It's regrettable that the CDC's reputation has suffered lately, but perhaps you'll trust the Swiss more per the analysis in the plot below?
So called natural immunity - what you get from the higher risk of having a COVID-19 infection without having any vaccinations or boosters certainly didn't get the recognition it deserved. Part of that was due to the difficulty of determining whether people had actually had COVID-19 and what protection they had achieved from their infection. Also, CDC could have done better with respect to this issue. As I pointed out 2 days ago and several times before, those with hybrid immunity - vaccination + infection, tend to have the best immunity: healthunlocked.com/cllsuppo... Immunologists would say that the immunity you get from vaccinations is also natural - we just enable our immune system to safely experience enough of the virus so that it will recognise it again and protect us against severe disease - which is has been proven for the COVID-19 vaccinations.
You are correct about the paper by a team of nine researchers from Harvard, Johns Hopkins, and other top universities concluded that mandating vaccines for college students is 'unethical,'
papers.ssrn.com/sol3/papers...
I know that three of the authors have a well established anti-vax stance. Would you hazard a guess at how many researchers from Harvard, Johns Hopkins, and other top universities have also released papers about COVID-19 vaccination? From my quick look at the abstract, I expect that the authors have misused VAERS data - it's commonly done, despite the disclaimer on the VAERS site that the data should not be used in this way and there are explanations as to why. With respect to the myocarditis claims, prior to this claim, studies have consistently shown that the cases are less severe than what can occur in unvaccinated folk and there have been no deaths.
With respect to your final sentence; If I had it to do over, knowing what I know now, I don't know if I would have gotten the vaccine at all, but there's no way at this point to undo whatever the spike proteins are going to ultimately do to me. Would you hazard a guess about how much spike protein you would get from an actual COVID-19 infection compared to what you got from your vaccinations? Anyway, you might find this analysis reassuring:-
The “deadly” coronavirus spike protein (according to antivaxxers)
sciencebasedmedicine.org/th...
Neil
Switzerland COVID-19 deaths, higher rate in unvaccinated
Hi again Sidherron,
I hadn't appreciated that you are a new member. Welcome to our community, where you'll find evidence based information about living with CLL. I've collected a large amount of debunking information on COVID-19 for your reading pleasure here:
healthunlocked.com/cllsuppo...
Perhaps you'd just prefer to learn how to live better with CLL by reading our pinned posts here healthunlocked.com/cllsuppo...
Would you like to introduce yourself and share why you joined our community? We have nearly 20,000 members with CLL, support someone with CLL or who have an interest in CLL.
Neil
As well as the great information AussieNeil has given you, I draw your attention to a recent Lymphoma Australia webinar. Towards the end of it (at the 1:18:40 mark), Prof Con Tam, a leading CLL expert, provided some information about how Covid-19 has impacted CLL patients. He attributes a great deal of importance to vaccines, including all available boosters, and to Evusheld where it's available, along with antiviral treatments should you contract Covid-19. He attributes those measures with a marked decrease in the number of CLL patients who experience severe Covid-19. He strongly recommends a Vaccine + Boosters + Evusheld approach.
As a new member, you may enjoy the rest of the webinar too. You can find a link to it in this post: healthunlocked.com/cllsuppo...
All the replies to Nickos66 are negative and may not give the full picture. To redress the balance a bit.... I had the Moderna bivalent vaccine last Thursday. (I'm in remission after 2 years of Venetoclax). Forgot all about it until I rolled over in bed later and found my arm was a bit sore. No other side effects since. I sympathise with those who have had some after-effects but there must be many, many more of us who have not. That said, I would not be put off future vaccination if I had had side effects (I have in the past).
Hi, Hi, did you stop your ibrutinib during covid treatment?
Hi Ava,yes the first time I had Covid I was really ill and my consultant told me to come off it! But it isn’t the first time I have had a break from taking it,I came off it for a week to have dental treatment and I had a few weeks off it to have knee surgery,both times nothing changes with my bloods and everything was fine.
thanks for reply🌺
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