My husband was diagnosed with CLL in 2021, told to get all the vaccinations offered to him. He always re acts badly to the Covid one. So every 6 months we go through a week of him being so weak he can’t even walk properly. He’s 83 next month, this pattern of being so wiped out, muscles painful, high temperature, just generally feeling ill makes him feel like he doesn’t want to get any more of these jabs! Does anyone have a similar response?
Thank you, from his very worried wife.
I had no response to the initial 4 vaccinations in 2021 and 2022. Started treatment V+O Easter 2023, I was due the spring COVID vaccination. Delayed the vaccination until middle of cycle 3, by that time my ALC was normal, everything was "normal", might not even have tested as high count MBL. The vaccination caused a tender red patch on the arm. Fell asleep on the sofa, woke up to find my lying smart watch saying my temperature was too high to show "--". Took my temperature, 39.2°C. I had tremors between then and bed time. Felt wrung out the next day but day time waking temperature was normal. Repeated the 2nd night and day. That has now been the pattern for the next 3 vaccinations. I got a digital in ear thermometer with a back light that takes reading in a jiffy (beep!) and I can use easily in the dark when I wake up. This time I had a peak temperature of 39.9°C.
I now feel it's only worth it if they can prove I make antibodies.
I fear you are in for a bevy of opinions.
Is he an old 83 or a young 83? Does he have the mental clarity to make his own treatment choices? Can he fully accept the consequences of rejecting a vaccination that robs him of two weeks per year that he may remain alive, at least from that danger(no promises)?
If so, have him discuss it with his doctor, he has the autonomous right to accept or reject any form of medical care.
I agree with Sparkplug. If you or your husband is concerned about a vaccine due to vaccine reactions, your husband’s doctor is in the best place to help balance the benefits and risks of vaccines for him. I would certainly not rely on anecdotal stories on here from those who do or do not take vaccines for a variety of reasons.
My doctors at MD Anderson have suggested I get all the recommended vaccines, and I do. They are the experts, so I follow their advice.
If your husband is having severe vaccine reactions, then I would report that to his doctor. For some people with a history of severe vaccine reactions, maybe the risk of the vaccine reaction outweighs the protection, I dont know, that seems like a doctors call to me.
For me personally, I usually just get a sore arm for a couple days which is well worth the protection vaccines from getting the flu, covid, shingles, pneumonia or rsv, or getting a milder case thx to vaccine. If my vaccine reactions were profound and intolerable, then maybe I risk not having protection. It’s an individual thing to me. But if someone on here thinks vaccines are ineffective for us, I am certainly listening to my doc, not them. It is a choice, that’s for sure.
Hi my next door neighbour (55 yo healthy) was ill 3 times by the vaccine with each 3 jabs.
Last one so sick he could not go back home, his son helped him to go back, he do not want this jab again.
My wife was sick the first night after the first jab but not the second one. She had no more jab!
What is sick?
My wife almost faint after the jab this night. A friend of us faint during the night just after the jab and was sent to hospital but they found nothing !
Then my wife had some tinnitus and some vertigo during almost a year.
My neighbour told me he was exhausted could not go home he was afraid. He do not want this vaccin again.
Consider the immense number of variable causes that you must rule out before you can link those to the vaccine.
When COVID-19 was novel people went into the hospital and did not come out, ever...and you compare that to almost fainting?
As for your friend, the hospital, you report, found "nothing" ; that is not proof, it is the exact opposite. They should have residual evidence that the vaccine caused it.
yes Spark Plug, that is right.
But I saw other people who were sick just after.
My haematologist told me he saw more big lymph nodes after the vaccine
Mine disappeared in 2018, we do not know why ( never had treatment but still have enlarged spleen) I was afraid and I did not have this jab .
But in France there was more death in 2022 after the 2021 year of vaccination than in 2020 with the pandemic !
673 637 Death in 2022
669195 in 2020
Why ? More cancer? More heart attacks ? Or more respiratory infections ?
The source is in this link from INSEE ( it is in French but there is a data sheet with all the numbers per year. See TABLEAU)
insee.fr/fr/statistiques/62...
Why ???????
More deaths from Long Covid, maybe? Numbers lagging because of delayed impact.. strokes, heart attacks, road accidents because of brain damage? Covid is systemic, so could be various things. Also, I hate thinking of a human life as a data point on a graph, but the difference between those two numbers is not huge, comparatively. Is it?
Just my thoughts. I'm sure others will differ.
As for my experience of Covid vaccination, had my flu & Moderna Spikevax together under two weeks ago. Reacted more strongly than usual this time, but first time having both at same appointment.. a little sore at the injection site for about a week, felt like I was coming down with 'something' for about four hours, palpitations and raised BP for a few days, but normal now, and feeling fine, so - FOR ME - the benefits definitely outweigh feeling off colour for a few days.
Speaking of which, decisions based on effectiveness (stimulating antibodies) is highly subjective. For example, I saw a Professor who headed up a vaccine response study give an overview of results on a webinar, who - in my opinion - passed off a 30% response as good. To me, 30% is nowhere near good enough when 'the normals' are getting upwards of 80%. So.. 'effective' for one person may not look the same for another.
Personally, I see vaccines as one weapon in our arsenal, but I trust my well-fitted FFP3 (N99) respirators as my main protection, plus distance, portable HEPA, and anticipate arrival very soon of my new CO2 monitor (an Air Spot key ring, which I shall wear on a lanyard). Haven't got around to it, yet, but also planning on Enovid spray (or the German equivalent) and CPC mouthwash.
... And a partridge in a pear treeeeeeeee! 🎼🎶📯
I agree :difference between those two numbers is not huge, comparatively. Is it?
So if the number is approximately the same as the terrible year of so called pandemic…..
So There is no improvement in 2022….?
That's not what I said. Please don't put words in my mouth. You asked why there may be a discrepancy, and I suggested a few of the possible reasons. As did you.
And "So called pandemic.."? Do you doubt it?
😉 We have now a papy boom ( after baby boom in the sixties)…..population is older than before and weak.
Lot of health problems …. Retirement etc…
So 613456 death in 2019 / 669195 in 2020 /661818 in 2021/ 673637 in 2022 (we are around 67 millions people in France)
I guess 630000 in 2023.
Phiphi
I took the liberty of using the translator in my browser to take your source French, and translate it to English as most following this conversation are doing so in the English language. [insee.fr/fr/statistiques/62...]
Evolution of the number of deaths in 2022 compared to 2020 and 2021
In 2022, all-cause deaths are higher than in 2021 (+ 11,819, or + 1.8%) and in 2020 (+ 4,442, or + 0.7%), according to vital statistics data as of January 27, 2023. [my bold emphasis]
One cannot take a report that is demonstrating all deaths are on the rise and simply imply it is evidence that it is a vaccine causing it. The only statement this link shows is that France's death rate is rising. No reason, or hypothesis was put forward.
Which is more plausible? A) The death rate for France is rising because a the Novel COVID-19 virus established a foothold, and has not been eradicated with many variants continuing to cause problems, on that front. Or a novel virus COVID-19 came on the scene and a vaccine was developed, which many have refused to take and the vaccine is killing more and more people that haven't taken it?
Occam's Razor applied, choice B is rather farcical.
By the way, U. S. news is experiencing waves of many illnesses respiratory, and long forgotten Measles, Whooping Cough, and Walking Pneumonia. The medical field is losing ground. Did COVID-19 leave traces of underlying weakness in the immune system? Or, did the widespread refusal to do anything that may encroach on one's immediate need for instant gratification, entitlement, and lack of cooperation for the greater good attitude play a part?
Phiphiminux, for many years, you have been replying with anecdotal comments arguing against COVID-19 vaccinations. This recent post shares the results of a study on the number and percentage of deaths from COVID-19 for CLL patients, both vaccinated and unvaccinated against COVID-19. healthunlocked.com/cllsuppo... While we know that vaccinations don't work as well for us as they do for people without CLL, this study report clearly shows that there's less risk of death for vaccinated CLL patients.
We now have irrefutable evidence that COVID-19 vaccinations save the lives of CLL patients undergoing treatment, when they are most vulnerable to infections. Hence the statement by the highly respected CLL specialists about the study findings; "Overall, these results suggest that all patients with CLL should receive COVID-19 vaccination even while receiving therapies believed to inhibit vaccine response."
Neil
Even though I get quite sick after each vaccination (had my 7th one Tuesday and beginning to feel better today) I continue to follow my doctor’s advice. I must add I dread the vaccination knowing what will follow, but always hope the misery that accompanies the shot will offer some protection.
Hi Neil yes I report some anecdotal story , but I also shared the official data for death in France.
Philippe
As of May 2023, France was the country third most affected by COVID-19. statista.com/topics/6126/co...
".. there were 12,700 patients currently hospitalized with a COVID-19 infection and 710 COVID-19 patients in intensive care."
statista.com/statistics/110...
Neil
Since 2020 they named Covid-19 infections all kinds of diseases : influenza colds sore throat fever etc…
Influenza disappeared !!!!!
I knew people in 2021 who had cancer for a long time 10 years for one the other had Waldenstrom disease they were declared death with Covid
There relatives were not happy with this because it was not Covid that made them died (it was the beginning of vaccination in France they did not had the jab because they were at their end of life)
I know it is anecdotal but it is real.
But all the people who were at their end of a long battle against diseases have an impact on statistics.
There was an increase in death : 60000 in 2020 and was roughly the same the next years.
In2022. 81% of population had 2 or 3 jabs and 91% had 1 jab
I do not say Covid does not exist
They told us to vaccinate the young to protect the older who were vaccinated !!!
Many doctors around the world are sceptical with these jabs : first Dr Montagne who had Nobel price for the discovery of AIDS virus, in France we have medical doctors ,bio statisticiens. Genetic specialists dr A. Henrion Caude. In Belgium dr Martin Zizi , Uk cancer specialist Angus Dagleish…
I hope this story will finish soon.
I know I m fragile with CLL I have one infection every winter since a very long time.
Hope these Covid story will finish soon.
I hope we are always free to share our opinions on this site.
Wish you the best
Phiphi
I agree with some of the responses provided that suggest this is a discussion to be had with your doctor. Anecdotal evidence from others does not provide enough information to make an informed decision.
You and your husband could discuss a different Covid vaccine, for example.
It’s important to get all the vaccines recommended now because his immune system should respond bette now than later.
Hopefully the doctor will provide guidance you feel comfortable with.
Thanks, I think you are right. I’m going to see if the Dr can suggest a different vaccine for the next one. This one renders him completely unable to move and this makes it dangerous as far as stair climbing( he’s had a lot of falls), so I need to have a discussion in time for the next round. Thanks
Maybe this is his body's way of telling him that he's better off not having these jabs if they make him so ill! 😱
Or...maybe it's his body's way of telling him his body is producing a immune response and after he feels better, he'll be safer!😌
😒
Agree. I know here in the U.S. it is common for the Pfizer vaccine to not have has many negative side effects as the Moderna. Anecdotally I can say this worked out in my family as well. I have 3 adult children and then my husband and I all got the vaccine. Three of us got Pfizer and had no reaction and two got Moderna and were very ill for 24-48 hours. So maybe he can request the Pfizer vaccine. I know when I got my boosters, I specifically asked for Moderna since I’d only had Pfizer. I had a reaction to the Moderna vaccine as well and I never react to any vaccines. Just food for thought. But I agree — please ask his doctor and make the decision with him/her. Covid is nothing to mess with. The vaccine doesn’t stop you from getting Covid; it stops you from dying from Covid. All vaccines can have side effects. But as a friend of mine said recently, vaccines create adults. They are why all of us lived past the age of five and through many a flu season.
Thank you. I think we had Moderna, I’m going to speak to his doctor and see what he suggests.
Or maybe its his body’s way of saying, if you think this vaccine reaction is bad, wait until you see what reaction you get to a full blown case of Covid without the protection that vaccines provide. And I’m not really pro vaccine or anti vaccine, I’m more in the get a good doctor and follow his or her advice on vaccines camp.
Everyone is different with cll, and there is no one size fits all hat to say what vaccine each of us should take or not. I can say that from what I have read, most Cll specialists at top institutions recommend we get covid booster vaccines.
That advice might well be different for an 83 yr old who does not tolerate vaccines well, maybe the vaccine reaction outweighs the benefit. Or it might be that an 83 yr old, above all, needs vaccine protection for an infection that could be fatal at an advanced age.
I’m a lot younger get but even I am tired of vaccines. Recently I had my Covid, and week later my flu. I now need a tetanus top up that I really do not want to have. These vaccines do make you feel unwell as you immune system reacts. I would guess your husband is having a shingles vaccine, and that does really make you feel rotten. The only thing I would say is these vaccines will protect him from those infections in the future. So the balance is the temporary discomfort now or the potential longer infection and discomfort should he contract an infection.
Hi yes i too have a bad reaction to the covid jabs. Doesnt matter which one it is i have the reactions, this last one was the raging headache, chills shivering overheating, lumps under my armpits, i have to book a week off work after them as it usually around 3 days im ill for, i dont have any reaction to any other jabs just to covid one.I had both my jabs two weeks ago, now unluckily for me have come down with a viral infection so am off work again, i work in a supermarket so i think its better to have them , there is usually a lot going around this time of year.
I had the first three. No reactions. Instead of having more vaccines I keep masking.
This is an ongoing dilemma we have with my mum. She had a very scary reaction to the shingles vaccine and has also had bad reactions to flu vaccines. We chatted with her team at the time and actually they advised against the second shingles shot. I find most drs advise them but as pointed out on here, it’s a question of what’s right for your husband.
Thank you. I’m going to speak to the Dr, see what he says. John couldn’t have the shingles one, they wouldn’t give it to him as it was a live virus apparently. It’s a minefield, you need the protection but, the re actions are awful.
There is a shingles option that isn’t live which is what they gave her. …but it wrecked havoc for my mum.
Yes, I had the Shingrix vaccine (parts 1 & 2), but unlike others here, I don't recall any reaction.
I had the shingrix vaccine too and had no reaction. Shingrix is not a live virus. My cll doctor recommended it. If you are able to discuss the covid vaccine with your husbands doctor, you might also ask if he recommends shringrix vaccine for him.
Shingrix can be a truly awful affliction. I am happy for whatever protection shingrix gives me. The same is true for my covid booster which I took last month with no reaction.
But I certainly might feel more reluctant to vaccinate if I was having vaccine reactions as you describe. I think his doctor can best help answer how impt the vaccine is to him. I wouldn’t want to subject myself to a few days or a week of feeling bad due to vaccine. But I like to get out and about and do things among people, and I personally feel better doing so with the protection vaccines provide, even if it’s just making an infection less severe.
Indeed yes, the Pfizer vaccine knocks me out for a week too with what feels like nasty flu with uncontrollable shaking, high temperature, vomiting on the first night, increased swelling in the lymph nodes and zero energy. I've been told it's a preservative in the injection that may be causing the reaction but who knows. I try and remember that if I get COVID chances are it would be a lot worse.
I totally agree- I had Moderna a week ago. I'm still sick & feel a head cold coming on on top of it. I had 1 shingrex vac a couple years ago. Found out I'm allergic to it! So no more of that. Yet, I'll be getting every vaccine I can for as long as I can. As terrible as I now feel, I'd rather endure this than have full blown covid. I suspect I'll be a long hauler without the covid vaccine.
Immediately after Covid jabs 4 & 5 I got chest infections which needed antibiotics to clear up so decided to have no more - I just told Dr who didn't disagree with my decision. A few months ago I was started on O & V which produced a very bad reaction after 30 mins of 1st Obinutuzmab infusion so it was stopped. A couple of days later I went down with another chest infection - so more antibiotics. Consultant now recommending Venetoclax & Rituxumab when another unrelated isuue I have has been cleared.
Hi, I’m also in my 80s and currently on treatment with Acalabrutinib. And due to get my vaccinations later today. Having read your message and the diverse range of responses, I messaged my CLL haematologist. Her immediate reply was “Re vaccines, I'm very keen for you to get COVID and Flu vaccines to get as much protection as you can going into the winter season.” That’s clear and good enough for me! Best wishes to you and hubby.
I had such a bad reaction to the Moderna vaccine that even my specialist suggested I shouldn’t try another one. I’ve never had a reaction to any vaccine previously. I did get Covid just before Thanksgiving last year and again about 2 months ago when I was going through some extensive dental work. Covid was easier to endure than the vaccine. I’m pro vaccines and am up to date on all the other vaccines. It’s a decision to make with your specialist. Sally
nitanut, I have had a bad reaction to the Covid and the Shingrex. I spoke to my primary doctor and my hematologist/ oncologist about it and was told they prefer me to get the shots, but understand why I won't. That settled it for me. I do get the flu and pneumonia shots and mask if I can't avoid a crowd. I should get a Christmas mask for my Christmas shopping spree. 😊Sandra
Diagnosed 1999. No covid vax. Ever.
Yep. I had THREE simultaneous injections by a pharmacist at Walmart about a month ago (Covid, Flu, and Tetanus). I felt ill for a week. My joints ached and my arms were sore (and still ache). I had a mild fever for a couple of days. My wife says that I deserve it for being so irresponsible as to listen to the pharmacist and accept 3 vaccinations at one time with my compromised immune system. Duh! That being said, it is absolutely necessary for a CLL patient to get the vaccinations to assist the immune system.
You know, a lot of these "symptoms" also occur when one gets an actual infection too. If these symptoms are a result of the bodys' immune system reacting and making antibodies, just think how worse it might be without at least some antibodies already on board. Then you'd be not only trying to make antibodies, but additionally dealing with the effects of the infectious agent itself.
That being said, I've noticed some of the newer vaccines use excipients that weren't used previously. Some of them are known to cause allergic type reactions, others are IMO capable of doing so.
Had both flu and covid vaccines same day last week, only downside two sore arms for a few days, but each to their own.
Dave.
ibrutinib and swollen hand/forearm
MRD Results 
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