I read that vaccinations under a therapy with Acalabrutinib (Calquence) do not work well. How do you do it with booster vaccinations for COVID, for example? Will the drug then be paused? Thank you for answering!
Vaccination under Acalabrutinib?: I read that... - CLL Support
Vaccination under Acalabrutinib?
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joerg
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I personally would not get a Covid booster. Too many adverse reaction now coming out. The current Covid is more like a cold.
Hi Orangecat and welcome to our community. I note that you have just joined and while you express an interest in CLL, I'm not sure how much you know about how serious a COVID-19 infection can be when you are immune compromised by your CLL, particularly if you are in, or have recently completed treatment. Deaths from COVID-19 infections may be down*, but we don't have over 300 people dying from colds or even the flu each day in the USA! For comparison, US flu deaths from 2010 to 2019 averaged about 95 per day. statista.com/statistics/112...
The CLL Society have provided an action plan which is well worth completing to reduce your risk of death from COVID-19. cllsociety.org/covid-19-hom...
Our pinned post healthunlocked.com/cllsuppo... provides other information with respect to SARS-CoV-2 and COVID-19.
Addendum: I'm sure members would be very interested if you could provide a reference regarding the "Too many adverse reaction now coming out". How do those reactions compare to an increased risk of death without vaccination and regular boosters? Medicine is about reducing risk, while keeping in mind that any medical intervention comes with its own risks. A medical professional makes that judgement call, based on your medical history, of what to do, if anything, to improve overall health.
Neil
*The CLL Society have been providing a weekly reports on COVID-19, which, with the reduction in deaths, will now likely be produced less frequently. Here is the most recent report: cllsociety.org/2023/03/cll-... That report notes a daily average of 334 COVID-19 deaths on 19th March.
I meant to ask about your source for your statement "Too many adverse reaction now coming out". Our community would be very interested in any new reports about adverse reactions, particularly if they are delayed.
I actually did just have Covid in January. I am sure I had CLL then too. I recovered from feeling bad in 3 or 4 days but had a lot of fatigue after that for 5-6 weeks. This is all new to me. I research on sites that are vaccine doubting now. Children’s Health Defense, chaired by Joe Kennedy Jr. And the Epoch Times. The vaccine was experimental and now it is being looked at more carefully. Some physicians think it weakens the immune system. I have had 2 Moderna vaccines and one Moderna booster.
I have not had any treatment for CLL as I am just in the diagnosis stage. Each person has to do what they think is right for them.
This non profit organization is a prominent anti-vaccine one, and according to Wikepedia is one of the major sources of vaccine misinformation today. If you saw the post I did earlier today, there's some new data coming out that Covid is "not like a cold" and at least some people appear to have a decreased ability to make CD8 T cells after infection, sometimes as long as a year. Researchers are looking into this, to determine percentages affected. Common cold viruses do not do this. Historically, it can take up to a solid decade of medical information before one can realistically say for sure, what a virus may or may not do in large populations. So while it may be possible that Covid turns out to be more like adenoviruses that's generally don't damage our immune systems further, allowing secondary infections to set in, realistically it's too soon to say for sure. Just because you or people close to you are not among the 300+ still dying of Covid daily, doesn't mean this virus still isn't a serious one. Influenza kills what, about a 100 daily on average? Covid is still running numbers 3 times that. So not a common cold, and still 3 times more severe than influenza.
IMO you can have an opinion that you personally think Covid is more like a cold, but stating it as a fact is wrong. And will raise hackles here. In my opinion.
All vaccines are experimental at some point. The mRNA ones were studied about a decade before this urgent need. Will the percentages of reported side effects change over time? I am sure they will. Did these vaccines slow down the death rate/need for ICU and intubation? Yes they did.
You've found in this community, an excellent evidence based resource to help you live well with CLL. Being a chronic illness, CLL can take years to affect our health sufficiently to result in us seeing a doctor. Many of us learn we have CLL incidentally, often from a blood test done when we have some surgical procedure performed. So you most likely did have the early stages of CLL when you had COVID-19. Hence your immune system would have responded well to your COVID-19 vaccinations and lessened the seriousness of your COVID-19 infection, so for you, it was like a cold. If only that were the case for all of us!
As you'll learn regarding the current progress towards curing CLL, there is excellent progress being made with treatments that keep it under control, but both CLL and CLL treatments impact our immune system. What's lacking for a complete cure is finding some way to repair our immune systems. Meanwhile, we can best protect ourselves against the major reason we don't yet all have a normal life expectancy - dying from infections, by getting up to speed with non-live vaccinations per this pinned post: healthunlocked.com/cllsuppo...
As SofiaDeo noted in her reply, mRNA vaccines have a long research history as covered in this post: healthunlocked.com/cllsuppo... Also as SofiaDeo shared, there's evidence that COVID-19 weakens the immune system. healthunlocked.com/cllsuppo...
You will not get accurate medical information from the top source of misinformation on vaccination - Robert Kennedy Jr's Children’s Health Defense, far from it. 252f2edd-1c8b-49f5-9bb2-cb5...
Likewise the Epoch Times is not an accurate source of unbiased medical information on mRNA vaccinations or living with CLL. As you note, "Each person has to do what they think is right for them.", but you owe it to yourself and your loved ones to find sources of information that you can trust to assist you to do that. I have yet to hear of a CLL specialist who doesn't advise in general, against having non-live vaccinations. Certainly some of us would be advised to avoid vaccinations to which we are allergic, but in general, vaccinations are far safer than an encounter with the actual illness when our immune systems are crippled by our CLL.
Neil
I agree with your statement that each person has to do what they think is right for them.
I lack the scientific training to decide for my self. The path I took with Covid vaccines was to rely on my doctors. Virtually every top cancer facility in the world recommends we take Covid vaccines.
I treat at MD Anderson, widely recognized as one of the top cancer centers in the world. Here is their advice on Covid vaccines:
“MD Anderson is offering COVID-19 vaccines to MD Anderson patients and employees.MD Anderson patients can sign into MyChart to schedule an appointment for first doses, additional primary doses if you are immunocompromised, and bivalent booster doses of the Pfizer-BioNTech or Moderna vaccines when you are eligible.If you are an MD Anderson patient under age 18, please contact your care team for scheduling a vaccine appointment.Patients who have received the vaccine at another health care provider should let their care team know. Patients can submit their vaccination information using the COVID-19 section of MyChart for their care team to add vaccination details to their record.COVID-19 vaccines are safe and recommended for cancer patientsYour safety is always our top priority. We understand that many of our patients have serious medical conditions, including weakened immune systems, and are at greater risk for severe illness from COVID-19.According to the FDA, COVID-19 vaccines are highly effective at preventing serious illness from infection.After careful review of all available scientific evidence, our clinical experts have determined that all COVID-19 vaccines authorized for emergency use or approved by the FDA are safe and recommended for former and current cancer patients.”
mdanderson.org/patients-fam...
Joe Kennedy is a politician, not a doctor, and his views can be political. And while there are anti vaccine doctors with some credentials, their views run counter to the scientific community. Most Cll patients who don’t take vaccines do so against the advice of their doctor.
That said, I don’t favor mandatory Covid vaccines and respect that you have chosen not to have one. The fact you did well with Covid doesn’t prove much to me, most people do. But our Cll community nevertheless is at much greater risk for serious disease. You might be in watch and wait, but we have many members who are in much later stage Cll who are very seriously immunocompromised and at grave risk from Covid and even milder infections.
That explains why many people on here are sensitive to advice based upon groups led by Joe Kennedy that runs counter to the advice of the vast majority of Cll experts.
Vaccines can be a hot button topic for lots of us. I agree we make our own choice. I also think it fair to point out that most Cll patients who don’t take vaccines do so against the advice of their Cll specialists who are better trained to make that call. Could the consensus view be wrong? Sure. That’s the rationale many use to choose green tea and supplements over immunotherapy drugs. It’s a choice we get to make.
You might find this video interesting: it explains - in plain language - what happens to our bodies if we:
- get infected - and survive
vs
- get vaccinated
youtube.com/watch?v=M-K7mxd...
Scientific sources for the video:
Maybe like a bad cold but personally I would rather not take the risk since pre covid, I was also avoiding people with colds. I have had six Covid jabs with no evidence of antibodies yet I understand that they may be hiding in the T Cells. I shall continue to have whatever boosters are offered to me. My choice and others must do as they personally choose.
I am having treatment with Acalabrutinib for my CLL and understand that this is probably why the vaccines haven't had a visible effect.
AussieNeilAdministrator
Vaccination boosters work on both B (humoral - provided by antibody/immunoglobulins) and T (cellular) immunity. The majority of us do achieve cellular (T cell) immunity with COVID-19 vaccinations, even if we are in or have recently completed treatment. Hence our immune systems can usually detect and destroy virus infected body cells, stopping them from producing and releasing more viruses into our body.
Humoral immunity - enough antibodies in the blood to neutralise invading viruses and preventing them from invading our body cells is harder to achieve, particularly if you are in treatment. That's because CLL somewhat suppresses the response to vaccinations, plus all CLL treatments also sadly destroy healthy B cells as well as CLL cells. If you were vaccinated before you started treatment, you most likely have some memory B cells, which are not affected by CLL treatments and will be triggered by the booster to switch to the antibody/immunoglobulin producing plasma cells.
If you were in treatment before your first COVID-19 vaccination, you'll need to go off acalabrutinib for a week before your booster, allowing for some new, healthy B cells to appear which are not inhibited by the acalabrutinib, so that they can respond to the vaccination. You then need to wait a further 2 weeks for them to mature into plasma and memory B cells before restarting acalabrutinib. That 3 week period is a long time to halt acalabrutinib and should only be done with the approval of your specialist. It's possible to experience tumour flare with such a long break from a BTKi inhibitor such as acalabrutinib. Nodes can rapidly grow and your absolute lymphocyte count quickly climb, though that can be reversed by restarting acalabrutinib.
Neil
I would totally discuss this with your oncologist. In my case I was told no more COVID boosters. I am on Venclexta. I currently have COVID and am on day 4 with no real symptoms yet. My husband is on day seven and feels crappy still. We both are taking paxlovid. We both have had three jabs of vaccine. It's a hard call and should be made between you and your doctor. Some people do fine with the vaccine and others don't. Kind of the same with COVID. I don't feel like one size fits all for any of this. Listen to your gut and your doctor. As far as holding off on your Acalabrutinib most definitely check with Dr before boostering. Being on Venclexta my dose is dropped 75% while on the Plaxovid for COVID.
I have been taking Acalabrutinib for three years. I had all 4 covid19 jabs PLUS evusheld injections in October 2022.
I was not paused from Acalabrutinib at any time.
Then on the 23rd February 2023 covid 19 got me!
I began taking 8 antiviral capsules daily for five days from the day I tested positive.
Again I was not paused from Acalabrutinib.
I was extremely unwell for the first two weeks and if not for the antivirals I am certain I would have been hospitalized.
I finally tested covid19 negative on day 24!
I still have an upper chest bacterial infection despite two courses of antibiotics. I remain extremely weary after any mild exertion.
Disappointing as things were going extra well as Acalabrutinib reduced my CLL numbers to not far above normal range.
Avoid catching covid19!
Cheers
Spanish36
I was amazed to read here that I should have stopped Acalabrutinib before having my Covid jab! I was never told this by my Consultant. I have had 6 vaccinations and showed good antibody response after my 2nd one. Hopefully I still have a few! I have managed to avoid Covid so far despite now living a pretty "normal" life.
I haven’t stopped Acalabrutinub either and wasn’t aware we had to. According to blood tests I am still making antibodies but no idea how many!
I'll have to check on pausing Acalabrutinib. Just booked my 7th jab!And wife's just tested positive
😳😳🙄
I'm spending a few days in the camping car, pretending I'm on my hollibobs!
Lots of great info here. I can only speak on my experience. I was able to hold off Covid for almost three years. Been on Acalabruntib 5+ years and midway through 24 months of addition of Venclexta.
Had all Moderna vaccines and boosters and 2 Evusheld shots in 2022. That being said, I had a direct exposure 12/20, onset of symptoms 12/22, a negative test and on 12/23 a positive 12/24. Within 5 days I got on Paxlovid and it lessened my symptoms, which were not cold like, but rather kicking my butt, due to my underlying health issue CLL.
After the Paxlovid I rebounded so, it was about 3 weeks before I was over it. We tested my blood and NO ANTIBODIES because of immunosuppressant of Acalabruntinib. My Oncologist still recommends me getting the booster to help my blood cells. Even though I had the booster 9/11 and 3 months later got Covid. He believes it helped my immune system. He DOES NOT recommend Evusheld for me any more because of different information he came across.
I didn’t pause any treatment during the duration, nor did I end up in the hospital. My body did have some immune response. Hope that helps. I wouldn’t want to get Covid again and the boosters, which are hard on my body, helped me to some degree. Better than the alternative I survived Covid!
wow
I am very thankful to see the many patient responses to this post. Many of you took the time to lay out the facts as we know them today .
Very compassionate and I am thankful to have you all and this wonderful resource
I participated in the IMPROVE trial run by Birmingham University cancer research department. If you remember they were the team that we sent our blood to in the early days of the pandemic.
I am on Acalabrutinib and so I came off for one week, got vaccinated and stayed off for a further 2 weeks. My bloods were sent off at 3, 6 and 12 weeks but I have not had the official results yet. I understand that will happen in due course.
However, I used the NHS Monitor My Health to have a private antibody response test which was 303u/ml. This was at 3 weeks after the vaccination but I have not done a private test since. The result was a strong comparison to the previous 5 vaccines where my private tests were 0.5u/ml. Apparently (according to someone I spoke to in the Birmingham team), anything over 200 is clinically significant. The interesting thing was that even though I was off Acalabrutinib for 3 weeks, there was no adverse effect on my blood tests but maybe this was just personal to me.
I will discuss coming off Acalabrutinib again with my oncologist prior to any vaccine. He has also said that if I get covid, I need to come off Acalabrutinib to give my body a chance to fight the virus.
Everyone is different but I do think its a conversation that everyone should have with their oncologist prior to future vaccines.
Kate
Referring to the Birmingham University trial, the overall, anonymised result was that if you are male and on a BTK inhibitor (it doesn't matter which) then you will possibly make few if any antibodies to SARS Cov2 as a result of vaccination. On the other hand, you MAY make some and that, in my view, is as good a reason for taking the vaccination as any. I have had 2 x Oxford/Astra Zeneca, 2 x Pfizer BioNTech and 2 x Moderna. No adverse effects and, so far, no Covid and I haven't been living like a hermit. Did I make some antibodies? Was I inherently resistant? Have I acquired resistance? Have I just been damned lucky? I don't know any of the answers but I have hedged my bets with 6 vaccinations.
On the wider vaccination topic, I had all my juvenile ones at the time but got Rubella as an adult. It felt like I had been kicked in the nuts with a hobnailed boot but they hadn't brought out the MMR when I was a child. A professional colleague contracted polio in his youth (there was an outbreak in the 50s), he wasn't completely paralysed but had major mobility problems and died young. A college friend of my wife also had polio and is permanently disabled. Our kids and our grandkids have all had the Salk vaccine on a sugar-lump as I wouldn't wish polio, or even a slight risk of it, on anyone. As Neil said, there are risks with any medical or surgical procedure but you have to balance the risk from the treatment against the risk of the disease and in retrospect, I would far rather have had the momentary discomfort of a vaccine against Rubella than suffering from it as I did. My grandfather died, at 57, of TB so my brother and I had our BCG vaccination earlier than our cohort at school plus the annual Heaf tests. Both of us are still alive at 72 and 74. Who knows what might have happened had we not been immunised? You pays yer money and takes yer chance.
Once I realized that they were not helpful, I did not take any boosters. I regret taking the initial jabs, but I didn't have the facts at that time. Nobody did until the reports started showing up in the U.S. NIH Pubmed library in mid-2021.
I've was taking ibrutinib, followed by acalabrutinib throughout Covid, so I knew I had a reduced immune system. After finding out that the vaccines further reduced one's immune system, I decided to preserve what immunity I had.
I'm over 70 with multiple comorbidities involving the heart and both lungs, plus SLL (aka CLL of the lymph system). But Covid wasn't a problem when I caught it. My GP said I should come for an infusion if my oxygen levels became dangerously low. Instead, I used the I-drug, Vitamin D and K-2, and Zinc as early treatment. I had three bad days, one with a high fever, then a one week recovery. Much preferable to risking additional cardio problems that the spike protein can induce; I already have all the cardiac issues a fellow can tolerate.
I realize that some places and web sites still don't support early treatment, but rely on repeated boosters and hospitalizations. Here in the U.S., the government is still promoting Covid vaccine, even for babies.
The foregoing are just my opinions, of course. But if you do the research, you will form your own opinions. Sites like these are helpful; I picked these sites at random, but they are fairly common. - pubmed.ncbi.nlm.nih.gov/ youtube.com/watch?v=iyo2UNQ... and live.childrenshealthdefense...
If you do a bit more research, you'll find that expressing contrary positions to the official positions from health experts, including what CLL specialists recommend, is worth around a billion dollars a year to social media companies in revenue generation. They pay some of that revenue to people who spread those contrary ideas. You've found a Youtube video from someone who has been shown to have reversed their position when they found that they could increase their income to around 50,000 per month by appealing to people who share your position as I've explained here: healthunlocked.com/cllsuppo... I note that in this video, he is sharing a non-peer reviewed pre-print about a correlation that he says he expects will not be published. I expect that's because as soon as you find somewhere where the correlation doesn't occur, your hypothesis is in trouble - see attached image. You also have to prove a mechanism driving that correlation. (Update: Here is the preprint: preprints.org/manuscript/20... Reading through the comments shows that much more research is needed to determine whether the study results were correctly derived from the data, (and bias in the data needs to be considered too, such as accuracy and delays in reporting in some European states) and to determine whether there were other causes causing the correlation, such as delayed access to medical care. While the paper authors have dismissed this, I wouldn't so quickly discount that cause from what I've heard as well as what I've observed in Australia. The pandemic isn't over and medical resources are still stretched.)
When you claim that avoiding vaccination is "Much preferable to risking additional cardio problems that the spike protein can induce", you have obviously omitted consideration of how much spike protein an unregulated COVID-19 infection generates. The amount of spike protein from vaccinations is limited to that produced by 30 to 100 micrograms of mRNA (Pfizer’s BNT162b2 vaccine contains 30 micrograms of mRNA, while Moderna’s mRNA-1273has 100 micrograms. The boosters contain less mRNA. 30 micrograms is one millionth of an ounce.) I expect that is why this Norwegian research won't get published; I expect the percentage of infected people in Europe also climbed, and they would have been having much higher amounts of of spike protein, sometimes from asymptomatic infections at the time, but some cardiovascular damage would still have been done.
Per en.wikipedia.org/wiki/Child...
Children's Health Defense is an American 501(c)(3) nonprofit activist group mainly known for anti-vaccine propaganda and has been identified as one of the main sources of misinformation on vaccines.[1][2][3][4][5][6] Founded under the name World Mercury Project in 2011, it is chaired by Robert F. Kennedy Jr.[7][8] The group has been campaigning against various public health programs, such as vaccination and fluoridation of drinking water.[9] The group has been contributing to vaccine hesitancy in the United States, encouraging citizens and legislators to support anti-vaccine regulations and legislation.[10][11][12] Arguments against vaccination are contradicted by overwhelming scientific consensus about the safety and effectiveness of vaccines.
Use of the "i-drug", ivermectin - a de-wormer, sometimes prescribed for human use at much lower doses than for COVID-19, has been thoroughly debunked by many, high quality clinical trials, which naturally are ignored by those profiting by selling it. healthunlocked.com/cllsuppo...
Addendum: Correlation does not necessarily mean causation
healthunlocked.com/cllsuppo...
Neil
If I eat more chocolate, I'll win a Nobel prize? You need to prove a causative link!
I'm just not a "true believer."
I read relevant reports in Pubmed (pubmed.ncbi.nlm.nih.gov/) and saw the successes of the countries that didn't follow WHO/CDC advice. I also listened to the official pronouncements as the story kept changing for three years. Some countries even threatened their people with arrests and imprisonment. And the stories are still changing.
I don't wear a mask or take Covid boosters. I came through Covid without difficulty using early treatment.
In my view, people should try to make up their own minds.
When you say "I read relevant reports in Pubmed (pubmed.ncbi.nlm.nih.gov/)", tell me honestly, were they reports you searched out for yourself or those referenced by others who might be seeking and sharing confirmation bias studies? A recognised way to find out what's happening here, is to conduct a meta-analysis, where you establish a check-list for the selection of good quality studies, then pool the results of selected studies to look for patterns.
Which countries "that didn't follow WHO/CDC advice", were successes? Importantly, the WHO/CDC advice was quite wrong in ignoring aerosol spread of SARS-CoV-2 and hence likely caused unnecessary deaths from those who didn't think good ventilation or masking was important.
I've updated my earlier reply to include a reference to the Norwegian preprint, so everyone can read the public comments to the authors of the paper and "make up their own minds".
Addendum: This is how science is done - feedback to preprint studies so that the study might be rewritten in parts, or not published if a large flaw in the methodology is uncovered. It's not a conspiracy to hide the truth as is implied in the video you referenced.
Neil
I perused about 300 papers that listed Covid as a search term, and closely read about 70 of them.
By mid-2020, it was clear that good ventilation and limited exposure time in infected areas did worked, and masks didn't. Civilian masks never could stop viruses.
You can dig up the countries that followed early treatment in Pubmed. Last year when you asked about it, I sent info about several of them with graphs showing the dramatic impact of early treatment. There are probably more countries by now.
Dr. Campbell in the video youtube.com/watch?v=iyo2UNQ... did emphasize that it was a preprint report from Norway. He does sound skeptical about the paper getting peer reviewed publication. Your article where Dr. Campbell is criticized by Wikipedia does seem to have been written by people with an agenda.
There's an outstanding video by Dr. Aaron Kheriaty who wrote the book "The New Abnormal: The Rise of the Biomedical Security State."
The video is on Epoch TV (behind their paywall) at theepochtimes.com/dr-aaron-...
Anyone who wants to see it can DM me with their email address. I'll forward the requests to Epoch and they will send a link to that email address for free viewing.
In closing, I'm sharing information and experiences for consideration by others. I'm not really interested in protracted debates about Covid politics. No disrespect intended.
Dan
Congratulations on basing at least some of your research on what is usually a good source of study material.
With respect to your statement that "Civilian masks never could stop viruses", certainly, the unavailable back then respirators work much better. However, oftentimes reducing the transmitted viral load is all you need to reverse pandemic exponential growth as experienced in Melbourne, Australia, per the attached plot covered previously here: healthunlocked.com/cllsuppo...
I note that the video you offered to share is by a Senior Brownstone Scholar and 2023 Brownstone Fellow Aaron Kheriaty. He took up this post after being fired from UCLA Irvine for refusing to be vaccinated, claiming he had natural immunity: latimes.com/california/stor...
I'm not sure why members interested in watching his video need to pass their emails onto you, as I presume a search of "Aaron Kheriaty epoch times video" along with his published work for the Brownstone Institute brownstone.org/author/aaron... allows members to get a feel for the likely content of the video and the means to access it should they then be interested.
Neil
Mandated mask wearing credited with reversal of exponential case growth in Melbourne, Au.
The video is behind a paywall, except for Epoch TV subscribers. But Epoch offers to send a free view link for people that want it. They need an email address to do that.
Research released today demonstrates that rather than reducing immunity as you've suggested, vaccination against SARS-CoV-2 actually boosts the immunity of blood cancer patients who generate strong T-cell responses. Some very well-respected CLL specialists participated in the multi-disciplinary study which provides compelling evidence that vaccination against SARS-CoV-2 is safe and beneficial for blood cancer patients.
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