I got my 1st COVID vax in Jan. 2021, and my 2nd in Feb. 2021. But since I've been reading a lot lately about the efficacy of COVID-19 vaccines with folks who have CLL, I knew I had to find out if the shots worked with me. So, when I had my regular family-doctor check up earlier this week, I asked him to include a test for COVID antibodies in my panel of blood tests. As I feared, the test revealed ZERO antibodies. The doc looked me in the eye and said, "You're not protected!" He then suggested I talk to my oncologist about the matter... I'm still awaiting her response.
I'm Stage 0, and was diagnosed in Feb. 2020. Since it's so early into the progression of the CLL, I had fearfully hoped that the two shots would afford some protection. WRONG! I'm @ absolute ZERO!
I urge everyone with CLL who has been fully vaccinated (as I was), to ensure that the test for COVID antibodies is included with your battery of blood tests. And above all, DON'T GET COCKY AND BE TO QUICK TO VENTURE BACK INTO THE WORLD (AS I DID), THINKING YOU'RE SAFE. That may not(?) be the case!
God Bless...
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Jungle-Jim
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Jim, you have a whole lot of company....a lot of us are in the same boat!!!! I have no immune system and depend entirely on the IVIG to protect me and his far it has. I remain in self isolation for some time to come.
Jim, as a matter of interest, did you suffer any reaction/side effects when you had the vaccinations? As Panz has said, a number of our members are reporting the same phenomenon and a few have gone on to develop antibodies later. We have to hope our T cells are more responsive. However, caution is indeed needed.
Jim, I agree with the statement that those of us with CLL should assume we are at higher risk of catching covid and having more serious disease than others. My antibody test also came back negative, which was disappointing, but expected, because I am on a btk drug.
I do not agree with your statement that the vaccine did not afford some protection for you. Its certainly wise to assume it did not, but a negative antibody test does not necessarily equal no protection. Our immune systems are very complex and not entirely dependent on antibodies to work. You (and I) may or may not have gotten some protection from the vaccine that cant be measured in an antibody test.
I think those of us fortunate enough to have antibodies show up after vaccination are most likely more protected than the rest of us.
We need more time and more studies to see how many people with cll who get vaccinated end up getting covid and how many people get serious cases as compared to mild.
In the meantime it is up to each of us to figure out what level of risk we are willing to take to resume normal life. I do agree it is a mistake to assume that we are safe just because we had a covid vaccine. I never did assume that, only hoped.
As a lay person, I'm in way over my head, and tend to focus on the apparent. I would like to modify my concerns in the future by proclaiming, "boy, I was sure wrong about that." Regardless, I'm going to be as cautious as possible... without crawling under a rock!
Jim. I don't think the experts know much more than us lay people on this one. We are all kind of on our own, in a way, and have to be our own best advocates. Your post was helpful in reminding some readers that vaccines might not work for us.
You and I probably agree we are not going to a crowded concert anytime soon, nor are we willing to give up normal life and live under a rock.
Its in between the rock and the concert where we have to figure it out.
If it was a hard rock concert, I could have said we are in between a rock and a hard place. LOL. Sure feels like it.
I am going to dinner with three friends Wednesday night. I am passing on a dinner party Friday night. I have no real idea how much risk to take and its a day to day decision process for me. I almost canceled my dinner tomorrow because of my negative test, but decided to take the chance. There just are no very good answers for us right now.
My oncologist specialist, Dr. Ian Flinn told me it’s not yet known the effect the Covid shot will Have on those of us with Cll and immune compromised illnesses. So we do have to continue to protect ourselves.
J-J. - Many posts on this topic at HU. You’ll get a few long replies that basically says the covid spike antibodies test (if your test was same as an LLS study many of us have participated in) is inconclusive regarding determining “level of protection”. So that’s a “we don’t know” yet type answer and that more research is ongoing to hopefully find answers.
So I’m alittle surprised at your docs blunt response, though agree it’s smart to take covid protection precautions no matter what score you get. Vaccine is not an iron wall protector as the media might lead you to believe.
In this HU group, we know the vaccine does poorly for way too many. Sorry your results didn’t yield a high score.
Again, this was a general physician, not an oncologist. Another surprise... he then asked me if all of the other vaccines are ineffective as well (tetanus, pneumonia, etc.)? Surely, I'm not qualified to answer. At any rate, I hope to hear back from the oncologist soon... before my reg. sked appt in July.
With CLL, our ability to respond to vaccinations is quite heterogeneous. It varies in general with the vaccination type, then you get a wide individual variation, where treatments and time since last treatment only further complicate matters. Vaccinations are still worthwhile, because you never know how well you might respond, plus you probably get some T cell immunity.
The reason for this is that CLL can drive our T cells to exhaustion and helper T cells are essential in the B Cell maturation process where they turn into the plasma cells that produce antibodies. Also CLL cells inhibit plasma cell production of antibodies, which is why so many of us have low antibody/immunoglobulin counts, ( IgA, GiG and IgM).
Natural Killer cells destroy body cells which are cancerous or otherwise affected by invasion by a virus. I've not seen any NK specific research on COVID-19. Like studies on how T cells respond, it would be much harder than assessing antibody responses.
Hi my haematologists advice was not to take an antibody test as they don’t know how to analyse the results adequately yet. I have followed this advice to date other than to engage in studies which may through more light on this matter, like the Birmingham study which does not provide individual results for this very reason.I have a friend who does not have CLL who had an antibody test as she is on the Biobank. Her test came back negative, so it is not just our community that is showing negative results. She was told not to worry as our immune systems are complex and antibody defence is not the only way our immunity systems defend us, exactly as Jeff said.
I think we are wise with it without antibody testing to remain cautious and follow the rules a bit more closely than others around us who are likely to have more immunity than us.
Hi Jim I think there is a long way to go yet before our immunity specialists understand where we stand re Covid snd our safety. This is of course very confusing and anxiety provoking for us. Are we as safe as everyone else or not.??! I don’t think anyone has the answers to this question yet. It is reassuring however to hear that they are working hard to find answers and looking at monoclonal antibodies as a line of defence for us if needed. I believe these are now available in the US but have not heard the same for the U.K. yet. 🤞we will get more advice soon.
There are many locations in the US that provide the antibody cocktail...dozens just in S Florida. I note one antibody was just removed in favor of a combo of 2.
Does anyone know if there are any locations in the U.K. for antibody cocktails that are clearly available in the US. Maybe they are in the horizon or there is some reason why not that members of this community are aware of?Cheers
Would love to be able to export some to you folks but the only cocktail I could get away with sending you is Gin and Tonic and you Brits mastered that cocktail a long time ago!
exactly the advice I was given I too have participated in the Birmingham test..which I read, is about to report ..this week evidently which might be enlightening
There seems to be some test confusion too among family drs, so I'd make sure it was the spike antibody test that was taken and not the one specific to COVID antibodies. The Free LLS Study does both tests if you are in the US and want that info. Either way, yes, much to be learned about CLLers and COVID immunity.
Jim I am not sure what test was run. I know when I asked my cll specialist earlier in the year if he could run a test for my antibodies he indicated the test he had would only show if I had antibodies from contracting virus and not from the vaccine. The LLS study measured antibodies from both. There is a lot of confusion about these tests hopefully the testing will get more accurate and informative in upcoming months.
Jim whether you make antibodies or not, immune deficient folks need to be extra careful. Now with that being said, are you sure your MD ordered the correct test? Being you are stage zero without treatment, I would have suspected you made some antibodies ( as many have who are not in treatment). Was it Semi-Quant Spike test? If not, if it was qualitative test, it was checking for antibodies from previous infection, not antibodies from vaccine.
The qualitative tests also measure antibodies resulting from the vaccine, but only a positive or negative result is available, not the number of antibodies. The semi-quantitative test is positive or negative with a reference range and a number result for antibodies resulting from the vaccine, and usually includes a disclaimer that “It is yet undetermined what level of antibody to SARS-CoV-2 spike protein correlates to immunity against developing symptomatic SARS-CoV-2 disease.”
The test that measures the presence of antibodies from a Covid infection is the nucleocapsid protein test.
From CLL society page: “That said, there are no data in CLL patients to suggest that presence of antibodies confers protection, or even lack of antibodies means no immunity.”
I have had 3 antibody tests after having COVID vaccines. My Oncologist ordered the first one and, like yours, mine was negative for antibodies. The next two were part of the Leukemia and Lymphoma study and were different tests than the first one. I believe one test was to determine if I have COVID currently and the other was to determine if I had antibodies due to the vaccine. What was the precise description or instructions to your lab on your test? Bob j
I think that these tests are inconclusive at best. We know nothing as to how accurate they are to measure vaccine response. They are a cheap chemi-luminescent test produced by a machine that supposedly costs $4 per test to run. That does not give me confidence.
How about a more sensitive and involved ELISA test? You get what you pay for. So we really cant be sure how good this test is at nailing down amount of spike protein antibodies.
Secondly, we have no idea as to what these results mean in real life — assuming that they are accurate.
I personally look at all of this and say that we ALL should be careful, despite what these tests say. We know that CLL can make us react poorly to vaccines. We just don’t know how we react to COVID vaccines. So better be safe than sorry.
This is a weak test that even the manufacturer will not claim can measure post vaccine generated IGG. So I interpret this to mean that no result can be trusted.
I really don’t think that the LLS is doing anyone any favors testing like this. Frankly I think that any organization that uses these tests (or similar tests) to derive any conclusions — really don't know what they are doing.
And yes — I have the scientific credentials to back up what I am saying.
I appreciate all of your comments & questions (David, Bob & Jonquiljo) - I don't know the details of the test the general doctor performed. I see my oncologist in July, and your comments will help me request an appropriate test then. Tx for your help. Jim
I don’t think there are any publicly available “purchase-able” tests out these. Even many organization and research groups are using these tests. But I will say that if the manufacturer will not say that they can be used for post vaccine testing — then that says a lot. Physicians generally have little understanding of these tests. So do — but far more do not.
I intend to ask my CLL Dr in June, but expect that even he will say, “I don’t know.”
Well, the fix to no antibodies is a quick covid test upon the hint of any cold or flu symptom. If its positive? Get a quick clonal antibody cocktail infusion. You will have borrowed the most vicious covid antibodies, that problem solved.
Scratch borrowed, insert given...:)What a great idea. if we dont have enough covid antibodies, we can be given them. Given the highest quality covid fighters available.
Are you sure they did the spike protein test? My doctor ran a test which came back negative and when I looked into it I realized it was a test to see if I had developed antibodies from Covid. I never had Covid. The spike protein test looks at wether you developed antibodies from the vaccine. I had to go to a specific lab for this test.
There is research on going to understand why only 13% of individuals get a response. However antibodies is only one part of the response. There is also T cells, and this can only be checked with a serology test. I know people who have late stage cLL who had the AZ jab and were positive for antibodies. .
I had my first Covid19 jab on 11th Feb and my 2nd on 6th April. I had no adverse side effects. However, after the first one I noticed a reduction in the size of my neck nodes. This surprised me because I expected them to react and increase due to the foreign substances. After the second jab they reduced even further and I can barely find the left side ones with the right ones being the size they were at diagnosis. I am still watch and wait after almost 3years. I am due more bloods in early June and a consultant appointment. I will ask her advice then. I had Pfizer vaccine. Like so many I am keen to see our family after almost 18 months and start seeing our friends but I most certainly don't intend to take any risks.
Hi lovely to read your reply. My nodes weren't exactly huge but I could feel them. It was a lump in my neck which sent to the doctor originally. They are most definitely reduced now. xx
Please don’t forget that as we move forwards - and I realise different countries are at different stages of vaccination - most people, our friends and loved ones WON’T actually have Covid or - if as we are told - the vaccine will reduce the ability to spread it. So, the risk of us catching Covid is becoming much reduced. It simply won’t be there, lurking behind every corner. We should be careful not to imagine shadows where there is sunshine.
I agree , I was diagnosed 30 weeks ago stage stage 4. Just finished 6 cycles of Obinutuzumab. Having 40 years experience in pathology and immunology I knew I wouldn't make any antibodies and also know all my previous vaccinations have also been wiped out. I have had covid and both Jabs and no sign of an antibody. I will continue to socially distance, double mask and only have close contact with vaccinated family and friends. I am 56 with 2 children under 3 so keeping busy, but resigned to not doing much for another year or two.
Did you get the vaccine pre or post Obin? What role do neutrophils have against Covid? Please correct me if I'm wrong..VACCINATED PEOPLE CAN STILL SPREAD THE VIRUS. So the vaccine testing endpoint was death or hospitization not lack of infection or contagion. Thus, are we really "safe" being really close to vaccinated people? I was diagnosed at 48 with 2 young kids. It's daunting but I'm hoping it made me a better parent.
Hi,Vaccinated after cycle 3 Obinutuzumab. I believe I caught covid at the vaccination center... the ironey. I believe the ibrutinib and innate immunity protected me from the worse symptoms. I am 57, full time dad to my 3 and 1 yr olds. 30 weeks after diagnosis and treatment things are going well.
Honestly this was one of my biggest hesitancies to being vaccinated. The footage shown of vaccination centers make them look like super spreader events!
Your previous vaccinations should not have been wiped out by treatment for your CLL, because thankfully plasma cells, the mature form of the B lymphocyte are not affected by CLL treatments other than a bone marrow stem cell transplant. That's because thankfully these mature B cells have little CD20 expression and the B Cell Receptor pathway is considered to be effectively inactivated. That's why our immunoglobulin production is mostly spared from treatments. Otherwise, as happens after successful bone marrow stem cell transplants, we would be recommended to repeat all our childhood vaccinations, e.g. mskcc.org/cancer-care/patie...
It's an unfortunate fact that CLL is really a cancer of the immune system. That risks are identifiable but hard to quantify could cause some stress.
It's important to take the wider view of the protection of vaccines in a population over an individual, in all cases but especially for folks like us. The prevalence and thus risk of covid infection is falling away in countries which are advancing well in their vaccination programs.
My own position, diagnosed 18 months ago and on w+w has gone from Leukaemia, I'm going to die soon, to leukaemia but OK, this can be a slow and long drawn out process and I can see a positive in it now, might not even die from it and most likely it will be an infection when my immune system has deteriorated and I pick one up. That creates focus. None of us are dying, we are living. Science has met covid well, governments less so. Proceed with caution but proceed nonetheless.
the immune system consists of a lot more than just immune cells so don't give up hope We are less covered by the vaccine but it does us no harm and there is still some protection
Our head trial research nurse told us that the current UK test is only really effective in measuring antibodies in people who have had covid, and not for vaccinations.
However she also said that vaccination effectiveness ( for any vaccines) is not brilliant for immune compromised people - which makes me wonder why we bother promoting the flu vaccination program to only the vunerable!
In terms of correlating vaccine side effects against response, I’m a healthy 50 year old, and had no side effects at all from either of my AZ vaccinations.
My husband completed 6 rounds of FCR last Oct, and had no side effects from either of his Pfizer jabs this year. ( we’re assuming getting shingles a few days after his second was just a coincidence)
I posed an enquiry about any proposed Spike Protein antibody test follow-up to our Ministry of Health in NZ (who are overseeing the Vaccine rollout via District Health Boards) And received a reply that they were looking into my enquiry and would get back to me. I don't actually want one for myself, just curious.
Thank you Jungle-jim. My oncologist feared the same thing since my IGM’s were non-existing. He called me at 6 am and highly recommended that I do not get the vaccine with CLL. I also have Waldenstrom cancer too. At first, my primary dr and oncologist wanted me to get the COVID vaccine as soon as possible. Then he did more testing on my blood and changed his mind. So, Jungle-Jim was right.....vaccine or no vaccine BE Safe Out There!!!!
I have 2 blood cancers with high IGM’s (no immune system). Cancers are out of remission after 10 yrs and now showing their ugly heads. The COVID vaccine would probably not be helpful besides could cause me side effects since I am a delicate little flower with chemo drugs and also antibiotics. My oncologist Basically telling me we don’t have too much data on the COVID and CLL/Waldenstrom cancers yet. Hope that helps explaining my condition.
My oncologists would normally say, If you have a pulse, get the COVID vaccine. But, I will most likely get the vaccine in the future when my CBC’s are normal and more studies are done with my particular blood cancers. I would love to get the vaccine.....but will wait to see how Calquence works with me. Thanks for asking. I hope this makes sense.
I caught covid around Christmas and spent 17 days in hospital from 3rd January. Lucky to survive by all accounts. I was treated with blood plasma with someone else's antibodies and my family say my Facebook contacts began to make more sense from that point onwards. I was advised not to have the covid vaccination for 12 weeks after the blood plasma. I've had my first vaccine with no side effects. I will be asking for an antibodies test after my second jab. Hope you stay safe
I have heard that the antibody test may not be accurate. I also heard several doctors including Dr Furman who is a CLL specialist say that you should get the vaccine and act as if you didn’t. I am still keeping myself as safe as I can by wearing my mask, etc
So many excellent comments! I can't respond to each one, but will say thank you for sharing - that's exactly what this forum for the "community of the afflicted" is all about. I think we are all enlightened by the collective comments - THANKS TO EVERYONE! Jim
What I do know is I have had three spike antibody test since my second Pfizer in Feb. All results without antibodies. Even though many say to hard to interpret test results, if my results were different, say they showed antibodies, my psyche would be different. Would I change anything I am doing from a safety standpoint, probably not. BTW, there are T Cell test out there, but I for one have had enough testing at this point.
I’m on M&M (“Monitor & Move on”), age 67. I see a local CLL doctor once a year, and another leading CLL specialist out of state (Dr. John Byrd) once a year. I saw Dr. Byrd last week. I had the 2nd Moderna shot in March.
Dr. Byrd did the spike protein test, results were, “none detected”. His advice was to continue following the U.S.’s CDC guidelines.
On the plus side, he said he has had a total of 62 CLL patients who contracted covid, and all 62 survived.
There is a new monoclonal antibody in development that is in a clinical trial phase 2/3 that is a single injection and may give us CLL’ers good covid protection. So hang in there brothers and sisters, the science keeps coming!
After conversation and concerns expressed to my daughter staying with us during the week, she found this info which I think is pretty helpful. I returned 2 weeks ago from my MD Anderson W&W scan and blood work visit that had moved to every 2 years. They have been monitoring me since April 2010! I was originally diagnosed with Diffused, with SLL/CLL, port put in and prepared for Chemo when my husband said let’s get a 2nd op at MD Anderson. They re-ran all test including another node biopsy, and bone biopsy. In those days if any % showed in your bone you were staged at 4. My Ki67 was originally 60% which W&W was a bold move to take but turned out the correct one. As said by others on this thread, the immune system is quite complex with many ways to respond and mine began to actually respond. I did visits every 3 mos the first year, then every 6 mo and eventually to 1 year and finally 2, until this last visit which showed the beginning of some activity in my neck nodes, so will be going back in Dec. Inside of me there is always a panic that occurs and then I research and allow myself time to let my brain and emotions get settled out. In the 10 years I have been doing W&W there has been a renaissance of treatment methods, so I believe if I ever do need treatment, I will be so much better off than 10 or even 5 years ago. For me it is all the other health issues that seem to occur as I’ve aged that have tested me. For those of you on W&W do what you can to mentally stay shored up, allow yourself to find activities that get you out of your head and know that time is truly your best friend. The longer you can ride the W&W wave the better for you. (By the way, I got very sick from my second Mod vaccine, hoping that is good news, but will keep safe.) Stay safe!
In the olden days (10 yrs ago) W&W was cutting edge thinking. The original cancer center I went to took a very traditional approach (hence putting in the port, which I had removed after a year on W&W as I got tired of getting it flushed out) I thought MD Anderson was crazy and I had never even heard of W&W! But because they said we will see you in 3 mos it made me feel a little safer. My family doctor at the time wanted me in treatment, but I would share my blood work and scan results and say the numbers don’t warrant it. WheneverI got sick, I had a few days of panic and after the first year I began to realize it was stealing my time so I allowed myself the ‘worry days’ but not to let them take all my mind space and actually began to realize that I would use a 2 week principle, if the nodes were up or I felt bad. 2 years ago I got stung by something and I had a huge neck node that wouldn’t go down, so I went in to my primary, he put me on an antibiotic and the response was really slow, so he ordered a scan. Interesting it wasn’t the large node that they wanted to biopsy, but one I couldn’t even see that looked suspicious. I opted not to do a biopsy and pretty sure that is one of the nodes they are watching closer now. My blood work is decent, but then it was 10 years ago, also. One of the drugs that I did begin 10 years ago was Valacyclovir 500 mg dy and never miss taking it. I credit it with knocking back the groin nodes as they were pretty involved back then and are fine now. So, hang in there, focus on that summer app for more info and do activities till then, especially outside if you can, away from people, that will lift your spirits! It truly is a marathon-nota race for some of us, which is good!
Jim of the Jungle, I also had Moderna's vaccine in late January and early February. I volunteered a blood sample last Thursday for the US Leukemia & Lymphoma Society's ongoing survey of patients with Covid-19 shots to measure their antibody level. My results came in yesterday (May 11, 2021). My reading was less than 0.4, which means ZERO detectable level of Covid-19 antibodies!! Like you, I was and shocked! So, either our CLL treatments wipe out our Covid-19 antibodies OR I received a placebo injection. Here is a good YouTube video that was uploaded yesterday that touches on this topic: youtube.com/watch?v=8xdZd76...
Tx Dan - mine was Pfizer, but it probably doesn't matter. The more I hear about all of this, the more I'm convinced that the "jury will be out for a long time." A lot of folks have said that there are a number of different tests that can be employed, and their reliability is questionable. So, again, I'm just going to try and be as careful as I can... while not resigning from the human race. I'll continue church attendance, visits to restaurants, etc. But, I'll 'mask up,' and keep my distance.
I tested positive for covid in January thinking that I had a sinus infection. I was told to quarantine for 13 more days. The next day my husband tested positive. I was not "sick" at all, just a cough and my teeth hurt for 2 days. I did loose my taste and smell. My husband ran a fever for 2 days and slept for about 3 days. He did experience fatigue. I worked out through out the 2 weeks and didn't not experience fatigue or any other symptoms. In March at a routine blood work they tested for antibodies and I had right at 100. I am still on the fence about getting the vaccine after reading all the posts on this sight. I live in a rural area in the middle of the US. I go about my life close to normal but we don't have large gatherings around here much. I do see my Grandkids and family members everyday. I was diagnosed in 2014, ww till 2016 and have been on Ibrutinib 400mg since. Been in Clinical remission for 2.5 yrs. Not sure if I will get a vaccine or not at this point. I guess I am in a "holding pattern" at this point.
I think a lot of us share your frustration. Since you've had COVID, the experts will have to weigh in on the efficacy of the vaccines (in your case). The more I learn about all of this, the more ignorant I feel.
I signed up yesterday on the LLS site to be part on the Covid Vaccine study. I am going in this morning for the blood test. It is free and I think will help provide a data base of information about how much protection the vaccine provides for LLS patients. I know we are all focused on what is happening now and our restrictions but I think we should’ve looking further down the road as Covid continues to mutate, it will keep traveling the globe. The more info they have to understand now means the more they can create new drugs to protect the immune compromised in the future which will still be the one’s at highest risk. I believe they will develop something that will help us beyond what we know about right now. I just am reminded how far treatments have come in the last 10 years. Thank God for those so dedicated in the lab! Stay safe!
Wow-that was fast. They are using Lab Core (Nation wide) and they are set up in 2 Walgreens in the Austin area. If you check online they show where they are located after typing in your zip code. The Lab tech said they have had quite a few participants at this site and I would say because it is next to Sun City outside of Georgetown TX. Anyway I was in and out in 5 mins. So, now I know it will be an easy process if they want another blood test down the road. The print out you provide is downloaded from the site and is asking specifically for certain tests retaliated to the vaccine. Hopefully others can become part of this study. Really curious now, as I got so sick-but I know some they say that doesn’t really matter?
Been taking Acalabrutinib for 6 months. Astrazeneka 1st 9th Feb 2nd 29th April. Just taking part Imperial College London antibody test. It came back negative. I think it was testing to see if I had contracted Covid or if I had some kind of antibodies from my vaccination s?? I have left a message with my team . I am hoping they will offer me another test or some advice. Anyone else taken the Imperial College London test?
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