I visited my oncologist a couple of weeks after receiving my 2nd COVID vaccine shot, and asked him whether I could get an antibody test to see if I had a response was to the vaccine. He said there was not a single antibody test that was FDA approved,they are not accurate, no matter what the companies selling them say. I asked why companies rely on antibody tests when developing vaccines, I didn't really understand the answer. He also told me they had done already done unofficial antibody testing here on "a lot" of CLL patients here after getting vaccine, and not a single patient showed detectable antibodies. I asked whether this meant me getting the vaccine was going to be no help at all, and he said no, that he would bet if I was exposed to COVID my antibodies then would spike to fight it. I have not been to work since March, since it involves close contact with people and social distancing not possible. He said I could now go back to work ( but still wearing mask, of course), but to wait to travel for 6 months when the rest of the country has been vaccinated. He did express concern over the new variants. The only reaction to the second shot I got was my left armpit hurt for a few days (I got the shot in my left arm). My ALC also increased 35% from my last blood draw 3 months ago. I am going back for another blood check in a month to see if counts go back down to see if the increase was due to the vaccine or the CLL itself. Sorry for the long winded post!
COVID vaccine: I visited my oncologist a couple... - CLL Support
COVID vaccine
SB,
My local Hem/Onc told me the same thing.
Until some double vaccinated CLL folks get Covid or we never get it, we won’t know for sure.
Jeff
I agree. It's just disappointing and frustrating
Interesting, he told you the antibody test is not accurate but, they did their own unofficial testing with what I assume, is the inaccurate antibody test. It is disheartening no one showed antibodies, even with what he described as an inaccurate test. I wonder how many they tested?
That is helpful info. I see my doctor at md anderson next week, coincidentally the day after my second vaccine shot. I plan on asking him the same question about antibody tests you did.
I kind of expect to get the same answer you did, that is, the antibody tests are an imperfect way to measure vaccine protection and that its likley those of us with cll are getting at least some protection form the vaccine. We have impaired immune systems, not no immune systems.
I'll report back after my appt.
I am waiting breathlessly for the next Cajunjeff adventure (report). 😁
Please do share what your doctor says. I assume at MD Anderson they are up to date on possible tests. It occurs to me that our wondering about personal vaccine effectiveness is an oblivious question and one that the pharmaceutical companies should have anticipated. I think I understand the need for herd vaccine immunity but in a way that seems disingenuous. After all if I mount a strong response and Joe Jerk declined vaccination it should be his risk not my continued incarceration. Can you hear my frustration? Patience is wearing thin.
Looking forward to your experience. I was at Mayo last week for my three-month post trial check-up, and my doctor asked if I had had the vaccine yet. I had just had my first one two days earlier. He said if I had not had that shot I could have been a part of a new study which is examining the antibody response in all of their blood cancer patients. Unfortunately for me, you had to have had some specific blood work done prior to the first shot. It would have been nice to have been informed of this during the time I was looking everywhere and anywhere for a vaccine.
I fear it is true that some of us will have no response to this vaccine. Some will. And some hopefully a partial response - say enough to protect us from serious Covid. I have not seen data on this, but I know it is being investigated.
As a group we are not good at responding to vaccines and getting immunity. Yes it would be helpful to have an antibody test that tells us.
Would it be useful to know if we are NOT immune? I for one will assume I am not, despite aiming for the 2 shots.
Then there is the other thing... T cells. Antibody testing does not check our T cell responses.
Perhaps cajunjeff will be asking his dream Haem Team soon.
I will be asking mine here in the UK! Antibodies - AND T cell checks!
Jig
I’m not expecting a whole lot, but hoping for something. Would like to know if I make any antibodies after my second dose. Will not change my behavior but, positive antibodies would be helpful to my frame of mind.
I'm banking on it telling me something/anything and after almost a year with social leprosy, I'm willing to take any bit of information on my immune response as I can get... despite the limitations.
Right now my problem is in trying to get a lab order from my primary care physician. His nurse just shut me down with "we don't do that". I told her I wasn't looking to get the normal rapid test & that I'd been recommended to get the antibody test to the spike protein that could possibly give me some idea, though certainly incomplete, as to how my immune system had reacted to the vaccines. She said she'll talk with the doctor (pleaded with her not to pose it to him with the question, "we don't order antibody tests, do we?).
I learned my insurance covers anything Covid so I'll continue to browbeat my doctor into ordering it. The one I think would be most suitable is LabCorp's Semi-QuantitativeTotal Antibody, Spike test (it gives a numerical result that if above concludes you're likely posiitve (whereas another option was their qualitative Antibody IgG, Spike test that gives you a non-numerical positive or negative result).
Regards,
Gene
Thank you for this post very interesting. The only postings on here so far on antibody testing have shown no antibodies post vaccines. I hope this is due to the tests rather than the possibility the vaccines are not working for us.Ann
My hematologist does not do that testing in her office. My PCP isn't set up for it yet. I still plan to get spike semi Quantative test. Hopefully Quest does it. Going to call my insurance co. tomorrow to see if they cover it. I don't trust unofficial tests. We are all different anyway and respond differently so I would not rely on that at this time. 💕
I heard a quantitative antibody test would be best but at this time still wouldn't answer our main question - 'so did it work; did I get an adequate immune response?' What we hear from most doctors, CLL Specialists, and HU expert members is no test will currently answer that. It's still too early for that test. But I've heard from many CLL patients who say they'll be getting tested - some with Roche's quantitative test, others with a qualitative test (I'm splitting the difference with a semi-quantitative test)
I'm proceeding with the idea that it'll tell me something even if with all the caveats and limitations I'll only be able to conclude the results are inconclusive. Happened to just read an article published today, 'Leave Your Antibodies Alone', on theatlantic.com, which despite the title doesn't quite go as far as saying NOT to test yourself after vaccinations; instead it tells you the tests won't tell you what you want it to tell you.
Brian Koffman told me that doctors don't recommend it because no matter what the results are, it shouldn't change your behavior. Then (like The Atlantic article) said if I'm getting one then I "would need to order the specific test to the spike (S) protein" [BTW, he also said to watch the CLL Society site as they are working with CLL researchers to assess B & T cell response to the vaccines; he anticipates enrollment instructions shortly].
Good luck
Gene
I asked for the antibody test for spike S protein, saw the paperwork with that order, and they still did the wrong test. Sat in a lab center for a useless test. I have little patience for incompetence. Sorry. Unless you get the test for the antibody to the spike protein, it is a waste of blood.
Hello bkoffman
I suspect at the end of the day we will be in the same place we have always been with CLL, take anti-germ warfare precautions. The vaccine and/or spike S protein test is not going to allow us to roam free. Blessings.
Dee,
I agree with you in general but for Covid, it might loosen the restraints a little so we can begin to visit with our friends and family some.
Jeff
Hello Justasheet1
I agree, but we have also created our own jail. I do the same things I did before covid, like not visiting family or friends who are sick with cold and etc. Blessings.
Dee,
You can avoid a visibly sick person but not an asymptomatic one. This virus changed the rules.
Jeff
Hello Justasheet1
For me, covid did not change my behavior, but it did make a lot of other people more conscious of own anti-germ behavior. I no long have people ask me why I wear a mask to doctors appointments. 
I do not see myself back in the same place Dee, but I was not taking the precautions you were before covid. Of course I would avoid obviously sick people, but I shook hands with friends, hugged others, went to dinner frequently and went to football and baseball games without a thought to my Cll.
Covid changed that in a very profound way for me. Over the next few months, now that I have had the vaccine, I plan a gradual return to normal. It will be a new normal for me, but not in a bad way.
I will be more conscious of germs and how they spread in general. I’ll do better at washing hands. I’ll be even more conscious of sick people. Covid will have a long lasting impact on me being better at germ avoidance.
But unless my Cll significantly worsens, I’ll go back to hand shaking, hugging, going out to eat and going to ball games. It will likely involve some risk taking on my part, but so be it. I think the vaccine will protect me. If I get covid, I think monoclonals will help spare me.
This is my plan. Others will certainly choose plans with more or less risk than mine. There is no playbook for us. And if there was, we might each need our own playbook anyway.
Where I would disagree with your post is when you write “we” will be in the same place as we were before the vaccine. You might be in the same place, as you have written you had already put yourself in some sort of Cll lockdown before taking serious precautions. I am sure you are not alone, we all were taking various degrees of protection before covid.
I think most of us with Cll, just from what I have read, have been profoundly restricted by covid, and believe we will be able to get back to where we were once the pandemic dies out. And it will. Every pandemic in the history of man eventually loosened up, even without vaccines.
Hello cajunjeff
For me little will change, I am not doing lockdown any more than before covid. Like you said we each we have to make our own assessment for our own protection. I am glad to see others wear masks, but would not berate anyone for not wearing a mask, or offer to shake hands. I just use carry small bottle of hand sanitizer with me. Blessings.
It sounds like things will not change for you and I am glad you have a plan you like Dee. I was responding to you writing that "we" will all be in the same place we were before. While covid made not have created much change for you, my guess is that most on here have made dramatic adjustments in their lives due to covid, I sure have.
I do not think people who do not wear masks should be berated, although I do think their behavior leads to more infections and deaths. I just avoid non mask wearers where I can. If I were in a confined place like a plane where I could not avoid them and they are violating regulations to wear masks, then they need to be asked to leave the plane.
In the walmart where I live we have about 90% masks wearing over all, but maybe only ten percent of the guys wearing camouflage wear masks. While I worry these guys could unintentionally be killing their grandparents when they get home, it doesn't bother me as it does some others because I can easily keep my distance from them and i dont know their grandparents anyway, as callous as that might sound.
I do wonder if they think their camo protects them from covid.
😀
Jeff,
I might have agreed with everything you said. Given the way I've been planning it out and gaming it out I could've pretty much written what you just wrote... exactamente.
My game plan = vaccinations + post vax (spike protein) testing + cautious return to my pre-pandemic life + the mask-wearing & social distancing of my post-pandemic life + assurance that I have immediate access to monoclonal therapy in case of Covid symptoms + hoping for the best.
gm
=============================================================
[Hmmmmm.... not sure if I'm doing something wrong bu, though, with the above reply, I was trying to voice my agreement with your 'I plan a gradual return to normal' post, somehow it is showing up beneath the one you wrote after that (and on that post I don't have total agreement). For that one, I have to point to my one point of contention concerning your view on the 'we don't need no stinkin' mask-wearing' crowd.
To me, if you want to rebel because you feel your freedom is being trampled on - then don't wear seat belts, or motorcycle helmets, or don't heed 'no swimming, strong current' signs at the beach as in those cases your behavior only affects your life. But if breaking rules or social norms have a foreseeable outcome like dead grandparents, then I'm against it. This type of revolting behavior is revolting behavior and should incur repercussions, even if only social shaming. No shoes, no shirts, brings no service; No masks? That's self-serving (though not medically), but also a disservice to every vulnerable person sharing the planet with you. But I do know that one person giving them the same type of death stare you give to movie schmoozers, is not going to yield any positive result.
Doc,
That is important info that you just shared about antibody testing. Have you considered making a post about it being a “waste of blood” unless it’s done to a specific spike so everyone stops being disappointed by the current testing?
It would seem helpful for this crowd, especially coming from a CLL Hero such as yourself.
Jeff
I am working on an article with Dr. Susan Leclair on COVID testing. Everything takes so long and there are so many priorities.
Thanks Doc, she always explains things wonderfully. As always, thank you for your hard work. Jeff
I am wondering whether the same would apply to those who have. had covid? I had it in January and feel unsure whether it will give me any protection.
im think im the same situation, got the 2 jab pfizer about 2 weeks ago, and now im feeling like a lymph node in my neck which was the first sign of progression earlier, makes me worry , that the vaccine could do something negative about my cll, im on acalabrutinib for 6 month now.
HiI was vaccinated 15 days ago and have had 2 high quality antibody tests for igG Neutralising trimeric Spike antibodies, still no response. Will check again next week. In the mean time I tested positive for Covid19 Monday, have mild symptoms..... but my Obinutuzumab session this week has been suspended. My consultant believes I have only mild symptoms because of the ibrutinib. We are not expecting any antibodies because of my condition
are you a candidate for early Covid Tx with monoclonal antibody therapy (Lilly's bamlanivimab or Regeneron's Casirivimab and imdevimab cocktail)?
I hope that the trial i will sign up for will be T cell response after my final Obinutuzumab session with re-vaccination. Theory being that as I am on Obinutuzumab cycles my T cells won't deliver but maybe once I am clear of Obinutuzumab they may take kindly to another initial vaccine dose.
ok... you got a lot going with many questions on many fronts, which, I feel, makes me unqualified to even question any part of your plan.
Just that when hearing 'tested positive for Covid19' I reflexively injected what I've heard the course of action should be for us immunocompromised who had early Covid symptomology - to immediately avail yourself of monoclonal antibody therapy.
But you, currently dealing with CLL Tx, vaccinations, and vaccine trial decisions makes me sure you have plenty of medical professionals to ably guide you through what the complexity.
Be well.
I have 40 years in pathology, last 8 in blood cancers, plus my wife has 20 years in B cell dyscrias..... and is currently working with global experts on antibody testing and immunity...... so fortunate I got a blood cancer..... anything else would have been more challenging...lol
quite funny (in a not so funny a situation). So clearly I should butt out. However, may I ask if you would possibly butt into my personal situation?
I'm 2 weeks out from my 2nd Moderna vaccination after being 11 months removed from my pre-Covid, normal CLL life (which was extremely normal, not having had any infections or major CLL symptoms since 2012 Dx; tho' recently having had my first immunoglobulin test in years I found that my IgA & IgM had plunged from normal deep into the abnormal range while my IgG was down to 750 having had an average decrease of 100 per yr since Dx); so for months I've been rooting for vaccines only to recently find out they may not do much.
I've been itching to get back to my previous life, given it involved a group activity that both contributed physically and mentally to my well-being, but wanted to do so in as risk-averse a way as possible. To that end I felt antibody testing could provide something that could inform me about the effect the vaccines have had on this risk calculation.
So I'm looking for immune response clues from an antibody test ( if I can get my doctor to write an order). My insurance will cover anything Covid as long as I go to LabCorp. LabCorp offers 2 possibilities ( a third, "Cov2Quant™ IgG test is only available in clinical trials and research) - SARS-CoV-2 Antibody,IgG, Spike, a qualitative test, and SARS-CoV-2 Semi-Quantitative Total Antibody, Spike.
Would you have a feel for which might be best or perhaps another even if out-of-pocket (like Roche's quantitative Elecsys Anti-SARS-CoV-2 serology test)? You would be welcomed as an honored Buttinsky in this regard while appreciating any time you take to give me your expert opinion.
Thanks,
("Mutated") Gene
Hi Steve , I feel under qualified now only got a 2nd humam biology degree and a nursing diploma and I haven't got a clue lol can I ask why your on obinutuzumab and ibrutinib, I know obinutuzumab is a monoclonal antibody, are you at the start of your first treatment , sorry not read a lot of other posts yet ? Regards
Stewie
Hi, I was diagnosed with Stage 4 High risk in November at age 56. My bone marrow and Lymph nodes were rammed to the brim with CLL cells. So I started on 240 mg Ibrutinib and 3 weekly sessions of Obinutuzumab to address the load. Ibrutinib is drug of choice from my consultant for someone my age as I have plenty of time to try other options if I become resistant to Ibrutinib.
Hope your feeling ok ? So sorry Forgot to ask with your positive test , ibrutinib been fantastic for me with minimal side effects hopefully for you also Steve , are you in the UK 🇬🇧? Stewie
I am ok, just mild headache, I think ibrutinib is protecting me from covids worst. Yes , UK, Worcestershire
That's good news , that's a coincidence I'm also Worcestershire Take care Steve
Stewie
Hartlebury me.
I know Hartlebury well , i played a few tennis matches there in the league . I'm by bromsgrove Stewie
Hi how are you feeling now Steve ? Covid infection ? Hope all is ok
Stewie
Thanks. That’s interesting, but I feel there are far too many variables here. For example stage of treatment, type of vaccine.
Studies show that some CLL patients (particularly those with early stage and stable disease) do mount an effective immune response following the influenza and pneumonia vaccines. So I’d be surprised if the more traditional Covid-19 vaccines don’t work on some CLL patients, but I think the precautionary lesson here is that a response is not guaranteed and it’s early days yet for assessing the response.
My brother’s haematologist has asked him to delay his regular monitoring check for 8 weeks until the vaccine has had a chance to take effect and so maybe he’ll find out more then.
No test is absolutely reliable and some antibody tests, including those measuring Abs to Spike, are prone to false negatives fda.gov/medical-devices/cor...
But I would be pretty confident in a semi-quantitative test like Roche's Elecsys Anti SARS-COV2 S.
The odds of a false positive antibody test result are very small.
BUT, although I would be curious to know my own immune response to vaccine, I can see why some doctors decline to Ab-test patients. Knowing they have detectable Abs could persuade some to behave recklessly when they are still relatively vulnerable.
In the UK the SOAP study found that blood cancer patients had a range of responses to Covid infection, some making no detectable antibodies. Caveat: only two CLL patients. But this study is ongoing, will be extended to post vaccination immune response and will look at blood cancer patients in more detail.
cell.com/cancer-cell/fullte...
Hopefully other similar studies are in progress.
Hi, are you in the UK, If so which hospital please. Kind Regards, Tony
Thank you, good to know.My personal reaction is he also said something without total knowledge
We should ask other scientists
I will report back in a month when I have another blood draw. If my ALC goes back down to what it was previously, I wonder if I can then assume that the big increase was due to the vaccine, which would be a good thing? Am also wondering if anyone else has seen an increase in their lymphocytes after getting the 2nd shot?
Hey. Did your ALC go down after a month? My ALC went up after 1st dose of AZ vaccine. (From 34k to 50k) in 3 months. I'm due for a 2nd dose now and I'm worried it might elevate my lymphocytes further.
Below is the written response I received from my CLL specialist . . . . . which seems to mirror what some others here have received.
I guess it would make sense to see test results before the shots and compare those with results taken a month or so out, after the second jab.
Anyway, this is the rcvd response to "can I get tested for an immune response?".
: : : : : : : :
Right now, we don't have any recommendations to do antibody testing after the vaccine.
We don't technically know what level of titers would be needed to expect full immunity. There are antibody tests out there that you could go get. I believe you would need the spike protein ab test and not the nucleocapsid as that one would not be positive after the vaccine.
But, it would really only be for your curiosity.
We are not drawing these tests at this time, but have seen where a couple patients have had it drawn with their PCP.
The problem is that we will not really be able to interpret the result as "immune" or "not immune", so it is not yet very useful.
: : : : : : : : : : : : :
Keep us informed, I have CLL and have not had my first shot.
Asked the same of my haematologist. He informed me there is no test.
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