After recently having my 3rd COVID vaccination I have now received results from an antibody blood test (National CLL survey) and the result is that there are No Antibodies detected.
Even after 3 vaccinations still no antibodies in the blood!
Is this normal for CLL patients?
Unfortunately, it is not that uncommon to judge by the discussions on this site.
I have just this morning ordered a test from the UK government - oddly, the form I filled in only mentioned up to 2 vaccinations, whereas I have had a third - and there was nowhere to correct this or make a comment at the end.
We'll see if I have any antibodies in a couple of weeks, I suppose.
Do you know if we can get this test in Wales? I have only heard of it on here.Cx
Hi. If you can go online and Type National COVID cancer antibody test. I believe it covers all the UK.
I tried, but I think you have to be part of an antibody testing scheme, which it specifies for Wales. I did try earlier on the site but have never had a reply.It’s not important, as I’m still shielding anyhow, but thanks anyway.
FWIW, I am taking part in the Birmingham survey on vaccination and antibodies in CLL patients - I live in Wales - maybe that's why my request was accepted.
Hi You can try the link as it is national. covidcancersurvey.uk copy and paste into search engine or try typing the below.
National COVID Cancer Survey
Hope this works.
Doesn't seem my posting registered on site. Apologies if this is a duplicate.Just to say that I use Monitor My Health, a UK NHS supported service in the UK for antibody tests. £39 a test and you get results online within 3-4 days of sending sample. Helpinghand
Hi. I recently tested negative for antibody's after two vaccinations.
Annoying - take care.
i have a very very low number of antibodies after 3 shots and I probably got those from IVIG.
john
I would venture a guess based on limited data from a couple studies and from anecdotal reports on here that about half of us with Cll develop antibodies to the covid vaccines and half of us do not.
The ones most likely to produce antibodies are those early in their Cll who have never treated and those who have completed treatment and are in remissions. Those of us on btk inhibitors like ibrutinib are very unlikely to produce covid antibodies. Those of us on mab drugs like obinutuzumab will almost certainly not produce antibodies.
We have some reposts of people developing antibodies on their third or fourth jabs. Some people report success mixing vaccines.
I had two Pfizer jabs and one JandJ jab, none of which produced antibodies. We might still get protection from the vaccines in ways that are harder to measure such as T cell response. We might also have some covid antibodies below a level considered measurable or therapeutic that might help make a serious covid case lass serious.
I have taken regeneron antibodies prophylactically after covid exposures and was excited to read on here that this treatment might give me longer protection than first thought, up to 8 months rather than the one month protection previously reported.
I plan on repeating my regeneron infusion at some point and then taking the longer lasting antibody treatment which I expect will soon be approved.
And there are some promising antivirals in development and some recently approved depending on where one lives.
Covid is a dangerous disease for us, but we have much better chances of surviving it now than we did a year ago at this time.
Hi Jeff
I think your guess is probably fairly accurate from what I’ve seen and the results of the Birmingham university study. I recently paid for a test and had a 10th of the antibodies of my wife’s 265.0 U/ml. I am still on W&W. Although I do feel recently that I’m heading towards treatment soon.
The new antivirals that have been approved in the UK now, do gives us more hope for normality.
I am untreated on W& W still no antibodies.
I have no antibodies either. I was just observing that as a general rule, those who are in watch and wait and have never treated are more likely than others who are treating, like me, to produce antibodies. I don’t think the unfortunate fact that you are not treating and did not get antibodies changes the general rule anymore so than the fact that a very few of us treating with btk inhibitors do produce antibodies.
I must weigh in on this subject. I have had 2 Moderna vaccines, 2 Pfizer vaccines and two weeks ago a Full strength Moderna for a booster rather than the usual 50% dose. Now I have had 5 antibody tests. For the most part an antibody test one week ahead of of a vaccine and the at 4-6 weeks after to track what may or may not be happening. I am part of the LLS study and participate in a study by LabCorp. There was no test before the first Moderna the testing started 5 weeks after that first shot. I am tested for two things. One is the actual number of antibodies made from a vaccine and the second to see if I have antibodies from a direct Covid infection. Well, the first antibody test showed no antibodies from the Moderna and negative antibodies from a direct infection. The next test following the second Moderna was the same…no antibodies from the vaccine and negative antibodies from a direct infection. So then I thought why would I even consider a Moderna Booster when there was nothing to boost and thus I pursued the Pfizer route. The test before showed nothing had changed. I had the first Pfizer the the 4-5 week testing showedstill negative for antibodies from the vaccine and still negative antibodies from direct infection. Then the next Pfizer vaccine and the test that follows at 4-5 weeks showed I had a 7.1 antibodies from the vaccine and I tested positive on the antibodies from a direction infection….WOW! Well, I was a anxious for the next test to confirm that this wasn’t a lab error. Then the test before the Moderna full strength 3rd shot showed I had in creases to 14.2 antibodies from the vaccine and yes I’m was still still positive antibodies from a direct infection. So I am now waiting for the antibody test following this 5th injection….that will be the first week of December. I am very anxious to see what is going on.
They don’t give you a number on the antibodies made from a direct infection just if it was negative or positive.
Here is a bit more info: yes, I was sick for 2 months with extreme issues with my head and I had seen my doctors 4 different times and neither one ever suggested a Covid test as the symptoms just didn’t fit. My gut told me perhaps I should request a test but to be totally honest I felt so crappy I just blew that idea away. Well, the ENT( ears, nose and throat) doctor told me I was indeed in
serious trouble and he had never seen such a nasty nasal passages in his entire practice and we went work dealing with that complicated by the deviated septum. I now regret not having had a Covid test during that time. But then just to stir the pot more…..it is a fact I receive IVIG every 4 weeks and the LLS study informed me that they had been detecting antibodies in IVIG since the middle of May of this year which was expected but was way ahead of the time frame he had thought.
But be that as it may it is a WIN WIN for me and I am very grateful indeed.
I will report what my antibody test shows the first part of December.
My younger brother and a niece both have been on Imbruvica for 2 years and neither one have tested for antibodies.
All the very very best everyone dealing with this issue.
Panz 🦃🙂💕🙏☘️
Very interesting post... I'm a bit surprised you refused a test - it's not nice (a nurse sticks a swab up your nostrils rather vigorously - it's a bit painful - but only for less than a minute) - we had this done so we could travel back to the UK from France - so no big deal really, unless the test you were offered was more invasive?
I'd advise anyone to get a test if it is needed or if there are suspicions of infection by COVID.
I didn’t refuse a test….it was never offered and with the state my nasal passages were I don’t think the EN specialist would approve of anything being inserted into my nasal passages.as he found it nearly impossible to get his instrument in that had a camera. At the time we were pulling 2 1/2 to 3 inch blood clots out and having issues stopping the bleed…like he told me at the time he had never seen such a mess. My platelets were at 70 which wasn’t helping either.
Panz 🙂💕🙏☘️
I dont imagine you thought this terrible nosebleed was related to covid. You had vaccines and tests to protect yourself.I really hope the ivig is helping us. I read a few months ago that the immunaglobulin stores were found to contain antibodies to covid. My consultant told me that it would be in it by now. I really should get my antibodies checked. I hope you are feeling ok. Anne uk
Very nasty! Now I understand...
My platelets are pretty low, too - consistently under 100 since chemo - but, oddly, I don't seem especially prone to bleeding. Go figure.
Sorry to hear this, it is dispiriting.
It might be helpful if you edit your post and show which vaccines you received..Presumably, 1+2 were AZ and the booster was Pfizer. It this correct?
When did you get the booster jab?
The time since that jab may help guide whether your antibody test shows the likely full outcome or not.
Did you get any symptoms after any of your COVID vaccinations?
Such as headache, fever, chills, shakes, sweats, weakness.. ? Such things are likely a good sign - sign that the vaccine triggered a strong response, and that some antibodies may arise, perhaps after some delay.
Our CLL provides us immune dysfunction; we get no guarantees here.
———————
No wish to be pessimistic, but.. (sorry)
I read immunologists describing how Delta variant SARS-CoV2 harms the t-cell response and runs more quickly than usual b-cell response.. that this is a really nasty virus.. that mitigations and caution are, for now, for the foreseeable future, the new normal.
ie.
Wear an n95 or better, well-fitting, face mask.
Avoid crowded spaces, especially indoors.
If indoors, avoid poorly ventilated spaces, or stay a minimum of time..
..and prefer spaces that use HEPA (US MERV) air filter purification.
If CO2 monitors/readings are available, avoid spaces with CO2 above 600-800ppm .. as this reflects inadequate ventilation.
I am struggling the same as everyone else to grasp what to do with the time between now, and when such indoor air quality/safety mitigations are commonly in place, so that we can live more normal lives with some sense of adequate safety from infection.
Assuming one survives 1st infection, immunologists guide that subsequent infections tend to be more severe —- that the virus does damage to the immune system.
I urgently need to find some good work from home options, as well as some calming zen hobbies.. harder in winter, when days are short and weather less appealing for getting outside.
i have cll and cml. i take dasatinib every day for 3-4 years, i forgot!i got moderna 2 shots. then i asked and got a script for free labcorp antigen test.
it said positive. just positive of negative.
5 weeks later i got 3rd moderna (full dose, as the others).
the side where i got last shot lymphs swole up. other effects, for like a month or so.
i thought i was supposed to get that 3rd, after a call i got. anyway, done now.
Have had 3 Pfizer vaccines - did the antibody test a week after the 3rd vaccine (will have the booster in 6 months) - no antibodies and proof by all accounts that I haven't had Covid in the last 6 months either.
I'm also in treatment O&V so not sure if this has any affect.
Hi,Depends on where you are on CLL journey. I was diagnosed 1 year ago stage 4 straight to treatment, after 6 months I was in remission. I have had 2 jabs and two covid infections, still no antibodies. Remember antibodies are only part of the immune system.
I am not seeing any designation here between IgG nucleocapsid Ab to protein N (infection) VSIgG seni-quant Ab to S protein (vaccine).
My understanding after looking at information available from the Birmingham Univetsity study is that those being treated with inbrutinib and venetoclax don't usually develop antibodies. Those on w&w and where treatment has finished usually develop antibodys but usually at a lower number.I am being treated with venetoclax and had 3 vaccines, 2 AZ and Pfizer 3rd, took test about 6 weeks after 3rd and to my surprise it returned positive result for antibodies. Don't know level but suspect it is low.
However don't despair there is several arms to the immune system and I have seen reports that people who have not developed antibodies have a response from their T cells .
Even if you have a good antibody level advice is to remain vigilant and cautious. That is very true for us with CLL, but there is no need to self isolate, just avoid crowded enclosed locations, I do not use a face covering anymore but p3 mask because the way coverings work and many aren't using them now.
Its the same for me I don't know about others but I believe some have antibodies but it doesn't say how many.
All the best
3 Pfizer's and no antibodies😖.
Hi SAJ. For context, could you please say what stage of CLL you're at, what treatment and when, latest labs etc. Maybe update your profile? For more privacy you can lock your posts to make them members only, which may enrich feedback.
Yes. Especially those in treatment or that have had treatment before. Cll is like cancer of the immune system.
Hi everyoneThis is a new member posting. I use Monitor My Health for antibody tests in the UK. It is endorsed by the NHS and a test is £39. Results come back within 3-4 days of submission of sample. Helpinghand
I have had 4 Moderna vaccines and no antibodies. I take acalabrutinib.
I only had a 52 score after 3 shots, and I am told I needed a 330 to consider myself protected. I had Rituxan at the end of last year and am on Venetoclax now so I consider myself kind of lucky. I was also taking some prednisone just prior to the booster. They have scheduled me for a 4th shot on February 16th.
I have had 4 vaccines, 2 Pfizers, 1 J and J, and 1 full dose Moderna. Still no antibodies. I have not had any treatment since Feb 2021 which was Ibrutinib.
Join the party...... I, too, had "no detectable antibodies" after my 3rd vaccination.
Hi SAJ,Just about to do my finger prick for the NHS antibody test. Like some previous comments, if you're not on one of the surveys shown, you have to click 'other' and put in a survey reference number, otherwise no test. Two previous tests = no antibodies, but I've had a third primary dose so fingers crossed but not hopeful.......best wishes to everyone. Freddie
Sorry to hear that but I to have no antibodies after 3 Pfizer vaccine shots. CLL strikes again. Gary
Had my 3rd jab several weeks ago. Had 2 antibody tests since then and both show NEGATIVE for antibodies. Not unexpected as I didn't mount a response to the first 2. Plus I'm on BTK inhibitor drug trial. Studies have shown that those of us on BTKi are far less likely to produce a positive responses than others with CLL. Hey ho.....
Posting results of vaccine Covid antibody #’s 
Antibodies after third or fourth covid vaccine
Negative IgG antibodies from 1st shot of Pfizer’s Covid Vaccine
Covid Antibody result opinions sought
