Gutted after immunity test shows I have no antibodies after 3rd vaccination

I know that my Covid immunity saga is probably getting tiresome for my family and friends, but I am absolutely devastated right now. After my 3rd vaccination in December, I really had a glimmer of hope that I would produce some antibodies, as there were some very positive stories in the press about others with leukaemia getting some immunity from the 3rd vaccination, but that’s not happened for me.

I had planned to visit my son in the summer (I live alone and have no contact with anyone face-to-face) - literally the only thing I have been looking forward to. Now I’ve received the results of my latest test and I can’t stop crying.

I’ll rally and stabilise, but I just can’t imagine a time when I can do simple things that others take for granted and, indeed, what I always used to take for granted too. Sorry for venting, but it’s cathartic and helps me to cope by getting it out.

Has anyone else had the same results after a 3rd vaccination? (I have Chronic lymphocytic leukaemia (CLL), by the way).

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Hi @SpaceAngel you must be so devastated right now, and I am surprised that you cannot stop crying.
I think this forum is the one safe place for me to have a good vent, it certainly helps me cope.
I think I have not got an antibody test because I am scared that I have not got any antibodies either. I also have Chronic lymphocytic leukaemia (CLL) and I had not produced any antibodies after my 2d vaccine.
There is a lot of me feeling that I have been isolated for 2 yrs and 2022 is going to be the year that I get some human contact and interaction and dare I say it a normal social life.
You must really miss your son you are a mum
Virtual contact is just not the same.
As you say you will rally and stabilise and who knows what will be happening by the summer and I think things have actually moved so quickly in research in 2 yrs.
But please keep sharing your very natural feelings. I really feel for you, I really miss my son too.
Be ever so kind to yourself xx

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Hello everyone I’m new to this website I have lgl leukaemia a rare one I’m told ! I had an antibody test after my first and second jabs and I too did not produce antibodies .
In conversation with my consultant he says it’s not just about antibodies it’s also T cells which come into play . I have just had my 4th jab and I would love to know if there is some kind of response so I could weigh up the risk factors for leading as close to a normal life as for most of this pandemic I have been shielding . He is adamant he will not check mine or any other patients of his as he believes it just adds to anxiety and stress basically ignorance is bliss !

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Hi @SpaceAngel, I’m so sorry to hear how sad you are feeling. There is a 4th vaccination and also new drugs coming along all the time to reduce the effects of covid should you be unlucky enough to contract it so don’t despair. A little more time and things may look very different and you will be able to visit your son which you must be longing for.

I think when we live with the constant pressures that our diagnosis brings it’s easy to be overwhelmed and very upset when something you are so pinning your hopes on seems out of reach. A good cry is sometimes beneficial and releases some of that pressure but you will as you say rally and stabilise. Sending you lots of virtual hugs and please take care of yourself, you are not alone. :hugs::hugs:x

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Hi @geri147 , a warm welcome to the forum.

I can’t believe that your consultant doesn’t appreciate the anxiety you feel NOT knowing how at risk you are. I don’t know many people on this forum who aren’t very concerned about covid. The fact you have been carefully shielding so far shows that you are not going to throw caution to the wind because of your consultants rather ignorant stance. He’s not the one taking any risks you are!

My consultant did arrange for me to have an antibody test because I was worried about my position after a stem cell transplant. I also had a private test prior to this with Testing For All, it was less than £50.00 online and it allows for you to make an informed decision about what you feel comfortable doing.

I think everyone in our position should have access to an NHS antibody test but sadly that doesn’t appear to be the case. Please look after yourself and keep safe xx

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Hi @SpaceAngel

That’s so disappointing, not having any antibodies…yet, but as @Lyn99 says, there’s the 4th jab to have in 3 months, and it seems it is the later jabs which produce antibodies in people like us - that’s why they brought in the 3rd primary jab, as the first two didn’t seem to trigger a response. So you may develop some next time.

And as @geri147 says, the T cells play a significant part in our body’s response to covid, and so the fact you’re showing no signs of antibodies yet doesn’t mean your body couldn’t fight covid.

And knowing that you have antibodies isn’t actually that reassuring. I did a test via the cancer/covid research, and the result was that I do have antibodies after the 3rd jab - but they don’t tell you if it is just one lonely antibody, or 100 million, or even the quality of the antibodies - so mine could be next to useless, for all I know. I certainly don’t feel any freer or safer for knowing I have an unknown quantity of antibodies that may be of poor quality. I was surprised and happy initially - but that soon wears off when you realise you still can’t change your behaviour.

And it’s worth bearing in mind that research in Italy has shown that our genes play a big part in how we cope with covid. 10% of white British people (slightly more among South Asian Brits) have a gene that means they will more likely react badly to covid. So there’s a lot of genetic pot luck at play here, and actually somebody who hasn’t had a blood cancer could respond more catastrophically to covid than us - it just depends on genes.

But fortunately covid has become less dangerous, and the medicines so much better, so should we be unlucky enough to catch it, the chances of us becoming seriously ill are much, much reduced now.

I really hope this doesn’t prevent you seeing your son under the right conditions. It must be horrendous not seeing him for so long.

I have to admit, I play these points back to myself in my mind when I’m feeling a bit overwhelmed by it all. It IS overwhelming at times. We’ve not only been through the horror of diagnosis, but these past 2 years of severely restricted living. People who are not ill have found it hard to cope, so we’re heroes really for quietly getting on with being imprisoned like we have been. But I’m sure there are better times just around the corner.

Best wishes to you.

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Hi @geri147 a great big welcome and thanks for asking the million dollar question so many of us are asking, no matter what our blood cancer is.
I agree with the responses others have given you, and although I have no medical experience, I have heard that even if I did have some antibodies, nobody seems to know how many I need and what quality they would be. I also believe T cells also come into play and our genes.
This answer is useless to us who have been isolating for 2 yrs and I also cannot get my head around the realistic risk is out there in the scary world.
The height of my social life is a trip to a medical appointment where I peer at everyone as if they are a potential infector !!!
Ignorance is not bliss, my mind goes round like a washing machine with my losses, future uncertainties, anxieties, stresses, fears, thoughts and feelings.
We are all in the same boat, masked, socially distanced and without a paddle between us. Thank goodness for our forum, the Blood Cancer UK website and the Blood Cancer UK support line to talk to.
I look forward to hearing more from you, look after yourself.

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Hi @SpaceAngel I also have Chronic lymphocytic leukaemia (CLL) and have also been shielding basically for two years. It’s so tough, and to do it by yourself must have been extra challenging. We’ve all done so well coming this far, I hope you are proud of yourself - I am!!
I can imagine how disappointed you are about your antibody status - I have sort of assumed all along that I didn’t have any antibodies despite three vaccinations so far (I’m trying and so far failing to get my fourth but that’s another story …). I just felt I didn’t want to deal with the disappointment of not having much immunity.
The one thing that has been really encouraging for me is the news that is coming through about new treatments, for which those of us who are immune compromised are already prioritised. For example the new Pfizer drug Paxlovid was approved by UK regulators only this month and should be available to people like us on the NHS. It has a 90% efficacy in preventing serious illness in vulnerable people. Personally I think it is treatments rather than vaccines that will be the way out of this shielding nightmare for me - I’m hoping that one day (soon?) the prospect of catching Covid loses much of its terror if there are tablets that mean I am unlikely to get seriously ill.
I try to remind myself that scientists are amazing and new treatments and mitigations are coming down the line all the time. Who knows what the picture will be by the summer when you hope to visit your son.
I really wish you all the best and hope you can manage to find some hope. This has been such a tough time for all of us, do be kind to yourself.

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By the way @geri147 and others - I saw the following post on the Blood Cancer UK Facebook page earlier this month about free antibody tests available as part of the National Covid Cancer Antibody Survey - I have now requested one from the government website and been sent one. (I haven’t actually taken it yet as I wasn’t sure if I was getting my fourth vaccine this week or not…) But it’s certainly worth a try if you really want to find out your antibody status - with all the caveats that others have listed above.

Looking to get access to an antibody test? The National Covid Cancer Antibody Survey is still seeking participants. The aim of the study is to understand what protection from Covid the vaccines provide people with cancer and who remains at risk 🩸

You may be eligible if 👇

-You’re over 18 & live in England

-You’ve been diagnosed with cancer in the last year, or are currently taking cancer treatment

For more information and to sign up, you can visit the link below 🦠

https://bit.ly/3zI6XLb

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I have Chronic lymphocytic leukaemia (CLL) currently in remission and have 3 monthly consultations and have 3 vaccinations.
My consultant never mentions antibodies so how did you find out that you don’t have any?

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Hi Catcher, I have had 2 tests, one after my second vaccination and another after my third (needs to be 4 weeks after jab). I paid £50 for each, one from Testing For All and one from York Test.

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Hi Everyone The Nationd Covid Cancer Antibody Survey is open to all in UK ,link above from @Est30,
Bannanacake

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Hello Space Angel, I too have Chronic lymphocytic leukaemia (CLL), diagnosed 2018. After two jabs I had hoped for antibodies but no. Had my third in October and still none. I just now had my 4th. All four have been Pfizer. I do have my husband and two good friends supporting me but we haven’t seen our family for almost two years.
This year must get better so please try to stay strong. Here on this forum we try to help and support each other so you are amongst friends. Have you joined CLLSA, if not I would recommend you do so. Leukaemia Care are also excellent. Please take care Alice xx

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Was at RM for anti body test as part of Capture study yesterday - only 15 min compared to 75 min last time. Much safer. Will not know my results but will help the medics know the spread of responses to the vaccines. Believe those with little response to 3 vaccines can still get a response to the 3th.

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Thanks @myrdin for being part of the Capture study, how else will we have research, trials and future vaccines and new treatments. Thank you so much.

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I’m part of the RUDY study at Oxford and send them regular samples so they can assess the response of people with my cancer to the jabs. Without being necessarily over-vehement they suggested that my antibody response is “probably” not too bad and the same with T Cells. Not sure what to make of it but I take the positives from it and hope for the best.

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Hi @Space Angel, like you, I have Chronic lymphocytic leukaemia (CLL) and have had 3 Pfizer vaccines. I paid to have an antibody test after my second and then my third. My results were (both times) a very disappointing 0.4%.
I have since joined a Virus Study which is being run by UCL and after sending in another blood test; I was informed that my antibodies were ‘non-detectable. Like you, I wonder if I will ever be back to normal. I did volunteering in two different places, both of which were customer facing - neither of which I’ve done now for almost two years. I am sorry that you are in this same position and hope that someone, somewhere will find a solution to our result and that once again, we will feel safe going out. Xxx

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Oh @CLL6 you must feel so disappointed with your antibody test results.
2 years is a long time in isolation and you must really miss your customer face volunteering roles, you obviously enjoy social interaction.
I put my hopes into research, but it obviously take time.
Look after yourself

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Hi geri47, I was told the same, I am part of the “Zoe” research and take antibody tests every 2 months. You are right, it is T cells and B cells that are the part of the immune systems memory. I was told that antibodies can wane but that T cell response is more important, although I don’t know if they can test for them. Take care of yourself and I hope you can
feel less anxious as time goes by.

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I paid for a test with YorkTests and previously with Testing for All.

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