No Antibodies after Vaccine: Just got my results... - CLL Support

CLL Support

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No Antibodies after Vaccine

MovingForward4423 profile image

Just got my results back for Covid Antibodies after Vaccination. It was Negative with a reported level of less than 0.4(U/mL). I took two doses of Pfizer, 8 weeks apart. I've been on Ibrutinib for CLL for 7 months now, and the first vaccine dose was 3 months after starting treatment. Really peed off.... as there seems to be no plan on how the NHS will approach this problem with blood cancers.

27 Replies

This is what happens to us on btk inhibitors (ibrutinib). I take ibrutinib and my results were the same as yours.

We might have some protection but nobody know the answer yet. 😕

cllady01 profile image
cllady01Volunteer

I understand you consternation, but also have had some indication that there are studies ongoing to give some indication of just what the antibody tests you and others have taken means for us.

There is some evidence as studies are being done that those with CLL may have some benefit in immunity from T-cells. And being on Ibrutinib is said to strengthen the T-cells. So, while no one has a definite answer yet, we get to practice and strengthen our patience in regard to just how much immunity we might have.

After all, this virus and the variants that are developing are still being dealt with all over the world and that fact gives me the recognition that I am only one in billions or is it trillions of people, some who have yet to even have vaccines available to be able to queue up for.

I hope you will continue to stay safe, as aggravating as it is to not get back to what has been normal.

809123 profile image
809123 in reply to cllady01

The problem for me is getting back to work. I’m not in a position to retire,. For me, I may just need to take the risk.

bennevisplace profile image
bennevisplace in reply to 809123

If you can keep your mask, while all around you are losing theirs.... and make it a FFP2 / N95, that will reduce your risk at work.

My understanding is that masks have no effect on preventing aerosol borne virus' as the size of the virus is too small to be captured. Anyone getting antibody tests as part of ongoing follow ups with the NHS?

There has been a lot of research on face masks. A mesh designed to filter out particles bigger than 0.3 microns can stop most airborne virions of 0.1 microns diameter because the latter form larger aggregations typically in the 1-10 micron range. See the Ballistics section in nature.com/articles/d41586-...

Me, I wear a close fitting FFP2 "respirator" whenever I'm indoors away from home.

809123 profile image
809123 in reply to Redlion

I participated in Birmingham Uni study. Haven’t seen any data yet. I am seeing Professor Hillmen at the end of June so I will be asking him about options.

I hope it’s OK to mention another charity here; if not, please delete my post.Blood Cancer UK announced on their FB page last night that they are going to call on the government to postpone the final lifting of Covid restrictions, and to make the point that they should give more consideration to those with blood cancer in their decision-making, given the poor efficacy of the vaccines for us.

I don’t agree the entire country should be delayed for people with blood cancers. What I would like to see is fast studies to ascertain how they get us protected. Maybe stopping treatment for 4 weeks and taking a single jab J&J. We need trials, and now.

I agree we need trials, and now, but the 21st is 10 days away. Is it practical to expect any kind of study - fast or otherwise - to be done in that time? In my view, the whole country should be delayed… not just because of people with blood cancer, but because of the Delta variant and the numbers going up again.

bennevisplace profile image
bennevisplace in reply to 809123

A delay to full reopening is strongly suspected telegraph.co.uk/politics/20...

Some results from the PROVENT trial must be imminent. This is Astrazeneca's monoclonal antibody cocktail AZD7442 administered as a protective injection. CLLers watch that space!

Very good news! 😄 Thank you.

bennevisplace -

I'm really hoping for excellent results on the PROVENT AXD7442 trial, and hope we'll all qualify to get it.

clinicaltrials.gov/ct2/show...

=seymour=

I'm in the UK trial of AZD7442, but on placebo 😕 so fingers crossed 1. results are good enough for MHRA approval, 2. UK government funds the drug for NHS use, and 3. the eligibility criteria are wide enough. A few weeks ago Forbes put out a story casting doubt on government commitment, which I hope was just a bit of stock market jiggery-pokery.

Lots of good info on the website Blood Cancer UK.

I also just got a Negative antibody result, but the test result said Negative is the normal. So is negative value good or bad?

809123 profile image
809123 in reply to Phyllis731

Bad

SeymourB profile image
SeymourB in reply to Phyllis731

Phyllis731 -

They probably shouldn't use terms like "normal" within 1km of a blood cancer patient. It just leads to long, confusing doubletalk. It's like Abbott and Costello "Who's on First." Is negative normal? Is positive a negative thing?

It depends on which test. On the nucleocapsid test, negative is normal - it would mean you probably have not been infected with SARS-CoV-2.

On the spike antibody, for those of us wanting a hint of hope after the vaccine, ignore the word normal, and look at the numbers. A positive result on spike antibody is a good thing.

=seymour=

I'm on Acalabrutinib and got a negative result with 'no antibodies detected ' on report. Very depressing but at least I know I'm shielding indefinitely and can plan for that. If we were to come off treatment for a few weeks and get re-vaccinated would our BTKs kill off any new antibodies when we went back on?

Worth even asking our consultants?

809123 profile image
809123 in reply to Eucalyptus22

It doesn’t work like that. The other worrying thing is other vaccines. How the hell are we all meant to get a response to those. Travel vaccines come to mind.

Me too, but I am just watching and worrying. Not treatment yet. I got the two Pfizer shots. Two months later I had the Labcorp Semi qualitative test. Two tests a week apart. Result no response. No antibodies. I see doctors at Duke Cancer Institute. Their response was “ there are non CDC guidelines”. Keep wearing your mask. Not good!

Hi MovingForward4423

Yes, I had exactly the same result as you after taking Ibrutinib & Acalabrutinib more than 3 years.

Mentally preparing myself to embrace masks for the rest of my life; convincing myself that it’s better for my complexion as the mask plus sunblock give better protection, also saves some $$ from not using any lipstick....

809123 profile image
809123 in reply to Seok

It’s stands to reason that we need to stop treatment for a number of weeks following a vaccine. We stop treatment prior to minor and major surgery so it’s safe. There is also trials now for stopping and starting BTK when MRD Negative.

After stopping Ibrutinib and Venetoclax I waited a few months ..then took vaccineand antibodies came out with > "20"

Catnap7

Diagnosed in 2010. Started ibrutinib in April 2017 to present. Had both Pfizer vaccinations in March 2021. Had an antibody test June 7th 2021 with a positive result of 231. Have low IGG of 475 so was very surprised and happy to hear so there is a possibility that the vaccines are effective for us CLLers. Future data could reveal a true test for efficacy or a booster to increase the efficacy. That is my hope for all !

It’s seem very random. Some get a response others do not. Well at least a B cell antibody response.

I am on Calquence and had Covid and both Pfizer jabs. No antibodies for disease or vaccine ....004! I have very low IGG (156) so wonder if that impacts our abilities to generate antibodies?

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