So I understand theres doubt of the efficacy of the covid vaccines in the case of immuno-compromised folks such as us. I understand it could be that our protection really kicks in once the masses, the herd, has been vaccinated.
I have a thought, and appreciate any views you might have.
I will definitely take the vaccine, as soon as I'm offered. I'm then of a mind to have an antibody test some weeks after (if its going to be weeks between the 2 then probably after the initial shot) obviously I'd hope to show positive for antibodies but at least if negative I know I still need to be very careful. I would assume that the vaccine may not then protect me at all. If I have antibodies I feel i could relax more, specifically in a work environment. I'm not certain if this strategy would even work, thoughts please again.
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Belfastbees
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1) You may find it very difficult to get your antibody response measured, due to the unprecedented demands on the medical system
2) Lack of an antibody response doesn't mean that you also don't have a T cell response to the vaccine. I've just finished listening to a webinar on T Cells: A New Hope for Lasting Protection against SARS-CoV-2 and one of the speakers mentioned a lack of correlation between antibody and T cell response in people without CLL. The immune system response in otherwise healthy people to SARS-CoV-2 is heterogeneous.
Irrespective of the above, you would be wise to continue taking precautions against infection until the community incidence is low.
Thanks for the input. I should have said I would take the test privately, superdrug for instance do a home test which is only £69. I do realise the immune system is complex and a test perhaps not conclusive but my hope would be that I would have antibodies. I understand the t cell memory function is much harder (and this expensive) to test. Of course I'm not about to take chances given our local authorities (in Northern Ireland) are estimating all adults here, 18+, who want the vaccine will have it by the end of the summer.
Belfastbees, your community profile suggests you should get a better antibody response from vaccine than many CLL patients, and a positive antibody test result would confirm it.
But what would a negative result mean? How useful would a qualitative test be for CLL patients who are older/ further progressed/ treated, with consequently weaker immune systems? I assume they would need their weaker immune response to vaccine quantified, by titre of antibodies and preferably also T cells. As AussieNeil indicated, it's hard for individuals to get that kind of work done. IMO it could and should be done in clinical studies of immunocompromised people. The importance and urgency of such a project seems to have eluded the decision makers so far.
Yes, I understand getting a test does raise the question of what I do if its negative. I'm undecided and have considered that result, and the fact that either result could be false in any case. The best outcome for everyone, not just those with conditions deemed problematic, would be the mass vaccination of the general public of course. UK gov does seem to be proceeding well thus far.
In your shoes I would do the antibody test 4 weeks after the second vaccination. Making sure the sensitivity of that test has been independently verified as up to scratch. But the result either way would not make me relax precautions, at least not consciously.
Neil, I also listened to the webinar and thought that it was especially well run. Of course I was thinking of you as I was watching, planning to send you a link when it was available. 🙂 As soon as the webinar ended I downloaded the Cell paper to which the researchers referred. In general I thought that the webinar presented a hopeful picture.
I agree. The recorded presentation won't be available for a few days. I wonder if they have any idea how those with CLL would go with T cell immunity, particularly during/after treatment.
I can do that, but the webinar didn't cover the immune response of immune compromised folk. That said, there was mention of one of the study participants who contracted a COVID-19 infection and who didn't develop an antibody response yet still managed to develop an adequate T cell response.
I did pose a question during the webinar, but it wasn't addressed. I asked for their opinion about the strategy of widespread postponing the second vaccine dose in favor of more people getting vaccinated.
Hi! Could you send it to me, Please? Im anaesthetist and im shielding since March. I’m really fed up with this Covid and some optimistic professional reading would be very helpful. Regards. Temida
I had the J&J vaccine 3 weeks ago, also no antibodies. I'm using a very accurate rapid blood test were 10 others I know tested positive for antibodies using the same test. They however got Pfizer and Moderna, I am the only J&J. Someone else I know will be testing antibodies tomorrow who had J&J, if he is positive using the same test then I will be convinced I had vaccine failure. They say over 90% had immunity by 29 days so by this point many people had immunity. My doc is trying to reassure me not to test antibodies, its not the guidance, etc. but not so easy being the odd man out here and I am very high risk. Has anyone else here had the J&J vaccine?
HiMake sure you get IgG Neutralising Antibody test not a total Ig or Nucleocapsid based test.
You are correct we are only truly protected when everyone is vaccinated, so a very strong case for mandatory vaccination of everyone. Those who refuse must then shield until they are vaccinated.
I'm sorry I don't agree that vaccines should be mandatory. I don't want to live in a country that would take such a stance. I believe most will take it when offered. An example of that to me, as a 55yo male, it's usually people my age you see in dispute about vaccines and mask wearing. I have ventured into shops off peak and find younger adults most compliant. It's up to governments, medical and scientific bodies to campaign for the uptake. Of course the Internet is a big negative with the conspiracy theorists however anyone capable of critical thinking can see what nonsense they are and we should all confront that, or leave them to it.
Hi,I know its a strong view, but I want to be around for a long time... I am 56 itj stage 4 with 2 children under 3. So if everyone is vaccinated then me and my family are protected from a easily preventable disease. I actually think mandatory vaccination won't happen but there will me massive incentives..... Immunity passports to travel ( already planned are many countries as an entry requirement), life , travel and health insurance premiums. Also state rules, such used in America... no measles vaccine for your child then no state funded education.... or no vaccine no access to state financial support in some nations. So probably there will be enough incentive options without the need to make it mandatory.
I agree it should not be mandatory but am shocked by several intelligent people I know who are adamant about not having it. As an aside, people who live in areas where the water supply is fluoridated are being compulsory medicated unless of course they drink bottled water!
Go look at India right now perfect case for vaccination. Vaccines are not new and they are a big reason why people can usually live long lives. We have been being forced to get vaccines since childhood. Population health is a community responsibility. If we didn’t want to be forced to do anything we would have to live on our own island. Forced to wear seat belts, not smoke around babies indoors and a lot of other things for the greater good.
Given you’ve not had treatment I’d assume you’ll probably be more likely to respond well to vaccination. For everyone with CLL regardless of what part of their journey the vaccine could do more good than harm for sure! Best wishes
Yes I hope so. I recognise there's an ongoing consideration I need to have regarding infections from any source. Not so long diagnosed and at that time just told to avoid sick people and crowds, with no warning about infections. Hoping that's because my personal risk whole heightened is not so concerning but unknown so care will be taken. Fortunately my SO is NHS just vaccinated with her 2nd pfeizer 7 days ago so I have a certain degree of protection there whilst also having someone to fetch me beer and wine if I run out. 🤭
I plan on doing this very thing as well. Once I get vaccinated, I will use a private lab to check for antibody response. Now, understand that these tests are not the most accurate. The false negative rate is running around 20%. You also have to give it enough time. If a healthy immune system takes about 2 weeks, I would wait at least 3 before checking. Maybe even 4.
As AussieNeil posted, the T cell research and preliminary results is HUGE. This can't be overstated..
Do remember that even with a "perfect" immune system, you are not fully protected by most vaccines for 2 weeks or so. This vaccine requires two doses for full protection in the best of cases, as well as a 2 week wait period to develop the optimal defense. I'm not at all sure testing between the doses or until sometime after the second dose will be an indication of your body's response or just an entirely expected reaction to the vaccine. As with all vaccines, EACH person is not 100% protected and ALL people do not have to receive the vaccine; there is a point where good enough is good enough. Most people, mostly protected, is what is hoped for.
Yes, of course we should be careful regardless of theories. Not looking to be a test case in any future studies. Highest death rate in the UK since the start of the pandemic. Sad to see we have not learned from history, that the subsequent waves of a pandemic are more devastating. Its an awful shame to have fallen so close to an exit strategy and many more still to suffer.
Dear Belfastbees:I was in a clinical study with Shingrix and the Hepatitis vaccine. After three months the researcher was thrilled with the number of antibodies I had. Six months after the vaccine I still had antibodies, but not enough. They were hoping the protection would last a year. It was more like five months.
I got off the phone with a doctor from NIH just a few minutes ago. She said that as a cancer survivor I may have the same result from a Covid-19 vaccine. They are recommending that I take the vaccine because anything is better than nothing. I should still wear a mask, wash my hands, social distance, and avoid crowds. Eventually when others get vaccinated there will be herd immunity.
I truly think the Antibodies screen should be done after the second dose of the Vaccine. That's when the optimal results or lack of will provide the truth.
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