Covid-19 jab - book now or wait : In the UK, the... - CLL Support

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Covid-19 jab - book now or wait

Beatirce profile image
31 Replies

In the UK, the Government is rolling out its autumn Covid-19 vaccination programme and encouraging those eligible to book their appointment as soon as possible. However, there is some concern that the current vaccines being used may not offer protection against new Covid variants such as Pirola, and that newer vaccines for this may be available next month or in November. So I'm wondering if it could make sense to wait for the newer vaccines or to get jab now. Any advice appreciated.

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Beatirce profile image
Beatirce
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31 Replies
mrsjsmith profile image
mrsjsmith

I decided to book mine when it was opened yesterday. I can understand your logic but there could another variant that emerges in November so it’s just a guessing game and I am continuing to stay vigilant. From what I have read the current variant seems to be mainly affecting the over 85’s.

Colette

Beatirce profile image
Beatirce in reply to mrsjsmith

Thank you - this is very helpful and reassuring.

Pekingese profile image
Pekingese

We had our flu and Pfizer vaccine yesterday.

lankisterguy profile image
lankisterguyVolunteer

Hi Beatirce,

-

We had a discussion, mostly focused on USA here:

healthunlocked.com/cllsuppo...

But I believe these excerpts would apply to UK as soon as the new 2023 Vaccines are available in your locale:

We have frustratingly scarce scientific guidance on timing. What we do have tells us this:

Minimum wait: 2-3 months. A Covid-19 vaccine doesn’t add much benefit within 2-3 months of infection. We don’t have to wait 2-3 months after infection—we won’t “exhaust” or “overwhelm” our immune system. But waiting will ensure we broaden B cells (our second line of defense; our antibody factory that stores some long-term-memory). With an updated vaccine formula, we want our factory updated.

--

Maximum wait 8-12 months: The longer we wait, the more we get out of the vaccine. One study found that waiting 8 months increased neutralizing antibodies 11 times more than waiting 3 months after infection. Another study found a 12-month interval improved vaccine effectiveness against hospitalization.

-

BUT waiting is a gamble. Even if a vaccine sooner is not as good as it could be, it’s better than waiting too long and catching Covid with limited protection, especially for high-risk people.

SO, this is what I’m suggesting to my family:

Over 65 or at risk for severe disease: Get vaccine 4 months after infection/previous vaccine. Don’t wait more than 6 months. (Go here to understand why older adults need more urgent protection.)

Under 65 and not high risk: Wait at least 6 months. Ideally, get vaccinated once a winter wave starts taking off. (Getting it by Halloween is a good bet.) This is what I will be doing with my family. But remember, we have very little/no protection against infection until we do. So, other layers of protection are especially needed.

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Do I wait for Novavax?

There is some evidence that mixing Novavax with mRNA is better and some evidence that staying with mRNA is better. It’s a bit hard to know which one is “right.”

High-risk people: The data pool is so narrow I’m uncomfortable suggesting that high-risk people wait for Novavax; we don’t know if it’s immunologically better. So don’t wait for this option if it’s been >6 months since your last vaccine and/or infection.

-

Len

Beatirce profile image
Beatirce

Thank you for all your replies - some ideas and different perspectives to think about

Imposs profile image
Imposs

Dear All,

For effective COVID protection, us CLL'ers require 3 Vaccine Doses!

This is show in a large study, published April 18, 2023, and involving numerous researchers in Australia, Japan, and USA. It's called "Robust SARS-CoV-2 T cell responses with common TCRab motifs toward COVID-19 vaccines in patients with hematological malignancy impacting B cells" The main paper is 23 pages long, and the supplementary material is another 46 pages.

The paper's Introduction begins with: "Patients with hematological malignancies such as chronic lymphocytic leukemia (CLL) and..." But for us, the real news is: "In the Summary they say: "Immunocompromised hematology patients are vulnerable to severe COVID-19 and respond poorly to vaccination. Relative deficits in immunity are, however, unclear, especially after 3 vaccine doses. We evaluated immune responses in hematology patients across three COVID-19 vaccination doses. Seropositivity was low after a first dose of BNT162b2 and ChAdOx1 (26%), increased to 59%–75% after a second dose, and increased to 85% after a third dose."

It seems important we all bring this to the attention of those providing our medical care.

Eucalyptus22 profile image
Eucalyptus22

I have decided to wait for the updated vaccine. Being on Acalabrutinib I don't produce antibodies anyway. In the meantime, I'm hoping I may have some useful antibodies from the Supernova trial to keep me safe.

Beatirce profile image
Beatirce in reply to Eucalyptus22

@Eucalyptus22 Thank you. This is an interesting perspective If you decide to wait, is there a risk that you could miss an opportunity to get a jab? How will you know when its the right time?

Eucalyptus22 profile image
Eucalyptus22 in reply to Beatirce

When I go for my flu vaccine on Friday I will be having this conversation. Being on the Supernova trial I have to be covid vaccinated by 12th October anyway, so decision may be out of my hands. I am definitely prioritising Supernova over a covid vaccine that MAY not be effective against the new variant.

Beatirce profile image
Beatirce in reply to Eucalyptus22

Thank you for coming back so quickly. This is helpful.

stevesmith1964 profile image
stevesmith1964 in reply to Eucalyptus22

I am on alcalibrutinib and have produced IgG neutralising antibodies after my 4th vaccine.

Eucalyptus22 profile image
Eucalyptus22 in reply to stevesmith1964

That's good to know. How many did you get and what testing platform did you use? I used NHS Monitor My Health and the first 5 vaccines produced 0.5u/ml. It was only when I came off Acalabrutinib that I got a response to the 6th. Did you at one point say you went for monthly IgG infusions? - maybe that's why you got antibodies.

stevesmith1964 profile image
stevesmith1964 in reply to Eucalyptus22

I had access with a IgG neutralising antibody LF's, so tested my self after every vaccination and covid infection (had 3). But I only produced antibodies after 4th vaccination. IVIG wouldn't produce or stimulate covid antibodies. There could be one other factor, when I had my second BMB 3 months after final Obinituzumab cycles and while on Ibrutinib, it showed that my bone marrow was rammed with T cells which the histopathology consultant had never seen. ? Reaction to Ibrutinib...? Why , apart from covid I have had no infections since my stage 4 diagnosis.

Eucalyptus22 profile image
Eucalyptus22 in reply to stevesmith1964

Fascinated that your bone marrow was rammed with T cells, I hope that is the same for many of us. I was on the IMPROVE trial which was to see if coming off Acalabrutinib for 3 weeks would produce an antibody response. Off one week to give us time to increase our Ig levels, get vaccinated, stay off another two weeks to build up antibodies. The rational behind this trial was that you can't produce covid antibodies if if don't have sufficient Ig levels. As we know BTKis seriously deplete these levels. So if you have good levels of Ig through the IVIG infusions, wouldn't you produce antibodies?

stevesmith1964 profile image
stevesmith1964 in reply to Eucalyptus22

My IgG infusions were post vaccination and my consultant does them pre winter anyway to top me even if my IgG is just below normal. He does a lot of preemptive stuff , like I have GCSF at home just in case my monthly bloods show low neuts.

Beatirce profile image
Beatirce in reply to Eucalyptus22

My OH has CLL (W&W for 12 years, may need treatment soon) so I try to do what I can support him - so I'm trying to evaluate the best options for both of us.

Shefflass profile image
Shefflass in reply to Eucalyptus22

I've decided to get vaccinated now (on Venetoclax until next June) but am interested in getting tested for my response to it. Have not measured it before. How long do you wait after the jab to do the test? I'm also in the UK.

Eucalyptus22 profile image
Eucalyptus22 in reply to Shefflass

I waited 3 weeks.

jonathan7176 profile image
jonathan7176 in reply to Eucalyptus22

Have you taken an antibody test on acalabrutinib? I took one after vaccine #5 and my antibody score was at the high end.

Beatirce profile image
Beatirce in reply to jonathan7176

Thank you. I'm looking for advice for my OH who has CLL....

Eucalyptus22 profile image
Eucalyptus22 in reply to jonathan7176

That's incredible Jonathan. It goes counter to all the research on covid response when on a BTKi. Hence the funding for the IMPROVE trial. I'm really glad you got a high response. My consultant would like to meet you !!!

Justasheet1 profile image
Justasheet1 in reply to Eucalyptus22

Euc,

Johnathon is indeed fortunate. I have been on ibrutinib 4+ years and have been regularly checked for Covid antibodies after vaccination.

It wasn’t until after I finally caught Covid, recovered and was tested a few months later that I ever registered measurable antibodies on a test.

This was just my experience.

Jeff

jonathan7176 profile image
jonathan7176 in reply to Eucalyptus22

Always happy to be a guinea-pig (less happy if informed that the test wasn't accurate)!

Maybe I should take another one a month or so after vaccine #7 (2nd October). But I also had a positive antibody test a few months before I was diagnosed with CLL, about a month after vaccine #3.

Westie11- profile image
Westie11- in reply to jonathan7176

How do you get the antibody test please? Also on Acalabrutinib.

Eucalyptus22 profile image
Eucalyptus22 in reply to Westie11-

monitormyhealth.org.uk/ This is the test platform that many of us on here use.

Westie11- profile image
Westie11- in reply to Eucalyptus22

Thank you

Beatirce profile image
Beatirce

Thank you for all your replies and advice. I really appreciate your help.

esn1967 profile image
esn1967

I asked my CLL specialist this question at the beginning of August and she recommended getting my 6th jab right away and not waiting. Her reasoning was because covid cases were starting to rise and I work at a college. She said that in 2 months I can get the newer shot.

Beatirce profile image
Beatirce in reply to esn1967

Yes, I'm starting to think that we'll get our jabs sooner rather than wait.

otonal profile image
otonal

Saw CLL specialist yesterday UK, his advice Covid & Flu now, then Shingles and then Pneumonia (already had these). Forgot to ask about RSV!

Beatirce profile image
Beatirce in reply to otonal

@Otonal This is helpful as we're in the UK. Thank you.

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