Anti bodies: Ive been on Imbruvika for 3 years... - CLL Support

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Anti bodies

retired46 profile image
28 Replies

Ive been on Imbruvika for 3 years - I have had 3 vaccinations the last one October - and have just had my anti bodies checked by my consultant with my bloods prior to my four monthly telephone consultation.

The result astounded me as he told me I am showing a result of 2080 Anti bodies detected - based on a scale by all accounts of a table used of 0-2500 .

I hope this gives others hope that the vaccinations do actually give a bonus to us.

I am amazed by this.

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retired46 profile image
retired46
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28 Replies
Davidcara profile image
Davidcara

Wow, amazing!

Eucalyptus22 profile image
Eucalyptus22

That's great news. Was this the first time you had an antibody test? Did you have any antibodies from the previous doses?

retired46 profile image
retired46 in reply to Eucalyptus22

Hi there, this was the first antibody check I have had , and being offered a fourth vaccination l wanted to find out the effect the other three vaccinations had on my system as I was poorly with the first two and really poorly with the booster for three weeks after with a dreadful cough. I have attached the results but apologies if it doesnt show correctly

Kind regards

Fine
gardening-girl profile image
gardening-girl in reply to retired46

Retired46, Wonderful results! Congratulations! I have the same question as country76 . What is the name of the company who supplied the reagents for the Spike antibody test that you reported? Was it a Diasorin LIAISON TrimericS IgG test?

retired46 profile image
retired46 in reply to gardening-girl

Hi there sorry I am not aware of the name of the test as I just had my arm out yielding blood for my routine blood check 🤣 so it went to the hospital lab with the other samples I gave 🙂

Justasheet1 profile image
Justasheet1

Retired46,

That truly is amazing. Almost unheard of for ibrutinib treated patients.

retired46 profile image
retired46 in reply to Justasheet1

Just goes to show 🙂

AnneHill profile image
AnneHill

Thats great news. I sent a test away to the nhs and I havent heard from them. I will try to sort it tomorrow. It must be a lovely feeling, Anne uk

retired46 profile image
retired46 in reply to AnneHill

Amazed I think is the word 🤣 just shows hiw theres no rules at all with it 😷

Jacksc06 profile image
Jacksc06

Great news.

country76 profile image
country76

Was that from an IGG + IGM test or LabCorp?

retired46 profile image
retired46 in reply to country76

Hi there, Im afraid I can't tell you that as I have no idea, I had it done through my consultant on Sunday on a routine blood check along with other samples taken for my CLL check so it will have gone through the hospital lab. Kind regards

Pin57 profile image
Pin57

Jackpot!!! 🎰

Congrats retired46, way to go!

retired46 profile image
retired46 in reply to Pin57

Onwards and upwards 🤞

1ofakind profile image
1ofakind

Super!So happy for you!!

teakbank12 profile image
teakbank12

I was asked if I wanted an antibody test when I ordered a PCR test when trying to chase the priority PCR test up.I did the test and wasn't advised of any antibody numbers at all in the text I received??

It stated "thank you for doing a covid antibody test. No antibodies were found in your blood sample. This means it's unlikely you've had covid in the last six months. However if you've tested for covid in the last two weeks it's unlikely that antibodies from your recent infection would show up in this test at this stage. If you've had your final dose of the vaccine or gave tested positive you can call 119 to discuss this result"

That means yet again after several previous tests offered to me I am not making any antibodies????

The previous NHS test was 22.10.21 with exactly the same comments after my third primary vaccine????

Dave

retired46 profile image
retired46 in reply to teakbank12

How odd, must admit I only considered going through my consultant to be fair when it was time for my routine four monthly blood test.I was surprised - but pleased though.He said it was "magnificent " so feel as if I should get myself a flying machine 🤣

That's great news. I didn't have any after the third, but I had quite a reaction on the firth jab. I hope I have some antibodies now, but my consultant told me not to worry about testing now.

retired46 profile image
retired46 in reply to MovingForward4423

I was curious about mine and as I was having bloods taken thought I would go for it.

teakbank12 profile image
teakbank12

I asked my haematologist and reply was they don't do them. There's no point in doing them. Recently I had another haematologist appointment and he said bloods ok so there's nothing to talk about as I tried to ask things as me and the wife were concerned about various problems I'm having.

I get same from Gastroenterologist consultant he doesn't listen when I ask about problems I'm having and it had Crohn's snce the 80's so have a lot of knowledge and experience of it!

These are all telephone consultation appointments.

Dave

retired46 profile image
retired46 in reply to teakbank12

Hi there, thats not helpful is it- I have always wanted a copy of all blood results so I can see for myself and keep track of how I am and have always had them. I had no issue getting an antibody test and my consultant didnt give me any reply like you experienced - that is so frustrating for you and I would not be happy with that. If my consultant hasnt been available his team have always been happy to answer any questions even in between my hospital appointments I can email them . I am at Southampton General UK.

I feel for you that you cannot get an in depth conversation which is important - as it helps us to understand our particular issue doesnt it.

If you are in the UK Dont give up and try asking for a printed copy of your bloods to be emailed to you, I am registered on My Medical Record where all letters and blood results are available, so that might be an idea to go on.

Persevere and fingers crossed you get answers.

Kind regards

teakbank12 profile image
teakbank12 in reply to retired46

I chased secretary up and they just did a quick few lines of wbc is all ok and haematologist will speak again in six months by telephone consultation.Gastro four months.

I used to have both a fantastic gastro and haemo although under different nhs trusts they were close friends and conversed with each other over my treatment.

I do view system online for GP notes and hit n miss over bloods etc as to who ordered them.

Even the GP'S at the surgery say system is hit n miss.

Dave

retired46 profile image
retired46 in reply to teakbank12

Sorry about that its so unsettling isnt it for something that should be straight forward information - sometimes I think when its their job they forget how important it is to give us even the smallest detail, which we like to have, I wish you well and persevere stay safeRegards🙂

retired46 profile image
retired46 in reply to teakbank12

Meant to say my husband suffered colitis and we always made sure everything was explained and copies of paperwork given as its so important for us to understand for ourselves, he is also registered on My Medical Record where all notes etc are available.

Retiredman profile image
Retiredman

Great news! Which vaccine did you get? Did you halt Imbruvica for a few days before and after the shot?

retired46 profile image
retired46 in reply to Retiredman

Hi there, I had 2 Astra Zeneka and 1 Pfizer and didnt stop taking Imbruvika - Im on 280mg daily.I was poorly for a week with 1st and 2nd and poorly with the third for around three weeks dreadful cough, blocked sinuses and ears and flu like symptoms but didnt stop Imbruvika - ironic really in the 5 years Ive been diagnosed I only felt poorly after the covid vaccinations 🙈 luckily it didnt affect the CLL as I had a routine bloods appointment 4 weeks after the third one and the results were perfect - how does that work - Ive learnt to go with the flow 🙂

Regards

Cindi73 profile image
Cindi73

You're very fortunate. I'm happy for you. I've been on Ibrutnib 4yrs. No antibodies after 3 jabs.

retired46 profile image
retired46

Hi there, I am sorry to hear that, stay safe🙂

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