Covid & vaccine efficacy for CLL patients - CLL Support

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Covid & vaccine efficacy for CLL patients

Ptcad profile image
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Apologies if this has already been flagged up but people may find this report from the US CLL Society useful

cllsociety.org/2021/07/ash-...

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Ptcad
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81ue profile image
81ue

Re "None of the patients treated with venetoclax + an anti-CD20 monoclonal antibody within the past year formed antibodies"

I'm in a V plus anti-CD20 category right now.

I'd like to know what the venetoclax alone (Bcl-2. meds) response was, if that was or is being studied next, because my one year is up next year when the boosters are likely available.

Ptcad profile image
Ptcad in reply to 81ue

If you open the link to the original published paper you can then contact the report author Lindsey Roeker. She may be able to help

Timree profile image
Timree

I havent posted for some time. Went on Ibrutinib Feb. 2021 after 5 years w and w. White cells 300k or thereabouts and all the other figures at that time were deep red. Not a good picture. Thankfully medication is covered by insurance. After starting Imbruvica 420 mg treatment , i had the usual adjustment problems mentally and physically. I take these meds first thing in the morning bn 8 and 9 and before food . I take the Valcyclovir morning and night. On Monday Wednesday and Friday i take the antibiotic Septrin morning and night.Main problems were chemo mouth, horrible thing ( v. bad), poor or little sleep ,severe anxiety, cramps in legs, soft bowel , bruising at the slightest touch on anything etc. This lasted until May and suddenly improved to the point that in August my white count is 21k from 300k and every other formerly red number is now borderline or in range. Hurray for Ibrutinib, Sertraline plus Antiviral Valcyclovir, plus anti gout plus prophylactic antibiotic Septrin. Feel well. Still not sleeping well but otherwise very pleased. Thank you God ,my brilliant Haematologist and the meds. Anyway i decided to get an Antibody test as had both Physer jabs in April /May with 28 day interval. I had no reaction whatever to indicate any response to the vaccine. My wife who has thyroid issues did have a reaction , temp, feeling weak, lethargy in extreme, headaches ,etc. This delta variant is becoming a real problem where i live in Ireland especially in 16 to 25 age group. We have a high vax rate and this is limiting severe cases needing hospitalisation . Its little comfort to me and other immunocompromised people, my wife included, that there is a high vax uptake as i suspect that if we get the virus the outcome could be as they say , problematic. Am nearing 65 years normally fit and free from other medical issues thank God. Did the Antibody test on 3 August and results just in now August 9. Its a serum test assayed by Bionmiss. Measures Igg. Less than 9 au is negative for antibodies.

From 9 to 11 is borderline

over 11 is positive.

My results were 9.7 ie borderline meaning i have developed some antibodies. Half borderline, whatever that means ,is better than nothing and am grateful to have any antibodies, as a lot of fellow cllrs have returned negative results which is disheartening and worrying. I intend to isolate as much as possible, distance , wash etc in an effort to evade this virus. As a matter of information my sister 2 weeks ago, collected her daughter from a 3 hour bus journey and in the course of the 15 min car drive home got covid from her daughter. She , my sister, is immuno comp and had 2 physer in May 21. Still she got bad covid. Her daughter aged 28 who hadnt gotten vax also has bad covid. The world needs to be careful about this virus as it will mutate endlessly unless people stop behaving foolishly and its clear that even if you are vaxed or previously had covid and were recovered you can still get covid and badly. Some pressure needs to be put on authorities to ensure cllrs and other immuno compromised persons form part of pharma tests for vaccine efficicy. That these immunocompromised people are not part of this is not sensible as the people most at risk should be the focus of any vaccine trial and not solely the healthy people with properly functioning immune systems. From my antibody results its clear that you can get antibodies from getting the vax even if you are undergoing treatment for cll with a btk inhonitor ,so dont despair. In addition you probably have a T cell reponse that is not capable of identification in these test results ,at least not at the moment. Regards Bernard

Ptcad profile image
Ptcad in reply to Timree

Sorry you’ve so clearly been through the mill but - as you say- hurrah for the scientists and doctors working on the world’s (and CLLers) behalfs.

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