1.More data coming that suggests T cells probably will not be rescuing us post vaccine if not antibody (humeral response). No surprise there. CLL patients usually have lousy T cells—sorry.
2.Discouraging data from a small trial where no-one with CLL who did NOT respond to the first 2 shots responded to the 3rd dose: assets.researchsquare.com/f...
3.No safety issues seen with the booster so that’s good, but the risk of an auto-immune reaction should be consider in folks like me who have had such complications including ITP or AIHA
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4.The LLS vaccine data was surprisingly better in CLL and BTKi patients than in other studies. Most untreated or 1 year post treatment patients were seropositive.
CLL Society’s Recommendations for COVID-19 Vaccinated Chronic Lymphocytic Leukemia (CLL) Patients-Based Upon the CDC’s Updated Considerations for People Who Are Immunocompromised and Other Underlying Data ( cllsociety.org/2021/07/cll-... ) is still good guidance.
Big new CLL Society COVID guidelines and checklists coming soon.
Just finished our ASH abstract on MRD and fixed duration, very competitive but hopefully its will be accepted.
Stay strong.
We are all in this together.
Brian
Brian Koffman MDCM (retired) MS Ed
Co-Founder, Executive VP and Chief Medical Officer
Thanks as always, Brian, for your timely sharing of important information from CLL Society. You definitely deserve your special "CLL Cure Hero" designation at CLL Support.
Great updates Dr Koffman, much appreciated. Interesting points noted.
Was wondering…. from the LLS Study first report are you able to estimate (or know of) a more definitive number or scoring range when they stated in their report… “Healthy individuals typically score well above 100.”?
Reason I am seeking your expertise on the above questions is there is an increasing yearning on this website from some members to get a 3rd shot in hopes of achieving the above healthy persons antibodies (or significantly increasing their first test score) and hence have a better shot at protection against covid. I totally understand that yearn having done the 3rd shot thing a couple months ago n it fortunately worked really well!
Also wondering how quickly do antibodies levels dwindle? What’s your guess on range of months say a healthy person’s level of antibodies would last?
May I ask, how did you get your 3rd shot? I've been refused by 2 pharmacies with a letter from my doctor. One pharmacist suggested that I might try crossings out of illinois where they keep a statewide registry, and probably have to lie which I am not comfortable doing.
Apparently different states have different rules on getting vaccines? Sorry to hear of your roadblocks.
No doc request needed in our state (Colorado) for getting vaccines (any type vaccines including covid… e.g., I just got my tetanus 10 yr vaccine at Target the other day as a walk up).
Walgreens signup online was super easy for covid vaccines … tons of open time slots, pick a day n time, walk in get the jab n go, no waiting in lines. Also, pharmacies here are taking walk-ups for covid vaccines now.
Word is anti-vaxers are so many that pharmacies here are seeing their covid vaccine supplies expire and wasted, sad that is. Maybe not that way in your state?
Dwindling levels shouldn't matter much, as the point is to mount a quick response if exposed to the virus. Folks my age don't walk around with high levels of measles antibodies from past measles illness, but we should have a measurable level that will bounce up if re-exposed. Same for those vaccinated.
Brian, thanks for this link... I have not been in any enclosed spaces with people other than a few family members since March 2020, apart from unavoidable medical appointments and two 'daring' visits to our small local delicatessen (masks on, max. people in shop 3). I intend to continue with this discipline for a while yet, despite the encouraging (to me) news that:
"CLL patients in deep remission long out from their most recent treatments have a good chance of responding well to the vaccine with a rise in antibody levels."
Thanks Brian. I’ve been on w and w for several years with very stabile numbers. I’m wondering how my immunities would be and also if I’d benefit by a booster shot. I’m 70 and so far would not know I have cll.
Why would there be a potential auto immune response in patients with previous ITP or AIHA with a third shot and not the first two shots? That seems perplexing. I assumed my AIHA came from packed marrow just prior to first treatment and with CR that would be less of an issue for me until I near treatment again. Confusing data, just when I was building up the nerve to seek a third booster shot.
The French study of humoral and cellular responses to vax plus booster is a bit of a downer, especially to anyone who's been on a CD20 mAb. Other post vax antibody studies in CLL patients have linked poor response with being in treatment, some pointing the finger at BTK inhibitors some at anti CD20s.
From your perspective, how does all this post vax analysis square with the recent review of survival of CLL patients hospitalised with Covid,
ashpublications.org/blood/a... which found no association with treatment, or with hypogammaglobulinaemia; while age >75 and comorbidities seemed to be the big risk factors, same as for the general population.
If infected. the ability to form antibodies seems most important, followed by healthy T cell response. Good care with mABs and appropriate therapy can help.
Jon is correct, This type of research is hypothesis generating, not proof. But since CLL do so poorly if infected with COVID, I am open to considering novel approaches
Thank you for keeping us informed. I am taking Alacabutinib for a year and Ibrutinib 14 months prior. Vaccinated with Moderna, I had a good response including rash however no antibodies after testing X2. If I went for a 3rd vaccine shouldI get a moderna?
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Good news on vaccine efficacy for the 80%
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UK: Here’s a list of people who are eligible for the 3rd dose of Covid vaccine. 
