Vaccines, 3rd dose, LLS results and more - CLL Support

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Vaccines, 3rd dose, LLS results and more

bkoffman profile image
bkoffmanCLL CURE Hero
28 Replies


Things change fast.

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:

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


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 ( ) 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 Koffman MDCM (retired) MS Ed

Co-Founder, Executive VP and Chief Medical Officer

CLL Society, Inc

28 Replies
cujoe profile image

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.

Keep Being Safe & Staying Well = Capt'n K9

bkoffman profile image
bkoffmanCLL CURE Hero in reply to cujoe


Pin57 profile image

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?

Thanks in advance for any feedback you can share.

NoClew profile image
NoClew in reply to Pin57

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.

bkoffman profile image
bkoffmanCLL CURE Hero in reply to NoClew

I did not get a third dose. In CA, most local pharmacies aren't checking records as I understand

Pin57 profile image
Pin57 in reply to NoClew

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?

Good luck on your search!

bkoffman profile image
bkoffmanCLL CURE Hero

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.

Pin57 profile image
Pin57 in reply to bkoffman

Thanks for the reply, good info to know and learn from.

Peggy4 profile image

Thanks for the update Doc.Peggy

scarletnoir profile image

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."

stewie profile image

Thanks for all your hard work Brain , I couldn't see the data regarding the the BTKi patients ( slightly better numbers than other studies ) Stay safe


Jacksc06 profile image

Many thanks for your continued hard work and support.

elm1 profile image

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.

HopeME profile image

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.



bkoffman profile image
bkoffmanCLL CURE Hero in reply to HopeME

There is a risk with many vaccine including the first 2 shots. Small risk, but not nothing.

HopeME profile image
HopeME in reply to bkoffman

Your answer is helpful.


Txkate profile image

Thank you for this update!

bennevisplace profile image

Thanks for posting this summary Brian.

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, 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.

bkoffman profile image
bkoffmanCLL CURE Hero

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.

Youngen profile image

Thanks for summarizing this Brian! Where did the data about the Tcells come from? This is a real bummer as it was out fallback consolation prize ;(

WinJ3 profile image

Thanks for posting this update !

Jonquiljo profile image

Sorry, but need some references here with “hard” and conclusive data. The French report is referenced, but very weak with no real detail.

I appreciate the data, but prefer to draw my own conclusions. Thanks.

Justasheet1 profile image
Justasheet1 in reply to Jonquiljo


I hope Dr K answers your question.


bkoffman profile image
bkoffmanCLL CURE Hero in reply to Justasheet1

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

country76 profile image

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?

Mystic75 profile image

Dr. Koffman,Is the T-cell response to the vaccines the same for both IGHV mutated and IGHV unmutated Cllers?


bkoffman profile image
bkoffmanCLL CURE Hero in reply to Mystic75

Don't know. Good question

Dancelu profile image

Thank you Brian for your informative updates.

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