protection for untreated vs treated cll people

[Lindaan]

I have read the untreated cll people have a better chance of being protected by the covid vaccines yet now I see that some are saying the opposite...that untreated have less of a chance. Does anyone know which is accurate

[lexie]

Untreated, had some antibodies initially but lost them within 4 weeks. I read on here that low IgA , which I have, may be a factor. This is too individualistic to generalize.

[AussieNeil Administrator]

You really can't make a blanket statement about this, due to the heterogeneous nature of CLL in watch and wait and then the even more heterogeneous nature during and after treatment. How many years in watch and wait, what degree of immune compromise? Can we maintain reasonable immunoglobulin/antibody counts (per the standard IgA, IgG and IgM blood tests), or do we need IVIG/subcutaneous IgG to reduce our general risk of infection? If during or after treatment, what treatment and what previous treatments? (Some of us have had over 10 previous treatments!) Is the current treatment an indefinite maintenance treatment or limited term combination treatment? What treatment drugs? Does treatment include an anti-CD20 monoclonal antibody? How long ago did the last treatment end?

If you look at the varied antibody responses members have reported concerning their COVID-19 vaccinations this year, you'll get a better idea of how it is impossible to provide a accurate response in general. We don't even know enough yet to be able to answer it for just one individual with a known history - but we are getting closer to doing so. Even then, that answer is likely to be a guide of the likely protection, not an accurate answer you can rely on for your safety, because we don't know how long that protection will last - not just from the current COVID-19 variants, but how well that existing protection may be against new variants.

I've just looked at your profile to see if it was possible to give you a better answer and note that you have just joined our community. Welcome to the uncertain world of living with CLL, but please don't despair. There is a huge amount of shared knowledge in this community that will help you live longer and better with CLL, with choice posts included in our Pinned Posts section here: healthunlocked.com/cllsuppo...

If you take the time to update your profile: healthunlocked.com/cllsuppo... our members can better answer your future questions.

Neil

[neurodervish]

Hi Lindaan,

Welcome to the group. It can seem very overwhelming to step into the world of CLL. For me, it was like walking into a basic math class, but finding myself in advanced calculus.

To over-simplify a bit, CLL is a disease of the B cells, also known as B lymphocytes. B cells produce antibody molecules. So when you have a disease that affects your body's ability to produce healthy antibodies, your immune system is compromised.

That link Neil gave you offers the best list of resources I could imagine. It's a lot to wrap your head around, but I sure wish I had that list sooner. The first item linked there is titled, Chronic Lymphocytic Leukemia - CLL: When Being Fully Vaccinated for Covid-19 Doesn’t Mean Fully Protected" You may want to begin with that post to address your specific question.

The short answer is that all CLL patients are being told to get vaccinated, but continue to wear masks, keep our distance, and wash our hands like our lives depend on it.

There are several clinical trials in process that are trying to figure out how CLL patients fare with Covid vaccines. We're all very anxious for more data about it.

I wish there was a simple answer. Heck, I wish there was a definitive answer. 😕

[Lindaan in reply to neurodervish]

Thank you for your response

[HeatherS-UK]

I haven't been treated and I have no protection from the vaccine

[Lindaan in reply to HeatherS-UK]

Have you gotten an antibody test?

[HeatherS-UK in reply to Lindaan]

Yes I have

[Bikram21]

haematologica.org/article/d...