How do I safely live my life with CLL if my an... - CLL Support

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How do I safely live my life with CLL if my antibody test results are one of three scenarios?

learning2021 profile image

I am a stage zero CLL patient of 5 years awaiting the results of my antibody test ordered by my oncologist due to the recent news that CLL patients are often not getting as many antibodies produced as hoped resulting from their CoVid vaccines. I had 2 doses Moderna (Feb and March). I have been very patient and cautious by sheltering, socially distancing, allowing no one in our house, not going in anyone else's house, and masking the entire pandemic. I retired from teaching due to CLL as a precaution which I was not happy to have to do but I accepted it. The results of my antibody test will be forthcoming by this Monday , 4 days from now. My doctor has explained that the soon forthcoming results of my antibody test will be one of 3 possibilities: either be positive (meaning that I have robustly produced the antibodies as result of vaccine), or will be a weak negative (meaning weak production of antibodies post vaccine), or will be a strong negative (meaning no production of antibodies post vaccine). I would like to ask your feedback of behavioral protocol for each of these 3 possible scenarios of antibody test results so I can think about my future rationally because I am getting tired of the isolation. I would like to specifically know what I can and cannot do in my daily life/who I can interact with and how. Of course I will ask my doctor as well. The areas of behaviors I am interested in knowing from you if you fit any of these 3 scenarios (your doctor's advice given to) are about: social distancing, masking, being with friends who are vaccinated (inside or outside only?), visitors and relatives (no larger than 7) for eating dinner I cooked INSIDE my house, visitors and relatives over OUTSIDE in the yard to eat dinner I cooked. I continue to think of others who have much larger problems than me and I wish the best for everyone's 100% wonderful health outcome.

29 Replies
Jm954 profile image
Jm954Administrator

This is really tricky to advise on and is almost certainly best decided by discussions between you and your doctor who will know your level of vulnerability when you get your results. Let us know what they are and we will keeper fingers crossed for you that you've made lots of lovely antibodies. :)

learning2021 profile image
learning2021 in reply to Jm954

thx:)

learning2021 profile image
learning2021 in reply to Jm954

got my report and share it here. Hope it helps those who see it. Thx.

Currently there has not been a protective correlate determined for antibodies. In other words, they do not yet know what level of antibodies from the vaccine are needed in order to be adequately protected from Covid.

They may be getting closer to determining that, but as of my reply, they simply do not know.

I’m uncertain about there only being three scenarios. But since researchers don’t yet know that protective level, we also can’t know if a positive result is actually robust or weak.

I have been told to proceed as if the vaccine gave me no protection. But our circumstances are different as I’ve been on a BTK inhibitor for almost 3 years. Some studies indicate those who have not had treatment fared some better than those on certain treatment and timing of treatments. At the same time, another study showed the highest CLLers’ antibodies were over 100 x fewer than those of healthy people.

Studies are also being done to look into other parts of our immune systems, such as t-cells.

But unfortunately, we are in the midst of more unknowns than known at present.

kensim9 profile image
kensim9 in reply to KatieBlue

No definite proof antibodies help, but good enough in trials to say vaccine worked. Or is that me being too cynical! Usually am!

Monoclonal antibodies fix situation no interest to Pharma as they want continual treatment for profits.?

KatieBlue profile image
KatieBlue in reply to kensim9

I know I have had this run through my brain at times also. This is pure speculation on my part, but a Research Assistant (working in immuno therapies and vaccines) friend from S America indicated to me that researchers had access to tests/other measures of immunity than do diagnosticians— that those tests are only available to lab researchers. We have access to commercially available tests.

I suspect those tests are more expensive and harder to administer for the type of studies we are more familiar with here, such as the LLS study, versus the official vaccine trials.

That being said, I want to clarify again that this falls within the realm of speculation on my part.

got my report and shared it here on site. Thx. Be well.

Thank you learning2021. I wasn’t able to find your post of your results, but perhaps it will pop up in a bit.

Be well.

here is a copy of it here for you as I don't know how the posts look at your end. Thx for communicating:)"thank you for your feedback and sharing your situation...your whole description of habits is a carbon copy of mine. Got the test results back yesterday afternoon, read it, and called my dr. for their "interpretation" of its meaning right away...bottom line, I am positive. They are happy . They said in answer as to how I should live, to use common sense (luckily I do have that:))...1. wear mask if unsure who among you is not vaccinated. 2. allowed to be massless among my vaccinated friends inside and outside our homes, 3. prefer outdoor dining..do not eat inside restaurants (I wouldn't anyway), 4 we can have company over, I can cook for my company and they can eat my food and I can do the same in their homes...what a GIFT so grateful...5. avoid large crowds ...all common sense. 6. social distance social distance social distance. 7. mask in stores and institutions. Yes, they admit as part of the 2 page DETAILED report there is much they don't know about the # of antibodies needed to stave off CoVid. (I am paraphrasing) They said sometime down the road, as for all of us in the world, we should get a booster shot vaccine when more information comes out. If anyone need my 2 antibody lab results more specifically, I can share that....it is quite quite technical...but if it allays another person's anxiety here on this site, I will share it to help them. Finally, you saw through me:) I felt by posting my question, that when I got my test results it would help all you here on this site. May you be well." please note I forgot to say they repeatedly said wash hands wash hands..again, common sense:)

Reply

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Thank you.

I will add one other consideration as to boosters. I listened to part of the CDC panel earlier this week, mainly toward the end when they discussed boosters.

Obviously more needs to be studied, but they did mention that in the cases of those who did not get a response from the vaccines, depending on what they discover (and that would vary by health condition) that they may not recommend boosters for some groups if they have not developed an immune response and is believed they may not develop an immune response. A lot will be determined by what they find out as time goes on. I believe they said those individuals may need to rely on therapeutics.

KatieBlue profile image
KatieBlue in reply to KatieBlue

Here is a screenshot from the CDC slides about boosters considerations in certain populations to add additional context to my recent comment about the possibility of not recommending boosters for some immuno compromised people.

Screenshot from CDC panel June 2021 regarding Covid vaccination boosters

thank you. It reiterates the helpful link you shared with me. Much appreciated.

thank you for your diligence at staying on top of things. Keeping an open mind and following the science as it reveals itself. Stay safe. Thx again.

thx for your further info...we must be aware and vigilant reading to keep up with everything.

learning2021 profile image
learning2021 in reply to kensim9

thank you for your feedback. Be well.

learning2021 profile image
learning2021 in reply to kensim9

got my report and shared it here. Hope it is helpful info. Be well.

thank you kindly for all your information. all good health to you as we all proceed.

HiI was diagnosed, stage 4 in November at the age of 56. Went straight to treatment, I have had 2 jabs and a dose of Covid. I live a normal life as possible, I only social vaccinated family and friends. I visit pubs and restaurants outside only plus other outside venues ... theme parks etc. I have a 1 Yr old and 3 Yr old so busy Dad with nursery and schools runs every day plus full time house husband since I retired 5 months before my diagnosis. I have no immune system, so just take basic precautions and so far loving life.

really love your positivity...keep well....and energized:)

got my report and shard it here. Thx. Be well.

I received my 2nd Covid-19 vaccination February 8th. As part of the US Lymphoma Leukemia Society's survey, I had an antibody test 2 months later that came back "No detectable antibodies". I had a second LLS antibody test at the 4 month mark that also came back "No detectable antibodies". I am practicing safe living.... mask, no crowds, wash hands, etc. Sad situation for us CLL patients.

learning2021 profile image
learning2021 in reply to DanBro1

we are in limbo, it is true and we must be patient as they research. Be well. thank you.

learning2021 profile image
learning2021 in reply to DanBro1

I got my report..to see it come back to this site. Hope it helps us all to share it. Thx.

Great question learning 2021 and welcome aboard to HU, read you recently joined. You’ll find it’s a great website of many knowledgeable/helpful people on CLL and offering great posts like yours that helps us all learn more about this cancer and it’s challenges and same questions we have in our head but didn’t post.

Your post question hits home since it “appears” your CLL situation is similar to mine and like so many of us we have ventured into the antibodies test results arena to hopefully give us a level of protection gauge vs covid.

But as KatieBlue often points out, the antibodies test experts don’t know yet what the antibodies “scores” mean relative to level of protection against covid. A delima. Your results will probably include that disclaimer. HU folks have posted their scores and your doc is generally correct that their are “3 buckets of scores” so it seems to be. Hoping you land in the robust antibodies bucket!

With that said, back to your question. It will put your CLL doc in a tough position to give you your desired guidance because of the lack of understood antibodies level of protection data (so far). Will be interesting to hear what your doc says relative to your antibodies results and your posted question.

I’ve had this very same conversation with my CLL doc and he stated “for my case” I could go by CDC rules for vaccinated people, having being fully vaccinated and showing some level of antibodies (though not a robust level like a healthy person). That is but one case and one doc’s opinion.

Even with that opinion known, I am still cautious wearing mask indoors at places (stores,etc) I visit where it seems I’m only one wearing a mask! I’m also cautious to interact with vaccinated people as much as I can and taking their word on that (another delima?). And no big indoor events (gatherings/parties, sports, concerts, etc) I’ll be attending for awhile. Just saying no to that, even with a green light from my doc. But I do get outside a lot, where science has said it’s a safer haven. My wife n I do many activities outdoors we enjoy, and that helps tempers the pandemic craziness too. So trying my best to balance living safely and yet doing enjoyable activities.

Your good question brings about many considerations. Each person on this website has their unique circumstances and risk tolerance that leads to their personal take and actions on your question.

Good luck ahead in your CLL journey and again I hope you have many antibodies!

learning2021 profile image
learning2021 in reply to Pin57

thank you for your feedback and sharing your situation...your whole description of habits is a carbon copy of mine. Got the test results back yesterday afternoon, read it, and called my dr. for their "interpretation" of its meaning right away...bottom line, I am positive. They are happy . They said in answer as to how I should live, to use common sense (luckily I do have that:))...1. wear mask if unsure who among you is not vaccinated. 2. allowed to be massless among my vaccinated friends inside and outside our homes, 3. prefer outdoor dining..do not eat inside restaurants (I wouldn't anyway), 4 we can have company over, I can cook for my company and they can eat my food and I can do the same in their homes...what a GIFT so grateful...5. avoid large crowds ...all common sense. 6. social distance social distance social distance. 7. mask in stores and institutions. Yes, they admit as part of the 2 page DETAILED report there is much they don't know about the # of antibodies needed to stave off CoVid. (I am paraphrasing) They said sometime down the road, as for all of us in the world, we should get a booster shot vaccine when more information comes out. If anyone need my 2 antibody lab results more specifically, I can share that....it is quite quite technical...but if it allays another person's anxiety here on this site, I will share it to help them. Finally, you saw through me:) I felt by posting my question, that when I got my test results it would help all you here on this site. May you be well.

Pin57 profile image
Pin57 in reply to learning2021

We are CC’s (carbon copies)! … when it comes to doc covid advice n the road we are taking to protect ourselves. It’s a personal thing for sure, n a big deal too.

I just found a recent article about antibodies scoring, what it means, etc though no definitive level of protection data scores noted. I found it informative, here it is if interested…

testingforall.org/understan...

learning2021 profile image
learning2021 in reply to Pin57

Interested..u bet...thx...I am printing it and will compare to my report. You are kind to have shared this resource. The info is flying all around us in this new age of disease. It is up to us to advocate for ourselves and to support others. Thx again. be well.

I’m not sure where the cutoff levels of antibodies are. I had 276 u/ml. Not sure if I’m in positive or weak negative territory. I would think positive, but as I said, I have not heard of any antibody level cutoffs except testing positive for antibodies, or not detecting antibodies.

learning2021 profile image
learning2021 in reply to kc1953

thank you. My report which I just this moment revealed, had so much data about #'s but it is so technical I called my doctor and asked the bottom line. I was glad of course to be flat out told I am positive and I asked clearly defined questions as to how I must behave to keep it so. May you be well.

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