I am new to CLL only a year on W&W. My Lymphs are #10.26 and % is 69.7. WBC is 14.73. I had the Moderna vaccine in Feb and March. Just had an antibody test and the result was negative - no antibodies. To say the least I am heartbroken and disappointed. Does anyone have any ideas as to what I should do next? The thought of masking up all the time or being a hermit is unbearable. Down in the dumps to say the least. Sorry for the vent but I love the support from this group.
No Antibodies shown after taking the Moderna V... - CLL Support
Well, for one thing you keep on taking deep breaths....this isn’t over yet. I am like you, had the Moderna series and was antibody tested at 6 weeks and 8 weeks after the last shot and just this morning was tested for the 90+ says after last shot. Then I will soon be going into another testing period. So far the three tests I have had taken were for checking to see if antibodies had been make, this was involving the B cells. This next testing session will involve the testing for the T cells. It is being done thru the LLS here in the states. This test is not open to the general population just yet. But they know there is an issue for many of us and they are trying to get to the bottom of it.
Yes, we have all been discouraged to learn we have ZERO antibodies but we shall get thru it. At least we are not terminal or have ALS or some other terrible disease. It is but a small hiccup in our live style...this too shall pass.
You just hang in there we are in this together!
Your question is one of our most frequently asked recently and we have a excellent Pinned Post created by KatieBlue that summarizes many answers here: healthunlocked.com/cllsuppo...
And I found a helpful set of comments here:
A posting by Dr. Susan LeClair on groups.io/g/CLLSLL/message/...
Susan LECLAIR May 2 #31172
Your immune system is composed of three major “systems” that can work independently of each other or work in concert. That one of them might not work well as you want does not lessen the other two. As part of the early research, all three systems are triggered and can act independently. We do not routinely test the other systems.
This blood test looked at the number of antibodies formed by a specific date. Is it possible that people with altered immune systems take longer to make antibodies? That would require taking too many blood tests over a longer period of time and so that is not done outside of research studies/clinical trials.
Is it possible that your immunization triggered more memory cells than active antibody producing cells? We do not test for this.
Reporting of SARS-CoV2 post vaccination does show that, while subsequent infection is possible, there have been no reported deaths and no reports of serious disease. Is that true for the immunocompromised? We do not know.
This virus is approximately 2 years old. Never in the history of science have we learned so much about a virus, a disease, and or prevention in so short of time. Do we have all of the answers? I suspect we do not yet know all the questions so, no, we do not. Perhaps what we all need to do is to concentrate on living each day to the best of our ability.
'The current Food and Drug Administration-approved COVID-19 mRNA vaccines induce robust CD8 T cell responses in addition to humoral responses60,61,62,63. Our findings suggest that vaccination of patients with hematologic cancer might provide protection through T cell immunity, despite the likely absence of humoral responses. Ultimately, understanding how the immune response relates to disease severity, cancer type and cancer treatment will provide important insight into the pathogenesis of and protective immunity from SARS-CoV-2, which might have implications for the development and prioritization of therapeutics and vaccines in subpopulations of patients with cancer.
Test again in 2-3 months. You may develop some by then. 🙏
My results went from 20 to 2500 three months later.
Time may improve ur results.
I will chime in as we are at a very similar place in our disease. I would suggest you buy the do it yourself covid test. You get results in 15 minutes. If you test positive, get the clonal antibody cocktail infused a.s.a.p. Find out what hospital near you has an infusion center.If I test positive, i will test myself and if positive. Drive directly to my local hospital emergency and get infused. They told me I didnt need to test anywhere else, I could do it all at emergency since I have leukaemia. I prefer to test at home to eliminate a false alarm trip to emergency.
Hope this helps, it has me. I dont worry about covid at all anymore. Given very soon after onset of symptoms, the clonal antibody cocktail is quite effective at exstinguishing covid.
So you are saying take the test even if I have no symptoms or antibodies? I guess I could be asymptomatic. Good thought.
No, what I am saying is this. To protect us in case we contract covid. Upon any cold or flu symptoms, self test at home or on the road. If the test is a positive? Get youself to an infusion center for the clonal antibody cocktail that day! The slow way is to call your gp and have him order it. The fastest way is to line up in advance what hospital has the clonal antibody cocktail. The hickup with a hospital infusion center is that they have working hours. Sometimes those working hours are very limited. Cure to that problem is going directly to a known Hospital Emergency deptartment that carries clonal antibody cocktail. This is the plan that I have dry run in advance. My hospital told me upon any symptoms and I mean any! I could walk right in to the emergency department (with a mask). Get tested for covid at emergency and get infused with clonal antibody cocktail right there in emergency while laying on one of the beds! Thats 24/7, no need to make an appointment with the infusion center that may be closed when I just started exhibiting symptoms. Or maybe your Doc is out if town etc.I confirmed all this with my local hospital. Explained I have Leukaemia, they transferred me to the head nurse at the Emergency department. She told me go directly to emergency. No approvals from anyone needed as they handle it all in emergency.
The 15 minute self test is so that I dont waste my time going to emergency for a false alarm. Meaning, I get a cold or flu symptom. Speed to the emergency dept and get tested. Only to find out its just a common cold.
Thats the plan.
Got it - both the test and your message. Will sit on test until I get symptoms of something. I called the closest hospital and they told me they don't carry the test. That hospital is 40 minutes away. I will try others. Thanks for the clarification. It is what I thought you meant but you made sure. Love the support from this group.
Combat covid, is a website run by US government where you can find infusion centers near you.
I had the same experience. If you go to Lab Core, which is a national lab, they offer a semi quantitative test which actually gives you a number. After testing negative at a lab that just provided a yes or no result, on the quantitative test I had >250 which meant I was positive for antibodies and that I could behave as a vaccinated person. (for now anyway). I plan to retest periodically.
I'm not sure what to do either. I had the two Pfizer shots, and a lot of research suggests it may not be very effective if you are in the middle of CLL treatment.
On the plus side, I started chemo recently and it took my WBC down from around 140,000 to 5,000.
Sounds like the 14,000 range but you should ask your doctor to clarify.
The other number would be dangerously low.
Hi, I’m also new having just been diagnosed in February and on W&W. I met with my CLL specialist at Mass General in Boston several weeks ago for the first time and had the “ antibodies ”conversation. I had the Pfizer vaccines and did develop antibodies, however the doctor reminded me that we have no idea if they work and to continue to be careful. When I asked if he had any idea when we would have more information he said that in two months time there would be more information and three months after that he would be able to give me more definitive information. So it looks to me like it will be later in the year before they have a handle on this. I’m grateful for the nice weather which makes it much easier to gather with family and friends. X🙏
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