I took Ibrutinib prior to January 20 when it gave me AFib and a few other problems, then stated Venetoclax in July of 2020, and in August started the first of six doses of Rituxan. It would seem that Rituxan is the main culprit, as in my research I found that no immunity was created in cases which had received Rituxan within a year. Although a bit more, Ibrutinib is around 14-15% and Venetoclax is 19-20% of cases established immunity.
I am in severe dismay as this was not expected, I had been counseled to get the vaccine. But no one mentioned a word about it not working for me. Any thoughts you can add would be helpful.
BTW, I joined the LLS study looking at how much immunity people with blood cancers are getting from the vaccine, would recommend everyone do the same.
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KevinCLLITP
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Kevin, it is unclear from your post who counseled to get your vaccine and who failed to tell you the vaccine would likely not produce an immune response due to you being on a CD20 antibody drug. Lots of people have reported being confused on this, so it follows that lots of Cll doctors might have communicated more clearly with their patients on vaccine info.
My understanding has always been that with any vaccine I am likely not going to respond as well as others. I also knew going in that ibrutinib would make me even less likely to get an antibody response.
I think our doctors all knew this, but encouraged us to get the vaccine anyway because it still might afford us some small level of protection that could change a fatal covid case to a milder one. That’s still a possibility. We could be getting some antibody protection that is not detectable with current tests. We could get T cell help or get help from other parts of our immune system.
I have read where some Cll doctors told their patients on CD20 antibody drugs to hold off on the vaccine. I think most Cll doctors, however, still advised going forward with the vaccine because the benefit of possible protection outweighs the very slight risk of any serious vaccine side effect.
I took the vaccine and tested negative for antibodies. But I knew that was a likely result going in. I still don’t regret taking the vaccine. It might be helping me in ways the antibody test did not measure and getting the vaccine was no big deal for me.
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.
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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.
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Is it possible that your immunization triggered more memory cells than active antibody producing cells? We do not test for this.
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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.
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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.
Sorry to hear Kevin that you have not developed antibodies with the Covid vaccine . I have had one jab of the Astra Zeneca Vax and waiting to have the 2nd but I also have been on Veneteclax and Rituxan.I wonder if I will be in the same boat as you .
So I would like to ask anyone on this forum who has CLL and who has had either the Astra Zeneca or Pfizer and you have been tested to see if you developed antibodies ,what result did you get?.
Also perhaps Aussie Neil can answer a question. What is the scientific basis for people over 50 in Australia only being allowed the Astra Zeneca Vaccine while 40 to 49 year olds are given the Pfizer vaccine. No one seems to be able to tell me why us over 50's cannot have the Pfizer vaccine? and- Can one mix and match say have first vax as Astra Zeneca and second vax of Pfizer?
In the US it has recently come out that the first shot does not need to be the same as the second shot, so we could have Moderna for number one and Pfizer for number 2. I am clearly over 50 here in the US and I had Pfizer so I haven’t any idea why it would be limited there. We cannot even get the AZ vaccine here, its not been approved yet.
There is a document I have read in the past couple of days which said that in cases of Rituxan, in the past 12 months, there were 0 cases of people who had developed immunity, and if you had ibrutinib only, it was in the area of 15% and if Venclexta it was about 20%. You could have a test now to see if you have developed anything from your first shot and then you could decide on your second perhaps. I don’t know if the LLS is extending their study over there, but you can join it on line and get the instructions for the tests and you have to use LabCorp, so it would probably be a different vendor internationally. I wish you could luck and when you find out I hope you will come back and update.
there is also some other great info that has been linked to other answers to this question that you should review.
I've been on Imbruvica 420 MG. for 5+ years. I have had a few minor problems such as high blood pressure but it is controlled and I don't panic. Of course there would be side effects, I'm taking a drug. I had both doses of Pfizer and 5 weeks later I took a test to see if I had antibodies. None. 0 antibodies. I was disappointed but not totally surprised. If the Imbruvica keeps my leukemia from spreading it might have the same effect on my immune system. I will continue to wear a mask, not travel, and keep semi isolated util the rest of the world gets the vaccine and I get a booster.
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