On April 29th 2021, I saw my hematologist. He told me that CLL patients are more seriously affected by covid infections and that the vaccines don't work as well for us. My question is "Is there anyone out there with CLL who had been vaccinated and subsequently got covid anyway?" How severely were you affected by covid and how are you doing now? Do you have any advice for other CLL patients? Thanks, Bob
P.S. I am age 77 and I've had CLL for decades. I received both doses of the Pfizer vaccine about 3 months ago. I've been taking Ibrutinib for over 2 years and have been doing quite well. I'm still worried about getting covid and being very cautious.
Written by
Bobsterguy
To view profiles and participate in discussions please or .
Very good question, I have the same concerns. I would like to know. I just got my 2nd Pfizer vaccine today and hoping I get some kind of protection. Thank you.
I am a CLL patient on Imbruvica 5 years. doing well. I was vaccinated with both shots of Pfizer5 weeks ago. I have NOT had covid. I did have a SARS COV 2 test last week which came back negative. Negative is not a good thing. I am NOT protected from covid. No immunity. So you, like me must be extra cautious. No immunity to infections of just about any kind.
Hopefully no one will answer your post telling us they have had the vaccine and still came down with covid. Stay safe.
Not exactly. The antibody tests don't reveal the level of protection you get. It does not check for T cell protection. And it wasn't developed to check vaccine induced antibody generation. Covid induced antibody generation check was the purpose. Yes, stay careful.
Not exactly true. The LLS study tests for the vaccine induced antibody against the spike protein. But positive blood test evidence for this antibody may or may not imply protection because 1) they don’t yet know what level of antibodies are needed for protection, and 2) there are other aspects of immunity such as t cell response that aren’t measured.
Some CLLers show no production of the the spike antibody and some show high response (I showed >250 u/ml of the spike antibody, which is the highest level the LLS blood test can measure). Regardless, we are all being advised not to assume we are protected, even though some may be. Quite frustrating.
As of about 2 weeks ago in the US there were less than 6,000 total cases of fully vaccinated people who tested positive for covid. So my guess is that there is not enough data on this yet to draw conclusions about CLL patients.
I have been on Ibrutinib for over 3 years now and doing OK. I have had both my Phizer vaccine shots. From what I have read is that with CLL the immunity factor might not be as good as others if any at all and you can still get Covid but it might not get to the point of hospitalization and the worse, death. I am not in anyway a health care person and this statement is only my interpretation of what I have read.
Anyone who has been vaccinated can get and potentially spread covid. It is thought that for those who are at the higher end of efficacy (healthy immune system) the vaccine would, however protect one from a severe case.
That does not hold true for those who have a low or absent response to the vaccine.
As to measuring one’s immune, currently there is no good diagnostic test for this. There are some test out there measuring antibodies to the vaccine, but for the labcorp semi-quantitative test, currently no one knows how to interpret the test results for immunity/level of protection. The tests have disclaimers about the results. (“It is yet undetermined what level of antibodies to SARS-CoV-2 spike protein correlates to immunity against developing symptomatic SARS-CoV-2 disease.”
From the CLL Society: “there are no data in CLL patients to suggest that presence of antibodies confers protection, or even lack of antibodies means no immunity.”
Thank you for this answer. I find it one of the best I've read but can't get the like button to accept my like. Button was showing 6 likes when I tried to add the 7th. LATER: I have discovered that I cannot like replies other than to the original poster.
That is a great question and I have wondered that myself. Currently on acalabrutinib and had my second Pfizer shot mid-February. I participated in a study at UPENN and did not test positive for spike protein antibodies, so I am continuing to live like I was never vaccinated. Deep down inside I am hoping I have some hidden immunity. I will look forward to reading the responses you receive to this inquiry.Stay well and be safe,
I have heard of one person developing antibodies to covid from vaccine, while on ibrutinib. I have heard many people say they did not develop antibodies to vaccine while on ibrutinib or acalabrutinib. Be cautious is my advice.
I am on ibrutinib and did get positive antibodies albeit a low number: I went off of it for 8 days before my vaccine and after but not sure that's what helped; probably my overall health. I was told that the booster would likely really help me.
I am on Ibrutinib, got two doses of the Pfizer vaccine and do not have antibodies and have remained cautious. I have not had covid and do not have any data on CLL post vaccine getting it but I have heard that there is a high correlation between the people who have gotten it here (israel) after two vaccines and being immunocompromised. So far the vaccines seem to be effective for the majority of the population and the small percentage that still end up getting it are likely the ones that, like us, have a less than perfect immune system. They took my blood for a T cell analysis and I am also awaiting approval of a third booster shot to try to jump start my antibody generation. My doctors guidance is to try to enjoy the easing of restrictions while continuing to be cautious for now
Yes I have Covid 19 currently. Vaccinated back in February. Not doing too badly right now I think that I am slowly getting better. Stay safe & healthy don’t chance getting Covid. 64 years old, 20 years diagnosed with CLL on Ibrutinib for 17 months. CLL is improved and overall stronger.
Thank you for sharing your present experience. Sending much peace and healing your way. Please let us know how you do in coming weeks and months. Your experience and advice for us is very valuable. Any advice or suggestions you make are much appreciated. Thank you. Bob
I am similar. I was diagnosed 20 years ago and I have also been taking ibrutinib since June 2019. I had fcr in 2010. I need ivig every 4 weeks. I am 63.
I thought I wouldnt have immunity but hoped that eventually antibodies would come through in the immunaglobulin. Anne uk
I had COVID in December. I hit almost every symptom. The disease hit about ten days after exposure. Some of the the issues that I faced with mine were, the progression didn't trigger the same immune response that it would in a healthy patient. I still do not show anti-bodies for the virus. It took several test while I was symptomatic to show up on my nasal swab. I discussed vaccination with my hematologist and we concluded that even with the vaccine there is no real way to predict an appropriate immune response. My WBC's simply cannot pass the needed information to the next cells. If you have a good relationship with your Dr., I would keep in touch with them and see if they are getting any updated information on it.
getting the pfizer vaccine is an excellent layer of protection, yes you may still get covid but you shouldn’t have the terrible symptoms and struggles that an unvaccinated person wiii have.
Canuck901 - that is true in the cases of those who are not immuno compromised.
Initial, small studies coming out are showing that those with blood cancers are likely to have a much lower, or even absent response to the vaccines.Further some with certain treatments, the response is further diminished. Which means less protection, or potentially no protection, from the vaccine than that of healthier individuals.
One anecdotal piece of good news is that there was an outbreak in a nursing home in the Netherlands for elderly people with dementia, and while many of them (all vaccinated) did get infected, none of them were sick enough to require a ventilator.
I just posted my experience with covid on another post. Both my husband and I got covid. I likely caught it from him because I never leave the house. He was vaccinated but I was not. Both of us had very mild cases, only sick a couple of days. Mild sore throat but only felt it when I swallowed, slight fever (100.4) and 1/2 day voice was off. I did take Paxlovid as a precaution, but by then I had no symptoms. If you do get it, just make sure you do everything possible to heal yourself. Take vit C, D3, Zinc, Magnesium (glycinate is the best). Do nasal rinses, drink LOTS of liquids and avoid sugar.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Acalabrutinib versus Covid19?
Will you continue wearing a face mask after COVID-19 madness is over?
Are CLL patients are kept in priority for COVID vaccination? 
