My twin sister has CLL and we finally got the results today from Boston Heart Lab’s semi quantitative IgG assay against the spike protein (code 648) and sadly the result was .04 and the test’s description says anything over .08 is positive for seroconversion. However, after reading about the test’s criteria today, we learned that we may have drawn the blood too soon. It recommends >3 weeks post first or second shot for accuracy and we did it the second week post first vaccine. As soon as we get the second test results, I’ll post again. I’m trying to get a T cell antibody test as well. I’ll read AussieNells post to see if there are any tests available for T cell antibodies to the Covid vaccines.
Some background - My twin sister who is 53 had a CLL complication of AIHA several months ago (was on W&W for 5 years) and had to start prednisone and Rituximab with Ibrutinib during the heat of the pandemic in Los Angeles. Her immune system was severely compromised by her CLL, ibrutinib, prednisone and Rituximab, all which lower your immune system’s ability to fight infection. I read that Rituximab (anti CD20 monoclonal) can take 6-12 months for your immune system to recover after your final infusion and her last infusion of Rituximab was Oct 1, 2020 so she was just shy of 6 months when she got her first Pfizer shot. Our hope was that she had enough T cell recovery to mount a response to the vaccine; specifically the CD4 and CD8 T cells (infection fighters) which can be reduced from Rituximab and are key to survival from Covid.
We read that while on ibrutinib seroconversion from vaccines can be extremely low. “Seroconversion after the seasonal influenza vaccine in patients receiving ibrutinib has been reported to be as low as 7% in 1 study evaluating the standard-dose vaccine and 26% in another in which a proportion of patients received a higher dose. Jan 14, 2021”
Apologies for the lengthy post.
Stay safe and healthy!
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Twin21
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this is my concern forhusband as well he also had AIHA June 2020 with IGG prednisone and rituxamab and he had both Pfizer vaccines in February. I still wonder how much immunity he actually has all the best to you
Thank you for the information. You are a person who goes for the answers and I appreciate your report of finding that you went for the tests too early for a possible reading to be valid.
It is quite difficult to feel that being the first to get out their for tests or vaccines will fully protect us. Time will tell, and we are all tired of the waiting and isolating, but the need for all to be watchful, take all the precautions is one we have to hope most will see as their responsibility as world citizens.
I hope your sister's T cells will be her main guard. She is fortunate to have Dr. Furman and you by her side ( if figuratively) and keeping up in the intricacies of her CLL.
Thank you for sharing your twin experiences to guide the rest of us. I'm sorry, but I don't know of any suitable T cell tests. Having a better insight into how our T cells respond unfortunately remains very much unknown, but it appears that that may be the longer lasting aspect of our vaccine provided protection. As you note, it takes 6 to 12 months for lymphocyte counts to rebuild after anti-CD20 monoclonal antibody treatments. That's because when all the CLL cells are gone, the monoclonal antibody continues to circulate, gradually reducing as it attaches to new B cells.
Thanks Neil, I really appreciate all your dedication and support. Since it may take another 6 months for my sister’s immune system post Rituximab to return to normal, I wonder if a vaccine booster shot in 6 months would be beneficial and I wonder if it’s safe. I also wonder if pausing Ibrutinib to help with vaccine efficacy is being considered among the hematological health care professionals. Not sure how much better the vaccine response will be without Ibrutinib since the CLL immune system is already vaccine challenged. I hope we all get answers soon from the wonderful hematological scientists, practitioners, researchers and the brave patient volunteers.
I suspect that vaccine boosters for those with compromised immune systems, including us, is likely to be beneficial, perhaps with a different vaccine used for the booster, as is done with pneumonia vaccinations.
You aren't the first to talk of pausing Ibrutinib (or other BTK inhibitor or other targeted therapy drugs), to hopefully improve response to a vaccination. However, given you need a few days for the effects of the treatment drug to fade away so new B-lymphocytes can appear, then at least two weeks for the COVID-19 specific B-cells to mature into immunoglobulin/antibody producing plasma cells, which are thankfully not that susceptible to treatment drugs, you are talking at least 3 weeks where the CLL tumour can regrow and perhaps produce tougher to treat sub-clones. There's also the risk of a flare up, which can result in a frightening pseudo Richter's Transformation experience: healthunlocked.com/cllsuppo...
So sorry to hear this. Unfortunately, not many members will see this as it’s on an unconnected post. We send our condolences to his family and friends.
Oh, my! So many statistics! You sound like you're into research. Unfortunately, that's what this illness does to us. Once we're diagnosed (or hear someone in our family has been diagnosed), we hit the internet for ANSWERS. Being the twin of a CLLer, obviously, will make you have concerns about your OWN health. It is wise to let your own primary physician know about your twin sister's diagnosis (just to be on the safe side).
Thing is, we're ALL individuals & we ALL respond differently (physically & emotionally) to the receipt of "the news".
I'll say what my oncologist has said to me on more than one occasion, "You're THINKING too much.". He's right! Being diagnosed w/this "crazy-making illness" makes us wonder: how we got it; what could we have done to AVOID it; what should we have NOT done to avoid getting it; and the BIG ONE...HOW LONG WILL I LIVE now that I have it?
Sound familiar? I'm not into the statistics as you are, but I've had the same oncologist since my diagnosis in June of 2003. I'm still here. I've followed his advice & gotten treatment whenever he's determined it to be necessary.
Re: the Covid vaccine, he said I should get it. After I got it, he said, "Good!", then said I needed to continue wearing a mask. Thing is, I'm currently getting an infusion of Rituximab once every 3 months. There's no possibility of waiting 6 months after chemo to get the vaccine!
My point is, we CLLers are ALL immunocompromised. We are all in varying degrees of suceptibility to All contagious illnesses & must be MORE cautious as a result. For many of us, we didn't really change our behavior THAT much when Covid hit! We were ALREADY being more careful than the average "healthy" person.
Since statistics are your thing, if you attend appointments w/your sister (& she's okay w/it) go ahead & ask her oncologist these questions about her potential for protective benefit from getting the vaccine. It seems like you'll be able to understand his/her response. The question is, will the statistical answer give you the comfort you're seeking for the two of you?
Isn't what you REALLY need to know 1) Did the vaccine do it's job & 2) Would it be a good idea to consider going through the two shots AGAIN after waiting the full 6 months post chemo? If you ask this of the oncologist, I'm confident that if he/she thinks it's wise to test your sister for antibodies & make a determination based on those results, then she'll have a better doctor/patient relationship & you'll get the answers you seek. Give her physician the chance to order the necessary tests & determine sis's next steps based upon the results of those tests.
If her doctor doesn't take you seriously, then your next question will be, "Is this the physician I want for my twin for the next several decades?", because (barring unforeseen circumstances) she should fully expect to STILL BE HERE several decades from now!
Yes, I'm a "wordy" person, too! Best of luck to you both on this wild ride of CLL! There will be ups & downs, just like life in general. One thing we have in our favor? We no longer have that "What if I get cancer?" thing floating around in our minds. We have it, now let's FIGHT it! Take care of yourself & your sister. Leaning on each other & knowing there's someone who knows us as well as we know ourselves is one of the many blessings of having a sister! 🙏🌹🌹🌹
Thanks so much for the thoughtful response. So appreciate the time and effort. You seem to really understand the psychology of this journey. Everything you mentioned like “What if I get cancer? How did I get it? How long will I live?, etc.” were exactly what we thought and said! You nailed it. All my doctors are very aware of my twin sister’s condition and know that I may be slightly more predisposed to getting it as well. I get blood work done often and so far everything is in the normal range. Same goes for my twin Sam now that she’s on Ibrutinib.
I research CLL in medical journals and other credible online sources everyday. I get “google alerts” daily whenever there is news about CLL. I’m definitely an “info-maniac” when it comes to my sister’s health. My sister is too scared to do research about her CLL so she depends on me to keep her calm and informed. She does the same for me for my health matters. We won’t google our own symptoms, it’s just too easy to get mortally terrified. It also helps to be knowledgeable when speaking with her CLL specialists. I’ve never missed a medical office visit with my sister. Even now during Covid, I attend via FaceTime.
Her CLL oncologist’s office was not familiar with the correct tests to measure her antibody response to the Covid vaccine and they didn’t seem that interested in knowing the vaccines effectiveness, so it took many phone calls to the nurses, doctors, admins and lab personnel to finally get the correct labs. It’s very annoying that the labs won’t let the patient order the lab, they require the doctor to call it in; however, this doctor and his office were so busy that they couldn’t take the time to write out the specific test i.e. SARS CoV2 semi quantitative total antibody - Spike test. Instead they called the lab and said they wanted an antibody test for Covid. So frustrating. This is why I always stay on top of this.
My sister’s Hemotologist oncologist is very good but overwhelmed with too many critically ill patients to take the time to answer my Covid questions and concerns. For example: I sent him an email with multiple questions and his response was just:
“please tell me which LabCorp you would like to use”
Below is the email I sent to him:
“Thanks for helping out with this. We want to find out if Sam was able to seroconvert from the Pfizer Covid vaccine. Also, now that she has had the second shot, maybe we take some more blood and analyze her again?
It would be great to get Lab Corps SARS Cov-2 Semi Quantitative Total Antibody - Spike Test: 164090 and CPT: 86769.
Will you please ask your infectious disease specialist if they can also find a test to measure her T Cell response to the Pfizer Covid vaccine as well. I don’t know what test that is.
Have you heard anything about people on Ibrutinib being able to seroconvert from any of the Covid vaccines, and were they able to produce a normal amount of antibodies both B and T cells?
Lastly, were Sam’s quantity of CD8 cells at the normal range?
This why I do research. If I hadn’t done this work, many potentially fatal incidents could have happened. For example, her children would have been socializing without masks, going into public places, etc. They needed to be strictly informed of their Mom’s vulnerability and how it will affect their daily lives. Also, you can see from her doctor’s response that he’s just too busy to respond to my questions. That’s why these forums are so important and why we need to be proactive and have health advocates in our network.
The hardest part about this pandemic are my sister’s teenage kids who need a social life for their emotional and mental development. They have made many sacrifices like not going back to school, and now they keep a “safe pod” of friends (parents of friends are all onboard and understand her vulnerability) who get Covid tests before they meet with my niece and nephew. It’s not perfect and I’m not happy about the kids seeing friends without masks, but I can only do so much and they get angry when I become the militant enforcer.
Apologies again for this hefty response.
Stay well, stay strong and keep up the good fight!
Just a quick follow-up. I think you'd appreciate receiving CLL Society Alerts from:
pkoffman@cllsociety.org
They are on top of all the research, meds & testing. If anyone can help you out, I'd think they'd either have the answers or would know exactly where you should go to find out!
Hi Twin 21 hope you and your sister are well , I did ask my cll Doctor (professor) about ibrutinib and my covid vaccine, he told to me carry on as normal before and after it would make very little difference either way , he did say with ibrutinib most people's immune system improves after being on the drug as a whole , he mentioned T cells being the bigger beneficiaries of ibrutinib, obviously he stated for most people but for some this is not always the case I try and read all new literature which is published but it can be hard going , I studied human biology at uni but a lot of the articles goes over my head
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