Hi all, I received my 3rd Covid Vaccine last Thursday 9/2 @ 4pm. I had no reaction to the first vaccine in January. The second vaccine in February, I was sick within 12 hours with muscle aches, severe nausea, and a pounding headache - enough to stay home from work. the following day by Noon I was doing pretty well. For this third shot, I thought I was home free but at 24 hours (exactly), so Friday at 4pm, I started to feel nausea and a VERY full stomach feeling, and vert tired. I had no let up until Sunday at about 4 pm so 48 hours after onset. However the fatigue has not let up since and it is now Tuesday. It is quite pronounced. My white counts are near normal on Imbruveca, 140mg since April 2018. I am fortunate that my red counts, platelets, etc have always been good and in the normal range. I have never experienced any fatigue from my CLL whatsoever. Is anyone else having these types (or any) side effects from the 3rd shot? I received Moderna all 3 times. Thank you!
Covid (3rd) Booster Shot Side Effects - CLL Support
Covid (3rd) Booster Shot Side Effects
Hi Cgolen, You may also want to check out Dr. Koffman's post on this topic (and even add your experience to his post). healthunlocked.com/cllsuppo... Maybe include which vax you received and what your CLL diagnosis is, to help give better context. Your profile doesn't include that helpful info, and I couldn't find it in your posts.
I definitely had a much bigger reaction to my 3rd Moderna shot (flu-like symptoms, headache, fatigue etc.) I initially thought the worst of it lasted just 2 days, but I ended up with a headache and fatigue for an additional 10 days or so. I shudder to think what getting Covid might have been like for me!
Oh gosh that is SO good to know. Thank you so much for responding! Sorry I didn't include enough info. I had the Moderna shot all 3 times. I am not sure what you mean by what my CLL Diagnosis is? I am sure I am missing information! If you could let me know that, that would be helpful also. I didn't know there was anything beyond just "CLL".
I barely understand all this, but there are many different sub-types of CLL, which is why the FISH test is important (Fluorescent in situ hybridization), along with IGHV mutational status. On top of that, certain medications (like BTK inhibitors) have been shown to reduce vaccine antibody response, and Imbruvica is one of them (you mentioned being on Imbruvica in a post from 3 years ago, but I don't know if you're still on it). How healthy you are, along with where you might be in your CLL progression are all factors in health outcomes. This is why having a CLL specialists is so important. Your CLL specialist at the Mayo Clinic should have info about this for you. It's probably in one of the reports you received and it's definitely worth learning more. If you didn't get a report, and can request it.
We still don't know enough about which parts of the immune system do the heavy lifting in fighting Covid. Is it the B cell antibodies (CLL is a cancer of the B cells), is it the T cells? Is it B cell memory, like with measles vaccines?
There is a pinned post from 4 months ago that discusses Covid vaccines and how some CLL treatments may cause them to be less effective. healthunlocked.com/cllsuppo... Also there are several clinical trials taking place that test Covid vaccine efficacy for CLL patients. I listed the ones I could find here: healthunlocked.com/cllsuppo...
What I know for sure is that knowledge is power and informed patients have better health outcomes.
Thanks for all of this! I am still on Imbruveca and have been since 4/2018. I only take one 140 mg pill as the side effects from more than that were outrageous. My numbers are all mostly normal except I need IVIG every 3 months starting last October. I feel fortunate in that I live my life pretty normally and don't have much interference from CLL at all. I do tend to not read too much due to becoming too anxious with too much info. At the same time I don't bury my head completely either, LOL. My specialist at Mayo was exactly in line with what my Oncologist had been doing and telling me which continued my confidence in my Oncologist in my home town. I did have the FISH studies in 2014. I remember being told I had No "aggression factors" and the Mayo specialist rates you based on all test results as Low, Medium, or High Risk CLL. I know the scores of 0-3 were considered "Low Risk" and I came out a 3. I had a couple of higher counts such has my bone marrow biopsy was like 80% (prior to treatment). But for the most part my red counts are always normal, my ALC is normal and my WC bounces between like 10-13. It had been 159 prior to treatment. I have been looking at the vaccine results in CLL folks and of course have become less than happy about that, and I wish I knew where I stood. I signed up with LLS but when I went to schedule with LabCorp, it had no option for finding a lab more than 100 miles away and there were none for me. I contact LabCorp to find out if I could still do this farther away but nobody ever gets back to me.
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That sounds frustrating. I know we're all very anxious to find out what, if any immunity to Covid we might have. Our lives hang in the balance, but I suspect it will be a while before we have solid evidence. Covid is still so new, and science needs some time to figure it out. I signed onto the “Multicenter Evaluation of SARS-CoV-2 Vaccines in Patients With CLL/SLL” clinicaltrials.gov/ct2/show... offered thru my CLL specialist's office. They don't give us any data about our antibody levels, but I feel good about helping the greater good of our CLL community. I could probably get my own antibody test done locally anyway. As I understand it, there is no conclusive data yet about whether the antibodies confer immunity for CLL patients, so we need to get vaccinated, but act unvaccinated.
I do hope you can find out your specific FISH and mutation info. It can be very helpful to include when asking questions here on HU. The answers to many questions on this forum are often, “It depends on your CLL type, current blood counts, and how those counts compare to your counts over the past 3 to 6 months.” There are some very smart people here and they are generous with their time, but they need that background info to help us. 😀😀
Ok thanks! I will look that up. I think I had a hard time deciphering it all awhile back and so didn't do anything further with that but I will give it another look.
There is more to this, but most of us have FISH results (cytogenetics) with either 13q, trisomy 12, 11q or 17p. Then there is mutation status: mutated is considered good, but unmutated is considered less favorable. Your FISH status can change over time, but your mutation status doesn't. I'm oversimplifying all this a bit, but I don't want to overwhelm you with more than you need before you need it. You might consider posting your results to this group and some of the amazing people here can help you interpret them . 😛
Sorry you are having strong reaction. Not to be a stickler but your third shot was most likely a full vaccine, not a booster. I read that Moderna’s booster will be half the dosage of the first two. And it’s not ready yet. Pfizer’s may be ready before 9/20. I believe Cll specialists are advising patients to receive a full third vaccine, not a booster. Hope you feel better soon.
Thank you for the info and yes, I'm very sure I received a full 3rd dose. Fatigue is better today. I tend to be a professional worrier!! 😉
Yes, also no symptoms to first shot except sore arm. 2nd shot had body aches, little nauseous and after 3 days Covid Arm. Arm was red and itching and hot for 3-5 days. 3rd shot same symptoms, little fever, aching. I took Tylenol PM which has Benedryl and the arm did not get all red. Just a small patch that was red but not itching. I think the allergy RX in Benedryl helped with the arm symptoms. Now 4 days past shot and feeling fine. I had the Pfizer shots.
Almost 80. CLL diagnosed 16 years ago. About a week after my third Pfizer shot on Aug.. 27th, I started feeling very tired and unmotivated (always a struggle). I suddenly become overwhelmingly sleepy and have been taking 3-4 naps a day. I also have been more short of breath than usual, and yesterday I had a mild sore throat. Feeling pressure in heart area. On a couple of days, I got hot flashes, but gone now. GERD worse than usual. Hopefully I’ll start feeling better soon.
I am in W&W. I don’t remember much reaction after first two shots, except sore arm and body aches maybe worse than usual. Before third shot, antibody test was positive, 14.26 U/mL. In experiment and will be tested again on Sept. 21.
Pfizer Vaccine 
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COVID vaccine
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