I am sorry this is so long. I really wanted to document and share my journey and remind everyone to be very careful, thoughtful and educated. COVID is no joke!
I was diagnosed with Chronic Lymphocytic Leukemia (CLL) in July, 2015. Started a clinical trial of Acalabrutinib (Calquence) in July, 2016 at NIH. Despite complex karyotype (no 17P or TP53), unmutated, Notch, Zap70, biclonal, etc., I achieved MRD Undetectable in both bone marrow and peripheral blood in July 2017. I am a lucky and rare bird! NIH agreed to let me halt Acalabrutinib in January, 2019, keep me in the trial and has been seeing me every 3 months. I remain MRD Undetectable on Flow.
I have had 3 full doses of Moderna (not a booster of Moderna). I took part in the LLS vaccine antibody tests and was off the charts with antibodies.
At my NIH clinic appointment in April, 2022, my bloodwork antibody levels were excellent. They were offering Evusheld to all their CLL patients. I was offered and was injected with Evusheld.
I have been extremely careful for over 2 years. Masking, no indoor dining, indoor venues, etc. On Saturday, April 30th my husband and I traveled by plane to visit friends in Detroit (wearing KN95 masks all the time). We went out to dinner with our friends and were supposed to eat outdoors but it was too cold so for the first time, we ate indoors at a not very crowded restaurant. The next morning, we got a call that one of our friends was symptomatic and tested positive (I was sitting next to him). He had no symptoms the night before. We dropped my husband off in Ann Arbor for a board meeting on Sunday and we were supposed to meet at the airport on Tuesday to fly home together. I decided to fly home on Monday as I didn’t want to get stuck in Detroit with COVID. I totally masked, upgraded to 1st class and sat on the side of the plane where I didn’t have anyone next to me. Once home on Monday night, I tested negative.
Tuesday morning May 3, I woke up feeling sore throat and upper respiratory congestion. I tested positive within a minute on a rapid antigen test and called NIH. They recommended I take Paxlovid. My PCP ordered it and I started it Tuesday evening. I felt pretty lousy the first few days with the worst sore throat (hard to swallow and talk), low grade fever, and upper respiratory congestion. The Paxlovid gave me diarrhea and the most godawful taste in my mouth the whole time I was taking it. I didn’t ever get chest congestion (probably due to Evusheld), nor did I have to be hospitalized. By day 5, I was starting to feel better and on day 6, I tested negative. On day 10, I woke up with a scratchy throat and cold symptoms – tested positive again. REBOUND! Today is day 7 from rebound and day 16 from initial COVID. Still positive, still isolating, still cold symptoms but feeling a bit better.
I am fortunate to not be very sick but all the vaccines, antibodies, Evusheld, Paxlovid did not prevent me from getting COVID. I know of many people who have rebounded on Paxlovid, so please talk to your doctor. More studies on vaccinated people need to be had.
Cases aren’t being measured correctly. They are only counting PCR tests and hospitalizations – not rapid antigen tests. Doctors are not reporting cases or rebounds.
This Omicron variant is HIGHLY contagious. My experience was that one is most contagious the day before you show symptoms and 2 days after host positive test, the exposed get it. 7/8 of us that were exposed to the host plus their 9 month old twins got COVID. All except the babies were vaccinated and boosted.
Fortunately, we have all been mild to moderate. My husband did not get it as he wasn’t near me the day before I tested positive. He came home that evening and we have been quarantining ever since.
I am curious to hear from others with a similar experience.
Sandi
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Thank you for alerting us to to how very contagious the omicron variants are through your personal experience. I note that disconcertingly, BA.2.12.1, BA.4, and BA.5 variants are now replacing BA.2, driving further waves in some countries.
To protect your privacy, I've edited out your surname, but left your post unlocked, so non-members with CLL can find your warning. This post explains the pros and cons of locked vs unlocked posts and how to change a post's setting:
Per this post, healthunlocked.com/cllsuppo... it may be that immune compromised folk may need longer period of Paxlovid treatment to prevent rebound. With more use of Paxlovid, hopefully this can be established.
Wishing you a quick recovery,
Neil
PS Don't worry about the length of your post. It's way under our suggested maximum word count of 2,500 words per our guidelines and it was very important to provide that very relevant background.
Hi Sandi. I have been strikt shielding like you for more than two years. Due to troublesome trombocytopenia I was advised to not vaccinate.April 8th I had the bad luck to hastily speak to my brother, 1 meter away for about 5 seconds. I heard on his voice he was having a cold and backed off. Later that day he tested positive. Woke up with same symptoms as you after five days. Tested positive. Next days I got Evushield and five days of Remdesivir. Fever for a few days but coughing, astma and severe worsening of my heart angina ever after.
Now more than five weeks, still testing positive, but special so called CT value on PCRtest shows I am getting close to be not contagiuos.
They say I can test positive for a while yet. New PCR today and new CT value.
Accordian -- did I read correctly? You got Evusheld after testing positive? That was a strict no no where I got my Evusheld and from what I have read, it is not given once you have COVID.
I've heard of a few cases where Evusheld has been administered to COVID-19 positive cases when the patient was not responding to earlier interventions. It may have saved a CLL patient's life in a local case.
WOW .. that would seem very important and not how Evusheld is being vetted/marketed at the site where many of us have received it in the San Francisco area. Is anyone escalating these anecdotal stories to the powers that be? AussieNeil, if you could send me more info I'll share it with my contacts at the NIH in the US. I'm in a study looking at COVID vax response in immune compromised people and have a nice long distance dialog with the researchers. You can PM me with any info or links to posts here.
Hi. I got Evusheld on day one testing positive. To me they said it could be fine if it was given very early, within a few days. Apparently there are difference in what they say. This is Sweden, at a university hospital. I have now a lot of antibodies thanks to Evusheld. But unfortunately I am still after 6 weeks still testing positive for covid and contagious according to the so called STvalue. It is a hard fight.Christina
I was told we could test positive up to 3 months later by our health officer and that the tests can detect dead cells also, so after the 10 initial days, it doesn't mean you are contagious?
Hi! In Sweden they measure the so called CT value from the pcr test, to see if covid pos immunocompromized persons with pos covid still are contagious. I passed this test a few weeks ago, classified as noncontagious, and since one week also tested negative since 13/4. Nice. Still coughing and now sadly I have had strange fever since 10 days, right now staying at heart intensive care. It is kind of too much!Christina
I had a similar experience like your husband. We were in Boston at Dana Farber, I’m still W&W but I tend to get respiratory infections often and had just recovered from a severe sinus infection (my worst ever). I am a Pfizer Vax times 4 with only a 20 for my semi-quantitative antibody result. I tested my self throughout my sinus infection.
My wife was with me and started to get a sore throat. She is a severe RA with mixed autoimmune issues, severe asthma and history of cardiomyopathy. She is on Treligy for her lungs and Xeljanz and weekly SQ methotrexate for her RA.
She tested negative, developed fever, upper airway congestion, sore throat worsened, achyness and fatigue with brain fog. We got back to Florida, she then tested positive. within a a few hours her lungs started to tighten, O2 desating with exertion so I took her to the ER. Between the ER doc and Pulmonologist, she got IV steroids, Z-pak and I went to pickup the Paxlovid at the pharmacy and administered it to her in the ER. By the time we got home that night the fever was gone and her breathing eased up. She then started a 5 day 4 mg twice a day decadron course along with her Z-pak and Paxlovid.
Over the course of the next 5 days her O2 sats improved little by little. As the sore throat eased she had a horrible metal taste from the Paxlovid. She continues to test positive 12 days later. From the initial onset of symptoms and until day 10 we were very careful wearing N95s and me in the guest room. She still is recovering but for the last 7 days we have been traveling in our small caravan on holiday. I continue to be ok and test negative.
Too me their are too many confounding variables to even list here about why I didn’t get it. She might have come in contact with a high emitter before leaving for Boston and her initial symptoms were immune-mediated prior to contagiousness. She might be a low emitter and maybe that and my forth vax was enough to protect me as we started to be very careful with N95s and other NPIs. My low antibody test may not be the issue. I may have better T cell functionality? Her continued positive antigen tests might be a normal response to a virus. We have never done anything like this with other viruses.
We were shocked that I didn’t get it. But I’m sure my time will come.
Example of contagious period differences for the vaccinated and unvaccinated.
Hi Sandi, I received Evusheld plus an IgG infusion, then contracted Covid 6 weeks later. My shielding habits are similar to yours, but I do not travel.I also had 3 Moderna shots, one within 6 months of getting Covid. My husband contracted Covid first, from a friend. I was positive 4 days later.
I was given Paxlovid, but had to drop it three days in due to frequent heart palpations and significant chest pressure, (which prompted my doctors to send me to the ER). No heart abnormalities found, but I was wiped from spending the entire day in a crowded waiting room, getting tests but never seeing an actual doctor.
I used a diffuser with essential oil of thyme, and oregano capsules, which seemed to elicit an immediate response. If I stopped these, the infection crept back in to my lungs & sinuses, leading me to believe it was having an effect.
I tested negative at 14 days, but felt pretty good at 10. BTW, the Paxlovid gave me immediate relief- lessening of covid symptoms, which re-emerged after I stopped the drug.
Paxlovid is 2 different antivirals in pill form used to treat mild to moderate Covid for people at high risk. Feel free to google. There is lots of info on it
Although your post was primarily about Covid, it gave me a little ray of sunshine on a 'dark day'. I am fascinated that they let you come off Acalabrutinib as I was told I would be on it for life or at least until it stopped working. I know you got to UMRD and that is rare. My thinking is that I'd like to have a rest from the drug before my body rejects it.
So, I have set myself a new target - to keep as fit and healthy as humanly possible in just the hope that what you reported I could achieve too.
The thought of living the rest of my life with virtually no immune system on this drug make me feel quite depressed at times, especially now that we have covid.
Kate, I was incredibly fortunate and grateful. With all the new treatments that are time limited, hopefully they will do more research on being able to come off the single agent btk inhibitors. Stay healthy and fingers crossed for you.Thanks for your reply
Kate, Acalabrutinib shouldn't cause you to have "virtually no immune system". In reducing your CLL tumour burden, it removes the immune system suppressing effect of your CLL. While acalabrutinib will also reduce your good B lymphocyte count and perhaps your neutrophil count, it can improve your T cell function.
Thanks Neil. I need someone like you with great knowledge to keep me on the straight and narrow. My CNS did say to me " we just don't know how effective your T cells are" so you can see my thinking - no B and poor T, so what do I have to save me if I get an infection? One thing about covid that we have learnt is our vulnerability, when you look at the data categories of individuals who are still dying from covid.
I take at least 5 days to heal from the slightest scratch so something isn't working very well. Maybe that is just normal and I have to live with it but its not a great future.
Thank you for sharing your story. It is discouraging to read about new variants, that vaccines may need to be tweaked three or four times a year, and that another wave is likely coming.
My grandson lives with us, along with his mom. We have one son also living with us who is immunocompromised along with me. My grandson’s elementary school has an outbreak of Covid do every child is being tested at home tomorrow morning. We decided the whole household would do the rapid test just to be sure.
I finally got around to ordering the eight additional tests being offered to households in the US.
Covid is still here and we need to continue to be careful.
I had Evusheld 1 mth ago and tested positive for Covid yesterday! I’m W&W fully vaccinated and boosted and had lots of antibodies. Go figure! My dr got me in immediately for the Bebtelovimab infusion yesterday and my symptoms are a runny nose and a bit foggy.
Thank you for telling your story. I came on this forum less than two weeks ago saying I experienced asymptomatic Covid quickly thanks to Evusheld given to me in March. HOWEVER, I rebounded with symptomatic Covid a week later and I’m currently sequestered again. This time I’m taking Paxlovid and it’s working (but yes, an awful bitter mouth taste!) and my test now registers a very faint positive. I wonder if this brush with Covid (x2) will provide any further immunity? I just finished the year long treatment of Venetoclax and Obinutuzumab and won’t start my journey to getting my immune system recharged until this Fall.
I wish you all well. This experience further strengthened my view it’s so important to do everything within my control to stay healthy via good food, sleep, exercise and masking. I feel unprotected despite all the vaccines and antibody intervention. I also feel sorry for all the oncologists who have been thrown into a position of Covid specialist and really can’t possibly know as we are all just figuring this out.
Thanks for sharing Sandi. I have been diagnosed with CLL since December 2013. I started one pill of Ibrutinib (Imbruveca, 140 mg) in April 2018 due to huge lymph nodes and rising white count. I had terrible joint swelling and pain with the 3 pills so was dropped to one and it works fine.
Like most of you, I have been terrified daily for the past 2+ years, been VERY careful, isolating, masking, sanitizing when nobody else was and traveling by car. I received 3 Moderna shots in January 2021, February 2021 and September 2021.
I received the full 600 mg Evulsheld in February 2022. No further vaccinations though due to my oncologist's research and conclusion they would likely interfere with the Evusheld. I have IVIg infusions every 3 months and last one was on 5/16/22.
I contracted Covid while traveling to another state by car recently and despite my very careful practices, with symptom onset on 6/3/22. I could not get back home fast enough to get Paxlovid but I did just fine anyway. I thought I had allergies. Quite a bit of tightness in my chest, coughing, cold symptoms and tiredness. Today is now 6/13/22 and I only have tiredness and slight coughing left.
I have questioned my oncologists decisions in the past and she always turns out right! I had worried about not getting the second booster. I had a fairly mild case and now know I can survive this. I just hope the variants continue to get milder. I will still not change my careful practices and I won't let my guard down. I am just grateful for what I perceive as a fairly mild-moderate case, with no hospitilization, and most of all still alive!
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