CLL Society is publishing this story to share and learn from another patient’s experience. It is unique to the author and is not meant as an endorsement of any particular approach to disease management and is not intended as medical advice.
I was diagnosed with chronic lymphocytic leukemia (CLL) in July 2015 and started a clinical trial of acalabrutinib (Calquence) in July 2016 at the National Institutes of Health (NIH). Despite complex karyotype (no 17p or TP53), unmutated IGHV, Notch, Zap70, biclonal, etc., I achieved an outcome of 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 and continue participating in the trial, with visits every three months. I remain MRD-undetectable, determined by flow cytometry.
I have had three full doses of the Moderna vaccine (not a booster of Moderna). I took part in the LLS vaccine antibody study and my immune response 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. It was offered to me and I was injected with Evusheld.
I have been extremely careful about masking, no indoor dining, no indoor venues, etc. for over 2 years. 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 an uncrowded restaurant. The next morning, we got a call that one of our friends was symptomatic and tested positive for COVID-19 (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 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 3rd, I woke up with a 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 taking 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 did not get chest congestion (probably due to Evusheld), nor did I have to be hospitalized. By day five, I was starting to feel better and on day six, I tested negative. On day ten, I woke up with a scratchy throat and cold symptoms – tested positive again. REBOUND! I finally tested negative again on day eight of the rebound. All in all I isolated for 20 days.
I am fortunate to not be extremely sick, but all the vaccines, antibodies, Evusheld, Paxlovid did not prevent me from getting infected with COVID-19. I know of many people who have rebounded on Paxlovid, so please talk to your doctor. More studies in vaccinated people need to be conducted.
COVID-19 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 a positive test; those exposed are likely to be infected. From our group, seven out of the eight of us who were exposed to the infected person, plus their 9-month-old twins, contracted COVID-19. All, except the babies, were vaccinated and boosted. Four of us took Paxlovid. I and one other of the Paxlovid group rebounded (two out of four, or half of us).
Fortunately, we have all experienced only mild to moderate symptoms. My husband did not get infected, as he wasn’t near me the day before I tested positive. He came home that evening and we quarantined for 20 days.
Sandi Croan lives in Northern Virginia and was diagnosed with CLL in 2015. In her career, she has worked as a Physical Therapist, HR administrator, owned an administrative staffing company and retired in 2000. Sandi has focused on landscape and travel photography since 2003. She was diagnosed with stage 1 breast cancer in 2010 and with a lumpectomy and radiation she has not had any recurrences. She has been married for 50 years.
