As the world has seemingly moved on from COVID-19 and appears to be disinterested in hearing about anything related to rates of infection/community spread, hospitalizations, or how many succumb daily to COVID-19, we have noticed that the volume of media coverage and reliable up-to-date information is not making the daily headlines nearly as much as it used to.
However, we are still very much in a pandemic and those who are immunocompromised, including all of those with chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL) regardless of their treatment status, must remain diligent. Without up-to-date information, it is difficult to perform personalized COVID-19 risk assessments to determine what level of risk you are willing to accept for various social situations.
Therefore, CLL Society has decided to try something new throughout the upcoming winter months by providing a weekly updated COVID-19 Summary Report. The goal is to keep our community informed of the latest information available as we approach what Dr. Brian Koffman has referred to as a potential “winter of discontent” for those with CLL/SLL.
Here is our first weekly report (there is a lot of new information this week, so this particular update will be a bit lengthy).
As Dr. Koffman predicted, the coming months very well might be our community’s “winter of discontent,” due to the coronavirus doing its very best to continually outsmart us by mutating to the point that it evades previous natural immunity acquired by infection in previous months, evades protection provided by Evusheld, and has figured out how to make the only remaining monoclonal antibody treatment for COVID-19 infection (Bebtelovimab) ineffective.
While Evusheld was never meant to completely prevent COVID-19 infection, it has done an excellent job of preventing individuals from developing severe disease which can lead to hospitalization and death. Without that added layer of protection, CLL Society feels that it is time to prepare those in our community for what might come as a result. We want to stress that this is not a reason to panic or fear, but instead to pause and prepare for what might be coming in the next few weeks.
Please remember that at this time CLL Society still believes that receiving Evusheld and Bebtelovimab is worth obtaining for those who are eligible until the FDA and CDC determine that they are no longer effective!
It is also important to remember that even if Evusheld and Bebtelovimab are no longer tools in our COVID-19 arsenal, we are not being left with zero ways to protect ourselves against infection and severe disease. We still have the powerful oral antiviral Paxlovid and the outpatient option of receiving IV Remdesivir.
which is still free to the public at this time. However, uptake in the US has been very low with less than 20% of those eligible in the US having received it. If you have not yet obtained your bivalent booster, now is the time to talk with your healthcare provider to discuss receiving it. The bivalent booster may increase antibody levels and stimulate other important parts of the immune system including T cells that aren’t necessarily measurable with standard laboratory tests, even if you haven’t had a previously robust antibody response to other COVID-19 vaccine doses.
In the meantime, we encourage everyone to focus on reducing transmission once again until additional effective monoclonal antibody preventatives and treatments can be developed and authorized. Several are in the pipeline and being studied in clinical trials. CLL Society is communicating with several companies who are working hard to develop new options for us. Stay tuned for more news on this subject, hopefully coming in early 2023.
Thankfully, the virus cannot mutate around a well-fitted N95 mask, so please continue to mask up! Additionally, education and knowledge are both powerful tools, so please do your best to stay well-informed.
Also, make sure your COVID-19 Action Plan cllsociety.org/covid-19-hom... is kept up-to-date, have the suggested supplies listed within the plan on hand, practice good hand hygiene, have good ventilation whenever you are around others (especially those who are unmasked), wear an N95 or KN95 as much as possible when outside of your home, and practice social distancing as much as you possibly can.
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lankisterguy
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Thanks Len. All good advice for UK members, apart from the bit about continuing Evusheld and Bebtelovimab pro tem, neither being available to us.
Considering how rapidly the mutating virus has managed to clear the field of monoclonal antibody treatments, subvariant tracking data is not that good. In the UK the best regular insights I could find are at
I feel like I’m swimming upstream against everyone who has long gone back to normal lives. Even my family think I’m overdoing it with caution and I should be more “out in the world.” Argh!! Reading this is soooo validating and supportive, which I desperately needed.
I get the sense that very few people are being admitted due to COVID itself. Rather, they are admitted for something else, and test positive for SARS-CoV-2. I also get the sense that there is a lot more secondary infection with Omicron and later variants because they affect mostly the upper respiratory tract rather than lungs. Get a biopsy if your COVID goes longer than a week! Even so, the numbers are skewed because unlike everyone else, immune compromised people are still more cautious.
The weekly Covid update article is really informative and easy to digest. My summary takeaways (and 2-cent worth thoughts) from the article are…
(1) Expect this coming Jan 23 timeframe to be similar to Jan 20-21 & 22 timeframes, in short unfortunate “peaking” of Covid bad news… maybe a 3-5x increase in weekly death rate from Covid versus July low points per previous years? Hope not, but the past data predicts that unfortunate storyline.
(2) France’s early feedback on the new BQ variants, that are replacing BA.5, is promising …a downward trend of weekly death rates …now that’s good news! Maybe (1) prediction “Covid peaking” will be milder?
(3) Paxlovid has additional pluses noted in article to help thwart off Long Covid (25% reduction) and other bennies it provides. It’s still the go to “this is what you take ASAP if you get Covid” per my CLL n GP docs.
(4) The new Phizer booster for the lucky ones on this forum CAN significantly increase one’s spike antibodies. I’m in the LLS antibodies Study n that booster shot gave me at least 6,000 U/ml (or more) spike antibodies, throwing me back into the lucky >25.000 U/ml bucket. After seeing test results over the past 6 months April-Oct 2022, that I saw a about a 25% (or more) antibodies wane count between my post-Pfizer #5 shot (>25,000 antibodies) to right before the new Phizer booster #6 shot (19,000U/ml antibodies).
On the other hand, IDK if those massive spike antibodies is a good thing long term?…scary thought…. Guess I’m a test-baby on that subject, but so far no Covid. I think getting the vaccines, n whatever antibodies develop, does help fight Covid or at the very least reduce a serious case of (key).
I’ve been a lot more out n about this past year including weekly trips to our local hospital … a virus hotbed. So for the lucky ones, the Covid vaccines work very well (but it really sucks that it doesn’t work well for all) n agree with the article’s advice, get the new booster. Even if it only partly works … alittle is likely better than nothing n it just might be your … life saver.
(5) Reduce risks is always good advice. As to how much “reducing” is a very personal decision as is discussed a lot on this forum.
The US map of low-med-hi Covid cases is a helpful risk indicator, though knowing such graphs can change wildly (like the stock market) and suddenly go from lo to the alarm 🚨 hi color. My takeaway, per past case graphs data, is … don’t be fooled/lulled into complacency…. Which brings up my last takeaway (6)…
(6) Yes, the Pandemic is not over! … currently the low point 2,500 weekly death rate in US is still waaaay more than the flu rate. Don’t let others BS ya that “Covid is over”, it’s simply not true.
Facts beat fiction.
Thanks again Len for providing this weekly Covid update. Helpful info!
Wishing good luck ahead to everyone regarding this winter season of covid, flu and whatever else comes our way. Stay well!
I am still being cautious. Just like I watch others enjoy rum and eggnog and do my best to get vicarious enjoyment, I tend to arrange for others to go places and have fun while I watch on TV.
My family went to a balloon fiesta but I stayed home. We have tickets to see five college basketball games in person but I will watch on TV. I try to get as much happiness out of the activities I can safely do, such as hiking, cheering for the Arizona Wildcats and Maryland Terrapins basketball teams (even if a game starts at 9:30 pm), baking, crocheting, and maybe hopping back on a bike in a few weeks.
Today is my birthday! I am hopeful to see another year. I baked a sheet pumpkin pie as my birthday cake because my grandson was ready for pumpkin pies!
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Avoiding COVID-19 Infection when you have Chronic Lymphocytic Leukaemia or SLL, by Chaya Venkat of CLL Topics/Updates (speculative article)
UK Zoom meeting - COVID-19 and shielding update for UK CLL Patients
There is Hope! CLL,Ibrutinib and Covid-19. 
