If we with CLL/SLL are waiting for 100% security against COVID-19, our wait may never end.
Indeed, staying at home and not venturing out or inviting anyone over will protect us, but at what cost? What family milestones or everyday joys will we miss? What adventures and new and old friends won’t be enjoyed?
When will it ever be safe to get back into the water?
Each of us must draw our own line and decide what risks we are willing to take and what we are not?
A walk in the park lives in an entirely different place on the personal danger dial compared to an indoor crowded maskless rock concert or a 90-minute meal in a busy and poorly ventilated diner.
We each must weigh the factors and decide our personal comfort and what level of risk.
What are the factors in our calculations?
Are you up-to-date with three doses of an mRNA vaccine? Boosted with a fourth? We know it’s not 100% protection for sure, not even close, but it does provide significant protection for many CLL patients, especially against severe disease. Most vaccinated CLL patients who get COVID-19, especially Omicron, and many have and more will, anecdotally seem to be doing well, even without access to Covid monoclonal antibodies (CmAbs) or antivirals. We are now learning that vaccination may work better than we initially thought, at least for some, and provide T cell and other protections beyond a simple rise in our anti-spike antibody levels.
Can you access the CmAb, sotrovimab, or the antivirals, especially Paxlovid or remdesivir) using the PINETREE protocol)? None of these interventions is 100%, but they work for about nine out of ten. Most folks feel better real fast. Supplies are scarce now, but that will improve.
Have you had EVUSHELD? Again not 100%, and its protection may be less robust against Omicron, but it kept all those in the pre-Omicron trial out of the hospital and, even more importantly, out of the morgue. There will be breakthrough infections, but we anticipate they mostly will be mild disease as it retains its ability to neutralize Omicron, albeit needing higher levels, but still safely below the levels routinely obtained with the injections.
Cloth and surgical masks turned out not to be the best PPE, but readily available N95 masks, if well fitted, are a formidable if a not impermeable barrier to infection. Nothing is perfect, but they are a big part of the reason healthcare professionals are doing so much better these days and should be part of the attire of every well-dressed gentleman or lady with chronic lymphocytic leukemia/small lymphocytic lymphoma who plans to venture out where they may be in the company of strangers, especially indoors.
Is COVID-19 surging in the community? As I write this, the very contagious Omicron seems to be everywhere, so maybe now is not the best time to start taking risks, but like all past surges, it will peak and then fall.
Is a new variant of concern coming? Almost certainly, but who knows when and whether it will be milder or more severe than Omicron, and it will also rise and fall. Will the current vaccines and antibodies, and antivirals still work? No-one knows. Are new therapies coming? For sure!
Here’s my approach.
I am waiting for the current Omicron surge to die down. Then I’ll put my finger to the wind and decide. Suppose there is no new nasty variant of concern (VOC) lurking. In that case, I figure with a deep remission and Evusheld aboard and three doses of the Pfizer vaccine resulting in a pretty good spike protein response, and with not certain but a reasonable likelihood of being able to access antivirals if needed, my odds of getting COVID are pretty low and of a bad outcome, very low. Not 100% protected, but I am not getting any younger, and my granddaughters are getting older.
As I have said, if you want to look stupid, try to predict what COVID-19 will do next. I also have often said: Expect the unexpected. Sadly, I was right on both accounts.
If no new VOC or medical complication rains on my parade, I plan to jump on a plane or map out a long car trip to see my beautiful granddaughters in the late spring or summer.
We all draw our lines around us as to what feels safe. Or safe enough. Where are you drawing yours? Let us know. Write us via support@CLLSociety.org, and with your permission, we will share your thoughts and calculations.
Stay strong. We are all in this together.
Brian Koffman MDCM (retired) MS Ed (he, him, his)
Co-Founder, Executive VP, and Chief Medical Officer
CLL Society, Inc.