I remember as a wee lad first hearing the expression: “Sometimes you eat the bear and sometimes the bear eats you.” At the time, I was distracted by the bear eating part and missed the point of the saying. But as life handed me some wins and some losses - the whole thing began to sink in.
Now that the most worrisome immediate post-infusion days of my CAR-T process have passed (Day 20 / 8-3-25 was the last major adverse effects milestone), I can look back and evaluate how the experience went. Like any treatment (especially for cancer) there are potential targets of success (they are different for every patient and every therapy), and there is an equal variety of warnings and/or side effects that come with the benefits. In all cases, to gain Regulatory approval, the benefits have to outweigh the risks, and for me and my Carvykti, that was clearly the scenario.
My oncologist and team did their due diligence and prepared me intellectually by clearly outlining for me the variety of issues that could arise (all of which were manageable and temporary). They prepared me medically with a host of prophylactic medications intended to prevent these known bumps in the road (high fever, mental confusion, etc). And, they prepared me emotionally for the potential of measured success as a result of the procedure. The Carvykti ISI / PI (Important Safety Information / Product Insert - that huge piece of paper, folded down into the size of a matchbook with miles of tiny type, that comes with every prescription) laid it all out with numbers and percentages - that admittedly were a combination of overwhelming esoteric data and sobering potential problem prophecy.
In the end, I had none of the symptoms that I was cautioned about (I was relieved with the results and appreciative of the perspective / warning). As it turns out, nearly 50% of the patients who have received Carvykti so far have also had none of the symptoms. But, I can understand why my Onc made sure that my optimism was purposely guarded and my expectations were properly managed.
I won't take any credit that being part of the 50% with no symptoms had anything to do with me, Nat Rosen (though I think I’m pretty “clean” as a patient; no existing comorbidities or medical complications - other than this cancer thing). Maybe it is also just a little bit about the randomness of life and being prepared for all possible outcomes - positive or negative. In this case at least, bear tastes good !
