I debated whether I should blog about this or not since I have mixed emotions. This situation seems more complex than just a sensationalistic headline.
Last week I woke up to a stream of messages about Juno, patient deaths, and the CAR-T trial being suspended. First off, thank you to my family and friends who even have this information on their radar.
That is terrible. It’s horrible news. I wonder how did that happen? I am shocked, I am sad. I sit here, alive today and cancer free because of this very same trial. There were patient deaths before I enrolled. There were patient deaths from cancer for people who were too sick to get into the trial as well. Dr. Turtle mentioned to me that I was between a rock and a hard place. I don’t know what options were available to these patients who lost their lives, but I do know getting into the trial is not a cake walk. Hindsight and uncertainty can fancy up many alternate endings. Losing my sister to cancer, the number of times I have retraced the time frame to the “what-ifs” that could have been different drives me out of my mind.
For the time being, my trial is going back to Cy for preconditioning. Not the flu-cy I had. That alone makes me sad because I am biased based on my results. Will lives be lost as a result of that? Who can know. I do know the doctors are doing their VERY best with the knowledge they have to save lives.
If I’m in a burning building and am pulled out but die from smoke inhalation, don’t shut down the fire department. I’m only speaking for myself. I’m going on record right here right now, that if something happens to me as a result of my participation in this trial, don’t shut it down. It’s impossible to know all the risks, but I knew death was a risk. With cancer it was kind of a certainty, barring a spontaneous remission. Everyone is doing the best they can with the current information they have.
As of what I read today, Kita Pharma is still doing their trial with flu-cy.