The day after my first CAR T cell infusion in 2013 I developed serious side effects—a fever and neurotoxicity—and had to go into the hospital. It was a mild to moderate cytokine storm. I was released after one night in the hospital, but had to go back the following day when I momentarily lost consciousness at home. After these two hospital confinements, I recovered quickly and was able to go home with no further treatment. I did have a near bone marrow failure in the months following the CAR T cell therapy, but that turned around slowly.
When the leukemia returned in 2019, the oncologist put me on an experimental trial with pembrolizumab (Keytruda®). At first, it seemed to work, but by the second infusion, the leukemia cells began to show on scans again, so the oncologist took me off the trial. About two weeks after the last Keytruda® infusion, I had an intense autoimmune reaction involving my skin and nerves. I was given a steroid, prednisone, which helped reduce the side effects. The steroids, however, delayed the start of my next immunotherapy: blinatumomab (Blinctyo®).
When the skin reaction cleared up, I went into the hospital to be hooked up for a Blincyto® infusion, 24 hours/day for five weeks. I went into the hospital three times for infusion hookups and had side effects each time, but they waned in power. The initial side effects were very similar to my reaction to the CAR T cell infusion. For the final two infusions, I managed to do a home infusion with Providence. I had very mild side effects during and after these final infusions. The plan going forward is to end the Blincyto® and hopefully stay in remission.