I first had an inkling something was wrong more than a year and a half before diagnosis, when red and platelet counts were out of whack after a body surfing accident. My primary care physician had me retake the same test three times; the results never became normal, but they got closer, and she dropped further testing. A year later, I began to notice shortness of breath and fatigue, and when I went in for a physical, my blood counts had worsened. Two months of testing later, I found out I had B-cell acute lymphoblastic leukemia (B-ALL) and was told to report to the hospital to begin CVAD within 36 hours. This was December 2020.
CVAD was a miserable failure; my cancer spikes more than tripled, and I had awful side effects, but a monoclonal antibody, Blincyto®, saved the day, removing the cancer. Because I had been severely refractory, though, my oncologists concluded the only way to get a lasting recovery was by allogeneic stem cell transplant. I had only one relative who was a possible donor, my sister, and fortunately, she was a perfect match. I had my transplant at Stanford on April 21, and after about a month of side effects, I began a steady and strong recovery.
At the one-year mark, I was feeling really well, probably back to 90% of my pre-transplant health (if not back to the levels of my pre-leukemia health), and was optimistic about a total recovery. My wife and I planned a month in Europe to celebrate. Just before leaving, I started my revaccination process, but my system felt immediately off, and although I felt somewhat better by the time we left, I still wasn’t back to where I was beforehand. At some point, I caught a succession of viruses, eventually leading to a near-fatal case of pneumonia, which took almost a year to fully kick. At that point, my team tried revaccination again, and I immediately contracted a second case of pneumonia, which in turn took eight months to get out of my system.
In the year and a half since the end of the second case of pneumonia, I’ve continued to have ups and downs, particularly connected to my immune and pulmonary systems. Lingering health issues led me to retire sooner than I’d planned, but I’m generally able to lead an active life with meaningful relationships with family, friends, and the blood cancer community. I’m grateful to all of those and my medical team for all that they’ve given me over the last several years, and I hope I have many more years of quality life ahead and can be of help to others in the community.
Peter
B-cell acute lymphoblastic leukemia (B-ALL)
