Duvilisib was great...until it wasn't
I took the Duvilisib for several weeks and was so excited that I didn't seem to have any bad side effects. I didn't go back to read what I wrote in the last blog, before starting it, but I had become aware that the FDA actually removed it from the list of approved meds for T-Cell Lymphomas because it has a very high rate of serious, often fatal, side effects. I felt it was my only known next step, though, so I decided to try it. Unfortunately I broke out in a very concerning rash. Itchy, blotchy, sometimes oozing rash. I got in to see my oncologist and she confirmed that I needed to stop it right away, go back on the higher dose of Prednisone, and hope the rash subsided. It didn't go fully away - especially areas that get sun like the top of my foot. Those areas are dark, patchy spots that don't seem to heal. Interestingly, the oncologist (Dr. Mellott) said she thought I could go back on the Duvilisib, once the rash subsided. My reading doesn't agree with that. As ...