Researcher, advocate, and caregiver to my son, age 24
Diagnosed with Systemic ALCL ALK-neg, DUSP-neg, stage IV, IPI 2, PIT 1, normal LDH, normal B2 microglobulin, July, 2016
Studies show young age (<40) is the great equalizer between ALK-negative and ALK-positive, with ALK neg at similar outcomes as positive when adjusting for age
Third round of E-CHOP completed Sept 2016; PET scan NED Sept 2016!
Sixth and final round of E-CHOP completed Nov 2016
Primary side effects: Some mucositis and constipation, but this resolved early on. Fatigue. Thrush after chemo resolved with Nystatin. Depression (also an issue before cancer diagnosis).
Continued to live alone and work two jobs through chemo!
PET scan NED, Dec 2016!
Second opinion at Seattle Cancer Care Alliance and Dr. Shustov: Active Observation, no auto stem cell at this time
Expriencing symptoms, CT scan shows relapse, March 2017