Researcher, advocate, and caregiver to my son, age 24
July 2016, Diagnosed with Systemic ALCL ALK-neg, DUSP-neg, stage IV, IPI 2, PIT 1, normal LDH, normal B2 microglobulin
Sept 2016, Third round of E-CHOP complete;; PET scan NED
Nov 2016, Sixth and final round of E-CHOP completed
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!
Dec 2016, PET scan NED
March 2017, Experiencing symptoms: cough and stomach issues. Found two small lumps in neck
March 2017, CT scan shows relapse. Confirmed by PET
April 2017, CD-30 confirmed with biopsy; Begin Brentuximab for at least three cycles
May 2017, Biopsy came back with new diagnosis: Classical Hodgkin's! Likely misdiagnosed initially (by three different pathologists).
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