Heather’s Story

Diagnosed Aug 2018 as a 54-year-old female, with SLL via node biopsy. CT showed extensive lymphadenopathy, very bulky disease, particularly in mesentery. Bloodwork all in normal range. Had BMB in spring 2019 for purposes of FISH. Had been experiencing increasing fatigue and discomfort in gut. Pathologist decided not to do FISH and simply confirmed SLL and flow cytometry results. Pathologist and hem/onc determined that possibly sufficient lymphocytes could be gathered from peripheral blood despite continued normal bloodwork. FISH completed. Trisomy 12. Hem/onc unaware of ability to do IGHV testing in Canada without having to pay. I requested consult with CLL specialist who had just found out that the BC Cancer Agency was just starting to do IGHV testing in Vancouver, Canada. Following a one week wait to determine process, CLL specialist determined that because my bloodwork continued to be normal that another BMB was needed so “let’s assume you’re unmutated.” As ibrutinib was not an option in BC for my typing, my choices were FCR or BR. Without knowing my IGHV status my preference was for BR. CLL specialist agreed.

Heather

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