Enhertu questions and experiences

Hello,

My original diagnosis in June 2022 was Stage IB (T2N1mi)

ER-93%
PR-70%
HER2 - (2+ by IHC 1.0 by FISH )
Ki-67-80%
I did lumpectomy and breast reduction, 4 rounds of TC, and anastrozole switched to fulvestrant due to side effects.

In April of 2025, my CA27-29 spiked and imaging was ordered. Signaterra negative for ctDNA (thought I was in the clear). Recurrence in lung was confirmed metastatic late May. ER- 55%, PR-3%, HER2- (1+ by IHC, 1.2 by FISH). Ki-67 not done. Not enough tumor for NGS. Started ribociclib June 19 (almost 60 days post tumor marker spike). Additional blood biopsy at MDA still negative for ctDNA. Completely asymptomatic. Tumor markers kept rising. Thoracoscopy 8/20 confirmed lung and pleura progression. ER-60%, PR negative, HER2 ? (2+ by IHC, FISH pending) Ki-67-90%

Headed for chemo to stop things growing. Was going to go nuclear option and do AC-T to wipe things out and then do fulvestrant and Verzenio to keep things at bay. After meeting with 2 med oncs and talking to a cancer biologist, I think I’m headed for Enhertu instead as it seems to have higher efficacy. My question is how many rounds or do you just take it indefinitely until progression? Has anyone on here had a complete pathological response with Enhertu? What are side effects like? Has anyone here been on Enhertu for > 12 months? I am interested in any/everyone’s experience…

Comments

  • moderators
    moderators Posts: 9,805

    Hi @aaldupre! How are you doing? We are so sorry your post went unanswered. Sometimes messages get missed in the forums, and we never want anyone to feel overlooked. We hope you’ll see this update, and hope other members will see your refreshed post and share their insights.

    In the meantime, we just wanted to check in and ask how you’re doing now. Were you able to move forward with Enhertu, and how have things been since your last update in September? We’re here for you and ready to help however we can.

    Sincerely,

    The Mods

  • rink23
    rink23 Posts: 5

    Hi aaldupre , I am starting Enhertu tomorrow for extensive liver ,lung and bone mets. How are you doing? looking fwd to seeing positive outcomes with the cancer.

    Anybody else on Enhertu??