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
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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
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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??
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Hello,
I was diagnosed stage IV de novo in October, breast and mediastial lymph nodes (possibility of lung as well but nodules were too small to biopsy) ER 20%, PR 40% Her2 negative in breast but low positive in metastasis. Like @aaldupre, I have high Ki67 80-90%. Started targeted therapy in November with Kisqali and hormone suppressants but had to pause due to elevated liver enzymes. In the meantime progression was shown in my restaging ct scan so my onco team decided to switch me to iv Enhertu once every 3 weeks. If anyone can share their experience and advice it’d be greatly appreciated.
Wishing everyone a lot of strength and success in their journey!Elena
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Hello Enhertu Sisters, I’m post day 4 of 2nd round of treatment (started January 28, 2026) and feeling like roadkill again. I didn’t have as severe of the dex let down side effects (headache) this time, only one day instead of two. Had the sadness and emotional blues earlier, yesterday was fragile city. Today just fatigue and achy and queasy, although not bad enough I need to take zofran. My oncologist NP said she thinks I’ll tolerate it better as I go along. I’m trying to absorb her optimism. I’m grieving the loss of quality of life for the 5-6 days post infusion and hoping with all my being that it’s killing the cancer! I still high have quality of life overall and I’m doing my best to sit in gratitude and accept what is and live in the now. Sunny days after an amazing winter storm brought rain and snow to California helps with spirit. Hoping to join our Wednesday group this week. I have an appointment at 1100 so might join a little late. Love and light to all. Jenene
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Hi @jenene63 !
Looks like I wasn't the only one feeling like roadkill these days :) I'm post 1 week of first cycle and I only started to feel like myself again. Ok, days 1-3 were fine but mostly because of all those extra infusions we get during treatment but the next days were an absolute blur. At some point I contemplated if this is the quality of life I want to have but I had to slap myself back to reason. I have an 8yo and giving up is not an option. My oncologist also claims it gets better after 2-3 infusions and I really hope she's right! Hope all are doing well!
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Hi @elena_p …thank you for the commiserating and understanding. 🤗 I'm happy to hear you're starting to feel like yourself again 😍I had a better day yesterday, post day 5. Slept well and didn't wake up with the generalized fatigue and backache or mild queasiness [luckily I haven't had nausea per se, just the mild queasiness and no appetite.] Went for a gentle walk and enjoyed the fresh air and sunshine. Holding on to hope for both of us that our bodies adjust and tolerate the infusions better each time. Cancer can take a big flying you know what! 😎 Sending you love and courage and support. Take care and keep in touch. 💗
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