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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How are you doing?? I was thinking of you cause I think we have our infusions around the same days. I had mine last week, went through the usual roadkill phase, but no constipation this time so yay I guess! On the downside I lost most of my hair ☹️ had to order a wig.
Let me know how you feel these days!0 -
@elena_p It's nice to hear from you. Had my 3rd infusion on March 11th and although I seemed to have a decrease in the side effects from the pre-meds, I had an extended roadkill phase from the Enhertu itself. Took me until Thu/Fri last week to start to feel my regular self. Still dealt with slowed GI tract and had really low appetite. I've decided I'm going to take doculax starting the day after my infusion, along with gabapentin 100mg to help with appetite and general body aches and pains. [I was taking gabapentin for hot flashes from fulvestrant but weaned off when the fulvestrant was stopped] Next infusion is next Wednesday. Just taking things one day at a time and trying to enjoy the good days and allow myself to rest and cocoon on the not-so-good days.
That's a bummer about your hair loss 😔I know that's a tough emotional, psychological challenge. I was preparing myself for that as well…grateful to report no hair loss. Noticed slight thinning on top and my hair is starting to go back to it's original straight form especially in the front and top. [It went curly when I started fulvestrant…not sure that's the cause, but that's when it happened] I got a hair cut a few days ago and the back and sides still have curl but my bangs have lost most of the curl.
A couple of the ladies in my Wednesday support group lost their hair in the beginning but had it grow back after some time. I will hope for the same for you.
Thank you again for keeping in touch. Sending you lots of shared healing energy and hoping for both of us to better manage the treatments as we go along. Take good care. ❤️
spring lilac 💜
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@jenene63 , what wonderful flowers! I absolutely adore their scent 💜
I also had my second infusion a week ago and it hasn’t been as smooth as I hoped. So much fatigue! And nausea this time, instead of constipation. But thankfully I’ve been able to keep myself hydrated and fed this time, thanks to my husband’s round the clock routine. I had some complications before getting the infusion, a suspected infection and spent a few days in the hospital trying to figure out how what it was, it seemed like false alarm but my blood values are still indicating that there’s something going on. I’ll go to the hospital tomorrow to see if we can run the tests again and get some IV antibiotics. On one hand I’m concerned, on the other hand just bring it on and I’ll beat it 🥊
Hope you’re doing great now and are enjoying the spring days!
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@elena_p Oh no I'm sorry to hear you're having trouble…hope they find out what's going on and you feel/get better soon. And that you have a loving, suppportive hubby. Sending lots of healing energy across the miles to you. Take good care Elena. 💗 Here's a photo of white liliac which were right nex to the purple ones. They are my favorite flower scent too!
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