Anyone starting brand drug, Enhertu?
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HER2 low and HER2- people don't respond as well to Enhertu as HER2+ grade 3 .
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I think extrapolate was actually meant as "elaborate."
I agree chocomousse about HER2 status. Enhertu seems extremely effective against those people who strongly express HER2. I'm just skeptical about the drug company's claims about HER2 low.
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So, after 11 infusions overall, 5 at the 4.4 mg reduced dose of Enhertu, my 4 cancer sites are gone, including the stubborn adrenal gland tumor. My CEA has stabilized at 2.2 and my CA27-29 dropped to 27.3. My team recommended a ctDNA test to see if I have any circulating tumor cells in my bloodstream. If the results are negative then we'll consider reducing the Enhertu to a maintenance dose of 3.2 mg.
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@chocomousse Nice news! I have had CtDNA tests for a while now. After my 15th infusion of Enhertu, the results are almost zero. They spiked big time when Truquap failed. These tests are still experimental and they can cost a ton unless your onc (like mine) can get them paid for by Signatera. I am not having issues on the full dose and I am no longer on any supporting meds except for the two hypos of anti-nauseals. I'm going to keep on this plan. New scans in a few weeks. I hope to be a good responder like you. I really don't mind going in for chemo every three weeks. As long as it works!
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That's really good news @onlywhenitrains!
Because of my last scan results, my Onc. thinks it'll be ok to space out the E/P to every 4 weeks. I'm still having stomach pain/nausea and showing signs of malnutrition.
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May have spoken too soon. My 2/2 lab work shows that my CEA went from 2.2 to 2.3 and my CA27-29 went from 27.3 to 30. Also, a 3.2 mg dose of Enhertu every 3 weeks is essentially the same as 4.4 mg dose of Enhertu every 4 weeks. Hoping that the tumor marker fluctuations are just noise or debris dumping given my scan results.
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@chocomousse Maybe your system will respond more favorably to a four-week schedule even if it's essentially the same dose. I don't get the marker tests that you do, but the fluctuations don't look bad to my untrained eye. What does your oncologist say?
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Hello,
I was diagnosed stage IV de novo in October, breast and mediastinal 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 (+1) in metastasis and high Ki67 80-90%. No gene mutations. At 42, with no family history and doing regular checks, this was the last thing on my mind. There have been a lot of tears but my wonderful husband and our 8yo son keep me going.
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. They also suggest stopping the hormone suppressants as they don’t really improve anything.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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@elena_p Welcome to this topic. Sorry to hear that your time on targeted therapy was short. I've been on Enhertu for almost a year with no complications and very few side effects. Aside from cataracts which were very likely caused by the steroids, My cataracts are fixed and I am off the steroids.
If you want to put your treatment history on your comments, you can go to Quick Links on the right side of your screen and click on "Signature Settings." It took me a while to figure this out.
Best wishes on your treatment! Have you started yet?
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Hey @onlywhenitrains !
Thanks for welcoming me and the signature tips 😉
Losing my first line of treatment that fast was a bummer, for sure, but we couldn’t risk permanent damage to my liver. Additionally, the ribociclib/hormone therapy wasn’t enough.. Definitely not the news I hoped for but I’ll do anything to stay ahead of this beast.
My first infusion is scheduled in 10 days, thankfully I already had a port inserted back in October when we still thought I was stage II. We just need to wait a bit cause I’m weaning off the steroids. I’ve never had any chemo so I don’t really know what to expect. Thank you for sharing your experience with me!
Elena1 -
mbilhae
Hello everyone. I have been on the generic brand of Enhertu (Fam-Trastuzumab deruxtecan) since 10/21/2025, state IV mets since 2022. I was wondering if anyone on this forum has had serious side effects or symptoms with the drug. I am having multiple issues. I am currently on half dose since December 2025, it was decided to reduce to see if the symptoms would clear up. I had treatment on 02/10/2026, the neuropathy in my fingertips, legs and feet has flared up again.
My scans in January were positive; I had a reduction of the tumor in my right anterior lung. I wonder if the half dose will work as well.
What is the typical length of treatments that everyone has?
Stay strong everyone!
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@mbilhae.148 I am going to get my 17th treatment on Thursday. I have not had serious side effects while on Enhertu aside from cataracts from the supporting steroids. Got my eyes fixed and my slightly sluggish digestive issues and bouts of fatigue are in the rearview mirror. But since I'm not HER +, perhaps my positive response won't be long-lasting? I'm definitely more nervous scan to scan than I was when I was on Ibrance, but from what I can tell, Enhertu is the next best thing for me. Not Ibrance 2.0, but as close as I can get. Not sure if I'm typical. All the best to you.
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Hey all,
just checking in after my first infusion. It started very smoothly and for the first 2-3 days I was feeling fine, I guess all the supporting drugs they infuse us with work wonders. The only problem was the big C despite the laxatives I was taking daily. Then days 4-6 were an absolute blur, to be honest. Extreme fatigue, complete loss of appetite and I was just trying to sleep it off. I don't remember ever sleeping so much and it was never enough. I definitely didn't hydrate properly or get enough nutrients. Yesterday was the first day I was able to shower while standing and walked to my GP's to get my blood work done. Today I'm pretty functional, started working again (home office) but am mindful of my limits and take small breaks and snacks.
I hope you're all having a good week so far!
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