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Anyone starting brand drug, Enhertu?

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  • weninwi
    weninwi Member Posts: 754
    edited May 9
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    First, rischaller, so encouraging to hear your PET scan results!

    My update: I had 4th Enhertu infusion a week ago. I started at 80%; did well so increased to 100% for infusion #2 and #3. I had first CT scans a bit early after infusion #3. Results were "stable" - no shrinkage, but nothing grew and nothing new and no evidence of ILD interstitial lung disease. My labs were mostly stable - just a slight bump up for ALT & AST. After infusion #3 my foot neuropathy started to get worse, with some pain which was new for me, and since I'm a daily walker I decided to drop back to 80% for infusion #4. The NP I saw for infusion #4 said either decision was reasonable - i.e. stay at 100% and watch for worsening of neuropathy symptoms or drop to 80%. I stopped the Zofran as a premed due to constipation. Still getting Decadron as premed and at home on days 2, 3, 4. I have never had outright nausea so far and only slight queasiness which has responded to ginger. The fatigue however is noticeable. My worst days seem to be Days 5-7, by day 9 I'm being to feel better. I'm hoping infusion # 5 (May 21) goes as well as possible since I've planned a two day trip on days 6 & 7. I have my first post-infusion cardiac echo soon to check for any decrease in left ventricular function. Hopefully echo is stable. All in all the Enhertu seems to be working and I seem to be tolerating it pretty well. I'm so thankful.

  • more_cowbell
    more_cowbell Member Posts: 6
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    Hello all! Popping in over here since this thread was one of the main reasons I wound up actually joining BCO after a long time of just reading the threads.

    I'm currently still on my first-line of treatment for Her2+, ER+ breast cancer, which is currently Phesgo, Ibrance, and Anastrazole. But, I know Enhertu will be my next stop.

    My docs tried to get me enrolled in two different DESTINY studies for Enhertu, looking at the drug as a first-line vs chemo. My IHC was too low, but my FSH was too high to qualify for either the Her2+ trial OR the Her2Low trial of this particular test arm.

    It had just hit big when I was rediagnosed as Stage IV, so I have loved reading everyone's experiences with Enhertu, good, bad, and otherwise, over the past 3 years. Thanks for being so willing to share. It has meant a lot to read first-hand stories from real people.

  • rlschaller
    rlschaller Member Posts: 28
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    ..and for me too, love reading everyone’s stories, the good, bad, and otherwise. Grateful for the sharing.

  • illimae
    illimae Member Posts: 5,607
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    Welcome to the thread.

    This month makes it 2 years for me on Enhertu with the last 15 months at the 80% dose and I’m happy to report that it’s going well. Even now, Enhertu is still inconsistent at times but it’s working great, so I’m not complaining… much.

  • weninwi
    weninwi Member Posts: 754
    edited May 16
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    I've been getting 10mg Decadron as a premed and then 4mg at home day 2, 3, 4.

    Anyone else getting this or something similar? Anyone not getting any corticosteroid as a premed?

    I want to tapper off ASAP. I don't think I need it as I have not had outright nausea…some queasiness, but no nausea.

    Just read about the bone fracture risk associated with a daily corticosteroid dose of 2.5m or greater. Can happen fairly quickly i.e w/i weeks.

    I've also been on Zometa (bisphosphate) infusions for nearly 4 years. Long term use (some say greater than 5 years) is associated with spontaneous femoral and trochanter fractures. If taken along with corticosteroids the risk is greater.

  • margarita12
    margarita12 Member Posts: 15
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    Winiwi,

    Very interesting information about corticosteroids and the increased risk of fractures. My mother has been on verzenio/faslodex and also takes 2,5 ml hydrocortisone due to increased achte. Can you provide me the source of your information? Maybe I should ask her mo and unless she necessarily needs the daily dose of hydrocortisone maybe she had better stop it. She also has osteonecrossis of the jaw but this is may be not relaxant with the hydrocortisone. Thank you a lot.

  • weninwi
    weninwi Member Posts: 754
    edited May 16
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    margarita12,

    I just Googled corticosteroids and bone fractures and found several statements.

    The specific information about bone fracture risk due to Zometa plus corticosteroids was from the Zometa package insert:

    Here's the first sentence of the paragraph.

    https://www.accessdata.fda.gov/drugsatfda_docs/label/2014/021223s028lbl.pdf

    5.6 Atypical Subtrochanteric and Diaphyseal Femoral Fractures Atypical subtrochanteric and diaphyseal femoral fractures have been reported in patients receiving bisphosphonate therapy, including Zometa.

    I also found this from New England Journal of Medicine about a study done on this topic:

    https://www.nejm.org/doi/full/10.1056/NEJMoa1916525

    If your mom isn't also on Zometa, then her risk situation would be different, but reading the package insert for the specific corticosteroid she takes might be the best place to look for fracture risk info. Hope this is helpful.

  • illimae
    illimae Member Posts: 5,607
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    weninwi, I only get the steroid premed, never anything to take at home. Also, I was on Xgeva (similar to zometa) for two years but I had planned dental work and need to stop for that. We discussed it and my MO determined that I was not a fracture risk and would not need to resume. Perhaps this is a good time for a review considering your concerns.