Enhertu

Kathrn87
Kathrn87 Member Posts: 5 Member
edited November 2023 in Breast Cancer #1

Hi! I am, thus far, a 20 year Stage IV Breast cancer survivor with mets to bones and now liver. After my Xeloda is failing, I am to start IV Enhertu this week. Looking for anyone who has tried this medication. I am worried about the side effects, but the has such promising reviews. Thank you, Kathie

Comments

  • PaulBruce
    PaulBruce Member Posts: 1 Member
    #2

    Hi Kathie:

    I have had lung cancer since 2019 with a lobectomy to remove the original tumor in December 2019. The cancer returned in 2021 and is now in both lungs (Stage 4). I have refused all prior chemotherapy suggestions but when Enhertu was approved for Lung cancer in September, 2022, I was among the first to try it. To date (April, 2023), I have been pleasantly surprised by both its effectiveness and minimal side effects. Since starting Enhertu in October, 2022, the cancerous masses in my lungs have been shrinking and, to date, have been reduced by about 40%. I receive an infusion at Sloan Kettering Cancer Center every 3 weeks. The only side effects I am aware of are Insomnia and constipation the first two days after infusion; tiredness for about a week; Hiccups on days 2 & 3; minor leg cramps during second week, some itching of my skin during weeks 2 & 3; and a significant decline in my white blood count and Neutrophil count which recover before the next infusion. Hope this is helpful and good luck with your treatments.

    Paul

  • Widdershins3
    Widdershins3 Member Posts: 8 Member
    #3

    I was seeing my cancer numbers soar with all the drugs they tried on me a year ago. Then when Piqray failed really spectacularly, after making me terribly sick (blood sugar went to almost 700--!) and I suddenly dropped 30lbs, Enhertu was approved for my low-negative HER type of cancer. In 2 weeks I was on it and the change was stunning--my CA 15-3 went from 661 to 111 in 8-9 months.

    No noticeable side-effects, either. I was able to do a lot of walking and my weight recovered in a healthy way. My food problems with Piqray were gone and I could go back to a normal, healthy diet, too.

    I hope so much that it works that way for you and for a long, long time. Unfortunately, I developed the worst side-effect--ground glass opacities in both lungs--and just had to be taken off my miracle drug. Still adjusting...

  • suz_boston
    suz_boston Member Posts: 5 Member
    #4
    https://csn.cancer.org/discussion/326248/enhertu

    Hi Kathryn, I’m wondering how you are doing on Enhertu. I am going on a clinical trial using it for ovarian cancer – I am stage IV with mets to lung and nothing, so far, has reduced the very large tumors in my abdomen.

    I’m concerned, as well, about side effects, but I am encouraged to hear the other folks on this thread.

    Wishing you well and hoping to hear back

    Suzanne

  • Kathrn87
    Kathrn87 Member Posts: 5 Member
    #5
    https://csn.cancer.org/discussion/comment/1705494#Comment_1705494

    Thank you Paul for responding to me. I am holding up pretty well with Enhurtu and my liver tumors have shrunk to 1/2 their size. The nodules in my mesentery have completely diminished. Surprisingly some areas of the mets in my bones have "lessened" in my skull and spine. Hurrah!!! Hope you continue to do well. Kathie

  • Kathrn87
    Kathrn87 Member Posts: 5 Member
    #6
    https://csn.cancer.org/discussion/comment/1709860#Comment_1709860

    Hi Suzanne!!! I am doing quite well on what I would call a miracle drug at this point. My liver tumors have shrunk to half their size. My bone mets have diminished in the skull and spine. All other areas are "stable" which is awesome! The mesenteric activity has "completely diminished". Side effects are so doable with very slight nausea/dizziness that resolves quickly with Compazine or good old fashion Dramamine (this may not even happen to you, I have suffered from motion sickness my entire life). First four days jittery from the IV Dexamethasone given with the Enhurtu treatment. Constipation for the first few days, then usually have to take preventative Lomotil (a couple of tabs daily). It does cause a decrease in appetite, so I have lost 35 pounds which is not a bad thing...lol! Occasionally will get abdominal pain which again is relieved by the Lomotil. My platelets have dropped so I have been waiting two weeks to start my treatment again, which will be at a lower dose. I cannot recommend this drug enough and I think drugs such as Enhurtu will be the wave of the future. I hope this helps you with your decision making. Keep in touch and let me know how you are doing. Kathie

  • Kathrn87
    Kathrn87 Member Posts: 5 Member
    #7
    https://csn.cancer.org/discussion/comment/1706027#Comment_1706027

    Hi Widdershins! Thank you for responding. I have had outstanding results with this drug. I am on a honeymoon for two weeks as my platelets dropped but hopefully this Friday will get back on it. My CA-15 went from 410 to 85 and my liver tumors have all shrunk to half their size. It is even affecting my bone mets! On my last bone scan, the mets in my skull and spine have "lessened". I hope you can return to this drug soon. Kathie

  • Tobey
    Tobey Member Posts: 5 Member
    #8

    I have 3negative breast cancer metastasized to my bones. First treatment was Taxol and now have switched to enhertu. I have had 2 infusions so far. I'm struggling with ongoing mild nausea. It's mild but definitely is having a negative impact: no appetite and just don't feel well. My doctor suggested taking Prilosec but after a week of taking it, I did not feel better and had really bad constipation. He also gave me a prescription for prochlorperazine but that seems like a much stronger med than I want to take. I'm hoping there is an otc nausea med that would work. Do you have suggestions?

  • suz_boston
    suz_boston Member Posts: 5 Member
    #9

    Hello everyone, thank you for your responses. Tobey and others, I’ve been dealing with pretty significant (for me) nausea. No vomiting but very uncomfortable. Reminder - I’m on a trial for ovarian cancer treatment. I really didn’t have much nausea with the initial treatments of Carboplatin/Taxol. I find when I can push myself to eat more food, I feel a little better. I’m 10 days in from the first infusion, they gave me anti nausea as part of the infusion so I was fine for 3 days post but then the nausea kicked in. I’ve tried Zofran (sporadic better luck with this) and Compazine (made me very tired so I’ve tried to avoid). I have had constipation - took Colace and it didn’t work, now trying MiraLAX. I’m hoping for some relief. Has anyone found the nausea symptoms get better as one gets “used to” Enhertu?

    I’m grateful for the contact with all of you 😊. Wishing you all comfort and healing, it’s quite a challenging road

    Suzanne

  • Tobey
    Tobey Member Posts: 5 Member
    #10
    https://csn.cancer.org/discussion/comment/1710403#Comment_1710403

    My doctor suggested milk of magnesia for chemo constipation. It does seem to work. I also am hoping that as I have more enhertu infusions, the nausea will be less!

Discussion Boards