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Greetings to all,

I have recently started Enhertu. I've searched about this drug's side effects but I wasn't satisfied with the information given. I wanted to share with you my experience. I was on Kadcyla, Tukaysa, and capecitabine combination since July 2021 and I was doing ok besides mild hand and foot syndrome and stomach upset. My brain MRI results in December 2021 came back with multiple small leptomeningeal growths. My oncologist wanted me to talk to a radiation oncologist as well as a neurologist. Both doctors said whole-brain radiation wouldn't work. Because even if the whole brain is treated, there still would be cancer cells swimming in my cerebrospinal fluid so what is the use?' I was so happy that finally, both doctors would accept that whole-brain radiation is worthless. I wasn't going to go through a whole-brain radiation nightmare again anyways. I have stopped the WBR after the second treatment. My life turned upside down After WBR. But my MO wanted me to talk to a neurologist and a radiologist before she could give me Enhertu. Although she knew I will never have my brain radiated, she forced me to talk to those two doctors. And thankfully, both doctors agree that it would be a waste and cancer will jump back into my brain again since they are swimming in my spinal fluid. The neurology doctor actually said to me "you did well by stopping the whole brain radiation because it wasn't going to help you.' Thank God some doctors really study this horrible disease and agree with the patient. My MO has set up a date for Enhertu. I did some reading about this drug and I didn't have confidence. The research shows promising results, but the side effect is unbearable.

On treatment day for Enhertu, I was given a scopolamine patch, Zofran through IV, and some milky anti-nausea medication to prevent nausea. The first day was okay. The next day, Although I still was using a scopolamine patch to prevent nausea, the feeling of dizziness, nausea were horrendous. I threw up 6 times, couldn't eat or drink anything, Had no appetite for nothing, My MO said the first dose was going to be a maximum one, and then following the doze will be reduced. I have been sleeping pretty much all day. Can not form words right, I have blurry vision, metallic taste in my mouth, weird ringing in the ears, hard time walking without holding on to something. Just throwing up a lot and have no appetite. Even water tasted like drinking a metal. I drink spring water, but this time my delicious water made me throw up. I am going to tell her that I am done with all the treatments. I want to have a quality of life. If I can't have that, I don't want to live. I told my husband and my daughter that I am done and they both want me to see if there is any other options or if lowering the dose would help. NO! This is my body, my suffering, my decision. I am done with cancer. I will go to Switzerland for assisted suicide. I don't want any more pain and suffering. My husband was sitting quietly while I was sleeping. Just as he did when I had WBR. I have no right to hurt no one. My husband needs to move on and be happy. I don't want my husband and my daughter to suffer because of my suffering. Maybe, other people would have a better outcome than me. Maybe they could deal with side effects better than me. I am done with cancer and I wish everyone a better experience than me. I wanted to share my thoughts. I love my husband and my daughter and my little fur ball cat. But it is time for me to end this tragic comedy. I don't want to be Debby downer but this is the reality for me. Thaank you for reading and may God Bless each and every one of you with beautiful life with out sufferring.


  • illimae
    illimae Member Posts: 5,574
    edited February 2022

    Starlove, damn, hard post to read, especially as someone with brain mets looking at Enhertu next but I get it, simply existing isn’t enough, we need to enjoy it too. I wish you well.

  • hoisholt
    hoisholt Member Posts: 9
    edited February 2022

    I am so sorry you had such a nasty reaction to Enhertu. It’s all such a game sometimes. Do well my dear