No treatment and no progression

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Anotherone
Anotherone Member Posts: 633
edited September 2022 in Stage IV/Metastatic Breast Cancer ONLY

wanted to let everybody know- I stopped conventional treatment( was on enhertu at the time) in February. Still had lymph nodes that were lighting up on PET , original lesions in lungs seemed to be inactive and fibrotic. Scan at the end of May shown no change. Obviously everybody's situation is different- mine was an example that stopping treatment is possible. I greatly appreciated quality of life over the last 4 months and felt normal. It was good to know cancer have not progressed. Shall report what happens in the future.

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  • candy-678
    candy-678 Member Posts: 3,950
    edited June 2022

    Wow, that is good to read about you. I hope you can continue off the meds and stay stable. I have wondered about what would happen if I stopped the meds. I think we all can think that from time to time. I have been on treatment for almost 5 years. And it would be nice to not have all the side effects. I wish I could be brave and stop the meds to feel good again, but I would worry that my liver mets would explode.

    Keep us informed.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2022

    Good news anotherone, thanks for checking in. Glad your doing okay and yes it must be great to be free of side effects

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  • Bonnie7
    Bonnie7 Member Posts: 57
    edited June 2022

    Fantastic so pleased for you! Go you! 👍

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2022

    I am wondering if you stopped Enhertu due to side effects, cardiac issues or ? I know the side effects of tdxd can be rough. Would be grateful if you feel like sharing this.

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  • Anotherone
    Anotherone Member Posts: 633
    edited July 2022

    no.cardiac toxicity for me - just not a good qol.

    Update - brain tumour. Dignosed as a result of 10 days of on and off headache and vomiting. All neck down seems.to be stable. Have a meeting with neurosurgeon on Monday.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2022

    sorry to hear it, anotherone, hope you and your medical team can get in front of it and get you back to stable with few side effects

    Will keep you in my thoughts xo

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  • gailmary
    gailmary Member Posts: 332
    edited July 2022

    another one, I'm sorry to read of your brain tumor. I hope you get it under control quickly.

    I had wanted to share what my Dr said of stopping meds if you have mbc.. Don't do it. It will come back eventually with an uncontrolkable vengeance. Best to deal with SE.

    I have to wonder if we could use a lower dose though.

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  • sackshandmade
    sackshandmade Member Posts: 1
    edited August 2022

    looking for general i

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  • Anotherone
    Anotherone Member Posts: 633
    edited August 2022

    my oncologist told me that the progression I experienced is unlikely due to no treatment- if it was it would have been in the same area, ie in chest. Most likely it would have gone for brain anyway. May be she told me so to alleviate my consciousness reproaches - I am just telling here what she said.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2022

    tbh, I believe that your doctor is correct, anotherone. I would think the cells had already traveled before you stopped. Not that I know more than the doctor, but based on everything I have been told for these five years….yes

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  • Elderberry
    Elderberry Member Posts: 993
    edited August 2022

    anotherone: I was celebrating your earlier post when I saw this one. *&^&#^@#) Cut yourself some slack and believe your MO.


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  • cyathea
    cyathea Member Posts: 338
    edited August 2022

    anotherone, this news of the brain progression must be very hard. ((Hugs))

    We don’t really know enough about cancer, do we? My breast surgeon thought like your MO—that once there was a lesion on my spine that the cancer was systemic and that it could re-group and come back anywhere. Sometimes treatment works and sometimes it doesn’t, which is why everyone’s struggle is slightly different. I’m glad you had a break from treatment and I hope that means your body can help you fight the brain mets.

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  • Elderberry
    Elderberry Member Posts: 993
    edited September 2022

    anotherone: am sorry that your joy was so short lived. But the MO is right, I am afraid to say. It was just there waiting to pop up with or without treatment, Still -- that sucks


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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2022

    anotherone,

    I am sorry for your news as well. After 11 years of mbc, I sometimes feel very optimistic about progress that has been made in understanding mbc but at other times it just seems like a crazy random mystery. Regardless, don’t beat yourself up because in reality, who knows? I wish you all the best.

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