Fill Out Your Profile to share more about you. Learn more...

No treatment and no progression

anotherone
anotherone Member Posts: 542

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.

Comments

  • candy-678
    candy-678 Member Posts: 4,084
    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.

  • olma61
    olma61 Member Posts: 1,016
    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

  • Bonnie7
    Bonnie7 Member Posts: 16
    edited June 2022

    Fantastic so pleased for you! Go you! 👍

  • olma61
    olma61 Member Posts: 1,016
    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.

  • anotherone
    anotherone Member Posts: 542
    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.

  • olma61
    olma61 Member Posts: 1,016
    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

  • gailmary
    gailmary Member Posts: 425
    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.

  • sackshandmade
    sackshandmade Member Posts: 1
    edited August 2022

    looking for general i

  • anotherone
    anotherone Member Posts: 542
    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.

  • olma61
    olma61 Member Posts: 1,016
    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

  • elderberry
    elderberry Member Posts: 1,058
    edited August 2022

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


  • cyathea
    cyathea Member Posts: 330
    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.

  • elderberry
    elderberry Member Posts: 1,058
    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


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,724
    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.

  • anotherone
    anotherone Member Posts: 542
    edited October 2022

    I do not beat myself at all about it tbh - my oncologist just may be made that comment in case I did which she could do as she is an old fox. That precisely is the right thing to say - but to be fair to her may be that is what her belief is indeed and that is the max we can want and that is why she did voice it unprompted and categorical.

    I have been off treatment since February- 9 months and I have cycled to work (not after my second brain operation in October but that has not been long and it is autumn and blah weather in this hemisphere), travelled, had sex, had squash and table tennis, done all the normal housework and otherwise lead the normal life. Bizarre.

  • nkb
    nkb Member Posts: 1,561
    edited October 2022

    Anotherone- so thrilled to hear how well you are doing!! I once stopped therapy for 2 months and felt so good- realized that I had incorporated all the side effects and they seemed like my normal.

    Mine seems to come back in the same bony places also when I progress (except for a hip that got radiated)

    I wish you continued success!

  • anotherone
    anotherone Member Posts: 542
    edited October 2022

    thank you nkb.

    One does not know anymore the normal or not - I compare it to a washing machine - so many times you turning you do not know where is up or down ...

    Thank you for your good wishes.

    I compare this cancer to skating - we manage to somehow keep that balance and even do whatever beautiful figures; one day we touch the ice and fall so as the surroundings we are in-falls are to be expected...

    But until then we dance as shetland pony said ...