New Stage 4 Diagnosis

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Nina27
Nina27 Member Posts: 77

Hi everybody,

After getting my all clear and told I was remission in November 2016, I have just been told that the cancer has spread to glands in my chest, liver and ovary... I have to go for further biopsies to determine my new treatment plan.

I was on herceptin every 3 weeks which never helped.

Is there hope?

xx

Comments

  • Pessa
    Pessa Member Posts: 519
    edited February 2017
  • zarovka
    zarovka Member Posts: 3,607
    edited February 2017

    Nina -

    You want to find a thread with a lot of HER2+ people and ask them about the sequence of treatment options after Herceptin. You might drop in on the Herceptin thread. Most people favorite certain threads and only hang out on those threads. Also, ask BestBird for her guide to MBC treatment options and read up on the current state of HER2+ treatments.

    In general, the options for HER2+ are improving faster than other types of MBC right now. I usually flood people with specifics, but I can't speak to HER2+ cancer well because it is not what I have.

    If they are insisting on biopsies, they are doing the right thing.

    It's terrible to be dealing with this news, but I expect you will get a treatment plan lined up soon and it will work and things will get back to normal. In the meantime, take care of yourself.

    >Z<

  • cliff
    cliff Member Posts: 290
    edited February 2017

    a biopsy is the way to go, mamograms and scans do a lot, but its like telling if the milk is bad without opening the bottle. a tissue sample in the lab is conlusive.

  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited February 2017

    Nina,

    Welcome to the club no one wants to join. That said, the people here are fantastic, and have been a life/mind saver for me.

    I'd suggest that you PM Bestbird and ask for a copy of her guide to MBC treatment. It's free, and extremely well researched. She needs to publish that bad boy, but she updates it so frequently, I can see how that would be limiting if it were in paper form.

    If you weren't scanned before treatment, there's no way of knowing whether the metastases were present then, or popped up after treatment. So, please don't think that you "failed" Herceptin. It might have been trying to hold the fort, but needed assistance from other treatment modalities.

    Since you are getting new biopsies, inquire about genomic testing to see what treatments you could respond to better. I do not know what is available in South Africa. If you find out, please let us know so we can throw it into the database of knowledge here.

    As for hope? Hell, yes, there's hope. Every day we are alive, new treatments are being developed. Check out JeninMichigan. She is a HER2+ lady who had a few bobbles at the beginning of her treatment, but has been NED for years now.

  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited February 2017

    i have been stage 4 for over 4 years. I had to stop herceptin treatments due to heart issues. I have been on Xeloda for 4 years and have been NED for pretty much the whole time. PM for more Indio if you'd like. There are treatments other than herceptin that can work. Don't give up. Go day to day, breath, and know you will feel slightly better once you have a plan in place.

    Hang in ther

  • Andrea1111
    Andrea1111 Member Posts: 14
    edited February 2017

    Dear everyone,

    both underarms have positive and two spots on my chest wall and two spots behind my chest wall...all reported lymphnodes and skin. docs calling it stage IV metastatic and im taking leterozole and Ibrance now. I am so scarred and am hoping the meds will reduce or kill these spots. I want very much for the surgeon to remove everything but they want to treat the blood now. does anyone have any encouraging words?? my docs are treating me different now....I can feel that they have been defeated or something...

  • cliff
    cliff Member Posts: 290
    edited February 2017

    the blood is more immediate a problem. without it, the other treatments dont work. hopefully they are up to date on the latest treatments and diagnosis methods. one step at a time.

  • pinkninja9560
    pinkninja9560 Member Posts: 238
    edited February 2017

    Nina,

    I'm in the same boat. Diagnosed er/pr- her2+ July 2014, did tchp neoadjuvent then had bmx dec 2014, got the all clear, no lymph node involvement. I've been living it up for the last 2 years thinking I'm Ned, then out of nowhere, my be got mets to both lu go, both kidneys, liver, one adrenal gland and some black es. I went for a MRI today to see if it went to my brain. I started weekly taxol last week and go again tomorrow.

  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited February 2017

    I am sorry to learn of you newer ladies getting diagnosed with mbc. I am not Her2+ but as mentioned, you will get great advice, information and insight from ladies on the forum who are dealing with triple positive.Hang in there. Many hugs to all of yinz.


  • Heidihill
    Heidihill Member Posts: 5,476
    edited February 2017

    pinkninja, I'm praying it's not in your brain, but even there you have good treatments.

    ajones, I don't think your docs should be feeling defeated. They just need to adjust to a new set of circumstances, a new playing field, and that's probably what they're doing. Lymph node and skin metastases would still be amenable to local treatment, although I understand if they want to nip everything in the bud with systemic ones. I hope you have a great response.

  • JHarbolt
    JHarbolt Member Posts: 1
    edited March 2017

    Hi, I'm stage four right BC spread to bones and liver. I've had no surgery, chemo, or radiation. My treatment is shots and Ibrance. I have a 25 year old special needs daughter. I'm concerned about what will happen to her, when my time comes. Her step father assures me she will be taken care of. I'm thankful for each day. I believe in God and prayer.

  • Moderators
    Moderators Member Posts: 25,912
    edited March 2017

    Hi JHarbolt-

    We want to welcome you to our community, although we're so sorry to hear of the circumstances that have brought you here. You've come to the right place for support as you begin down this road, and you're in good company with women who understand what you're dealing with. Please let us know if we can be of any assistance, you and your daughter are in our thoughts.

    The Mods

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