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Awheeler
Awheeler Member Posts: 6

Good afternoon,

Hi, I’m new here. Just recently diagnosed de novo stage iv her2+ metastatic breast cancer with bone mets.
I have 6 rounds of chemo and herceptin and projeta indefinitely.
I’m on my 2nd round and need to hear some positive stories. I have 3 kids 6/4/2.

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2020

    Hi Awheeler, and welcome to Breastcancer.org,

    We're so very sorry to hear of your diagnosis, but we're so glad you've found us. You're sure to find our amazing Community an excellent source of information, advice, encouragement, and support -- we're all here for you!

    We know it's overwhelming right now, but take one step at a time. You're sure to hear lots of great success stories here that will give you inspiration and hope.

    We also wanted to point out the Bone Mets thread, where you can talk with others with a similar diagnosis. Also, there's a De Novo Stage IV thread where you can meet others who have been in your shoes. And, since you're kids are so young, we assume this forum would be good for you: Young With Breast Cancer. Introduce yourself to meet other young moms managing a breast cancer diagnosis.

    We hope this helps and that you get some answers and support soon. Please let us know if we can do anything at all to help!

    --The Mods

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2020

    hi there - Sorry you have to be here but welcome to the board.

    I'm also HER2+ with bone Mets only. Three years in and “no evidence of active disease" for over a year.

    I responded right away to Taxol-Herceptin-Perjeta, with no serious or lasting side effects. Last year, a single bone met became active . I was referred for radiation, which put me back to NED status.

    Like you I continue on H&P indefinitely...I get the Herceptin shot and a perjeta infusión until my center starts giving the new shot that combines both. Im also on anastrozole because I'm triple positive.

    HER2+ with bone-only mets has a pretty good prognosis if you respond well to Herceptin. Many of us get a good long run on first line treatment and there are still a few more good options if/when it fails.

    A few stage IV ladies from the original Herceptin trials in the 1990s are still alive, that's about as successful as it gets 😊

    I consider myself “lucky" although of course I don't take anything for granted. I live an active life and other than achy joints and some fatigue now and then, I don't feel hugely impacted physically by my treatments or the disease so far. The only thing I'd truly love more, is if I didn't have to be tethered to cancer center appointments every three weeks.

    I've travelled more and spent more quality time with family since diagnosis than I did in the previous ten years.

    Life didn't end with my diagnosis —- there's a thread here with a title like thatand it's one of my favorites.

    https://community.breastcancer.org/forum/8/topics/818931?page=109

    I hope you have the same response to treatment as I did and you get many more years with your babies.




  • moth
    moth Member Posts: 4,800
    edited September 2020

    Hi Awheeler, sorry you find yourself here but if it helps at all - & honestly, I know it won't help because realistically I know it all sucks so bad - I would trade in an instant for HER2+ and bone mets only. If you have to get stage 4, I think it's as good as it gets. Do jump in on some of the specific threads (like the bone mets, de novo or herceptin/perjeta etc threads) or come hang out in Mel's living room https://community.breastcancer.org/forum/163/topic... where we talk about everything and nothing at all :)

    hang in there. We just need to keep kicking this cancer can down the road until the next treatment


  • Arc66
    Arc66 Member Posts: 9
    edited September 2020

    hi Awheeler,


    I just joined today. I am coming up to 6 years (March 2021) living with stage IV cancer to lungs and bone. I am estrogen positive and her2 positive. I am on Herceptin and Perjeta every 3 weeks. With zometa every few months and I take a daily anastrozole. I did nine rounds of Taxotere back in 2015 rather then six. Life is good and all is well. A few side effects but everyone is different so just go with your flow. My only suggestion is to take exercise everyday (walk), eat well and laugh a lot.


  • Moderators
    Moderators Member Posts: 25,912
    edited October 2020

    Welcome, Arc66! We're so glad you joined us here, and thank you for sharing your story. We wish you the best and look forward to seeing you on the boards!

    The Mods

  • hjernt
    hjernt Member Posts: 24
    edited October 2020

    Hello!

    I could almost copy Olma's post as we are so similar. I am Triple Positive with bone mets. I had 3 months of chemo and then a lumpectomy and ovary removal in July this year.

    I am happy to share that a recent bone scan showed No Evidence of Disease in my bones!

    I think there is a little in the original breast but since I will stay on H and P forever, the plan is to keep that at bay. I'm also on Anastrozole. I am also tolerating all the meds pretty well! I have infusions every three weeks. Looking forward to a combo shot being available here.

    This diagnosis is scary but I try to stay even keeled, not going to high or too low. I am also using this as a kick in the rear to LIVE more. Of course I need to wait for COVID to end. Honestly I have more energy now than before so I need to go out more, engage more.

    You can do this!! These boards are a lifesaver.

    All the love, Heather

  • Partyoffive
    Partyoffive Member Posts: 188
    edited October 2020



    Hi

    I’m sorry you find your self here it’s not a place any of us want to be. I use to think success was being financially solvent,having a big home,and kind independent children(that one is still true) but now I measure my success by how strong my body is and how many stable scans I have(lost count of those) I am almost 7 1/2 years out from a de nova mbc diagnosis and fingers crossed I will find out Monday that I’m still successful at being stable! I wish you the best of luck and this site is the best for support and info.

    Kristin

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