It's Back

mainegirl
mainegirl Member Posts: 62
edited July 2016 in Stage IV/Metastatic Breast Cancer ONLY

I sure didn't want to be on these Discussion Boards again; especially for a recurrence, but I'm afraid after 3 years post treatment it's back. My lymph nodes in the chest and under the collarbones have been biopsied and are positive. I'm not sure if I should be on a different thread so forgive me...I did learn the receptor status and the cancer has mutated some as the ER/PR status changed %'s. I see my Oncologist tomorrow for the treatment plan. My DH and I are planning to go to Boston for another opinion and see if there are trials I might be qualified for. Initial comments by Oncologist were I'd probably go on Perjeta and Herceptin. I just hate the thought of being sick from chemo again. I had a very hard time with my previous chemo treatments. How do people life a normal life when you're back on chemo for the rest of your life??

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  • rosetide
    rosetide Member Posts: 29
    edited July 2016

    Hi Mainegirl,

    Sorry for your news. I am also dealing with the cancer coming back and will tell you that I felt the same way as you! I hated chemo, it was complete torture for me the first time. I am taking herceptin, perjeta, and taxotere right now, I am going on to treatment 6 next week it is given every 21 days. I will say for me it takes 9 days to get where I feel comfortable getting out and about. I also live in Florida where it is extremely hott right now and we are advised not to be out unless you have to. I will tell you it is tough but it is doable! Once you get your head around what is the plan then survivor mode kicks in again. Stay away from negative people! I have had quite a journey this time with this but I take it day to day. Stage 4 is way different then Stage 2, when the doc says treatments forever you think what? there is no way! There is a way, day by day, don't think any further lol! If you want to talk or discuss things please feel free to message me. This is a scary journey and I find myself reaching out on here so that I can find someone that understands what my world is. Hoping you have nice day!


    Rosetide:)

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  • mainegirl
    mainegirl Member Posts: 62
    edited July 2016

    Rosetide,

    Thank you for your encouraging response. It really helps. I did get through this before "one day at a time" so I need to think that way again. I will reach out when I know the plan. Wishing you the best.

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited July 2016

    Mainegirl, my story is the same as Rosetide. Exactly 2 years from the last rad tx I was dx with innumerable liver mets.

    A/C did me in the first time. I thought it was legal torture. I just completed 6 infusions of Taxotere. While on Taxotere, spine mets starting popping up. MO said they must of been there from the beginning, just not showing up.

    "One day at a time"...... That is our new reality. I have been sick for 4 months now, BUT I am confident that I will get some quality time before the liver goes wild again. I had a Pet scan this morning, should see the results online by tomorrow. Many of the stage 4 ladies are pain free, and living normal lives. I am amazed that some have never had chemo.

    The hardest part has been watching my adult kids grieve & constant worry.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited July 2016

    Holeinone, As one of the Stage IV who have never had chemo, I think it is mostly women who were Stage IV right out of the box so have never had other Tx, which qualifies us for the AI drugs first. Unfortunately, after we exhaust all the available AI's we will all wind down to chemo, not something I like to contemplate.....For all of you ladies, I'm very sorry about your reoccurence!

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  • mainegirl
    mainegirl Member Posts: 62
    edited July 2016

    holeinone, how brave you must be. Not that you've been given much choice. I also have a grown daughter. It is breaking her heart. We lost her step dad to cancer 8 years ago, so this nightmare is returning. So we will encourage each other and see the beauty of each day.

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  • car2tenn
    car2tenn Member Posts: 515
    edited July 2016

    Yep here I am diagnosed out of the box with stage 4...I don't understand why they don't do the real chemo early on. Of course I don't understand a lot of this. Anyway, I am in remission after 12 weeks of taxol/herceptin and awaiting a month from now a PET/CT to tell the oncologist where I go next. I truly hope I am still in remission...I have only had 2 months of remission and it has been such a wonderful ride. Prayers to all that are struggling with these issues/ Carolyn from Music City

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  • mainegirl
    mainegirl Member Posts: 62
    edited July 2016

    Artiststheart, thank you for your comments. I hope AI's work for you for a long time.

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited July 2016

    Mainegirl

    I wish our first successful treatment would work permanently for us. I was stage IV out of the gate with bone mets, ER+. I got 5 stable years out of letrozole after doing tac chemo for 10 months. I had to do chemo first due to having inflammatory bc.

    Now pituitary met & liver mets. A/A, Faslodex, taxol & Xeloda did not work for me and gave me terrible side effects. I'm still doing Xgeva only now for the bone mets. Need another PET scan to see what will be up next. Not looking forward to any chemo.

    Terri

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  • mainegirl
    mainegirl Member Posts: 62
    edited July 2016

    ibcmets, I'm so sorry about your diagnosis. You've been a real fighter. I pray your PET shows nothing new. Thanks for sharing.

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  • sueopp
    sueopp Member Posts: 1,541
    edited July 2016

    Hi Mainegirl, very sorry that you must have treatment again. Yup, it is daunting to think that you will be on treatment from now on. I have been on "the hard stuff" for stage IV disease for 5 1/2 years, and it is completely doable (herceptin & perjeta). There's a H&P thread where you will get lots of good news. Good luck- SUE.

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  • zarovka
    zarovka Member Posts: 3,607
    edited July 2016

    Mainegirl - look closely at clinical trials. Stage iv treatment especially for her2+ and triple negative is changing as I type. The hard stuff will unlikely be the best stuff soon. Imo, right now it's not so much about roughing it through chemo as it is about staying healthy enough to be ready for better AND gentler treatments to come on line.

    Getting to Boston for second and third opinions is brilliant. Even if it doesn't change the first line treatment, these conversations and relationships will likely be game changing down the line.

    Her2+ folks have been catching some breaks lately. Make sure you are positioned to be part of it.



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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited July 2016

    Its a blow when it comes back isn't it? Prejeta and Herceptin is a really easy protocol. I have had little problems with this one. You can do well for many years. I am on my 8th with mets.

    Onward and upward. Just take it one day at a time.

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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited July 2016

    Oh Maine...it totally stinks! I've had 3 dx (3rd, stage 4). They said chemo for the rest of my life...which became Navelbine, Herceptin, Perjeta for 22 months, H/P for another 9 months & just Herceptin for the last year. They mentioned 5 months...3 years, 7 months ago! Of course, every day we carry the weight of this stupid disease in our being...we just try to lighten the load with true living. You can do this...you will do this...and we'll be walking beside you. XOXO

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  • mainegirl
    mainegirl Member Posts: 62
    edited July 2016

    wow, all you ladies are amazing. I'm so encouraged to see the number of years you've all been doing this. I will be ok-ready to get back in warrior mode. Thank you for taking the time to encourage me.

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