ER- PR- HER2+ end of herceptin - where to from here?

katykaty
katykaty Member Posts: 29
edited March 2018 in Stage III Breast Cancer

I’m coming to the end of the herceptin phase and wondering where to from here. I see many posts from others in my situation who have gone on to Xeloda or nerylynx, or had zometa infusions. I’m yet to speak to my MO but wondering what others have heard is the best standard of care going forward. Would love to hear what those of you with similar diagnoses have been recommended. Thanks in advance!

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  • cindyanne
    cindyanne Member Posts: 44
    edited February 2018

    I am also interested in this. I finished my herceptin 01/08/2018. Now I will see my MO and my BS every six months. That's it.........feels scarey.

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  • DATNY
    DATNY Member Posts: 358
    edited February 2018

    Same here, I am scheduled for nothing else. I have positive node an lymphatic invasion, and statistics don't look good.

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  • DATNY
    DATNY Member Posts: 358
    edited February 2018

    bump

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  • BellasMomToo
    BellasMomToo Member Posts: 305
    edited February 2018

    I have had no other treatments since I finished Herceptin in 10/2017. My MO isn't recommending Nerylynx for me -- she said that it doesn't seem to really benefit those who are ER-/PR- .

    It felt strange to not have any more treatments, but at the same time I'm glad treatments are over.

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  • lkc
    lkc Member Posts: 1,203
    edited February 2018

    hi all,

    I did Zometa infusions, exercised, followed the breast cancer diett with lots and lots of EVOO, started taking supplements, and reduced my stress levels big time.

    Hugs to you all.



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  • katykaty
    katykaty Member Posts: 29
    edited February 2018

    It will feel strange and a little frightening not to be doing anything medical! Trying to exercise more and reduce the stress levels - those are the areas I need to improve on I know. I eat pretty well as I love cooking healthy with lots of EVOO. What do the zometa infusions involve lkc? How long did you have them for

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  • DATNY
    DATNY Member Posts: 358
    edited February 2018

    Thank you all for sharing!

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  • lkc
    lkc Member Posts: 1,203
    edited February 2018

    hi Katy, Zometa is a bisphosponate. Which is routinely to women with osteopenia and osteoporosis. I opted for this to help ward off bone mets. I received infusions every 6 mos. for a few years. There can be some significant side effects. For me , it was the right decision.
    Also, now there are a few more options for bisphosponate rxs.
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  • jo6359
    jo6359 Member Posts: 2,279
    edited February 2018

    I just started 2/16 TCHP 6 rounds every 3 wks then herceptin and perjeta every 3 wks for t2 weeks. I am already thinking ahead. Im terrified of reoccurence and mets. My Mo said additional tx would be based on how well the chemo and targeted therapies worked. What is EVOO? I was a vegatarian but once diagnosed with bc in dec. I added salmon and fresh tuna 2-3 x a week. I just felt i needed more protein to deal with this disease. Good Luck.

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  • lkc
    lkc Member Posts: 1,203
    edited February 2018
    extra virgin olive oil!
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  • jo6359
    jo6359 Member Posts: 2,279
    edited February 2018

    ikc- thanks. Im in a fog. Lol

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  • katykaty
    katykaty Member Posts: 29
    edited March 2018

    Well - last day of herceptin today. Had a clear mammogram on the left and I don’t need to see MO for 2 months and surgeon for 3. A little scary now - feel like I’m flying without a net. I think I will now look to reconstruction - time to put Humpty back together maybe. Thanks for all your posts - I’ll be staying tuned...

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  • Spice57
    Spice57 Member Posts: 4
    edited March 2018

    I had the same feeling of abandonment after chemo (Taxotere and Carboplatin), and the adjuvant Herceptin for a year. After 7 years I was told by a NP I would be moved into the survivorship program, which meant one appointment.

    I was diagnosed at age 51 with Rt. DC IS, IDC 6 cm, grade 3, Er-PR- Her2Pos.

    Had the Rt mastectomy, chemo, no rad. After Chemo was completed did a prophylactic mastectomy on left (unaffected side) mainly not to have to worry about the left breast.

    I am out 8 years this May, but just discovered a mass along edge of areola extending into surrounding skin. (Vanity at 51-chose nipple sparing procedure.) I Will be following up on March 7th at Virginia Piper Cancer Center with surgeon. Hopefully, it's only scar tissue. (Wiped out on Minnesota ice last Feb 2017 and landed on RT hip and Rt implant-they don't BOUNCE! )

    FORTUNATELY, did not rupture the implant.

    You can imagine the PAIN!!

    DO your research and question Drs suggestions for all aspects of your care. You can always contact Mayo Clinic (closest to youf home) for second opinions.

    Namaste


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  • katykaty
    katykaty Member Posts: 29
    edited March 2018

    So glad to hear you have had no issues up til now. It certainly sounds like your ice escapade may be the reason for your mass on the left - I will certainly be hoping so for you! I was 52 at diagnosis and going down the path like you now looking at reconstruction. I think I too will do the prophylactic on the left - and hopefully save some worry down the line. Thanks for your story - and keep us posted on you appointment outcome tomorrow

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