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

ER+, PR-, Her2+ Roll call

Options
2»

Comments

  • margun
    margun Member Posts: 385
    Options

    Gigicommon- thanks for your answer. I am triple positive and surgery showed no lymph nod involvement. I am waiting for path report for margines. Your tumour is 1 cm so I do not know why you are mentioning stage2 in your history? Your answer gives me hope that I may avoid radiotherapy. I have to take already herceptin and hormon pills with probably some side effects

  • Gigicommon
    Gigicommon Member Posts: 58
    Options

    My tumor was actually 1.7cm but when i put it in my profile it rounded down to 1.0. I also had one positive node. When I was diagnosed I was 2A but the staging guidelines have changed since then.

    I was convinced radiation was in my future. I was so happy when I was able to avoid it. Instead, I'm on Anastrozole for 10 years. My most significant side effect is stiffness when I try to stand after sitting too long. Keep me posted on your progress..

  • missouricatlady
    missouricatlady Member Posts: 894
    Options

    This is a hopeful and interesting article about immunotherapy drugs, which, if I am not mistaken, is Herceptin. My doctor calls it an autoimmune drug, so I could be mistaken, but it is still hopeful.

    https://health.usnews.com/health-care/for-better/a...

    I have 5 infusions left, Herceptin and Perjeta. I hope you are all doing well. Not all people have side effects from their hormone pills, and I wish I were one of them. I am trying different supplements, and sleeping with a bar of Irish Spring to help my nightly leg cramps. I've tried the Leg Cramp pills from Walmart, which help, and drinking tonic water with quinine. Gigicommon, I am grateful you avoided radiation. Good deal! Hugs, Lisa

  • TJF
    TJF Member Posts: 5
    Options

    I have IDC stage IIA, my onco MDs are recommending Paclitaxel (Taxol) and Trastuzumab (Herceptin) weekly for 12wks and then Herceptin every 3wks for 9mo followed by hormone therapy& radiation. I received my prior auth for chemo today and they stated the above regimen was recommended for T1 by the NCCN. Has anyone else been treated with Taxol & Herceptin for a stage IIA IDC?

  • missouricatlady
    missouricatlady Member Posts: 894
    Options

    Hi TJF, I was treated with TCHP (docetaxel, carboplatin, trastuzumab, and pertuzumab), 6 treatments, then HP to equal out a year, I have 2 of those left. Wishing you the best. Lisa

  • Shelligirl
    Shelligirl Member Posts: 61
    Options

    TJF, what country are you in? I begged for Taxol, but was told that the standard of care in the US is TCHP. Docetaxel and Herceptin can be given together every three weeks, which is convenient, but with Docetaxel there is a risk of permanent hair loss.

    Are you planning a lumpectomy? I was told radiation might be avoided if I have a mastectomy.

    Missouri Cat Lady, I just finished my 4th infusion this past Friday. My 1st was the worst, so I didn’t think I would get this far, but I am doing better each time. Looking forward to Dec 6th and to be done with this phase. I will have surgery then 7 months of Herceptin and Perjeta every three weeks.

  • missouricatlady
    missouricatlady Member Posts: 894
    Options

    Shelligirl, good for you, doing better each time, that's great, you only have 2 left too! I am so very thankful for Herceptin. The doctor that invented it is still around, at UCLA. Best wishes to you!

  • TJF
    TJF Member Posts: 5
    Options

    I am in the US. My journey so far has be an extreme roller coaster ride and I have began to question all decisions about my care. I will also be getting Herception with the Taxol but my original stage was II and I'm just wondering if Taxol is too light. Trying to trust they are making the right decisions. I did have a lumpectomy on 9/3 but then had to have another surgery on 10/7 for a 2nd attempt at a sentinel node bx and a port placement.

  • missouricatlady
    missouricatlady Member Posts: 894
    Options

    I wish I knew the answer to that, TJF. Sorry you are having to go through this. If you don't get an answer, you might ask on the Triple Positive board, there are folks on there that could help, I think. Hugs, Lisa

  • corvidae53
    corvidae53 Member Posts: 2
    Options

    Hello Everyone ~~~

    I'm new to this site, so hope I'm posting correctly!

    Dx 10/9/19 IDC left breast Stage I or II, not sure. Tumor is 2 cm.

    HER2+ ER(+) PR(-). Genetic testing for mutations on BRCA1, BRCA2, and around 12 other genes came back Negative.

    According to the MRI, there is no lymph involvement, but ...

    Here is my dilemma: My oncologist is INSISTING on chemo before surgery and I don't want to do it that way!

    I am definitely having a bilateral mastectomy (and my surgeon knows this). So, having chemo first (to shrink a tumor to prepare for lumpectomy) is irrelevant because all of the breast tissue is being removed:

    AND at surgery the lymph nodes would be assessed and the Oncotype Dx test could be done, which would instruct more specifically about the appropriate course of chemo/hormonal therapy, right?

    A study I read says there is a 75% greater chance of survival in women having chemo within 30 days after surgery; why not have it then? Studies show that chemo should start within 120 days of diagnosis for greater survival rates. If I got my surgery within the next month, I would start receiving chemo well within that range.

    I would greatly appreciate some more/different info that would help me make this decision!

    Many thanks!

  • specialk
    specialk Member Posts: 9,221
    Options

    corvidae - sorry to welcome you here, but this site is a great source of info and support! Generally with Her2+ and triple negative disease, doing chemo first is not driven by a need to shrink the tumor for a better surgical outcome, but rather by a need to check the efficacy of the medications being used. This has long been the case for triple negative breast cancer patients since they don’t have anti-hormonal therapy to rely on adjuvently, but is a more recent trend for Her2+ due to the availability of Perjeta for early stage patients in late 2013. Doing chemo first was required for those receiving Perjeta and then became more of the norm for tumors that are in the 2cm range, or for those who are node positive. OncotypeDx is not done for Her2+ patients as it’s purpose is to determine whether there is benefit of adding chemo to anti-hormonal therapy only for ER+/Her2- patients. It is not used to determine the type of chemo or the type of anti-hormonal therapy. Mammaprint testing is available to Her2+ patients but all of us with tumors larger than .5cm are recommended to have chemo, so this type of testing is not done since it would be redundant. Genomic testing for Her2+ patients is also unlikely to be covered by insurance for this reason. The studies you are looking at regarding time between surgery and chemo are specific to survival benefit of that margin. Beginning chemo 30 days from surgery has the best survival percentage, that benefit diminishes the farther from surgery you get, with diminishing demarcations at 60 and 90 day. Something to consider is that there can be unforeseen surgical complications, such as healing issues or the need for additional surgery, which can push the start of chemo further out. This happened to me and was totally unanticipated! I had no underlying medical conditions or indicators for trouble. I had 5 surgeries in the time between diagnosis and chemo, and began chemo 114 days after my bi-lateral mastectomy, and 147 days from diagnosis. For an aggressive subtype like Her2+ you don’t want an uncontrolled delay. Please let me know know if anything I’ve written prompts a question. Wishing you the best.

  • Germangirl16
    Germangirl16 Member Posts: 18
    Options

    Happy to see we have our own forum. Diagnosed 7/16, underwent two surgeries(lumpectomy and reexcision), 3 months of weekly taxol/herceptin, 33 rads, and tried every aromatase inhibitor. Gave up after a couple of years. Mammos have been stable since 2018. Now have some new changes in original site, and scheduled for biopsy 9/3. Also will see oncologist 8/31 to get back on AI's per my surgeon recommendation. In hindsight, 1) wish I would have opted for mastectomy and 2) not given up on the AI. Even if biopsy is b9, this seems like a never ending roller coaster!

  • Dolly2019
    Dolly2019 Member Posts: 19
    Options

    hi guys,

    My mum was recently diagnosed stage 4 triple positive de novo.

    I’m looking for any advice about treatments.

    1. Is she going to be on chemos every day of her life? I think this is what’s upsetting her most. Or will she have options for doing Herceptin alone?

    2.Also has anyone here had their treatment of herceptin and perheta injected rather than by infusion? I had read somewhere this was possible?

    3. Mum is 83 and finding this all very difficult. I’m keen to find out as much as possible to reassure her.

    Thanks

    D (five year survivor of BC myself

  • illimae
    illimae Member Posts: 5,571
    Options

    Dolly, I can only speak to US standards but traditional chemo is only 4-5 months, then it’s Herceptin and Perjeta (H&P) alone every 3 weeks forever. The good news is that most people don’t have any issues with H&P, I don’t.

    I have no experience with the H&P, it’s fairy new.

    I’ve personally been doing H&P for almost 4 years now. It works great and I live a pretty normal life.


    Good luck :)

  • Dolly2019
    Dolly2019 Member Posts: 19
    Options

    Thanks Illimae, that’s reassuring to hear that she’ll be maybe not stuck too long on chemo. I think that’s been her biggest fear.

    I read out your response to her and she seemed quite happy to hear you say you’d done four years so far in H&P.

    I was under the impression that it wouldn’t work for anything more than a year or two? But them I’m new to this herceptin thing as my cancer was only Er and Pr positive.

    I’m so glad to hear your responding so well to your treatment. I watched a recent video on the Nalia Show where a Her2 woman’s was 21 years out of her initial metastatic diagnosis?!!!! That’s just blew me apart.

  • illimae
    illimae Member Posts: 5,571
    Options

    Dolly, tell her I did my 1st 5k walk-in on chemo too and for the first 2 years I worked (except chemo day). It affects people differently but if you can maintain some small activity, it seems to help.